Prior to our move about a year and a half ago, I was a mentor and volunteer for the NKF. I would visit with kidney dialysis patients. Many were willing to put up with rigors of 3 x a week dialysis at a center, rather than a transplant. Many were afraid of after a transplant and what kind of quality of life they would have. They had also heard some horror stories of the immunosuppressant drugs they would take for the rest of their life and would they be able to work. I always told them that I started by working 30 hours a week about an year after my transplant. After 3 years I decided to use my master's degree and became an administrator for assisted living. This was more than full time & I did fine. Then for the last 8 years I ran a non-profit helping seniors. I retired in 2016. I think most of the "bumps in the road" as far as the immunosuppressants are in that first year. Drs have to get you on the right dose and your body has to adjust to the meds. I am 18 year post transplant now, and have no real side effects of the drugs. I am on a low dose of the transplant drugs now and about 8 years ago they stopped the prednisone I was taking. I am not diabetic, so that could change the scenario a little for others. The monthly to every 2 month labs are the part I hate. You can imagine how many needle pokes in 18 years. Had labs yesterday and my creatinine was fantastic at 0.9. A transplant is a TRUE MIRACLE! Don't be afraid of the unknown, it has a way of it all working out.
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WYOAnne
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I spent time on both in center hemo and home PD. I hated hemorrhoids and was happy to transition to home PD.
Six months after the transplant, my doctors found a virus in my transplanted kidney which. Severely damaged it. It still functions. My creatnine is around 2.9 and has been consistent.
I just had rotator cuff surgery. My surgeon suspects that my long term use of steroids likely contributed to the tear since it can weaken tendons.
Besides that, my only other issue was at the time they found the virus and started to treat it I started to break out with something like acne, but it wasn't regular pimples. My face, chest, and back were covered. I also had some on my genitals. It was miserable. I went on Accutane, which cleared up my face, chest and some of my back. I still have sombre on my genitals and I'll get larger ones on my back.
If that wasn't bad enough, I was also diagnosed with hidrinitites suppativa (sorry for the spelling)
I'm a 48 year old male. I had always thought HS was typically diagnosed in younger females.
I would do it again, which I'll have to at sometime in the future.
I will admit it has been a very difficult 11 or 12 years.
I am really sorry that you have had such a hard time. I have a friend that has lupus and also has HS. Her doctor told her it is related to her immune system. Your HS is probably related to your immunosuppressants. I guess I am here to tell you that not all transplants are like what you have experienced. Life is pretty wonderful and I just hope that you can experience some of that wonder. Take care and I do pray that things get better for you!!!
But you had the courage and fortitude to do it and that is laudible!
I think everyone with a chronic illness wishes that it was easy...zip, zip but it isn't.
It is a series of progressions to get to the top.
Use your experience, knowledge and strength gained in the past 12 years to help and support someone going through fear and the same as you did. Your care and time to put them at ease will make all of the bumps in the road so much easier to look back on.
29 years post cadaveric transplant. My creatinine stays at .7. My dr is amazed as tbis success is often unheard of in a cadaveric non family transplant. Also with hard work, my Dr. was open minded enough that he weened me off all my immunosuppressive meds about 5 years ago. But not before damage was done. I understand what some people are concerned about. I have always been a great advocate for the study of the long term effects of immunosuppressive medicines. I think everyone should have an opportunity to fully understand what the effects can have for their future. As another patient has mentioned, i too have had rotater cuff surgery on my right arm 3 years ago and am looking to have it on my left non dominent arm in the next year or so. I also have damage to lower back spine and type 2 diabetes all due 2 long term use of prednisone. I am also unable to have babies due to the use of the immuran for long term use. Im not truly sure why they feel there would be a delay in going to work etc. After transplant. I worked and went to school while on dialysis and once i had transplant barring the 2-3 week recovery time i was right back up and running. There was no delay. Not sure if they realize how awesome they will feel. Unless they have rejection. The medicine was just a daily routine u figured out. I feel that even though the immuno meds have had a long term effect on my body, it was far better than the long term effects of dialysis which is not a good option either. But they should be fully informed and make their choice with this info.
It is wonderful that you have your transplant for 29 years. You do not take any immunosuppressants at all? Although I have my transplant almost 24 years, my doctor said he won't take me off prednisone because there would be a 20% chance of losing my kidney if I stopped it after all these years.
I think it can be done especially if u have never had a rejection episode ever. It did require heavy monitoring at first. Bloodwork once a month for about 6 months then more spaced out. But if it can be done i think it needs to be done. As u get older, a weakened immune system leaves you open to so many illnesses.
I got taken off prednisone because of a lot of side effects almost 10 years ago. It made no difference for me, with my creatinine numbers. I have never had a rejection episode.
I know they have been working on a way to modify (?) your immune system, ahead of the transplant, so you don't reject your new organ. This will be the way of the future for transplants. You won't reject your new organ, so you don't need to take the drugs. I know my transplant coordinator told me a little about this.
I never had a rejection episode. My doctor doesn’t believe in changing anything because I have done well on th meds I am on for so long. I don’t think I could convince him otherwise.
I think it is great that you took the chance an it worked out so well for you.
You are a credit and role model for all around you! Amazing woman! Courage, intelligence and strength!
I can relate to the "bumps in the road" as recently I was put on Tacrolimus to reduce increased protein spilling, with MN. A bit hesitant but know that it is the Best path for me.
Yes, I can relate to the pin cushion and fire hydrant life, but if it keeps me safe and gets me to the ultimate goal, remission or partial remission, I reward myself in a small way.
Would love to hear about your masters and job as Assisted Living Administrator as it sounds interesting!
Thanks Bet! I appreciate your kind words. Makes me feel like some of my experience will help someone. Will be in touch with you about my work experience. Take care!
My "miracle" kidney came from a cadaver. He was 16 and killed in a car accident. His kidney was a 4/6 match - that's why I call it a "miracle." I did have family members that were tested and were a 3/6 match. I had my transplant in 1999, and back then there was a much shorter wait on thee UNOS list. I was on the wait list for 14 months.
Now for one, you have to remember that my transplant was in 1999. I only had a 14 month wait. Drs told me that a sibling could be a perfect match. You get 3 antigens (kidney transplant tissue markers) from your Mom and 3 from your Dad. Both of my daughters were tested to be a living donor, and of course they were both a 3/6 match. I had a cousin who actually was a 2/6 match. My husband was not a match at all. I was about to have a friend go ahead with the testing, she was same blood type, when I got THE call. So when I got the call from my transplant center, they kept telling me that it was a kidney for me. Said it was rare for a non-related kidney to be a 4/6 match.
I guess I am telling everyone to keep their options open. I am 18 years post transplant with a creatinine of 0.9 from a cadaver kidney. I would recommend you try everything you can to find a living compatible donor first. Your transplant center where you are listed can give you an idea of how long a wait you have for a cadaver kidney. It depends mostly on your blood type. When I had called and asked, my coordinator - she told me 14 months. I am not kidding, the next week I got the call for my transplant.
Did you see the story on TV? The guy who needed a kidney and had a t-shirt printed up to wear? He wore the shirt when he went to Disney with his family. He was lucky enough to find a donor.
I know Kellie (NKF) has a website you can visit that talks about finding a living donor. I would contact everyone you know - family, friends, neighbors, people you work with, etc.
Don't know if that really helps, but I guess what I was trying to tell everyone to not give up on a cadaver donor. For me personally, it has been a true miracle!!
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What is your experience post transplant?
I got a kidney!!
Should I do only kidney or pancreas as well?
New to this. 
Nausea/Stomach Post-transplant 
