Long day... good and bad news!

I saw my lung transplant pulmonologist today at Duke. I was due to see him soon anyway, but my nephrologist thought I should see him this week, since I had some dehydration and fever. He is essentially my primary doctor.

We discussed a lot today. First of all, he thinks that my sinuses are rearing their ugly head again. He seems to think that's the likely source of my fevers. There are 2 things that I can do for that now. I can have surgery of course, which is going to be due again sometime in the future.. I'm just not sure if I want it before kidney transplant. Then there is IV antibiotics. For me, that means being hospitalized to be desensitized, because I am allergic to all antibiotics that treat the bacteria I have in my sinuses. This will most likely be the first route we take. He wants to see how my fevers are in the coming weeks.

We also talked about my anemia. He is going to let my nephrologist take care of that since he is closer to my home, and it will require me to get IV iron once a week. He said with my antibody level already so high, that if the IV iron doesn't work, he won't hesitate to give me a blood transfusion before transplant. He said the transfusion might give you more anti-human antibodies (those antibodies that make me so incompatible with the general population), but it's not going to make that much difference with me since most transplant patients have an antibody level around 5 or 10% and mine is around 90% already.

Speaking of antibody levels... I was told when I got my lung transplant in 2001 that I would never be able to receive a second lung transplant if I ever needed it. This was because of my antibody level which required me to get lobes from my relatives instead of cadaver (stranger) lungs (and the fact that they had used the only 2 relatives I was compatible with out of approx 40). I hadn't really thought about that over the years. I still accepted that to be true. They had tried many rounds of plasmapheresis to try and reduce the antibody level prior to my lung transplant, but that didn't work. Since I seem to be having some chronic rejection (explained below), I thought to ask him about that today. He told me that now they give the drug Rituximab, and it does a great job of lowering antibody level. For those of you who keep up with Tricia's story, you may remember she was on that for her lymphoma, but it didn't treat it like they hoped it would. My doc didn't seem to think that I would get to the point of needing another transplant, but I do at least have that hope now.. that if I needed it, I could get it. It's the first time I've ever had that hope. :)

Ok, about the chronic rejection. I started some last year. I was put on some additional anti-rejection medications to treat it, and my lung function seemed to respond to it and got better. Today, my numbers looked pretty bad. My doc seems to think that its due to my fibromyalgia, fevers, kidney disease and general fatigue more than anything. He says that just about all transplant patients who are almost 7 years post-transplant, like me, will have some chronic rejection. They may never know it, but it's there. You can read here for a simplified description of acute vs. chronic rejection. Because my lung function has dropped, my doctor wants to do a bronchoscopy on me when I return from the beach. It's something that post-transplant patients get plenty of, so it's no big deal. It checks for all kinds of infection and acute rejection and can sometimes detect chronic rejection.

My nausea was a big topic of the day. My doc wants me to discuss with my nephrologist which would be best.. transplant now, or transplant after a few months of dialysis. Studies do show that those kidney transplant recipients who haven't had dialysis, tend to do better than those who have, but those results could solely be based on the fact that MOST people who get dialysis first, are doing so because they have a long wait for transplant, and their kidneys are almost not functioning anymore. My reason for dialysis would simply be to help build my appetite and give me some strength.

There you have it. I know I'm quite long winded lately. Sorry for that, but I hope that explains everything!!