PKD for HeatherT

Missing the Blog

2011-02-08T17:26:00.000-08:00

I miss this blog. What's happening lately? Well, I celebrated my 3-year kidney anniversary in December 2010 so that's good. I'm still feeling very good overall, but there are some new, irritating side-effects (?) to share.

1) Hair loss. Serious hair loss. It started in September 2010. I'm wearing a "top piece" wig to cover my bald head. I've lost most of the hair right on the top of my head. I still have long hair on the sides and back of my head. Freaky. Initially, the dermatologist (#3) thought this was due to the mysterious rash I'd started seeing her for in July. Now my nephrologist suspects it's a side effect of the Prograf. I have an appt with her in 2 weeks. Fingers crossed.

2) Skin rashes. Starting in January 2009, I started getting a rash. Ultimately, it covered nearly ever part of my body. Little pink circles and RELENTLESS itching. Thank goodness for prescription antihistamines and pretty scarves...and long sleeves. Dermatologist #2 diagnosed me with pityriasis rosea. I finally began to see improvement in late April and it mostly cleared up by June.

3) Skin rash #2. I initially thought the pityriasis rosea was returning, but it was different. Instead of pink circles, there were large areas on my tummy and back where every hair follicle was inflamed, pink and itchy. Derm #2 was stumped and her office staff was rude so I looked for derm #3. She was great, initially, and was excited to solve the mystery. After several visits and 2 skin biopsies, there was no firm diagnosis. Then the rash started changing. The spots were scaly and some would fade only to leave small (1-2mm) bumps where the spots were formerly. This is also about the time my hair started to fall out...leading us back to #1 above.

This rash has continued to evolve. I still have pink spots that start out scaly and then just stay pink for a while until they fade away...after months. They itch, too. In addition to this, I have the follicle inflammation and even infection, but only in certain areas...armpits, breasts and pubic area. The inflammation makes the hair fall out. So no hair there and no hair on my head.

I'm losing my faith in Derm #3. When I asked her about the rash and her thoughts on it, she did one of those classic doctor brush-offs that avoids providing any real, useful information. She doesn't know why my hair is falling out and she can't explain the rash so instead of doing more tests or referring me to another doctor, she is treating the symptoms. Again, I'm hoping my Neph can help and am seeing her in 2 weeks.

I don't know if other post-transplant patients have noticed the same, but I have observed that most specialists I see give up on my diagnosis relatively easily. They don't know much about transplant and they suggest I speak with my Nephrologist. I try to relay what they say, but they don't call each other. Derm #3 even knows of my Nephrologist because she did a residency with her, but she doesn't offer call her.

Another observation about Dermatologists. They aren't very good at clinical medicine. They seem to get into the career to make money on Botox and other money-making cosmetic procedures. When it comes to real medicine, I've been disappointed. I'm very disappointed with that field of specialty.

Hey Jack

2009-04-23T09:53:00.000-07:00

I don't think I did anything specific to get out of my rut. I think your wife can help by making suggestions and/or pushing you to do stuff. Six weeks is still pretty soon after the transplant to expect the depression stage to be over. I was away from work for 3 months - only because I took full advantage of the leave time I was given by the doctors. I could have returned to work in 8 weeks. It IS life changing so it was easy for me to dwell on my own struggle - almost feeling sorry for myself. But when I returned to work, finally, I wanted to be normal. I didn't want people to see me as a sick person. That was my priority even though I realize now, I was still a bit depressed when I came back.

I tried to return to the gym as soon as I was allowed because being fit makes me feel normal. The routine was difficult to keep up because I was such a slug for so long (even prior to the transplant I was a slacker about going to the gym). I finally hired a personal trainer to meet with twice a week. It was an investment, but well worth it because when you're paying, you're more likely to go to the gym. Being active is the best thing I know to do to feel better physically and to change my attitude. The rest fell into line as I felt stronger and more fit. When I wrote that blog at 8 months, that was when I was nearly out of my funk. It might take others less or more time, but that's how long is was for me.

Still it's been 16 months now and you feel more and more normal at every milestone: 6 months, 1 year, 14 months, etc. Especially when the docs tell you not to come in again for 3 months. Initially, I was reluctant thinking "What if something goes wrong?", but after a couple of 3 month intervals, that feeling fades. I still go in for 6 week blood tests and those are reassuring.

Something else happened at 8 months that made a huge difference. A friend of mine died of stomach cancer. He was just 36 and he was one of the phone calls I didn't return during my 3 month recovery. I never felt so awful in my life. He took advantage of every free, healthy moment during his health struggle. Visiting friends all over the states, being outdoors, training his dog, buying a new, fast car, and just generally enjoying life. I realized that my transplant was really no big deal. I mean, it's an amazing thing and a miracle that people like my cousin exist, but I'm here, I'm alive, I'm healthy and I should do everything possible to embrace the positive and the excitement in every moment. I want to DO things and being fit gives me the strength to feel capable. I think exercise is the cure for most mental struggles. (you know, that aren't chemically based). :-) The mind-set seems to follow from the after effects of feeling strong and fit.

Good luck to you in your recovery. Don't beat yourself up if it takes time to get out of a rut. You'll get back to "normal" as you are able.

8 months from surgery

2008-08-10T17:08:00.000-07:00

On August 8th, it was 8 months. Things are still going well. My kidney is functioning well. I have made some additional observations that I thought I would share.

First, don't be surprised if you become depressed after surgery. I was depressed, but not until about 3 weeks out. After my family left and my husband went back to work. At the time, I thought I was just "enjoying" my time alone and away from work. But now I realize I was depressed and avoiding most all tasks...cleaning, fixing meals, bathing, doing laundry, returning phone calls, sending birthdday cards/presents and so on. My biggest regret is not returning the phone calls. thus far, people have been very understanding, but one person did take it personally. I wish I had known this could have happened.

Second, my hair has thinned. I see new 1.5" growth at the top of my head now so I think it's growing back. I have no clue why it thinned, but it wasn't severe. Nobody noticed except me and my hairdresser.

Finally, my ankles swell when I eat too much salty food or when I am on my feet a long time. Also, if I sit in a hard chair a long time...of course my legs are short so there is a lot more pressure on my legs since my feet often don't support my legs rather they hang from the chair. Does that make sense. Anyhow, there is a significant difference in the leg swelling when I make an effort to avoid salty food.

I think I mentioned before that I get shaky sometimes. I *think* it's from the prograf, but I'm not sure. Obviously, it's worse after some caffeine, but I'm not giving up coffee. Cola I can give up though. It's only bothersome when I am at work trying to type or when I am doing some fine work, like, say, plucking my eyebrows. :-)

The doctors have had to reduce my myfortic dosage from 720 to 360 twice per day and then to 180 twice per day. They did this because my white blood cell count was getting too low. It went as low as 2.5. The Nephrologist said this is a bad side-effect of the myfortic. I go in tomorrow morning for my labs so we'll see what the latest numbers indicate.

Today is my donor's birthday so my kidney is also celebrating! It's processing a celebratory beer right now! Happy Birthday Connie!

Side Effects

2008-04-08T20:08:00.000-07:00

I can't believe how long it has been since my last post. I just decided I wouldn't make myself post when I didn't really feel like it. After all, this blog was about me dealing with my PKD and planning for transplant, not about being accountable. Today I feel like posting.

I feel mostly normal. I'm not really in shape still, but I'm back at the gym and getting in better shape every day. I haven't lost all of the post-transplant weight, but it'll happen gradually (just about 15 lbs to go.) The bummer is that I don't fit into most of my clothes and I don't want to shop for a bunch of new stuff. I'm on a 6-week plan to get back into them.

Otherwise, I am having some mild side effects. Insomnia and "intestinal problems" (if you know what I mean.) A lot of the latter. If you can believe it, my transplant coordinator suggested I take citrucel or the like to "add bulk." Why would you prescribe more fiber that is typically for folks with the opposite problem to someone with this problem? I am a vegetarian besides so my diet is full of "bulk." I have a call out to my doctor to get further advice. From what I read, it's bad to have diarrhea in the long term because it causes dehydration and, as you know, dehydration is no good for the new kidney. I'm drinking as much as I can to counteract the dehydration.

They gave me Ambien for my insomnia, but after being on it for a few days, my blood tests showed some elevated liver readings - which didn't necessarily proving any causation -- The doctor suspected the Prograf telling me that Prograf in high doses can damage the liver. The following week, my blood tests showed my liver was just fine - the numbers were back down to normal. They want to keep watching it and not make any medication changes. After that happened I decided only to take the meds I absolutely have to take. I just stay up as late as I want until I am truly exhausted so I fall right asleep. After about a week, I think I am finally adjusted to going without the Ambien. The thing is that the Prograf causes my hands to shake and my mind races...I get fidgety and can't chill. It's a bummer.

One more thing. I mentioned I'm a vegetarian, but I do eat eggs and dairy. Not a lot, but I do eat them. Anyhew, my latest blood tests included a cholesterol test. I apparently have high cholesterol: 220 total, 141 LDL and 59 HDL. The transplant coordinator told me that the Prograf can also cause elevated cholesterol levels. DUDE! I'm now trying to minimize my dairy and egg consumption since that's the only cholesterol I consume. I'm limiting myself to 1 egg per week maximum and will cut back on dairy. My only sources of dairy are whole cream in my daily coffee, low fat yogurt 2-3 days per week, cheese 3-4 times per week and occasionally I'll have sour cream with my Mexican food or cream cheese on a bagel. Not much, but I'm going to cut back anyhow. I really don't want to take a pill for cholesterol, but I will if I have to. We'll see.

New transplant research -- No immunosuppresants!?

2008-01-23T17:00:00.000-08:00

According to some research published in the NEJM, some doctors are experimenting with doing bone marrow transplantation along with kidney transplants in order to change the recipient's immune system and avoid the need for immunosuppressive drugs! Check it out:

1) News article written for the non-medical professional: http://www.reuters.com/article/email/idUSN23648705

2) New England Journal of Medicine articles:

http://content.nejm.org/cgi/content/short/358/4/362 (Volume 358:362-368, January 24, 2008, Number 4)

http://content.nejm.org/cgi/content/short/358/4/353 (Volume 358:353-361, January 24, 2008Number 4)

Exercise, Work...

2008-01-23T16:27:00.000-08:00

I don't even open my work email. It's such a relief not to have to worry about any of that. I still don't want to go back. Maybe I'll miss it soon...I hope so because I don't want to go back on a negative note. I plan to go back WANTING to go back.

I've been knitting non-stop. The transplant coordinator says the Prograf I'm taking can make my mind really active and my body somewhat -- my hands shake -- so the knitting really keeps my mind busy. It could also be that I'm not used to the clearheadedness after being so mentally muddled prior to the surgery. I think it's both. Another side effect of this...call it restlessness...is trouble sleeping. I put up with it for weeks thinking it was because of my physical discomfort, but it just got worse and worse until it was taking me 1 1/2 - 2 hours to fall asleep and then I'd wake up very easily all night long. The doctor's office suggested benadryl, but that didn't help. Then they prescribed Ambien. That's been helpful, but I worry about becoming dependent on it since is can be habit forming. Still, I want to sleep so I called and asked for a refill today. Then I did some research on sleeping meds and found something online about other sleeping meds that may not be habit forming. Now I'm wondering why they gave me Ambien so quickly when they could have given me Lunesta. I guess I'll see what they prescribe as a replacement today.

I was given the approval to do cardio exercise when I saw the doctor last Thursday. I started on Saturday with a brisk 25 minute walk. Sunday we walked a lot because we went to Ikea. It wasn't exactly cardio, but it was a lot of walking. I walked again on Monday and went to the gym on Tuesday. My first cardio walk was difficult because my thigh wound was sore and pulling. The pulling and tightness are really uncomfortable. Not painful, but uncomfortable. I stopped mid-way through to stretch a bit and was able to finish up going slowly at first. I felt stronger on Monday and didn't even have to rest mid-way through. But yesterday was the best. I did 25 minutes on the eliptical machine with my heart rate around 150 the entire time. Prior to the surgery I had anemia and I wasn't able to get my heart rate up any higher than 140 without losing my breath. I'd shoot for 138 for 30-40 minutes. I was shocked that 6 weeks after major surgery I could do 25 minutes of cardio at such a heart rate level, but with no anemia, I guess it makes sense. I'm very thankful.

5 weeks after surgery

2008-01-14T00:13:00.000-08:00

Well, it's been 5 weeks now and the time has gone very quickly. At first, my days at home were slow and long, but I have grown accustomed to it and I have something of a routine that seems to make the days go fast...unfortunately. I'm still not ready to go back to work. I could probably go back part time, but I don't feel right about it yet. I don't miss it. I thought I would miss it. If I didn't have to, I wouldn't go back. I just don't care about that career right now. In fact, right now I dread going back. I don't care if I ever see that place again. What I'd really like to do is buy some land and start an organic ranch where I can have cows, goats and chickens. I could make organic milk products and sell free range, organic eggs. Why not? Reason #1: How would I afford my meds? According to my insurance company, my prograf and myfortic alone cost $1500 a month retail. Thankfully, I pay a hell of a lot less (more like $35.) Maybe being a librarian isn't so bad.

Most of the swelling in my abdomen and leg has dissipated. I'm not sure I mentioned that the abdominal scar begins about 2 inches into my pubic hair and runs diagonally up to my right hip. You can imagine the swelling...it has been quite unattractive. I finally caved in and bought high waisted "granny" panties since all of my bikini panties rubbed on my scar. It's nice for the swelling to finally be going away.

The doctor indicated I could begin doing aerobic exercise at 6 weeks. I'm looking forward to trying to jog a bit. I'm ready. I thought I would be off the prednisone by now, but they keep having to increase my prograf to try to get me to the "appropriate level." I'm supposed to get my blood work done twice weekly so they can adjust the prograf accordingly -- twice a week, but since the lab was closed for the holidays for 2 Mondays/Tuesdays in a row, I think I got off schedule. Two weeks ago, my levels were finally good and the surgeon took my prednisone down to 15 mg per day, but last Friday, they were not good any longer. They increased the prograf again. I only have to stay on the prednisone as long as the prograf levels are too low. I believe I'm beginning to see the effects of the prednisone -- eating a lot, gaining weight, a little puffiness and being unable to sleep. I finally asked for a sleeping pill -- that has been a life saver.

Overall though, things are really really good. I feel lucky and grateful every day. I owe a lot of phone calls though since I haven't felt like talking on the phone for weeks now. There are just so many people who have called. I feel like a heel for not having dealt with it sooner. I will try to call one person every day this week...and next...to catch up.

The graft wound on my thigh still hasn't healed. It seems that a lymph gland was cut and it has been draining and draining, making it difficult for the wound to heal. Finally, last week, it stopped draining long enough to heal over mostly, but not completely. There is a lump under the scar where the lymph fluid seems to be collecting. It's sore like a bruise, but no big deal. The doctor is "optimistic" that it will heal although he did indicate that in a worst case, they have to "go back in" to fix the gland. I hope that doesn't become necessary. In the meantime, I clean and change the bandage a couple times a day. I cover it when I shower. The tape has made my skin raw so the doctor gave me this stretchy, circular netting type stuff to hold the gauze pads in place without adhesive. That was a relief as it gave my poor skin a break.

I am walking around normally, but still feel pressure in the abdominal wound. In fact, I can feel individual stitches through my skin! I look forward to being able to exercise because that's what will help me feel most normal again. All this sitting around is making me lazy. I want to get back into shape. When I go for walks I get knots in my leg muscles I am so out of shape. That's most uncomfortable when I'm trying to get to sleep. I have to remember to do a lot of stretching when I start exercising again in order to prevent the knots.

Public Relations

2007-12-23T01:37:00.001-08:00

I don't think I mentioned that a medical center public relations staff member came to visit me in the hospital. She somehow heard about my 22 hour stay in post-op and came to get my story. While she was there, we complained about the doctors not answering their pages, too. She brought a fleece blanket with the name of the medical center printed on it. She also offered my husband her business card with a note on the back that would allow free parking for the rest of our stay. We were only there for one more day, but my husband did try to use the card. The parking lot attendant didn't know what do make of it and didn't want to accept it. She even tried to take away the card, but he managed to get it back. We are planning to call her back to see what they are going to do to fix the post-op/no-rooms-available problem. Whatever. At least my post-op nurse was the best nurse I had for the entire stay. She was terrific.

I'm a bitch

2007-12-23T01:18:00.001-08:00

I have tried to let this go, but after an hour in bed unsuccessfully attempting sleep, I figured I'd get my rant out and be done with it. Before I do, I want to note that several individuals from my work have sent me very nice get well cards. I also want to note that I understand it's holiday time and people have a lot of things going on in their lives. Here's my rant:

My workplace has not sent me flowers or a card -- I'm talking about the group as a whole. The cards I mentioned before came from people in the department where my office resides. I had only worked near them for about one month prior to leaving for surgery. Previous to that I worked with 2 other departments quite closely -- for a 1 1/2 years. I would quite easily chalk this oversight up to the holidays and the fact that many of the people in those departments are big social dorks, but for one fact: Six months ago, another co-worker in one of those two departments was out for hip replacement surgery. While she was out, I chipped in to send her flowers and a card NOT ONCE, BUT TWICE. Fucking twice! While I was in the hospital, the head of one of those departments sent me an email message through the hospital staff. (They apparently have some way to received such messages.) A nurse printed the stupid thing out and delivered it to my room. Otherwise, nothing. And it's not just these 2 departments, I am faculty and the faculty chair didn't send me anything either. When I mentioned this to my mother, she was surprised. Isn't it normal that your workplace sends you at least a group card when you're out for surgery?

I have mixed feelings...I feel bad for complaining because they really don't HAVE to do anything. Also, I feel angry for being slighted. Then again, I tell myself not to take things personally -- and don't EXPECT anything. I mean, my expectations that they WOULD send a card or flowers is what is being let down right now and they aren't responsible for MY expectations. However, that doesn't mean I can easily think myself out of these feelings. And that's what's bothering me. If only they hadn't sent that other woman 2 FUCKING floral arrangements....TWO! It's just not right.

First Week is the Hardest

2007-12-17T23:45:00.000-08:00

I started feeling really good Sunday. I don't know why, but I'm not complaining. After more than a week of nausea from all of the meds, I am ready for feeling good. Here is a list of the pills I take daily:

6, 1 mg Prograf (Tacrolimus) - prevents rejection
2, 350 mg Myfortic (Mycophenolate sodium) - prevents rejection
4, 5 mg Prednisone (steroid) - prevents rejection
1, 450 mg Valcyte (valganciclovir Hydrochloride) - treats/prevents viral infections
1, 400/80 mg Bactrim (Sulfamethoxazole; Trimethoprim) - treats/prevents bacterial infections
1, 40 mg Protonix (Pantoprazole) -treats/prevents stomach ulcer/hearburn
1, 10 mg Amiodipine - controls blood pressure
1, 10 mg Mycelex Troche (Clotrimazole) 3 times a day - treats/prevents fungal infections

Also, I have another blood pressure medicine I am only required to take when my SBP is greater than 160. I'm a little concerned about my blood pressure. At one point today I had a 147/104 BP. That worries me. If I sit still for a minute or two and measure again, it comes down, but just the fact that it gets that high at all is bothersome. They tell me that the Myfortic can cause the BP increase, but that it should "even out" over time. It'll certainly get better when I begin to exercise again, too.

Honestly, I was so fucking bummed so often over the last week, I was thinking and even saying things that were really awful. At one point in the doctor's office last Friday, I was feeling sick from the meds. My husband was there with me and I said something like "This kidney will last me 20 years if I'm lucky, maybe 25, but then I'll be OK to die. I don't need to live any longer than that if it means going through all of this again. I shouldn't say those things to my husand because it upsets him. He knows I would like to live to be over 100 years old so it was upsetting for him to hear me say that. the good thing is that I don't feel that way any longer.

My surgeon did a beautiful job with the incision. I can't get over how perfect it is. I can see a little bit of it where the steri strips are starting to peel away. It's healing so well I think it will be almost invisible. I am looking forward to thanking him -- and for thanking him again for making the kidney work. I know another surgeon wouldn't have done such an excellent job and I'm grateful he worked on both me and my cousin.

Surgery Day 2, 3, 4, 5

2007-12-17T00:22:00.000-08:00

As I mentioned before, I spent the night in post-op. We finally got a room around 2:30 p.m. if I'm remembering correctly ( I know we spent a record 22 hours in post-op). Obviously, that was bullshit about the shift change and getting a room at 8 a.m. There actually weren't any private rooms available, so we had to wait for someone to leave the hospital and for the room to be cleaned.

My graft was taken from my thigh, near the top in the front. By Saturday evening, I noticed that the wound was "leaking." I showed it to the nurse, who said she couldn't change the dressing without an order from the doctor and paged the doctor. I showed at least 2 resident's, maybe 3, on Sunday and the Sunday nurse paged whatever doctor was on call to come by to check on me. I was told over and over from Saturday evening and all day Sunday that my surgeon was coming to my room to change the dressing. By 10:30 p.m. on Sunday, I still hadn't seen the doctor so I called the transplant office and had my transplant coordinator paged. She listened to my complaints and said she'd contact the surgeon. Finally, at 11:30 p.m. on Sunday evening, the surgeon arrived with his resident...I remember 3 people, but I don't remember who the 3rd person was. My surgeon changed the dressing and applied some adhesive strips to hold the glued wound shut better than glue alone. It was completely gross because the wound was gaping open. I was relieved to have it finally taken care of.

By Monday mid-day, the graft had broken open again and was leaking again. The nurse paged the resident on call several times, but by 9 p.m. that evening nobody had come to check me. Since we had been asking all afternoon, as we had done nothing but wait endlessly since we had arrived in this damn hospital, my husband and I got very upset. We decided we'd walk downstairs to the emergency room, where we knew a doctor would be available, we would perhaps have a better chance of seeing a doctor. At least on Sunday, we were told over and over that the doctor would be coming. He even apologized (through the nurse) for the delays. While you're in the hospital, you have this heart monitor on the entire time (a "teli".) I removed them and left them on the bed as we got my robe on and unplugged the IV to prepare for our walk.

It didn't take long for someone to be alerted by the lack of my heart beat in their monitoring room. When the nurse arrived to check on me, we told her we weren't waiting any longer. We were going to see a doctor in the next 20 minutes, or we would go to the emergency room for help. She went to get the charge nurse who told us she'd try to page the resident again. We walked to the nurses station just in time to hear the charge nurse on the phone telling the doctor we were threatening to leave and that I had removed my "teli".

A doctor arrived about 25 minutes later and fixed me up properly with very strong adhesive strips. He stated that the strips that had been used previously were inadequate. He even went to the emergency room to get the proper supplies. He seemed like a very nice man and did a thorough job.

I was pretty upset about this situation. Especially, since the doctor who came was not the doctor on duty. He was the back-up for my surgeon's resident. He diplomatically assured us that she (the resident on duty - my surgeon's resident, Dr. K.) must have been tied up with something important. Dr. K visited me each morning I was in the hospital from Sunday through Wednesday when I left. She had an awful bed-side manner and when I told her my concerns she'd ignore them selectively. Say, if I said I was experiencing A, and B. She address A, but ignore B. Her answers were cursory and sometimes threatening. For example, after 2 days of solid food, I still had not had a bowel movement. (This is an important milestone when recovering from surgery.) Her response was not to "give it time" or something else supportive. She also didn't give me any sense of how long I should expect it to take. (As it turns out, it took about 6 days after I started eating solid food.) She did say "There's only one other solution for that." Clearly referring to an enema. Whatever.

I have nothing but good things to say about the nurses. Their jobs are difficult. People aren't very nice when they are sick. I tried to be as nice as possible while I was there. I would always thank them and ask please for things. Also, when we threatened to leave, I made sure to make it clear that I was upset with the doctors for not responding, but that I understood that the nurses were doing everything possible. Some nurses were better than others, but they were all very kind and proficient. I got the sense they were overworked even though the hospital certainly follows standards for patient to nurse ratios (I hope.) The reason I think that is the way they would seem to run around everywhere like they were always in a hurry. Also, the linens on my bed were only changed when we asked and I only got bathed if I did it myself, which was extremely difficult even when I was able to get out of bed after day 2 (with help.) Bending at the waist was nearly impossible. My husband helped me a lot, but I just didn't want to ask him to bath me, too. I mean, there has to be some detail sparing.

Another good thing is they let my husband stay with me in the hospital. They provided a cot for him and everything. He would go home during the day when my Mom or a friend was there with me in order to shower and check on the cats. Sometimes, he'd take a nap since we were always awakened at 6 a.m. in the morning for vitals, blood work and weighing -- which meant I had to get out of bed. What a pain, literally.

My Cousin's Surgery

2007-12-13T19:40:00.000-08:00

I don't yet have all of the details, but I do know that because there were extra veins on her kidney, she had increased blood loss. She was in the operating room longer than planned. Also, they had to change the incision to a vertical rather than horizontal one. Someone did say that was an easier incision to heal from -- who knows. She was hobbling around same as me and experienced nausea and such. They had to really jostle stuff around on her insides to get the kidney out, too. That's hard on your body. Also, she had some previous laparoscopic surgery so the scar tissue caused problems -- I think it did, at least. I've been drugged up for a lot of the last few days so some of the details were lost in the dilaudid. lol.

I can't believe her kidney is inside me making urine right now. It's awesome. She's awesome.

Surgery Day

2007-12-13T15:45:00.000-08:00

I reported to the hospital on the day of the surgery at 7a.m. I didn't have to wait long before the admissions people took me in to sign paperwork and get my wrist band identifying me as a patient. A waited a few more minutes with my mother and husband. Maybe 30 minutes before they came to take me to pre-op. There were a lot of surgeries scheduled that morning at there was a back-log of patients in pre-op. So they took me into a short term hospital stay room -- like where outpatients recover. I got into a hospital gown and they put an IV in me. I waited in there for a really long time. Probably an hour or so. A good friend of mine who is an RN at that hospital, checked on the hold-up and discovered that my cousin went into surgery late and therefore, I wouldn't be going in on time either. While I was there, I met the anesthesiologist.

I was finally taken into the pre-op room when a bed opened up. Unfortunately, I had to be wheeled on a gurney through the fucking waiting room to get to pre-op. I had a gown and a shower cap type thing over my hair. It was embarrassing.

I must have waited in pre-op with my husband and friend for over an hour and a half. During that time, they put these squeezey things on my legs to keep my circulation going and prevent blood clots. I met the surgical resident, Dr. K. They rolled me into the operating room and gave me something to relax me. I remember the room being very bright, but there was no music. Shortly after I got there, they put oxygen on my and I remember feeling suffocated by it. It was uncomfortable. I don't know why they thought it was a good thing. Anyhow somebody tightened the mask and leaned over me, upside down, and said "we're going to put you to sleep now, Heather" and that's the last I remember until I woke up.

When I woke up around 5:45 p.m., I remember feeling a lot pain in my right arm. Someone was talking to me, but I don't know who. I was bleary eyed and felt it was difficult to speak. This is all typical when waking from anesthesia. I saw my surgeon across the room and called his name. He came over and stood next to me for a few minutes. Then I wanted my husband and started to cry. I don't remember a lot of pain. It seems like they gave me something right away. I was there with my husband for hours and hours. I was still in post-op at 11:30 p.m. because the hospital didn't have an open room for me. After 6 hours, the bussel and noise in post-op was getting overwhelming. My bed was right across from the phone and nurses station so it was really loud. They kept telling us I would have a room shortly, but I was there for hours and hours. My husband stayed with me, too.

Around midnight, they cleared a room in post-op for me because I was beginning to lose my mind with the ruckus. It was a tiny room, but at least it was private from the rest of the post-op. All of the nurses said that that since it's a trauma hospital, they can't always plan that well for a room to be available when it's needed. Emergencies and all, bla bla. We asked to see a supervisor. When she came by around midnight and told us that a room WAS available, but that there wasn't staff up there to deal with me right now. That after the 7 a.m. nursing shift change, I could be moved upstairs. Sometime around 8 a.m. we should get a room. We thought she was lying by the tone of her voice. Then her shift was over and she went home.

So we spent the night in post-op.

The Surgery - complications

2007-12-13T15:30:00.000-08:00

I had my surgery on Friday. Although the stats were with me, I was in the minority. My cousins kidney has some abnormalities that made the transplant difficult. The surgery took nearly 6 hours instead of 3-4 as planned. They had to call in a vascular surgeon to help by taking a vein to from my leg to graft the kidney. They had to place the kidney in a different position than is typical, too, but it works! They spent an hour making sure it was in a good location and wouldn't move. A full hour. I had a great surgeon and I'm absolutely positive this kidney will work for at least the next 20 years. Now it's up to me to take good care of it.

I'm going to take the next few blog entries to talk about the days after my surgery, the hospital stay and what it was really like.

Friday is Almost Here

2007-12-05T21:02:00.000-08:00

Today was my last day at work before the surgery. (We go in early Friday morning for the surgery.) Several co-workers gave me cards and gifts like magazines and slippers. It's very thoughtful. I wrapped up my duties as well as I could. We managed to run through a lot of features of the software package before I left so that's good. I stopped in to see most of my close co-workers on my way out. Then ran into 3 more on my way out -- what good timing! I set my away message on email, changed my voice mail, and left early.

My cousin arrived Monday and we've been able to spend some time together, catching up. I want everyone to meet her. Maybe they will at the hospital. The thing is, I didn't choose to have this disease, nor is this surgery an option for me. But she chose to give me a kidney. She's doing something amazing completely out of the goodness of her heart. It's overwhelming.

But still my emotions haven't set in. I feel disconnected much of the time. I suspect that's just how my brain is dealing with the situation. I suppose I am more quiet than usual and I'm certainly much more tired, yet I don't have any clear feelings. People say 2 things to me most often: 1) You'll be fine (or something similar) and 2) How do you feel? I don't know how I feel and I'm an honest person, so I usually say that. I'm not nervous. I'm not scared. I am having a hard time believing it's really going to happen -- but I'm not going to think hard about it because the day will be here soon and there isn't any way to prepare for it after all. I think I'm a lot stronger than I knew.

Surgery in 5 days

2007-12-02T18:50:00.000-08:00

Time is running out. I've been keeping busy. I went out for lunch with co-workers twice last week and out for dinner Thursday, Friday and Saturday with friends. My friends have been really supportive -- as have my co-workers, but especially my husband. Today he brought home Nintendo DS with the Brain Age game. Something for me to do while I'm recovering. I need to get other activities prepared for the recovery as well. I'd like to do some knitting. I'd also like to do some reading related to my job -- maybe get some ideas for an article. I figure I'll check my work email, too, since I can easily do that on my cell phone. I want to download some new music, too. I need to do some laundry. I need to pack a bag for the hospital. I guess I can wear my own PJs after a few days. I'll bring some. I'll also bring some lotion and lip stuff...I hate to dry out. Deodorant...a little make-up and my hair brush. I'm not sure what else...a bathrobe? I suspect they'll have hospital robes, but I like my robe.

I've been keeping busy with a craft project. I'm making a centerpiece holiday tree -- it's a Styrofoam tree with beads covering it (and silver ribbon.) It's time consuming. I'll have it done in the next day or two.

Tomorrow my cousin gets into town. I'll pick her up at the airport. I should clean the house, but I just don't care. Maybe I'll just run the vacuum tomorrow morning and call it good.

We got a new cat bed today. So far 3 out of 4 of the cats have tried it out. They like new stuff. Funny.

I have to begin taking a couple of anti rejection meds on Wednesday. I'll tell you more about that later. Also, I met with my surgeon on Friday. I'll tell you about that, too.

Thanksgiving

2007-11-24T18:49:00.000-08:00

This year I have a lot to be thankful for. I suppose a lot of people are thinking that, too. I know there are thousands of transplant patients out there and I'm very close to joining their ranks. I haven't seen my cousin for nearly 20 years and yet she's going to give me a kidney. I saw her this week when I flew home for thanksgiving. I usually stay home with my husband and have a quiet day of cooking, eating and watching the movie Elf. That's our own tradition. This year, I thought it would be a good idea to fly home and see everyone before the big surgery. It was pretty nice. The best part is getting to see my cousin and meet her husband. We had a great time talking and getting to know one another again. She seems truly happy and ready for this surgery.

I should apologize for ranting so about the surgeon mix up. My transplant coordinator spoke with the head surgeon on Monday and I have the correct surgeon again. Thank goodness. My Nephrologist was adamant that I should have the doctor I originally chose -- she was quite firm about it. So we're back on track.

I don't have a lot to say. I'm just waiting these days. I have gained a few pounds. I am looking forward to getting back into great shape after the surgery. I was thinking of planning a bike ride across the country as a goal after the surgery, but that costs a lot of money and takes a lot of time off work. I'll be all out of vacation and sick leave after my recovery, so I found a different goal -- a sprint triathlon. I know a couple of people who are also interested and one who could help me train. I think this is a great goal.

I'm sure I'll have more to talk about after the surgery. I'll certainly plan to share the details with you.

Misled

2007-11-17T23:24:00.000-08:00

I received an email message yesterday from my transplant coordinator. She wanted to let me know when my appointments are the week before my surgery. One of those appointments is with the surgeon. I have met my surgeon. Let's call him Dr. A. I med Dr. A back in May during my transplant evaluation. I'm sure I've already told you all about the evaluation, but to jog your memory, I met with the nephrologist, the neph's resident, the transplant coordinator (who was later fired and I was assigned a new coordinator), a social worker, a nutritionist, the financial/insurance person...and *MY* surgeon, Dr. A. I have attended informational workshops at the medical center featuring *MY* surgeon. I have researched his literature, his career and have asked other medical center staff/doctors for recommendations about him. All of this was positive and I confidently chose this medical center for my procedure.

The e-mail message I received yesterday indicated that I would be meeting with my surgeon...Dr. B. Who the fuck is Dr. B? When did Dr. B come into the picture? What kind of career has he had? Where was he educated? What has he published? Why didn't anyone mention this motherfucker before? Where the hell does this medical center get off introducing me to MY surgeon months ago and then pulling a bait and switch? I've been under the impression for months now that Dr. A would be my surgeon. Now, 3 weeks before the big day, I discover that this is not the case. I'm am very angry. I have my coordinator's cell phone number and called her Friday evening. She said she'd look into it and get back to me Monday. She assured me both surgeons are quite good and I don't have anything to worry about, but that's not the goddamn point, is it? I trusted them and they have now fucked it all up. How can I ever get back to the trusting point I was at previously? It's not as if I have a choice about whether I'll go there for the surgery now -- I'm too far along now -- I don't have time to be evaluated and approved at another hospital before I will require the surgery. Nice how well that worked out, isn't it? motherfucking, lying, pricks.

How Am I?

2007-11-15T09:07:00.000-08:00

I have good days and not so great days. Mostly, I think this experience has changed me for the better. I think I’m a lot stronger and a lot more at ease with life in general. But, at times it strikes me that this is actually going to happen and I get really frightened. Last Tuesday was a rough day, but I had a lot of meetings so I was able to keep my mind busy.

I have to make myself eat because I just don’t feel like it. My body says it’s hungry, but I just don’t care. I don’t have much desire to eat it and it doesn’t taste good. Therefore, I eat stuff that tastes good, but is probably not very good for me, e.g. donuts, candy. Sometimes I get to a point where I wish someone could just put their arms around me and stop time…that all this would go away.

Still Not Sick

2007-11-13T15:54:00.000-08:00

I find it really difficult to believe I'm going to have a kidney transplant in less than 1 month. I feel fine most days. the worst "symptom" I'm experiencing is fatigue. I don't have pain. My latest labs from Friday show a creatinine of 5.4.

I'm having a difficult time concentrating at work. I have been working short days -- leaving to take naps in the evenings. I don't feel bad about it because, hell, I'm sick even if I don't feel more typical symptoms associated with illness. They can deal with it.

I'm okay

2007-11-04T19:50:00.000-08:00

I'm okay these days. I'm just waiting. I wonder what it will be like AFTER the transplant given that's been such a large part of my life. II would imagine some people get tired of me talking about it. I don't talk about it to a lot of people, but it tends to be the first thing on my mind so...naturally, I talk about it.

Last night I went to the bar and drank a white russian. I started drinking these recently because I have a lot of problems with my stomach. Maybe that's a symptom, maybe it's just the stress, but I have been getting heartburn and upset stomach a lot in the last 6 months. I even take one of those over the counter heartburn pills and I have to supplement with tums here and there, too. Anyhow, we ate mexican food last night and then went to the bar. I started feeling sick after I finished my drink. Maybe it was the mild. Maybe my body just can't take the alcohol any more. I switched to O' Douls, but it still didn't feel better. I've been sick most of the day today. it's mild, just an upset tummy and weakness. It didn't stop me from going in to have my tattoo enhanced. It needed some touch-ups. Looks good.

When I first got my surgery date, I went through a period of fear and then some sadness here and there, but mostly I'm okay. I'm not saying I want the surgery. Hell, I'd like to be perfectly healthy or to at least wait another year or two or three...lol. But I know it has to happen so I'm preparing the best I can.

Iron infusions AND anger

2007-10-26T17:02:00.000-07:00

I have been going all week to the medical center for iron infusions. Previously, when I had infusions, I had to sit for 2 hours waiting for it to finish. And it was just 3 days in a row. This time it was 5 days in a row and only took 40 mins a session. I think I prefer the longer sessions over 3 days. I managed to convince them to stick me fresh everyday rather than leave in the needle. I don't mind the needle 5 days in a row, but I do mind having to maneuver around with a needle taped into my arm. It makes showering and changing clothes a real pain.

I'm finding myself being kind of angry lately and I don't like it. This morning I lost it a little when the cat was hiding from me in the spare room and I couldn't get her out. The cats aren't allowed in the spare room during the day, but in the mornings I open that room because I need the iron and the TV. Anyhow, she wouldn't come out and I got angry and yelled at her. Scared the crap out of her...she ran to the bedroom and hid under the bed. Then, my transplant coordinator is supposed to send me a doctor's leave note, but I still haven't received it. I asked her for it last Monday and her response was "remind me if you don't have it by Thursday." Of course, I had to remind her on Thursday and then I got..."we're in meetings all afternoon, so I'll have the doctor sign it then and fax it to you." Still nothing today-Monday. I sent another request for it this morning. It's situations like this that make me want to call and yell at her to just fucking fax the damn letter!

Other than being easily angered, I am tired. I fall asleep on the couch all the time and I sleep in every morning. I now come to work by 9am rather than 8am because I just can't get up in the morning. It's an inconvenience more than anything else -- don't get me wrong, I'm not complaining, just telling you how it is.

Surgery Date

2007-10-18T10:43:00.001-07:00

December 7th!

Scheduling .. No Focus ...

2007-10-16T22:02:00.000-07:00

At my latest check-up last week, my nephrologist told me it's about time to schedule my surgery. She recommended we schedule no more than 8 weeks from now. She said the transplant office would jump on it and get me scheduled quickly, but I still hadn't heard anything as of today - a week after my check-up. I would let it go, but I figure I need to begin planning for my family to fly out here. They'll need to make arrangements for vacation time and book flights. I suspect flights will be difficult to book around that time...late November/early December. I also worry that I won't be able to find a hotel room in a nice hotel near the hospital for my cousin's family.

I called the transplant center yesterday. Of course, my transplant coordinator wasn't in the office at 4:15. I guess she works the early shift. So I waited until 2:30 p.m. today. When I got her on the phone she said she was gonna call me...and that she was waiting on some financial paper to be confirmed before she scheduled my surgery. Which I think is complete bullshit because the insurance company already approved everything in order for me to get on the damn transplant list in the first place. I suspect she's making excuses for not calling me. She said she'd call me as soon as she heard back from the "financial guy." Whatever. I'm calling her again tomorrow.

It's been a difficult week. Part of me is relieved and part of me is terrified that it's actually happening - I'll have a kidney transplant in 6 weeks. I am super stressed at work and I sometimes feel as though I'm barely holding things together. I lose my temper with people and get upset about things that shouldn't bother me that much. I find it's difficult to focus and yet, I have no choice but to focus because of the software implementation I am coordinating. I need to get it into some semblance of functionality before I leave for surgery. I want people to know that there is something creating additional stress that may be interfering with my performance and behavior, but I also don't want to draw a lot of attention to myself.

I wish I was independently wealthy so I could take a long leave of absence starting right now. I don't want to deal with the career crap right now when all I can think about is getting it out of the way in order to focus on my health.

I Can't Sleep #2

2007-10-08T00:08:00.000-07:00

Well, here I am again. I went to bed an hour ago and, well, I really thought I was going to fall asleep this time. I figure an hour is a pretty good try. I have read that insomnia is a symptom or complication of end stage renal failure (1,2.) Who wouldn't suffer a little bit of sleep loss in my situation. You get tired of waiting. At least I know I will have a kidney donor when I need one. It could be worse. I could be on a list waiting. Hopefully, talking to everyone under the sun about my transplant may help raise awareness of the need for additional living donors.

I'm going to try to get some sleep now.

Beer Drinking

2007-10-07T15:07:00.000-07:00

I'm a beer drinker. It seems like I always have been. There's nothing better than an icy cold beer on a hot day...or a Sunday afternoon...or after a long day. Anyhow, with this disease, I guess my kidneys just aren't processing the waste products out of my body fast enough for me to drink as much as I used to. And I'm not talking about a lot. Today, I went out for breakfast, like we typically do on a Sunday morning. Then I went shoe shopping and when I came home, I thought I'd download some new music and drink a beer. Literally halfway through that beer, I was already feeling loopy. By the time I was done with that one bottle of Coors Light, I felt very disoriented. I would call it drunk, but somehow it's different than being drunk. It's more mind boggling -- I mean literally -- my head feels scrambled. It's kind of cool. :-) Anyhow, I'm gonna drink another and then take a long hot bubble bath. That's a good Sunday.

UTI and my realization

2007-10-04T22:35:00.000-07:00

So it started this morning -- a urinary tract infection. Sometimes I get them and they usually come on slow. I drink a lot of water to sort-of wash it away. And it usually works, but this one was crazy fast moving. Luckily, my doctor understands that I know the symptoms and she trusts me. She called in a script for me and I didn't even have to go to the lab. I'm feeling better, but am extremely tired and I have tummy ache from the antibiotics. They really take UTIs seriously when you have kidney disease and put you on a strong antibiotic -- cipro. I should go to bed, but something makes me want to stay up...

I had this realization a few minutes ago...I am going to get a kidney transplant. It's crazy. It's like this thing that hits you suddenly. Was I really ready when I said that I was ready a while back? How can you ever really be ready? It's kind of like when I have to do something I don't really want to do...like this summer I really didn't want to go to this conference. My tactic was to not think about it. I know, I sound like Scarlett O'Hara, but really, I just didn't think about it. On the way to the airport, I started to feel a little more anxious. That's how it works -- you just don't think about until it's right in front of you. I've done it over and over. I've done it for every other medical procedure I've had. There must not be any way you can prepare your self for such a thing. I've tried telling people, but that doesn't make it any more real. I've tried writing about it, but the realization just continues to come and go. I've tried learning about it and that was the most helpful. I felt the most control when I learned as much as I could. I watched an entire kidney transplant surgery online. Really!

I *am* going to get a kidney transplant. I've done all the preparation I can do. Nothing further will help me prepare. I just have to keep waiting. There is no way to make it real...you just live your "normal" life while the numbers on the lab results change. The illness doesn't make me a different person. I am the same person, with the same petty concerns. No monumental emotional change is going to happen and make me feel different or to come to any significant realization or state of being.

I'm tired and I'm going to bed. I think I stay up late because then I'm completely exhausted so I fall asleep quickly. Hopefully, that will work for me again tonight.

Creatinine Chart

2007-10-02T14:17:00.001-07:00

I thought you might like to see my creatinine chart. This is all the data I have so far, but I'd really like to have older/earlier lab results. My doctor said I should plot 1/creatinine# . She also indicated that we'd schedule my surgery when my creatinine gets to a 5.0. I'm around a 4.4 now, but we'll see what my October lab results say.

Here is the chart:

Here is the table:

date	creatinine
11/5/2005	2.1
8/15/2006	3.1
8/22/2006	3
10/11/2006	3.2
12/6/2006	3.4
1/5/2007	3.6
3/8/2007	4.1
4/6/2007	3.9
5/4/2007	4.3
7/11/2007	4.4
8/14/2007	4.4
9/14/2007	4.9
10/14/2007	0
11/14/2007	0
12/14/2007	0
1/14/2008	0
2/14/2008	0

I Can't Sleep

2007-09-30T23:57:00.000-07:00

It's been getting worse and worse. I am tired during the day. I fall asleep on the couch in the evenings. I sleep in and take naps on the weekends, but when I go to sleep for the night, I can't fall asleep. It's been getting worse in the last month. I lie there for 2 hours sometimes. Part of it is my mind wandering, but mostly, I just don't feel sleepy. What's odd is that I do feel tired. I WANT to go to sleep. So here I am writing this bullshit instead.

Also, I don't have the energy to do the physical activities I used to do. On my good days, I feel normal, but mostly I get short of breath and tired pretty quickly. This morning we walked to the bagel shop for breakfast. It's about 9 blocks one way, but I struggled on the way home because of the heat. It was warm, but I am usually okay with that. In early August I went camping in the heat and hiked 3 miles up winding hills. Now, just 2 months later, I'm a wimp. Tomorrow I'm going to try to go to spin class. I had an Aranesp shot today. I think that takes 2-3 days to kick in. I should be feeling better after that. Sometimes I have an urge to take an extra shot, but the medical studies show it's no good for your heart to take too much Aranesp. They want your hemoglobin around 11-12. Mine was 8.5 before I started taking the shots. I take them every 3 weeks and that seems to work.

I think I'll try to get some sleep now.

Feeling Like a Space Cadet

2007-09-28T12:37:00.000-07:00

Yesterday I had a minor freak out. All afternoon I was feeling disconnected mentally -- kind of spaced out and mentally jumbled. I was in a meeting, trying to shake off the disorientation without being obvious, but it just wouldn't go away. It lasted for several hours and was completely frustrating. I guess that's normal since my body is full of the toxins my kidneys can't process out. I planned on going to the gym, but ended up sitting on the couch trying to chill out and get my head clear. I felt a bit better after eating something and then decided to run on the treadmill (long enough after dinner had settled.) After that, I felt very tired and fatigued so I relaxed on the couch and watched TV until bed.

I don't think I mentioned that my creatinine was 4.9 at my last blood test. I was surprised it had jumped from 4.4. to 4.9 in one month. The nurse said it may have been due some dehydration caused by the hot weather. My next appointment is in early October so I'll see how much improved it is...and I'll drink a bunch of H20 before that appointment.

I'm feeling a bit better this week -- not so awful about the weight gain. I think some of it was period weight so that'll go away (maybe 3lbs or so, at least.) I have decided to wear more skirts. That way I don't have to feel the tight fabric around my growing thighs. lol. But really, skirts are more flattering anyhow. That means I have to go shopping. Also, I'll need some new shoes to wear with skirts -- Fall shoes. :-)

LUXURY ITEM RECOMMENDATION: You HAVE to buy a double shower head. My husband just bought one like this, but for much less money at Home Depot. One head is stationary and the other is on a hose so I can clean the tub more easily. My morning shower is now heavenly. I can't recommend this highly enough. It's a really cheap reward for yourself and really helps relieve stress.

Gaining Weight

2007-09-14T18:14:00.000-07:00

I am really feeling gross right now. I knew I was gaining weight, but I just came home from work and put on some shorts. I just bought them about 4 months ago, but they barely fit around my waist and were, of course, tight in the ass. I've been aware of some weight gain, but it just seemed to come on so suddenly. It makes me feel like I'm losing control... I know I'll gain weight after the surgery. I expect that, but I'll be home recovering until I am back in decent condition. Right now, I still have to go to work and I am starting to grow out of my fat clothes, too. I know it's my own fault because I haven't been working out as much, but I haven't been eating a bunch of crap so I start to wonder if I'm losing my mind...I mean, is my body fucking with me or what? I wonder if this weight gain is part of the disease, but I haven't read anything about it so I go back to blaming it on my own slacker behavior. But I'm tired a lot and I just don't have the energy to go to the gym as often as I was before. Damn. I am sitting here on the couch right now, feeling guilty for skipping the gym, but so friggin tired I could just lie down and sleep here on the couch. God damn it.

It's Been Too Friggin' Long

2007-09-10T13:18:00.000-07:00

I can't believe it's been so long since I last wrote in my blog. Well, that should tell you that I'm doing well. It's just a waiting game now. I am ready, but I'm not going to go in for the surgery until I absolutely have to do so. That's still a mysterious decision to some people. I guess they just don't understand exactly what I'm facing post surgery.

I was ironing clothes in the spare room this morning. Since the treadmill is in there, as well, it got me thinking about how soon after my surgery I'll be allowed to get back on the treadmill. I mean, it's just walking. Maybe I can do that w/in a couple of weeks? I'll have to ask the doctor. So far they are saying NO EXERCISE for 6-8 weeks after the surgery. That makes sense with the incision and all, but doesn't walking back and forth to the potty, bed, dinner table count? If that doesn't count, then why not a little extra walking on the treadmill. It's not like the damn kidney is gonna fall out. lol. I did have a dream that my transplanted kidney was falling out.

More seriously, however, I have been feeling quite well in the last week or so, but I haven't forgotten that I am in for some major life changes. One thing I need to compile include instructions for my funeral arrangements. It's a worse case thought and one that surely won't become necessary anytime soon, but it's important for me to consider. More to come.

A New Pill & Tattoo

2007-08-22T17:59:00.000-07:00

I'm sitting here on the couch, watching re-runs of MASH. you'd think it'd get old, but I can watch the same episodes over and over without a problem. That's probably because I have this need to multitask so I'm not really watching the episode. Ever since I got this laptop (perks of faculty status) I have been absolutely addicted to the computer. I piss around on it on and off all evening. Sometimes I wonder what life would be like again without a computer at home.

I filled a new prescription today. It's some kind of calcium supplement I'm supposed to take with every meal. My nephrologist said my phosphorus is a bit elevated. I have been trying to cut back on colas, cheese, nuts, etc. but she put me on the pill anyhow. Apparently, when you take this supp with a meal, it binds with the phosphorus in the meal and doesn't get absorbed into your bloodstream. Whatever. I should look up just exactly what the harm is when a person's phosphorus is elevated. How harmful could it be? I know I mentioned this cola thing before, but to tell you the truth, I haven't been doing a very good job keeping off the soda. The funny thing is, prior to her telling me to limit my cola intake, I had nearly given it up entirely -- you know, what with the caffeine restriction, but after I have been craving it all the time! Cola with peanut brittle sounds just perfect right now. Really.

Did I mention I got a tattoo. It's to commemorate my kidney transplant. No, I haven't had the transplant yet, but the transplant center says that I can't get any more tattoos after the transplant. It's considered "risky behavior." I watched my dad do "risky behaviors" until his transplant started to reject so I'm not about to repeat that mistake. I need to get all tatted up before the surgery. I'm thinking maybe some flowers on my forearm. My transplant tattoo is on the inside of my wrist, by the way. Here's a picture. It's my first tattoo, too. I have always thought about getting one, but didn't think there was anything I wanted to commit to for LIFE. The transplant is for life! In case you can't see from the resolution of this photo, there are 2 kidneys in the tattoo! The green band is the color for kidney disease/transplantation.

The Latest Results

2007-08-18T22:46:00.001-07:00

Well, I finally went to my nephrologist again. I went on the 14th and she did labs, of course, and a UA. I'm a little tired of peeing in a cup, but I suppose I should get used to it because that's likely to be a very common event in my future. I'm actually pretty good at it. I don't even get pee on my hands!

I called Friday to get the results. In particular, I was interested in the creatinine. It didn't change! It was 4.4 again, just like it was on July 8th. So, what should I make of that? I just don't know. The doctor says it'll be 2-3 months before I'll need to schedule the surgery. She says she will schedule the surgery when my GFR gets to a 10 - right now, my GFR is a 12. According to the MDRD.com calculator, my creatinine will need to be a 5.0 in order for the GFR to be a 10. Maybe I've already mentioned this in this blog, but there it is again. I don't much care to go back and search the blog to determine whether I have actually shared these numbers with you before so...there is the information again. You may be thinking...why do you want to continue to wait rather than just getting the surgery now -- why not just get it over with? If you were thinking that, fuck you.

I'm still trying to keep busy. It's much easier to do so during the week. On the weekends there is a lot of time to sit around and wonder about the future. I try to keep busy. Today I wandered up and down nearly every isle of Big Lots looking at odds and ends that I don't need. They have these dish towels that are compacted into a disk that fits in the palm of your hand. It's probably completely worthless, but who can ignore a $1 item that might be entertaining for, say, 5 minutes? I can't. Shopping helped me kill a good hour...maybe more. Then we went to see a movie, got dinner and played pool at a sports bar.

I have been feeling sick more frequently. When I shared that with the doctor she said "Yeah, sounds like you're getting some symptoms." Duh. My dinner made me a bit queasy...so did the one drink I had after. It's not severe, but it's enough to bum me out. I was really sick last night. I don't know if it was the food or the beer. I decided to sleep in and didn't set the alarm. I woke up at 11:15. Ridiculous. I always feel a little depressed when I sleep in so late, but at least I finally felt well again.

I don't know man. I'm just feeling down today. I'm gonna go put that dish cloth in water and watch it expand. Then maybe I'll read the Tao of Pooh. Yeah, I'll talk more about that in my next blog entry.

Amazing Advances

2007-08-08T11:54:00.000-07:00

When my dad got his kidney transplant about 25 years ago, he had to wait for a cadaver kidney. They didn't talk about living donors back then...at least not in the mid-west hospital that was caring for my dad. I am so lucky to have found someone willing to donate. My cousin is literally saving my life and I think about that all the time. It's an amazing thing and as I tell my friends and family, I feel like I need to come up with a new type of thank you that means more. A simple "thank you" seems like the best thing to say, but I say thank you when a waitress brings me a glass of water...or when a co-worker finishes a project for our team. It makes my "Thank you for donating your kidney to me" seem so inadequate.

I spoke with my transplant coordinator earlier this week about how many HLA antigens my cousin and I match or mismatch on. She explained that they look at 6 and a 0 mismatch is ideal. Our results were a 4 mismatch which means we matched on 2 antigens, but my doctor assured me not to worry. The anti-rejection medicines are so successful, the number of mismatches doesn't concern her at all (if it did, they wouldn't do the transplant.) Thank goodness for medical advances!

Weight

2007-07-31T20:09:00.000-07:00

My weight usually fluctuates 3-5 lbs during the month. Typically, I'm around 140 lbs. When I'm really working out a lot and carefully watching my diet, I can get down to 132. When I first found out about the transplant, I stopped going to the gym as much and was eating just everything. I got up to 144 lbs. I wasn't too worried. I got back into my routine and by the time I next went to the doctor, I had lost a few pounds (137.) My nephrologist doesn't want me to lose any weight. She didn't like that I was down 7 lbs at my last appointment. I have been trying to eat normally, but I just don't seem to have the appetite I used to have. The problem is that it's difficult to worry about it since I like being able to control my weight. I know that I shouldn't want to lose weight because my health could be at risk so I have been eating whatever I feel like eating. For example, I put whole cream in my coffee. I eat desserts. I eat french fries when I want...and I don't worry about portion size -- although that's a waste since I can't usually eat more than half a sandwich and half a bag of baked chips for lunch, for example. I *SAY* I'll eat whatever, but I get full quickly. Today my small lunch even made me sick, but it only lasted an hour or so. Anyhow, I weighed myself tonight at the gym and I'm down to 134 w/out trying -- and with eating whatever, desserts, etc. hmph

I can highly recommend whole cream for the coffee. It's amazing. I don't know how I ever went w/out it in the past. I nearly can't drink a cup w/out it. And don't give me half and half -- I want the whole, real deal. You put so little in the coffee, it's really not that many more calories and fat.

Here's the thing though, I know that after the transplant I'll need to give up nearly all of the sweets that I've been eating. I have also started drinking regular soda now and then just for the calories. I'll have to give that up too. The risk of diabetes is great after transplant because of the drugs I'll be on. I plan to give up refined sugar and stuff with a lot of refined white flour. For now, I'll snarf down all of the oatmeal scotchies I can handle. The count is 5 so far today. :-)

I'm Ready

2007-07-30T08:18:00.000-07:00

I've been through just about every emotion since I found out about my transplant. Much of it throwing me up and down from hour to hour through anger, frustration, optimism and sadness. But I had this feeling on Saturday that things that have happened in my life over the last year, have happened for a reason. I believe the environment at my current job is much healthier and I have met some wonderful, caring, stable people who have been extremely supportive and understanding. In particular, the person who was hired with me has been a good friend. My bosses are great, too. I know that my former employer would have done as much as possible to support me, but somehow, I know that it has been better for me to be here.

I know I'm going to be fine through the transplant. I understand the sacrifices I'll need to make and I'm ready for it. I want to prove that I can do it. That I can be healthy and fit with a transplanted kidney. I'm ready for the challenge. I'm ready for the surgery. I want to do it and get on with my life. Bring it on, baby.

I plotted my creatinine number to see the trend line for my kidney failure. If I did it correctly, it seems as though I'll be having the transplant in the Fall of this year.

Wow GOOD NEWS!!

2007-07-12T21:29:00.000-07:00

Today I called the transplant center to find out when the crossmatch results would be in. She said later tomorrow afternoon. Okay, one more day. I can wait one more day. I've been waiting weeks already.

Then at 4:55 p.m. I got a phone call and the caller ID said "private." Whenever I see private, I know it's the medical center calling. I answered and it was one of the transplant coordinators. She says to me "This is XX, one of the transplant coordinators from the UCI medical center. I'm calling to talk to you about the crossmatch test that's being done this week." My mind began to spin since I just knew she was going to tell me about my cousins compatibility and why doesn't she just spit it out? Then she said she only had a verbal report from the lab, but that the paperwork would arrive tomorrow afternoon. I'm waiting still...time was standing still...she said the "test was negative!" I, of course, couldn't think about whether that was a good outcome or not...so I asked what that really meant. She explained that's what we wanted! A negative result is GOOD! SHE IS A MATCH!

More Symptoms

2007-07-09T20:14:00.000-07:00

I had 1/2 an egg salad sandwich today for lunch. I saved the other 1/2 for later since I was full after 1/2. Then I ate the rest for a snack around 3pm. Well, I have been sick since about 3:45. My stomach hurts and I am weak and even light headed. It's now 8:15 pm and I am wondering if I'll ever get a break from this stomach ache, headache, nausea, dizziness and light headedness. Man, this really really sucks. I will have to stop eating egg salad now. I have tried lying down, but it didn't really help. I'm actually wondering if eating something would help. Drinking didn't. So I didn't go to the gym for obvious reasons. Damn, I feel so sick. It's just gotten worse as I am writing this. a new wave of nausea and overwhelming weakness just sank into me. I can hardly hold my wrists up to type this blog entry. (But you know how important it is for me to document this crap.)

George Lopez is my hero. He got a kidney transplant and in one article he talks about how much better he felt after the surgery. How sick he was for so much of his life and that all changed. I am looking forward to feeling well again. I'm lucky though because I don't feel sick like this very often. I do look forward to some greater mental clarity. I'm feeling a little better again....

Vacation

2007-07-06T20:58:00.000-07:00

I'm taking a vacation alone. At first I was pretty excited about it, but sometimes I think I'll get lonely for that week. I do have a lot to think about and reason to relax. I am looking forward to it. I know it will go quickly, but I hope to enjoy every minute. I wish I could slow down time and not just for that week of my vacation, but for a lot of good times. So many good times go by too quickly. I want to be able to hold it in place and suck the life out of it. I'd even be willing to slow down times of pain and suffering in order to have my good times last longer. Too much of my life lately has been filled with ambivalence. I feel like I'm living in limbo...sick, but not sick enough to do something about it....waiting and not knowing. I'm used to setting goals for myself at work, but when I leave work, those goals aren't at the forefront of my mind when I leave for the day. However, given my current situation, I can't stop thinking about hose goals. they seem to apply to me whether or not I am at work. They are a very important part of my focus...helping me move forward with the idea that if I can accomplish certain work goals before my surgery, I will be successful...but successful with what? I'll satisfy someones expectations of me? My co-workers tell me over and over that I should simply be focussed on my own health. This over emphasis on work disconnects me from the rest of my life since I become so focused on work as the central achievement in my life. To the detriment of everything else...including my ability to enjoy all other aspects of my life. The only think I enjoy doing lately is napping...or sitting my the pool in the warmth napping.

BREAK -- Bear Grylls is in the outback. He just said he might have to drink his own pee. I love this show.

Next week they will do the crossmatch. I will know at the end of the week whether or not my cousin will be able to give me a kidney. Maybe that will change things.

Slept the Day Away

2007-06-30T12:02:00.000-07:00

Last night I went out for dinner. I had eggs, hash browns and toast. It wasn't the best meal, I know, but that's what I wanted. These days, I pretty much eat what I want -- which is healthy most of the time. When I splurge though, I go all out. When I came home, I sat on the couch until I started to feel sick. It came on suddenly and I just got up and went to bed immediately. I didn't brush my teeth or wash my face. I just got up and went to bed. I don't know if it was something in the food or if I was just done for the day, due to the emotion and the longness of the week, but I was done. I felt sick to my stomach. I felt extremely tired. It must have been 10:30 pm. I just woke up about 10 minutes ago (11:30 am.) Sleeping solid the entire night and morning.

Now this morning I have some UTI symptoms. Maybe I have an infection. If it lasts until Monday, I'll call the doctor. Until then, I'll drink lots and lots of water to try to wash it away. Sometimes that works.

When I'm sick, I start to feel very close to my husband and my cats. I don't know why that is, but it's interesting. I think I'll take a shower and get cleaned up. I feel gross, but rested. lol. Then I can get a pedicure and a leg wax. Maybe I will go away for a few days to a spa. My husband said to go for it.

Mixed Up

2007-06-27T16:07:00.000-07:00

Wow, are things messed up today. I should be prepared for it by now. I was up up up yesterday and it just figures I'd dip down a bit today. Things can't stay up all the time. I just wish the highs would last longer than they do. I've been battling it this afternoon -- the grumps. I find myself lying to people about how I feel. I don't know why I do that. I guess I want to portray of picture of health and happiness which is not so unusual, but there also is nothing wrong with feeling bla. One minute I want to put my running shoes on and run for miles and miles...the next I want to get more work done...work hard and keep busy....yet another minute later I want to get a pedicure...anything except go home and sit on the couch in that house. I have this desire to be completely alone for a few days. Maybe leave town for a while and just be alone. I'm not usually like that and I don't quite understand where it's coming from.

The best I can do is to go to the gym and be alone with that crowd of people working out. Or stay at work in my office, but I want to be outside. Go for a walk maybe or ride my bike, but just be alone and think.

The transplant coordinator emailed me yesterday to say that we'd finish up the crossmatch after the July 4th holiday. My cousin will mail her blood overnight Monday the 9th. I'll give blood on July 10th and the crossmatch will be done that week. We should know Thursday or Friday. I'm a little irritated that this didn't happen this week. There's really no reason why it couldn't have been done this week. I was here Tuesday (yesterday), but the coordinator didn't even consider it. And since next week has 7/4 in the middle of the week, we apparently can't to the crossmatch over that day. I guess nobody's in the lab on July 4? Who fucking knows. In any case, I know that I have time, but I just don't like not knowing.

The next question is when I'll get the transplant. Oh, hell, I wish I knew.

Kicking the World's Ass Today

2007-06-26T17:12:00.000-07:00

That's just how I feel today. Damn. I feel good and strong. Never better, honestly. I'm headed to the gym tonight. The conference was pretty good. I guess it energized me. I have been feelilng bad, depressed, negative, but I think things have changed. I'm feeling good and I want to be positive and enjoy life.

Back Pain and Telling

2007-06-25T20:15:00.000-07:00

That's my latest symptom. It doesn't bother me much, but today, on a plane (returning from a conference) it was persistent. It's a dull aching pain, but I have had shooting pain in the past. Overall, it's not that bad. If it goes on for long, however, I do get irritated. By the time I got to baggage claim, it was nearly gone. maybe it was the 4.5 hours of sitting?

Otherwise, I had to tell a few people about the upcoming transplant. I was planning to take over some chair duties on a committee, but I don't think it would be right to do that and then miss 2+ months of work during the year. People are pretty darn cool when they hear about it. I think it's most interesting to see how they react. Usually the older people react more thoughtfully and the younger ones (under 40) are kind of chill. Like maybe it isn't very real to them -- I suppose they just aren't old enough to have experienced health problems or people around them with health problems. I wonder sometimes if I should be telling people at all. Maybe I should just keep quiet about it. It probably makes them uncomfortable, and sometimes I feel like they might think I'm looking for attention. I try to influence their reactions with a lighthearted comment and maybe even a joke about it, but that probably makes them uncomfortable, too. The reason I say anything is that 1) they need to know that I'll be absent for some time from the professional world and 2) I think it's better for all transplant patients to talk about it because more people need to see us as survivors. Especially PKD. It's so prevalent and yet people don't know about it! Also, they need to know that they could save a life by donating a kidney. Imagine if only 1 of all of the people I talk to about kidney transplant gives a kidney? What if I tell more and more people and 2 decide to donate a kidney? Maybe I can make a difference. Here is some information from the PKD Cure website:

"Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases, effecting 600,000 Americans and 12.5 million people, worldwide. ADPKD affects more people than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia combined."

Feeling Sick

2007-06-19T08:29:00.001-07:00

I started to actually feel sick yesterday. First off, I'm really run down even though I'm getting pretty much the same amount of sleep. But more importantly, I am finding it's difficult to think. It's like my brain is really tired all the time. I have to ask people to repeat things because I just don't understand them the first time -- sometimes the second. Also, I get frustrated easily. Today I woke up with symptoms of a urinary track infection. I should call the doctor's office, but I don't want to go in and give a sample. I have some Cipro in the cupboard that I'm considering taking to treat myself. This is what the nephrologist usually gives me so it's not terrible to take it on my own. I guess I signed a piece of paper that said I'd notify the transplant center if there were any "changes in my health." Does this count? Hell, they probably want to know that if I am waiting on the transplant list. I'm gonna get a live donor though so it's less important. I feel like doody. Maybe I'll feel better after a while.

I've been having trouble sleeping. I've been nauseous on and off. I've even noticed that I'm losing my appetite.

**I just realized I left my frozen dinner in the hot car.** hmmmm, what to do....

I asked the transplant coordinator to call me back at work and she calls me at home. I asked her to leave me a message w/ the actual information, but she says "call me back" instead. My prospective donor is in touch with the same coordinator and I get just about 1/2 of my information through her.

I have to say, yesterday was the longest Monday on record. I'm tired. I want to go home, but I have 2 meetings today. Three of the 6 team members can't attend my Team meeting so I could cancel it, but we have so much work to do before September. I don't think the others appreciate how much. Today I asked another team member to work on a specific project w/out me (so I might go home) and he told me I should cancel the meeting instead. He said he can't work with that woman on his own -- that she's completely frustrating. I really want to get this software up and running before I go, but my Team members say to me that my health is more important and we'll manage w/out you. The problem is that they just aren't as motivated as me to get it done. Which I don't understand. They tell me it'll get done even if I have to go out for the surgery and yet they don't show any real interest in helping accomplish the task.

Finding a Donor

2007-06-15T21:07:00.000-07:00

My cousin has started her medical tests to see if she can donate. Initially, her medical tests (blood and urine) showed some questionable results so we had to re-do them this week. She is in a different time zone and this causes some problems between the 2 medical centers. At first, her medical center was waiting for mine to request the records -- while at the same time, mine was waiting for hers to simply send. That caused a delay. I think I'll be crushed if she isn't a match. It has taked so long to work her up. At least it seems like a long time. Maybe it's only been 3 weeks? I honestly don't know. My days and weeks go by so slowly. I'm feeling much less stressed now, that's for sure. Not at all like the last 2 weeks. :-)

Anyhow, that's the update. If she's healthly enough, we'll move onto the crossmatch.

I'm sure people think I'm crazy

2007-06-06T14:47:00.000-07:00

I was thinking about how the stress is getting to me. I am not doing as poorly as I was last week, but I can tell you that my general state of stress is very close the "the edge." The way I think of it is like a spectrum where one end is no stress and the other end is stress to the point of insanity. My day-to-day stress levels are such that it doesn't take as much for me to move in to the zone of insanity. Today, I am at a conference in the midwest. Actually, I'm here all week. It's been trying for me since it's a very rural area (town of 7000 -- maybe.) BREAK --

someone just came near me and rather than sit on the same couch and be social, he sat on the couch next to me. What is WRONG with humans? We're both at this conference. God damn librarians are so fucked up.

Okay, back to my original thought. They keep feeding us crap during the break. Now, there are enough overweight librarians at this conference already w/out the organizers providing unlimited frosted brownies, cookies and sodas. I went on the search for something healthier. I found some wheat thins in the vending machine (good enough, but not the healthiest.) However, the machine wouldn't take my quarters. Then I waited at the front desk for 5 minutes waiting to get a dollar bill for my quarters and the dollar bill didn't work either. Then I asked if I could get some hot tea from the restaurant, but the restaurant is closed. They offer free coffee in the lobby, but I can't have a lot of caffeine -- and they don't have any decaff. So, I thought I remembered another vending machine and went to look for it. When I found it, it wouldn't take my dollar bill. I had to get change from a passerby, but the change finally worked. I did blow up a bit to the passerby, however, saying how I was reaching the end of my tolerance for all of these inconveniences -- and that I wasn't going to "eat a goddamn brownie" even if that was the only thing I could find to eat. I'll bet she thought I was a little over the edge. Sometimes I want to wear a sign on my chest apologizing up-front for being a bit crazy -- that I'm under unusual stress. But as much as I want to provide an explanation, I don't want everyone to know. Also, I'm trying to be strong and be myself, but it's really really difficult to put it out of my mind. I just want to tell everyone -- because it's right in the front of my mind all the time -- and because when I tell people, it sometimes seems more real to me and helps me deal with it. Other times when I tell people, they don't say a thing and I think I should just keep my mouth shut since it just makes other people uncomfortable. I also think that they should hear about it. More people need to see the face of kidney transplant survivors -- which I will be soon enough. You can bet that I'll be talking about it then.

I read something about how depression has a negative impact on the survival rates for transplant recipients. I know that I am depressed, but it's not severe. I don't think anyone has said anything to me about my depression. It's either easy to hide, or people just figure it's none of their business and don't say anything. Right now I am on the verge of crying as I type this because I do feel as though this stupid world and the stupid people in it are so completely oblivious of what's going on inside of me...and isn't it obvious? I figured it was obvious. And unless you say so specifically, they won't pay attention. They don't see the signs. It's no wonder people say all the time -- I should have seen the signs or I should have pressed her more to see how she was after a loved one offs themselves. Which I have no thoughts of doing whatsoever, but if I did, I don't think anyone would even notice.

The trainer I have worked with so closely for this software I'm implementing is completely ignoring me at this conference. bitch.

Not Handling It Well

2007-05-31T22:32:00.000-07:00

Ever since I began receiving completed donor questionnaire's from my family members I have begun to stress out. I have noticed that I have less and less patience generally. I am more worried about details at work. More frustrated with my colleagues. More irritated with fellow drivers. Also, I have been extremely unmotivated to go to the gym. I haven't gone this week at all. It's like that's the thing I sacrifice so I can go home and relax sooner. I have other excuses too...things get in the way. For example, Monday was a holiday and I tend to be less interested in going to the gym on holidays. You know, the routine of work keeps me going to the gym and when the routine breaks, so do my workout routines. I'm feeling particularly fat and gross right now. I'm having my period right now, too, and that makes things worse. I get more emotional and tired from that sometimes.

Here's the thing about the donors. Five people have completed the questionnaire. The ages of these people are appx: 39, 42, 61, 63 and 64. So far, the transplant office has only contacted the 39 year old. She's my cousin on my father's side. I'm concerned that the others are either not in good enough medical condition or they are too old. Honestly, the initial response to my transplant news seemed more positive. Now that it's down to the brass tacks, if you know what I mean, those people aren't coming through for me. I thought there would be more possible donors -- and more that were younger. I thought I might actually hear from these people -- these *family* members. But nobody has contacted me. I know I'm not the best relative, but I thought family always came through for you. I'm not so good at sending greeting cards at the holidays, but hat's because I don't celebrate them. I'm not a religious person -- in fact, I don't even believe in god. But they don't send me b-day cards either and we don't see each other but maybe once a year around Christmas.

I wonder what it will take for people to really step up and consider donating. What about my so-called friends? They don't even check in with me to say hello. I guess I'm just wondering who my friends really are. I always thought I had a lot of friends, but right now I am not sure at all. Even my closest friends in another country are not being all that cool. The woman hasn't contacted me once since the "news." My mother suggested I send her an email to get the ball rolling again, but I'm stuck on this. I guess it's just so disappointing to me I don't want to do anything else. Maybe I want to hang onto the irritation for a little while longer.

I wonder what I'll do if my cousin isn't a match. She's convinced that she is, but there is a good chance she will not be. I should just begin asking friends straight up whether or not they would considering donating. if she's not a match, I don't want to waste any time getting more people to fill out the form. As for my work friend, I think she changed her mind about completing the form. She was pretty darn sure, but when it came down to having the form in hand, something changed. Do you know how that makes me feel?

I'm just so grateful that my cousin is willing to be tested. It only takes one person and I hope with all my heart that she'll be a match.

Possible Donors

2007-05-29T12:35:00.000-07:00

I have received donor questionnaires from my sister, my uncle (dad's brother) and his wife, and their daughter/my cousin. My aunt (mother's sister) is sending hers, too. I may get one from my mother and from a friend at work, too. Thus far none of my other friends have volunteered to be tested. I'm not sure what to make of it. I expected more family members to volunteer, but I guess some is better than none. I suppose if there is any trouble finding a match, more will come forward. When death is a possability, they will motivate people. I'd wished to hear more from my friends, but I guess they don't feel comfortable enough. Sometimes I'd like to just hold up inside the house and isolate myself from everyone. That's how I feel today.

Tired

2007-05-29T10:53:00.000-07:00

I'm tired of being strong and I'm tired of acting like this isn't a big deal. I'm tired of feeling left out. I'm tired of asking and not being asked in return. I'm tired of handling the details. I'm tired of waiting for calls. I'm tired of being responsible. I'm tired of being nice. I'm tired of being happy. I'm tired of understanding. I'm tired of eating right. I'm tired of exercising. I'm tired of "friends" (I'm not tired of friends, however.) I'm tired of grumpy people. I'm tired of the new job and the people with whom I work.

Still Making Urine?

2007-05-18T10:49:00.000-07:00

I just think this is the funniest question. A couple of medical people asked me that when I was going through my transplant evaluation. Are you still making urine? I think about it nearly every time I am peeing. Wow, you really start to appreciate the strangest things when you're faced with a serious illness. I AM still making urine and I'm damn happy about it.

Today I have to have a cardiac stress test. I am not allowed to eat or drink anything 4 hours before the appointment. This is difficult for me, but since I ate a late breakfast, I thought I'd be okay. However, I'm started to get some heartburn. Drinking a lot of water usually helps me through the heartburn, but I'm not allowed to drink anything. I've been able to fend it off for the most part so far. I hope I can last another 3 hours.

My mother has type O blood which has the genotype OO. I just found out my sister also has type O blood. I have type B. That means my father had to have had type B blood with the genotype BO in order to pass on the O to my sister. Good to know. I hope she is well enough to donate to me. My husband is going in today to get blood typed, too. Maybe he'll be a match. I know he's healthy enough to give me a kidney. I'll keep you posted.

Not All Good Today

2007-05-11T16:13:00.000-07:00

Today I'm having an emotional day. I don't know why it hits me sometimes and not others. Luckily I'm happy most of the time -- even if I am complaining about one thing or another. I see bad stuff, but I don't usually let it ruin my mood.

I don't particularly want to go to this get together with "friends" tonight. I chatted one of these "friends" who knows about my kidney failure. Never once did he ask me how *I* was doing or how things were. Thinking back on it now, I shouldn't be surprised. He isn't much of a conversationalist. But how often do you have a friend who has to get a kidney transplant? I guess I figured this situation would be different. I wasn't looking forward to going to this anyhow and this is just the icing on the awful cake. Overall I'm tired of this particular group of people. Several of them are extremely self-centered and obnoxious. Another is loud. Another drinks too much. Yet another is arrogant and rude. The last one is quiet and gets bullied by the rude one -- and won't stand up for himself. Overall, it's just a stressful and unpleasant experience for me, but for some reason, my husband wants to go. I tried to explain that I wasn't interested because these people irritate me, and he accepted it initially -- I thought. Later when it came up again, he was obviously irritated. I suggested he go w/out me and he didn't want to do that. So my choice is to go with him or put up with his bad feelings about it FOREVER. It is obvious to me that he doesn't appreciate how much I don't want to go, but since he won't go on his own, my only choice is to go and put up with it for another night. And I really don't like Friday night activities. It's been along week and I have class in the morning. I want to get some sleep tonight. I can't imagine the fuss he'd put up if I made him come with me to something he didn't want to attend. What's particularly crazy is the fact that he is never like this -- I can't remember another time when he's gotten so upset about me not wanting to do something he wants to do. I just don't know what to make of it so...I'm going.

Another thing is that I can't get several problems solved at work. It's the kind of thing you must rely on others to fix. I'm forever having to put my forward momentum in someone elses hands. Frustrating. The thing about it is that I don't realize how much stress I'm under until I get so frustrated I need to cry or yell at someone NOW. Like I feel myself moving over that edge and I realize just how much stress I'm under. That's where I got today. I'm feeling better now, but I can feel how tired I am -- around my eyes. They are heavy. I'm physically and emotionally tired. I'd like to go home and sit on the couch.

More Research About Low-Protein Diets and Chronic Kidney Disease

2007-05-09T09:12:00.000-07:00

I spoke to my doctor about a low protein diet. She mentioned the Modification of diet in Renal Disease (MDRD) study which she claimed was a large study that excluded diabetic CKD patients and, therefore, had a lot of PKD patients. She said it proved there was no proof that such a diet would slow the progression of PKD. I am looking into it further. It seems she is more concerned (as are other nephrologists) with patients being malnourished prior to dialysis or transplant. She was more adamant about me eating more protein than I have been than she has been about anything else we've discussed. I am eating around 35-40 grams of protein per day. A pretty normal amount. I was shooting for 30, but making about 35 most days.

Because of our conversation I am doing more research on the MDRD study specifically. What I've found is not exactly what she indicated, but I've only done preliminary searching. It seems that there is still no consensus about low-protein diets. Some doctors say it does slow progression, others say is doesn't and yet others indicate that the studies are inconclusive -- that there seems to be some evidence for the positive, but not yet enough to be conclusive. Here are a couple of citations and abstracts for articles I found this morning:

D. W. Johnson. Dietary protein restriction as a treatment for slowing chronic kidney disease progression: the case against. Nephrology (Carlton),11:1,p.58-62 Abstrac: Low-protein diets (angiotensin blockade; and (vi) low-protein diets are associated with both statistically and clinically significant declines in nutritional markers in chronic kidney disease populations, which already have a high prevalence of malnutrition. Patients with progressive kidney disease are therefore likely to be better served by avoiding dietary protein restriction (thereby ensuring optimal preservation of their nutrition) and instituting alternative, proven renoprotective measures (e.g. renin-angiotensin system blockade, blood pressure reduction and statin therapy).

A. S. Levey, T. Greene, M. J. Sarnak, et al. Effect of dietary protein restriction on the progression of kidney disease: long-term follow-up of the Modification of Diet in Renal Disease (MDRD) Study. Am.J.Kidney Dis.,48:6,p.879-888 Abstract: BACKGROUND: The long-term effect of a low-protein diet on the progression of chronic kidney disease is unknown. We evaluated effects of protein restriction on kidney failure and all-cause mortality during extended follow-up of the Modification of Diet in Renal Disease Study. METHODS: Study A was a randomized controlled trial from 1989 to 1993 of 585 patients with predominantly nondiabetic kidney disease and a moderate decrease in glomerular filtration rate (25 to 55 mL/min/1.73 m(2) [0.42 to 0.92 mL/s/1.73 m(2)]) assigned to a low- versus usual-protein diet (0.58 versus 1.3 g/kg/d). We used registries to ascertain the development of kidney failure (initiation of dialysis therapy or transplantation) or a composite of kidney failure and all-cause mortality through December 31, 2000. We used Cox regression models and intention-to-treat principles to compute hazard ratios for the low- versus usual-protein diet, adjusted for baseline glomerular filtration rate and other factors previously associated with the rate of decrease in glomerular filtration rate. We estimated hazard ratios for the entire follow-up period and then, in time-dependent analyses, separately for 2 consecutive 6-year periods of follow-up. RESULTS: Kidney failure and the composite outcome occurred in 327 (56%) and 380 patients (65%), respectively. After adjustment for baseline factors, hazard ratios were 0.89 (95% confidence interval [CI], 0.71 to 1.12) and 0.88 (95% CI, 0.71 to 1.08), respectively. Adjusted hazard ratios for both outcomes were lower during the first 6 years (0.68; 95% CI, 0.51 to 0.93 and 0.66; 95% CI, 0.50 to 0.87, respectively) than afterward (1.27; 95% CI, 0.90 to 1.80 and 1.29; 95% CI, 0.94 to 1.78; interaction P = 0.008 and 0.002, respectively). Limitations include lack of data for dietary intake and clinical conditions after conclusion of the trial. CONCLUSION: The efficacy of a 2- to 3-year intervention of dietary protein restriction on progression of nondiabetic kidney disease remains inconclusive. Future studies should include a longer duration of intervention and follow-up.

S. Mandayam and W. E. Mitch. Dietary protein restriction benefits patients with chronic kidney disease. Nephrology (Carlton),11:1,p.53-57 Abstract: The prevalence of chronic kidney disease (CKD) is rapidly increasing so every strategy should be used to avoid the complications of CKD. Most CKD symptoms or uraemia are caused by protein intolerance; symptoms arise because the patient is unable to excrete metabolic products of dietary protein and the ions contained in protein-rich foods. Consequently, CKD patients accumulate salt, phosphates, uric acid and many nitrogen-containing metabolic products, and secondary problems of metabolic acidosis, bone disease and insulin resistance become prominent. These problems can be avoided with dietary planning. Protein-restricted diets do not produce malnutrition and with these diets even patients with advanced CKD maintain body weight, serum albumin and normal electrolyte values. Non-compliance is a problem, but this can be detected using standard techniques to provide the patient with appropriate responses. The role of dietary protein restriction in the progression of CKD has not been proven, but it can reduce albuminuria and will prevent uraemic symptoms. Until a means of preventing kidney disease or progression is found, safe methods of management such as dietary manipulation should be available for CKD patients.

C. Meloni, P. Tatangelo, S. Cipriani, et al. Adequate protein dietary restriction in diabetic and nondiabetic patients with chronic renal failure. J.Ren.Nutr.,14:4,p.208-213 Abstract: OBJECTIVE: To evaluate whether a dietary protein restriction is useful for slowing the progression of chronic renal failure (CRF) in diabetic and nondiabetic patients and to analyze the possible risk of malnutrition after such a dietary regimen. DESIGN: Prospective, randomized case-control clinical trial. SETTING: Nephrology outpatients. PATIENTS AND OTHER PARTICIPANTS: A total of 169 patients, 89 affected with CRF and chronic hypertension and 80 affected with overt diabetic nephropathy (24 suffering from type 1 and 56 from type 2 diabetes) and chronic hypertension. INTERVENTION: Diabetic patients and nondiabetic patients were randomly divided into 2 groups: 40 diabetic patients received a low-protein diet (0.8 g/kg/day) and 40 were maintained on a free protein diet; similarly, 44 nondiabetic patients received a low-protein diet (0.6 g/kg/day) and 45 were maintained on a free protein diet. The investigation lasted 1 year. MAIN OUTCOME MEASURE: Renal function and nutritional status. RESULTS: At the end of the study, there were no statistically significant differences in renal function between treated and nontreated diabetic patients, whereas treated nondiabetic patients showed a lower decrease in renal function compared with the nontreated group. In both diabetic and nondiabetic patients, the mean body weight and obesity index decreased significantly in treated patients compared with nontreated ones. Serum albumin and prealbumin were stable in all patients during the whole study time, and there were no other signs of malnutrition. CONCLUSION: An adequate dietary protein restriction is accepted by patients, and it is well tolerated during a 12-month follow-up. Without any sign of malnutrition, it is possible to get near the ideal body weight and to reduce the obesity index and the body mass index, which are both well-established risk factors for developing cardiovascular pathology. In nondiabetic patients only, we observed a significant slowing of the progression of renal damage.

The Last Tests

2007-05-04T14:02:00.000-07:00

This morning I had to go to the medical center for the last of my pre-transplant tests and to meet with the social worker. I had an echo cardiogram and an abdominal ultrasound. They told me not to eat or drink anything from midnight on the night before the abdominal ultrasound. Those who know me know what a difficult task that is for me to follow. I NEED my coffee in the morning. Without it I am extremely irritable. Then I find out that the echo will take nearly a full hour. I made sure to tell them that I had to be at the 2nd appointment by 8:45 (15 minutes prior to the actual appointment.) They called the office at the medical center where my 2nd appt was and found out that if I wasn't there by 9a.m. they would cancel my appointment. Nice. They needed to put dye in me to increase the resolution and clarity of the echo so it took a bit longer. Honestly, I looked at the screen during the entire process and wasn't able to tell a difference between the scans before and after the dye was injected. They were super friendly and able to get me finished up by 8:55 a.m. So I ran to the next appt...in high heels...

And I made it in time. Then I had to lie in a cold room, with a thin cover over my naked top half while she scanned my tummy and kidneys. During this ultrasound, I have to roll onto my side and lean back a bit. I'm in good shape, but the leaning back, without a pillow, makes you very uncomfortable after a few minutes. I was on my side for at least 20 minutes, holding very still and using my abs to support the position. It seemed like she was going over and over the same spot again and again. Maybe she's not very good at it? And the right side took a LOT longer than the left. Whatever.

Then I actually got to eat something. I got a plate of food at the WORST hospital cafeteria on the planet. So bad. I had eggs, potatoes a biscuit and a donut. Real healthy, eh? Well, I just didn't care. I was hungry and that was just about all they had. But I didn't eat a lot....just one egg (7 grams of protein.) Oh, and a friggin cup of coffee. Thank goodness.

Then I had an appointment with the social worker -- another member of the transplant team. Again -- whatever. They called me into the office at appt time. Then, oddly enough, they weighed me and took my blood pressure. Seems odd to me that they would need to do this when I'm only coming to see the social worker, but who am I to question. Then 10 minutes after my appoint time, the social worker joins me. She seemed nice enough. Oh, I forgot to mention that I have a new transplant coordinator. I guess they fired the one I met at my transplant evaluation. And I really, really liked her. I want to find her and ask what happened.

Back to the social worker. She asked me a lot of questions and suggested I sign up for medicare. I guess I qualify when I am diagnosed with end stage renal failure. And they will pay for a lot of the drugs. So now I gotta do that. And she mentioned that there is a monthly support group. I don't really want to go to the support group. I don't want to be with other sick people. It will make me sad because I'll be afraid I'll turn out like them. I mean, in all likelihood, they are old and/or fat and unhealthy and probably they eat meat. I know that sounds mean, but I want to model my own image of kidney disease. The memories of my father's experience and look are already difficult for me to handle. I don't want to be in the same room with others' and their experiences.

The social worker suggested I get my husband to begin filling out the transplant donor paperwork. I should be approved by the transplant committee next week. After that, they'll start evaluating possible donors. Also, I got labs done again today. I'm looking forward to seeing what the creatinine is doing.

I was home sick this week for 1.5 days due to severe cramps. I get them so bad I actually have thrown up before. Thankfully, I was able to keep myself from doing so this time, but I was quite nauseous and came close. This doesn't happen to me every month either, thankfully. In any case, I am very behind at work. I have a project that was due on Tuesday, but I'm still not done. Also, I need to get AWAY! My husband and I are going to the desert for the weekend. It's hot and dry -- just wonderful for hanging in the pool all day with a 12 pack of cold beer nearby. I'm looking forward to it. In fact, I'm skipping my biology class so we can leave first thing Saturday morning. I have a new swimsuit, too. God get me outta here.

Back at it

2007-04-27T16:35:00.000-07:00

I've been back to the gym now 2 weeks in a row. Tonight I'll go for a quick cardio workout. Just 30 minutes and not too strenuous. I've read that a rigorous workout can make you hungrier afterwards. Even though it's better to work out w/ greater rigor because it has a longer term impact on raising your metabolism, in the short term, the impacts on hunger are greater. In order to stick with my low-protein diet, I have to really limit my caloric intake. I'm struggling with hunger and a strenuous workout would just make it more difficult. As it is I just manage to get about 1800-1900 kcals per day. I'm limiting my protein to just 30 grams per day, but I have gone over several times 5-6 grams or so. Today I discovered a several companies that manufacture low protein foods. They are kind of expensive, but considering the situation, it's worth it. Here they are:

http://www.cambrookefoods.com

http://www.ener-g.com

http://www.shsna.com

http://www.dietspec.com

I placed an order with Cambrook foods. I'll let you know what I think of the food. Also, I have seen Ener-G brand foods in Whole Foods Markets. I thought it might be useful to make some recommendations concerning lower protein foods that can be purchase in normal grocery stores or health/specialty food markets. I'm finding that most of my shopping happens at health/speciality markets such as Whole Foods and Mother's. I found a brand of granola bar that has just 2 grams of protein per bar and 200 kcals from Health Valley brand. They are cookie bars with vanilla creme. They are super tasty, but the sugar can sometimes gives me heartburn. I didn't used to eat so much sugar. This new diet is a big change. I will get my blood checked next Friday and find out whether it's making any difference. Maybe this blog will help someone else find out about low protein diets BEFORE their kidneys are too far gone.

Feeling Sorry

2007-04-17T12:50:00.000-07:00

Today I am feeling a bit sorry for myself. I just realized it a moment ago. I had to attend a meeting this morning after which I typically feel awful. It's my own fault. Also, with the shootings at Virginia Tech, I am feeling so bad for those people.

I have received several cards from family and friends. They are thinking of me -- wishing me strength and reassurances. Another card arrived last night. The cards are thoughtful, but they disturb me. They make me think about the situation. I'm trying to live a normal life and if I think about my kidneys too much, I begin to realize the gravity of my medical condition. I know how upset I was when I initially heard and I don't want to be back in that place again. Feeling sorry for myself is the last thing I should let happen. I don't want to talk about it w/ others because it feels odd. When they know, the knowledge of it hangs in the air during our conversations. They don't say anything about it, but I know they know. It's heavy in the room. That makes things all that much more difficult for me since it's impossible for me to be "normal." Perhaps it's me projecting those feelings, but I suspect not.

I still haven't heard from our very good friends who live outside the U.S. Not an email, card or phone call. I guess different people deal with this differently.

I haven't been to the gym in a week. I need to go today, but I have a hair appointment. Tomorrow we go to the accountant. Who knows when I'll get back to the gym.

Lotion Recommendation

2007-04-13T09:47:00.000-07:00

I find that with the loss of kidney function, my skin and hair is dry. I am getting older and certainly some of the skin changes are due to that fact, but I believe that the PKD is complicating things. Other kidney patients may be dealing with this as well, so I want to share a product recommendation. I found this terrific face lotion at TJ Maxx. It's from Elizabeth Arden and it's called Let There Be Light - Radiant Skin Lotion. It has SPF 15. I wear an SPF 35 face lotion every day -- under my make-up, but I use the Arden product during the day, at my desk. The great thing about it is that it has a sort of glimmer along with some moisture so you really glow. When you're skin is dehydrated, you lose the glow that is normal in healthy skin. This lotion gives you back that glow.

Also, I highly recommend Obagi Healthy Skin Protector with SPF 35. The great thing about this is that there is 9% zinc oxide so it stays on the skin much longer. Most sunscreen effectiveness wear off during the day, but the zinc oxide helps this sunscreen lotion last most of the day. Since I began using this, I have noticed a significant decrease in the sun damage to my skin.

Transplant Evaluation - NUTRITION??

2007-04-12T12:32:00.000-07:00

Okay, here is the latest....I went to my transplant evaluation meeting on Friday. I met with many different people -- each of whom got to listen to my heart and palpate my tummy. Perhaps this is a method of medical "checks and balances." hmph.

I met with the transplant coordinator. One of the most competent employees at the Medical Center that I've ever met. Honestly, I often deal with the "least common denominator" employees when dealing with making appointments, trying to contact my doctor, paying my bill...and yet I know from experience that the medical professionals are truly competent. Well, this was the most impressive medical experience I have had. The coordinator was professional, knowledgeable, responsive, etc. She's terrific. She had her staff make appointments FOR ME! They called me promptly and they scheduled my multiple appointments together on a single day. They speak in complete sentences and they are patient and competent. They even emailed docs to me when I needed them ASAP. It's been terrific.

Then I met with the nephrologist's assistant -- thus began my first reciting of the medical history and physical exam.

Then I met with the nephrologist. She knows me so not much history required. She talked about how I'm getting worked up early so I can go directly to a live donor transplant. The latest medical research encourages this approach -- no more dialysis if you can avoid it.

Then I met with the surgeon. Another physical exam. But first, he allowed me to ask my many, many questions. He seemed amused. I had investigated all I could (I'm a librarian, after all) about the drugs that are used to keep the transplanted kidney from rejecting. That's most important to me because I know I'll have to take the drugs for the rest of my life. I have a lot of information I want to share about these drugs, but I'll write a specific entry later. The transplant coordinator told me later than she's never seen the surgeon spend as much time with any other patient. He was very reassuring. He talked about how the risks of diabetes or other complications related to the immunosuppressant drugs are much less for younger, healthier, PKD transplant patients. He also showed me where the incision would be -- in my lower groin. I was relieved that the incision is low enough to still reasonably wear a 2-piece swimsuit. I know that sounds trivial, but I don't want to be disfigured. I know life will change, but the fewer changes the better -- and changing my swimsuit habits would be a change.

Then I met with a nutritionist. I was so surprised when I scheduled the appointment and they told me that I would meet with a nutritionist. That seems like a very progressive medical approach. Usually, physicians don't talk about nutrition at all. Even my nephrologist didn't volunteer info about nutritional habits and the impact on kidney failure -- I had to specifically ask. When I did, she only talked about caffeine, but as it turns out, there is a lot of information concerning the benefits of a low protein diet for kidney failure patients. I want to share with you what I found. Basically, the nutritionist recommended that I cut back on sodium, protein, potassium and phosphorus. She gave me some numbers to shoot for, as well, but I have found much more extreme estimates in the medical literature. For instance, the nutritionist recommended I cut my protein to 40-50 grams per day, but some of the medical studies that have been conducted cut their patients back to as little .3 g of protein per kg of body weight per day. That's about 20 grams of protein for a 150lb person. That's very, very difficult to do and some of the studies actually give amino acid (the building blocks of proteins) supplements to the patients while they are on the low protein diets (in addition to other supplements like calcium carbonate - which I'm not taking.)

Check the new feature in the right-hand column. I compiled a list of the references I gathered concerning low-protein diets that might influence renal health. There is a Cochrane Library review article on this topic. In case you aren't familiar with Cochrane reviews, they are systematic reviews, authoritative, scholarly and recognised by medical professionals and the academic community as the "gold standard in evidence-based health care." You will want to locate this article at your local library (if they don't have access to Cochrane Library reviews, they can order it for you from another library), but here is one significant portion:

"Updating two previous meta-analyses...this review shows that reducing the protein intake of patients with chronic kidney disease significantly reduces the number of patients entering end-stage renal disease by about 30%..." The citation to this review article is available in the list of articles on the right.

Then I had to give a boatload of blood, get a chest x-ray, give a urine sample, and get a skin test for a couple of immunizations. Later, I have to get a pap smear, dental check-up, abdominal ultrasound, cardio ultrasound, hepatitis vaccinations, an additional blood test (another tube for blood typing) and I'll meet with a social worker.

THE GOOD NEWS:

-My creatinine went down 2 tenths between March 9th and April 6th. I'm now at a 3.9. This is NOT due to my new low protein diet because I didn't begin the diet until April 7th.

-I am blood type B. Too bad. I hoped to be AB since AB can accept donations from A, B, O or AB blood typed donors. Hopefully, my husband has either type B or type O blood.

Side Effects

2007-04-06T00:31:00.000-07:00

I go to my transplant evaluation tomorrow. I have had a good week, but I'm realizing that that is because I'm ignoring the negatives related to this disease. Really, I have managed to put all of that out of my mind. Right now I'm feeling a little worried. I know going to gym makes me feel strong and indestructible and ...well, there are great odds that I'll do well because I'm so healthy. But these medicines are super powerful and cause some crazy side effects. I've been reading about bone disease problems, diabetes and many side effects like constipation, stomach pain, nausea, heartburn, diarrhea...the steroids cause you to have a voracious appetite and thus you gain weight and you get a round look to your face. So, I'll be alive, but I'll be fat, diabetic, ugly, won't be able to eat spicy food and will easily break bones...will I also go bald? Ii did see that as a side effect of one of the drugs. I don't remember which. No wonder my Dad gave up and preferred to die. Who could blame him?

Strength

2007-04-04T13:52:00.000-07:00

Last night I went to the gym. I usually lift weights and do cardio on Tuesdays and Fridays. Then I do a quick cardio workout on Wed and spin class on Thursday. I'm also active on the weekends. Some more than others, but basically, I take care of myself. The point is that I just can't get over how strong and fit I felt at the gym last night. For the first time since "the news" I felt like I could kick the world's ass. Really. What the hell am I worried about? I am fit and healthy. I've been a vegetarian for 15 years. I exercise regularly and take good care of myself. If anyone is up to the challenge of a kidney transplant, I am. I'll show them what an ideal patient looks like. I don't look forward to getting back in shape again after the recovery period, but I can do it. I'll be more fit than ever. I do worry a bit about them having to cut through my muscle inthe lower groin to do the surgery. Will that ruin my muscles so I'll never have a flat tummy again? I sound so shallow, but I do work hard to be fit. I deserve to look good.

The point is that I'm feeling good today.

Talking About It

2007-04-03T16:39:00.000-07:00

Today I started to tell a few people. First my closest female friend. I don't think she knew how to deal with it. I heard her typing something while we were talking. Then I told a male friend who is older and more experienced with medical problems. He was super compassionate. He even said he's be tested for donation if I needed. I couldn't believe it.

Then I had to call my mother. I read something last night on one of the kidney transplant sites I've been visiting on a daily basis...that I need to talk to people about this. That I need to rely on my family and friends for support -- or others in the same situation. I actually do feel better after telling a few people. But I still don't know about revealing anything to people at work.

Back to mom. She's been through all this with my dad. That was nearly 30 years ago and a lot of things have changed. She was upset. I could hear it in her voice, but she was being pretty calm. She didn't want me to be upset. I'm actually a little surprised at how calm she was. I think she could hear that I was already to a point where I was dealing well with it -- well, not really, but I can hold things together for brief periods.

The funny thing is that it is so distracting. It's like I can't STOP thinking about it. I feel as though I in an altered state -- that this isn't really happening to me. Like I'm floating around in some other world and not my real life. Maybe because my feelings are so disconnected from the usually daily activities. I'm living in my mind -- trying to deal with a new reality and the changes that are inevitable. I mean, when in your life are you presented with such major changes the are truly out of your control? I mean, if I want to LIVE, I have to do this. Most people would choose to live. That means coming to terms with the changes that are inevitable.

But I have so many concerns that might seem insignificant like how will I implement this new software for my job before I leave for the surgery? Will someone else have become more of an expert while I'm out? Will I have a job to return to -- I don't mean that I think they'll fire me, they can't, but will they do w/out my position for so long that when I return, they will no longer need me? Can I work from home while I'm recovering? I could take a 10 month contract and use the 2 months off for my surgery. Can I return to work w/in 2 months of transplant surgery? Will I have to leave before I can even train the staff on how to use the software? If so, how will I ever establish rapport with them? Will people treat me differently when I get back? How? Will they respect me less -- that is, will they treat me like a sick person and sort of talk down to me or feel sorry for me? Maybe they'll like me more and be nicer to me. Goodness knows they haven't been all that great to work with thus far. They are extremely disant and cold. When do I tell them?

I have so many questions. The uncertainty is tearing me apart.

Last night I logged into medlineplus.gov and searched for kidney transplant. There are so many great resources there. Including a video of a live donor kidney transplant. I watched almost the entire video. It was amazing.

Focus

2007-04-02T13:54:00.000-07:00

I'm still finding it's difficult to focus. I can't decide whether to talk about it w/ others or not. Part of me wants to tell someone, but another part of me says to just be quiet and try to live normally. How can I live normally? This is on my mind all the time. I try to keep busy, but it's always there in my mind, humming in the background. I just want to let it go for a few days and relax a bit. It's not imminent after all. Why not just put it out of my mind for a few days? Indeed, if it were so easy, I would have forgotten already. And of course, I have to get my blood tested again this week. Once a month updates now. We'll keep right on top of this kidney failure so I can rush to get a transplant as soon as it's necessary. Damn. The only reason I want to tell people is to get them thinking about donating their kidneys to me. It seems crazy, but I suspect some of my friends will show interest.

My husband told our close friends this weekend and surprisingly, they haven't emailed me. They are both quite young and maybe they don't understand the significance. Then again, maybe my husband made it seem less major so they wouldn't worry much. He might have exaggerated the estimated time I have left on my native kidneys.

Speaking of my husband, he is acting really close to me. Sitting near me a lot and kissing me differently. I don't like it. I know that sounds awful, but I don't like being treated differently, AT ALL. I don't want to deal w/ this.

I'm don't want to be a sick person

2007-03-30T18:50:00.000-07:00

But I guess it's too damn bad because I am sick. I feel like such a fool. I know she must have told me about the significance of my creatinine, but for some reason, it didn't click in my mind. As my number has increased steadily over the last few months, I kept thinking I still had more room, more time. Not so. The news is that she (my nephrologist) wants me to get signed up to a transplant program. What the hell. I went from thinking I would last until I was 40 to this--transplant time. Initially it's too overwhelming to consider it all. I have been keeping busy for the last 3 days. wondering how I can deal with this so soon. I really wasn't prepared for her to tell me that I needed to get on a transplant list. That was something I was expecting not to hear for another decade. I don't know how I fooled myself, but I did. the thing is that I just don't feel any different. I feel well. I have no symptoms. Well, other than the anemia and high blood pressure (which are both under control.) I was so angry when she told me...then it struck me that she was really sitting there in front of me tell me *I* had to get on a transplant list. This was the meeting I had feared for so long. All I could do was curse and cry. It is so unfair to have a genetic disease. I have done everything I could to be as healthy as possible, but to no avail. I am stuck with damn kidney failure anyhow. Fuck, fuck, fuck.

Then I walked around for the next 3 days in a haze. Not really focused on work. Not really focused on my predicament. I have been keeping busy. I actually went to the gym after my doctor's appointment. The only major difference in my behavior has been a greater willingness to put an end to bullshit around me -- less patience for the bullshit. I actually told some people to get off the machines at the gym because there is a 20 minute limit when people are waiting. I walked right in front of them and looked them both in the eyes while I said "There's a 20 minute limit." They really didn't know what to think. Maybe that's just me taking out my frustration on others -- it's probably not good. Another thing is that I have just started to cry here and there uncontrollably. Not sobbing or anything, just a little weeping. Usually, it strikes me when I'm driving alone in the car. Otherwise, I keep busy.

What can you do anyhow? Not much. But I do wonder, should I tell my family? My husband knows and he's been pretty upset about it. He said to me tonight that he just couldn't bear losing me. He has been really upset by this. I find myself being more angry than anything else. I hit the dryer tonight for no reason -- it just felt good to hit something over and over and over -- I thought I might have fractured my hand, but it's okay now. In any case, I don't really want to deal with the reactions of other people. I'm having a hard enough time dealing with my own feelings, much less helping my husband cope or anyone else for that matter. That's why I don't want to tell my family. I don't need the pity. I don't want them to feel sorry for themselves because I have this illness. I don't want them to tell others and get pity for themselves, or for me because I have this illness. I don't want to be a sick person. Did I mention that?

Not to mention the fact that I don't want someone to cut my body open. I don't want another person's kidney in my body. I don't want to be at greater risk of other diseases -- I don't want to take handfuls of pills every day for the rest of my life. I don't want to be a sick person. I don't want to worry about taking vacation because "something might happen" and I need to be near my doctor. I don't want to trust a bunch of medical idiots with my life. I don't want my family to come out here and look at me in *that* way. I don't want to take steroids forever -- what the hell side effects do you get from those? I should look into it, but then again, do I really want to know? Will I get fat and hairy? "Maybe so, dear, but at least you'll be alive." Just what you want to tell a woman in her prime.

I wonder about telling my family because I might need a kidney from one of them. But who? One sister isn't in the kind of shape you'd want someone to be in to donate a kidney. She's asthmatic and overweight. My mother is probably too old and not in great shape either. That's about it. Aunts, cousins, and more distant relatives I'm not close to. What about my friends? Would they give me a kidney? My husband said he would, but would my close friends make such a sacrifice? My closest friends aren't currently living in the U.S. Would hey come back for this? Would I want them to come back?

I'm just not ready to tell anyone yet.

Rapamycin PKD trial

2007-03-21T09:21:00.000-07:00

So I got a message from a nurse at the Cleveland Clinic working with the Rapamycin PKD trial. Of course, I told her I was still interested. In response, she wanted some additional information. I suspect the only important piece of information for her was my creatinine level, but she threw in questions about whether other family members had PKD or other serious illnesses. I figured, with a 4.1 creatinine, I'd be a perfect candidate. It's obvious my PKD is progressing so wouldn't I be a perfect candidate for a trial to halt the progression of cyst growth? Also, it does run in my family. My dad's kidneys failed in his late 30s and one of my siblings has PKD (non symptomatic -- lucky! (think Napoleon Dynamite.) Her very quick response said "Thank you for your response. Unfortunately your creatinine is too high.
I will keep your name should any other study begins." Too high? How is that supposed to make me feel? Maybe somebody isn't being straight with me. Maybe this damn illness is more advanced than I imagine. I feel fine. I feel great. I've never felt better in my life. I work out regularly and take good care of myself. Really, I just don't know what to think. I wonder what the max creatinine count is that they'll accept? What if the trial had taken place last year when I was still in the 3-4 range? Hell, that's a waste of my time to consider. It isn't last year after all, it's this year and I'm fucked out of that trial. Damn this genetic disorder. Damn my parents for not knowing this ran in the family and not having children. Well, okay, don't damn my parents. I could detele that and none of you all would know that I said such an awful thing, but there it is. I'm not taking it back. That's how I actually feel sometimes. What the use in knowing that I have this damn disease if I can't to anything to prevent it? Does all the working out and being a vegetarian and cutting back on caffeine make any difference at ALL? Does knowing from an early age that I have PKD increase the likelihood that I'll have kidney failure? I mean, you read about those studies concerning stress and illness. Do the negative thoughts and fears related to knowing have an impact on the progression of the disease? It would be different if heart disease ran in my family -- you can do something about that to increase your chances of a long, healthy life. But PKD? You really can't do much.

One good thing is that I chose not to have children. That decision was not largely due to the PKD, but that was a factor. Also, my sibling with PKD didn't have kids. At least we stopped the defective gene. Hopefully, my cousins don't also have it. Most of them are my age or older and there have been no signs of the illness thus far.

started to lose it today

2007-03-16T15:29:00.000-07:00

I spoke with my doctor on the phone today. She said to begin taking the Aranesp every 3 weeks. That 60 mcg every 3 weeks instead of 2 weeks. Looks like my anemia is now under control. She was curious about my blood pressure. It's been fine. Then she said, again, that my creatinine is at 4.1. There was something in her voice when she said it...a pause or tone... a sort of intonation that implied concern. Usually, she's a pretty good "poker face" and I have a difficult time reading her, but not so much today. That was the worst feeling, really.

What's particularly odd about being in this situation is that I want to talk about the illness, but I don't want to talk about it with people close to me. Like my husband or my good friends, famliy. I guess it's because I don't want them to feel sorry for me. I don't want them to think I'm talking about it because I'm falling apart -- or that I need them to say something optimistic. Overall, the conversation is probably uncomfortable for them anyhow, so I just dump my thoughts in this blog.

The reality of my situation struck me after I hung up the phone with my doctor. She could sense that I was feeling concern. She said not to worry ... "That's my job. " It's a genetic disease I can do nothing about and so on...

But when I hung up the phone, I just put my head down on my desk and sat quietly. Tears actually started in and I thought "don't feel sorry for yourself." You have a long way to go with these kidneys and as far as you know, they will be fine. Goddamn it all, it makes me angry, too. There must be something more I could be doing. Then I pulled it together to go to a meeting.

Do you want the good news or....

2007-03-15T09:54:00.000-07:00

My doctor called me back yesterday. Although she didn't get me on the phone, she did leave a message that my hemoglobin is up to 11.8! That's the good news. Not surprisingly, however, my creatinine is up to 4.1. I called her back right away, but missed her again. Can you believe in this day and age, in Southern California no less, I can directly call my doctor? She's the greatest. One night she called me back from her home -- I knew because I could hear the dog and I heard someone come home while we were on the phone. This person yelled "I'm home" when coming in the house. funny stuff. She explains everything to me with patience and honesty. I think she sees that my progressive disease is progressing and doesn't want to stress me out too much. She indicated on the phone message that she's interested in hearing what my blood pressure is -- I checked this morning and it's good: 128/88.

more later

Back to reality

2007-03-08T18:56:00.000-08:00

I have been feeling strong for a while now. It's bound to come raring back and it did today. Overall, things are really not bad at all, but I'm finding it's difficult to stick to my healthy regiman. For example, I'm back to drinking a beer pretty much every day with dinner. At least it's a light beer. I haven't been so sleepy so it appears that the Aranesp is working. Tomorrow I get another shot. But today I have been having flank pain. Sometimes I think about making up some shit in this blog -- shit about how healthy I am and such, but honestly, I struggle to stick with being healthy everyday. Some days are better than others. Otherall, I think I do better than the average person in the U.S., but I don't think I do well enough for someone who is fighting a progressive disease.

I took a hot bath to relieve some of the pain. It helps. Earlier today I was beginning to get a headache. I had one earlier this week, too. I decided to take an Aleve. Sometimes I wonder if those pills are just too much for my kidneys to handle. I mean, what if that's why I am having kidney pain now?

I went for a blood test today. The doctor says that when my iron begins to improve from the Aranasp, it will bounce back quickly. After 1 month, it had only gone up 0.1. Now it's been over 2 months so I'll let you all know. Unfortunately, they'll get my creatinine, too. I don't look forward to seeing that number increase AGAIN.

Also, in case you're wondering, I have not been drinking the wheatgrass every day. That lasted about 7 days. Really. I spent $250 on a wonderful, top of the line juicer and I've only used it about 7 times. I need to get wheatgrass at the health food market and get into the groove.

I haven't been going to the gym as much as usual for the last 2 weeks. The first week was due to the fact that I had a big test in my class and was studying after work rather than going to the gym. The second week, we had company. So this week I've only been once and it's already thursday. I was going to go tonight, but here I sit on the couch. I left work early to go for a blood test. I had hoped to get to a 5:30 spin class. No such luck. then I confinced myself that with the back pain, I probably shouldn't go to the gym. Maybe so, maybe so. I hope to run on the treadmill later if I'm feeling like it. In the meantime, I'm trying not to crack open a beer. I could always run after a single light beer though...right? In any case, now it's 7:15 and I haven't worked out nor have I opened a book. Real productive.

I'm going to try to get my ass in gear.

Caffeine

2007-02-22T12:28:00.000-08:00

I'm falling back on caffeine again. Earlier this week I really felt as though I was off my game. I used to find the words I needed to say quickly and with ease, but lately, I struggle and pause a lot in my sentences to find the right phrasing. I'm not sure if it's the anemia, the new work place still intimidating me a bit, aging, or what. But I can tell you that I am sick and tired of people who finish my sentences or just cut me off entirely when I am pausing to think of the right words. That must be hell for people who don't communicate well. Then again, maybe you get used to it? I certainly won't. In any case, my weapon against this is to drink caffeine before a big meeting. Then I know I will have the energy to think better. Even if it is short-lived. And anymore, I wonder whether it really matters whether the cysts get bigger because of the caffeine or because of the natural disease progression. After all, they are already huge and my creatinine is nearly 4 so it's pretty obvious that things aren't going well for me. So, if the disease is going to progress anyhow, why not just drink caffeine when I want? Fuck it. I have to think about my quality of life. I am particularly concerned with my ability to do my job well and earn the respect of my co-workers.

Speaking of work. I am no longer going to call in sick. I need to save my sick leave up just in case I have some health problems. I just started this job last summer so I'm earning it from scratch again. As faculty, I can come into work for a few hours and leave for the day, but it still counts as having worked the entire day. That's what I'll do from now on. I had weeks and weeks saved up at my last job. Too bad I couldn't transfer it to this one.

Now, I will return to my beautiful caffeinated beverage.

Numb Toes

2007-02-13T06:53:00.000-08:00

Last Friday I played poker with friends. I drank too much -- 2 large glasses of wine and 2 beers in 5 hours. Who knows why I do that. I've been so good lately, but the social atmosphere and poker playing always gets me. In any case, I was a bit hung over on Saturday. I had to get up early to attend a 9am class. Well, what I'm getting at is that my right toe was numb for most of the day. I don't know why this is so, but I do remember reading something written by another PKD patient that she experienced this numbness as well. The only thing I can do is cut back on drinking to be sure that isn't the cause (or drink too much again! no thanks.) It was odd.

I have been feeling quite good lately. No back pain. No feeling like my kidneys are expanding exponentially and thus causing my waistline to disappear. Perhaps the low caffeine, low alcohol "diet" is helping. Today I'm wearing pants that I haven't worn in nearly a year. They are a little snug, but I don't have any meetings today so I don't have to leave my office. lol. This new job is pretty cool that way. Not many meetings yet so I have a lot of free time in my office. Well, I guess it's not technically free time -- it's work time.

I ran out of wheatgrass and haven't had any for a week. I need to buy a tray and then plant my own. It takes 7-10 days to grow your own for juicing. I spent all that money on the juicer so I should use the darn thing. Hopefully, it won't make me feel nauseous again.

Today I'm going to make an appointment with my nephrologist. She wanted to see me in the next 1-2 months. I've been procrastinating for a month now, so I'd better call. Just right now, my right big toe is getting numb again. I drank a Miller Light last night, but just one! I wonder what could be causing it. I used to think it was the shoes, but it seems to happen in all different types of shoes. Today I'm wearing totally sensible flats so it can't be the shoes.

Bad Day

2007-02-01T13:15:00.000-08:00

I'm having a bad day. I shouldn't let people bother me so much, but little stuff just adds up over the course of the day and I want to blow. I believe it's important to be happy and optimistic when you're fighting an illness. Stress makes it more difficult for your body to fight disease. However, I have certain expectations that I shouldn't have, but that still hang around me and create problems. I expect people to be competent. I expect people to be polite. I expect people to be considerate of my feelings, but people do what they do because of their own agreements and understandings of the world and what is "right" behavior from their own perspective. I have to try to remember that -- and don't take anything personally.

Several things happened this morning that have pushed me to the brink. Finally, I got some lunch and indulged in a diet coke. That caffeine can make me feel so much better. That's one nice thing about cutting back on caffeine -- when you do drink it, you really get a strong effect (same w/ beer!)

I didn't go to yoga this weekend. My husband and I didn't feel like interrrupting our weekend "getting things done" routine to go to yoga -- even though it makes us both feel great. Maybe you know what I mean? I just find that it's difficult to spend time in the gym on the weekends since that's my completely free time. I totally enjoy going to the gym on the weekdays though. I definitely don't go on Saturday, but it would be nice to have a routine for Sunday that I *want* to do. I haven't done all that well w/ the new lifting routine. I only listed once last week. This week I'm on track to lift twice and get to the gym 4 times if all goes well.

I need to make an appointment to see my nephrologist in the next 2 months, but I just don't want to make the call. I guess I don't really want to know my latest numbers. I feel good lately. Presumably that's because of the aranesp shots and the iron infusions. It'd be nice to know how long those infusions are supposed to last. I'll do the Scarlett thing for now and "think about it tomorrow" -- the drs appt, I mean.

How do I deal - What am I doing about it?

2007-01-29T17:33:00.000-08:00

I got my first blog comment! Thank you dbigsieg! He told me about another PKD study -- Tolvaptan at Otsuka Maryland Research Institute. There is more info here. I left a message. Their voice mail says they'll call me back in one business day. Fingers crossed.

I've looked into other clinical trials and research studies, but had no luck so far. Honestly, I don't know how I missed this study. I'm hopeful. This latest study uses some drug to stop the growth of the cysts. I don't know anything about it, but my doctor did tell me that one of the anti-rejection drugs they use after transplants is being studied right now for it's cyst shrinking possibilities. She also noted that these kinds of drugs have a lot of side effects.

The most frustrating thing about this disease is that there is nearly nothing you can do to stop the progression -- and you often don't even know that your kidneys are getting worse because you can live w/out symptoms entirely. For me the worst part has been the anemia, but I do sometimes have back pain. I am an active person and I need to be able to think on my feet. The anemia slows me down physically and mentally. I find myself struggling to find words sometimes. It's typically worse in the afternoon. The culture in my current institution (I work in higher education) emphasizes afternoon meetings -- late afternoon meetings. Luckly, I am the chair of most of my meetings so I was able to change that practice. However, I still attend 3-5 pm meetings where I struggle to stay alert (or awake on bad days.) Sometimes I cave in and drink a caffeinated drink to get me through. Then I force myself to go to the gym. The traffic in So Cal is legendary so my drive to the gym is usually slow. That makes the sleep so much more appealing that I usually struggle to keep my eyes open in stop-and-go traffic.

My husband gave me my latest bi-weekly Aranesp shot on Saturday. I think he enjoys it.

I'm back on wheatgrass today. This is one of my attempts to do something to slow the progression of this disease. I bought a beautiful wheatgrass juicer. It's a power juicer, but it's totally worth it. I figured it'd be this loud machine, but it's actually very quiet. It will juice more than just wheatgrass, too. I bought the Omega 8005 model. Really, it kicks ass.

This morning I combined my wheatgrass shot with some cantaloup juice. No upset stomach!

This is just one of many efforts toward slowing the progression of my PKD:

Keeping fit by going to the gym 3-4 times per week for aerobic and strength training.
Being a vegetarian for 15 years. Although PKD was not my initial reason, sticking with it has been and as it turns out, there may be some evidence that a low protein diet is better for PKD kidney health.
Controlling my blood pressure (I'm on 2 bp meds now: Norvasc and Diovan.)
Staying away from rough and/or bumpy activities that could put stress on my kidneys (no roller coasters, no Baja racing, no tackle football.)
Taking yoga once per week to improve flexibility, lower BP, increase circulation and organ health.
Drinking wheatgrass. Most of what I have read doesn't indicate that wheatgrass has any direct effect on kidney health, however, if it has a general cleansing effect w/in the body, it could help my body be as healthy as possible. I have read a lot of anecdotal information about the benefits of wheatgrass, but I'm not a scientist so I'm not the best judge of the legitimacy of the medical research. I do know there are studies that indicate it is beneficial to building red blood cell count, but these are animal studies and I don't know the exact circumstances. The bottom line is that at this point, I'll try anything that doesn't harm me.
Cutting out caffeine almost entirely (I have 1 cup of coffee that is 2/3 decaf and 1/3 regular.) There is medical evidence that caffeine can cause the cysts to grow larger.
Cutting back on alcohol. My doctor tells me that there is no evidence that alcohol has any impact on the speed of the PKD progression. But better safe than sorry. I'm not saying I gave it up though!
Being positive. I try to think positively about the disease and to be as happy as I can be. Also, sometimes when I think about it, I imagine being enveloped in while healing light. I'm a strong believer in visualization.
Don't drink mineral water. Too many minerals can be hard on the kidneys. I drink only distilled water at home.

Geez, exactly 10!

The weekend

2007-01-27T10:08:00.000-08:00

I'm so glad it's the weekend. I'm sitting on the couch drinking my 2nd cup of coffee. It's half decaf, of course. Since caffeine is supposed to cause the cysts to get bigger, I have tried to cut back. I have weaned myself off most caffeine. Weekdays I have 1-2 cups of 2/3 decaf coffee and on the weekends, I usually drink 3 cups or so. But yesterday I had a diet coke with my lunch. it's pretty easy to get caffeine free diet at the food court on campus, but I had the combo meal yesterday and it comes w/ a fountain drink. There is no caffeine free diet beverage at the fountain. Honestly, it's surprising how few quick shops, food courts, restaurants and grocery stores have a caffeine free diet option. Re the grocery stores, I mean the cold selections they keep at the front of the store -- you can always buy 12 packs of anything warm. I can usually get a sparkling or flat water, but sometimes I want more flavor and variety. There is a quick shop in Baker, CA, on the way to Vegas, where you can get a diet caffeine free root beer! I can't tell you how stoked I was to see that. They also make a diet orange drink, but they add caffeine. You'd think that quick shops in So Cal would be able to afford a greater selection, but really, it's impossible to find anything that meets my needs other than water.

Tomorow is Bikram. I'm looking fw to it. I didn't go to the gym last night because I met some friends for happy hour instead. I drank 2 pints of beer, too. I haven't had that much beer in quite a while. I'm trying to cut back on drinking, mostly because of the empty calories and generally bad health effects, but not specifically because of the kidney disease. My doctor tells me that although drinking to excess is never good, there is no research that shows it's specifically detrimental for PKD sufferers. One great things about cutting back is that you really get a buzz after drinking less, so you save money! hahaha

I'm trying to decide whether I'll have wheatgrass today. I skipped yesterday, so I should today, but I'm not looking fw to the tummy ache.

Taking Care

2007-01-26T10:18:00.000-08:00

I don't know how I escaped learning what I'll call "feminine stuff" while growing up. Maybe it's just that I was a bit of a tomboy. Mabye I just wasn't exposed to it. In any case, I haven't always taken great care of myself. By that I mean, haircuts, moisturizer, shaving/waxing, make-up... I played around w/ makeup as a kid, but I wasn't very good at it. It never seemed to look very natural to me, but I always wanted to be more feminine. Yet I didn't feel comfortable with my femininity through most of my 20s. Maybe this is something that all young women go through? Some women have mothers who teach them these things. I know because I see them in the spa and out shopping, but mine really didn't. Although she did take care of herself, and still does, things were simpler in Nebraska. Manicures weren't normally something women did or talked about. We didn't go to the mall or buy designer clothes. That was reserved for women who were rich. It's not that we didn't have the money and certain points because my Dad did quite well financially a lot of the time -- until he died. My mother was practical -- she was raising a family on one income. I love that about her.

It took be until I was 30 to start to get the hang of this "feminine stuff." I did reject a lot of that in my 20's for lots of reasons -- some related to my feminist ideals. I guess I thought waxing and make-up, etc. was a societal pressure meant to occupy women with the trivial -- to emphasize our aestetic value. I think this is an outdated idea though -- I now believe women can embrace femininity and still be seen as intellectuals and professionals. In any case, I feel so much better when I take time to care for myself. That's what I'm trying to soay. I'm still not big on make-up, but I do like to dress well. I get regular pedicures and facials...

Overall, my point is that it makes me feel good to care for myself. In the last few months I have created new habits. I take more time for myself in the morning. I put lotion on after my shower in the morning. I used to slap on lotion here and there when I was very dry. I can't tell you what a difference it makes to feel my own soft skin througout the day. It seems like a small thing, but taking care of yourself really can lift your spirits. I take the time to pet my cats and sit to drink a cup of coffee in the morning, too. I get monthly facials, good haircuts, leg waxing, regular pedicures and I have a clothing budget. Anyhow, I can't emphasize enough to all women that you should pamper yourself. Especially if you are not well or if you spend a lot of time taking care of the people in your life. Even if you do just ONE of these things, you'll feel better through the day. We're worth it.

just another day, but

2007-01-25T22:20:00.000-08:00

at least I had a lot of energy. I started out pretty hopeful today. Hopeful that things would go well in my meeting. That didn't happen, but I'm not here to talk about my job.

I've had a lot of energy lately. Perhaps this new anemia treatment is actually helping. I pretty much took about 6 days off from the gym in the last week. I had to go to a conference. I did manage to go to the hotel gym once for a brief workout (no lifting.) But I bought a workout magazine for the plane (Muscle & Fitness Hers) and it had some good information and 3 great new workouts. Yesterday I tried the first one. I usually lift twice a week even though I should do it 3 times. These routines, of course, recommended 3 times per week. But the intermediate routine looked reasonable. It seemed like a bit less than I usually do, but I figure change is good. I did alter it slightly -- adding in pushups and a hip abductor exercise, but otherwise, did as it recommended. The biggest change in this routine is that they recommend you use a diifficult weight and do 3 sets of 6-10 reps. Typically, I've read that you should do 12-15 reps. Anyhow, I actually felt a bit sore today so that's good. Then I jogged 30 minutes on the treadmill which is something I haven't done in months! Then I went to a spinning class today. I may take tomorrow off since I have Bikram yoga on Sunday. We'll see.

The point is that I have a lot more energy lately. Just before the holidays I got iron infusions. Three days for 1 1/2 hours each day. Starting in December, I have been getting bi-weekly aranesp shots. I don't have my blood test results in front of me, but I can tell you my number that represents iron went up .1 one month after the infusions. Big deal! They tell me it can take time to see results, but I really feel more energetic.

I started taking daily wheatgrass shots yesterday, too. Thus far it makes my stomach hurt for about 2 hours. I hope it gets easier.

Who am I?

2007-01-25T14:27:00.000-08:00

I'm a person dealing with a hereditary disease, trying to live a normal healthy life. Well, perhaps not so normal since a healthy life for me is perhaps more important than for the average joe. I have Polycystic Kidney Disease. You may not have heard of it, but it's a very common disease. It's inhereted and I got it from my father. He was diagnosed when I was a child so my siblings and I were tested, as well. Two of us have it -- me and my older sister. She, of course, doesn't have any symtoms, but I do.

I am in my 30s and have been on blood pressure medication for 6-7 years. My creatinine is going up and up and I am struggling with anemia.

This blog is about my daily struggle to be healthy and live with PKD.