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.
No comments:
Post a Comment