Public Relations

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

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

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

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

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

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

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

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

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

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

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?

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

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

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

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

December 7th!

Scheduling .. No Focus ...

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

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

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

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

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

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

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

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

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

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

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

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

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

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!!

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

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

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

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

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

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

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

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

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

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

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

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

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?

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

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

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.