New blog and new kidney - Life is good....
I'm excited to be here as the "New Transplant" blogger (although I guess THAT will change as time goes on). I've been blogging for several years now (prior to ESRD), first on LiveJournal, and currently on WordPress, so even though I'm a transplant 'noob", I'm not a blogging noob.
I thought I'd do my first post here on how things have changed since my transplant.
I had my transplant on May 3 at Geisinger Medical Center in Danville, PA. The kidney was donated by the family of a 16 year old girl who had a drug overdose in a group home (at least that's what I was told when they called me to ask if I would accept the offer; more on that in a future post). The only steroids I had were 2 IV doses of Solu Medrol, 1 before surgery and the other 12 hours later. I also had "induction" with Campath; this is called "tolerogenic immunosuppression".
I got back from the OR after midnight, and didn't sleep a whole lot that night because of frequent checks by the nurses, but by 6:30 am, the transformation was AMAZING! I'm not sure if it was the Solu Medrol, but I was actually hungry for the first time in months, my thinking was crystal clear, and overall I just felt great!
Since then, I've had some side effects of my meds (diarrhea most likely from CellCept, hand tremors and insomnia from Prograf), but overall, these are minor annoyances.
Now that I'm one month post-transplant, I have no more incisional pain, I can now think clearly (on dialysis, my brain seemed to be dragging), I have much more energy, and I can finally eat dairy, nuts and chocolate.
I welcome comments; feel free to ask away with any questions.
Jeff,
Welcome to the fun! I've read your personal blog, but that was pre-transplant. Congratulations!
Thanks Rob for both the congrats and reading my blogs. I'm glad to be here.
Hi Jeff-
I am so happy for you. I am 15 days (hopefully...) away from my transplant. I am not on dialysis yet, and my kidney failure is due to Lupus... My sister is a 6 HLA match. We are going throu U of Wisconsion. I have a few questions, can you help?
1- When you talk about thinking clearly, are you tlaking baout the constant brain fog that makes you feel stupid? And that really does go away?
2- Tell me more about the side effects of the prograf and cellcept, please. Yesterday they had the "eyes wide open" talk. One of the things they wanted to make sure was that i understood how serious the cellcept and prograf are.
I dont even know what questions, i still have, can i ask them as they come up?
Mary Pat
"1- When you talk about thinking clearly, are you tlaking baout the constant brain fog that makes you feel stupid? And that really does go away?"
Not to jump on Jeff's toes and answer (I'm sure he'll answer, too!) but YES the fog really really really does go away. I noticed that within 24 hours of my transplant last June. I was on dialysis for 3.5 years before my transplant (and CKD for 12 years before that) so it was like all of a sudden I could think! Like a HUMAN!
Hi Mary Pat,
6 out of 6 match (or, as the professionals like to term it- a 0 out of 6 MISmatch); that's fantastic! I have some familiarity with Lupus, as I work in a Pediatric clinic that also has a Pediatric Rheumatologist, and he has several adolescent Lupus patients.
As Krissi said, the kidney failure brain fog is best appreciated AFTER transplant. In fact, you sometimes don't realize the extent of it until it's no longer there. In my case, I wasn't aware of it until about 12 hours after surgery, mainly because when I started dialysis, I thought it lifted the fog (dialysis helped, but not totally).
As for Prograf and CellCept, there are side effects, some of which are quite serious. The "quite serious" ones have to do with suppressing the immune system (increased risk of many different infections, some of which are life-threatening), increased risk of skin cancer and Lymphoma, and with CellCept specifically, progressive multifocal leukoencephalopathy .
As for more common side effects, CellCept commonly affects the GI tract (stomach upset and diarrhea; I've had the latter, but not the former), and can also cause a decreased white blood cell count. The Prograf can cause headache, high blood pressure, diarrhea, nausea, constipation, stomach pain, changes in kidney function, high blood sugar, low white cell count, infection, and high cholesterol/lipid levels.
My take on side effects? I always think risk vs. benefit. I feel that the life threatening side effects, which are fairly low incidence, are worth the risk so that I can get a kidney. The other side effects that I've had, including diarrhea, hand tremors, some insomnia, etc, are manageable, and preferable to the alternative (staying on dialysis).
I hope this helps; feel free to ask away in the future.
Jeff
THanks for the info.
I have had my lupus for 23 years, and i too work with adolscents with SLE in a support group capacity. ANyhow, i am NOT on dialysis, but my function is 17%. I am still working full time, plus i have a little boy who is nearly 2. Until it was decided that i had to go on the transplant list, i just thought, i was out of shape, or tired because of work or the baby, or the house, or my husband. It wasnt until someone said, HELLO... your sick, did i slow down. Especially since i have been in Lupus remission for 13 years, this caught me off guard, to have such a dramatic loss in a short about of time. Anyhow, through all of this, i just thought i was flakier than normal, my husband would tease me about my mind... but i kept thinking, i am not this ding dongy... something has to be wrong.... so i think with playing with my little boy, and having more energy for husband (ahem!) i am most looking forward to getting my mind back!
MP
Mary Pat,
I can certainly relate. I had a kidney function of 8-10% for a year prior to having to start dialysis, and worked full time as well.
I think it's very important to try to keep as normal a life as possible, while realizing that kidney failure affects each person differently, and for many, this just isn't an option. However, in my case, it kept my mind off of how cruddy I felt, and kept me from taking even more of a nosedive.
Unfortunately, I had no relatives who could donate. My only sibling is on dialysis for the same disease (Polycystic Kidney Disease), my mom died of related complications to PKD at age 38, and my dad is too old to donate. My wife offered, but our blood types are incompatible, and I had an offer from a former friend, but wouldn't accept the offer, since she was a single mother of 3.
Good luck; hopefully you'll have your new kidney in 2 weeks!
Jeff