Tuesday, February 8, 2011

Missing the Blog

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.

Thursday, April 23, 2009

Hey Jack

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.

Sunday, August 10, 2008

8 months from surgery

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!

Tuesday, April 8, 2008

Side Effects

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.

Wednesday, January 23, 2008

New transplant research -- No immunosuppresants!?

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...

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.

Monday, January 14, 2008

5 weeks after surgery

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.