Post Transplant Side Effects

[Colin_CX]

I'm 28 years old and will start my first dialysis session tomorrow and going to transplant evaluation next week. After a lot of reading in NKF and some papers, I realize dialysis is much safer and have less serious side effects compared to transplant though I know it's inconvenient.

I'd like to know how guys think about the trade off, everyone seems to be excited about getting a transplant but I started to doubt, so hoping to get more convincing thoughts.

i.e. from lots of paper and population based research, the skin cancer incident rate increases with years after transplant and it's around 10% after 10 years. That number itself is scaring and I started ask myself, what if rates of all serious side effects increases a bit, say another issue 5% and another 2%. Then when I am getting 40 years old, the chance for me to not have those three problems is just 1-0.9*0.95*0.9 = 85%.

My point is, there are many serious possible side effects, though each issue might be rare and risk just increases a little compared to non-transplant people, you will end up with great increase of chance getting at least one issue. However, I started to feel I can accept dialysis for 50 years instead of taking yearly increasing risk after transplant.

I might just be over worried, there are a lot of people having no issue for decades, hope to know how you people understand the tradeoff.

[Bassetmommer NKF Ambassador]

Dear Colin,

Everyday is a chance. Everyday there are risks. Take a look at the statistics about car accidents sometime. I understand the fear of the unknown can be daunting. However, the opportunity to get the freedom of a transplant compared to a lifetime of dialysis is immeasurable. Have you looked at the life expectancy of someone who is on dialysis? That information might help your decision.

Most people have some sort of compromise they make in order to be happy. Life is not perfect and if it was, it would be boring.

cars.com/articles/are-the-o...

kidney.org/atoz/content/dia...

[Colin_CX in reply to Bassetmommer]

Thanks for sharing, transplant is for sure preferred and I am also excited getting on the list soon. I guess my worry is more because of my age , I wouldn't mind if I am 70 years old after 20 years of immunosuppressives with 10%-20% chance of some fetal issues. That said I did see many people younger than me posted about their successful transplant. Like you said, every day is a chance.

[Frankie24]

I would take a transplant as soon as I can get it !! I am currently working toward home hemodialysis as I find that I do not care for being on someone else's schedule when this is my life. Everyone at dialysis is wonderful however I have work and a life to live and dialysis in a center is just not for me.

[Frankie24 in reply to Frankie24]

NFK Ambassodor makes a good point, have you looked at the life expectancy of some one on dialysis as opposed to some one who has had a transplant and the fact that you get your life back after transplant ?

[Frankie24 in reply to Frankie24]

My Aunt and my dad both had sucessful transplants, my dad did well, as did my Aunt, at about 78 my Aunt developed cancer, however it was never proven that it had to do with the drugs. I really do think you have to weigh the pro's and con's. I would take a kidney in a heartbeat, risks and all if meant not living on dialysis.

[Colin_CX in reply to Frankie24]

Thanks Frankie24, after talking with you guys I am released and for sure are going for transplant.

[steve680]

Well, unless you can find a live donor, those desiring a transplant first go on the transplant waiting listing, if qualified, which for my blood type in my geographical area is seven years or longer. I think some people (myself included) are willing to accept the risks of a transplant in order to obtain a higher quality of life than one would have while on some modality of dialysis. With a transplant one does not need to connect oneself to a machine multiple times a week or multiple times a day (peritoneal). Still, dialysis is a fact of life for some of us until a donor kidney, live or cadaver, becomes available. Also, life expectancy is generally considered longer with a transplant as one has a fully-functioning kidney. Dialysis only filters your blood, it doesn't do some of the other things that a healthy kidney can do. One actually has to be in relatively good health to qualify for the transplant list - no cancer, no HIV, no hepatitis, non smoker, no drug/alcohol abuse, no serious heart condition, etc. They transplant doctors also want one to be fairly close to one's optimum body weight. So, some people opt for dialysis since that's their only option when they get to stage 5 CKD.

[itzmich]

Sounds like you've done your research and you've made a decision. You didnt mention the side effects of dialysis. Everythings has got a down side. Dont focus on the bad stuff. Hope for the best. Since having CKD I listen to everyone's experience with transplant and dialysis hoping when the time comes I'll have the best solution for me. Best of luck on your journey please keep us up to date on your experience.

[WYOAnne NKF Ambassador]

Oh my gosh! A transplant is a second chance at life!!!!! I am living well at 19 years post transplant WITH A STABLE CREATININE OF 0.9. Are there some side effects to the immunosuppressants you take for life? Yes. Most of those are the first 3-6 months after transplant to get you on the right dose and your body adjusts to these meds.

I was hiking the Highline trail in Glacier National Park 8 months post transplant. My husband and I travel to the Caribbean, in the US and Europe. There are NO restrictions on my life style, except limiting salt and taking my meds twice a day. The state I live in has no transplant center, so I do see my nephrologist every 3 months.

Yes, there are people that are on dialysis for many years. Some people like myself, had many problems with dialysis. If I had opted not to be listed and stick with hemo-dialysis I would not be alive today.

Life is pretty fantastic and you should not be afraid of the unknown! You could walk out of your house tomorrow and be hit by a car. Life and the world are full of unkowns! I don't know about you, but a transplant is worth any risk!!!! LIVE LIFE! I thank GOD and my deceased donor everyday for my GIFT OF LIFE!

[Colin_CX in reply to WYOAnne]

Hi Anne, I've read your post and happy for you since transplant is such a great gift for you. I'll go for a transplant and ask Dr how I could limit the side effects. A noob question, I know exercise is for sure good for people in general, but will exercise improve part of our immune system while that part may be suppressive by drugs ? If yes, would that affects the efficiency of drugs so we end up having to take a larger dose?

[WYOAnne NKF Ambassador in reply to Colin_CX]

Not everyone has bad side effects. That is why it is so important at first to work with your transplant team and let them know the side effects post transplant that you are experiencing. Some are due to being on too high a dose and others just means your body has to adjust to it, like a lot of medications. I think like with all things it just takes time. Your immune system also adjusts. I had to be careful that first year post transplant. Now, I hardly even catch a cold. I found the important thing is to not be around people that are sick, if possible. I also thoroughly wash my hands many times a day - after going to the bathroom of course, and after returning home from shopping, etc. I also make sure I wipe the handle on shopping carts with the wipes stores usually provide.

As far as exercise affecting the transplant meds......I would say NO! But these are questions you should be asking your nephrologist. The blood level of these transplant drugs is tested often, especially at first. I have been on the same dose of my drugs for over 17 years - I am 19+ years post transplant.

Skin cancer risk - I always make sure I use sun screen when I am going to be outside. I also see a dermatologist once a year. I think the risk of this increases if you are a person that works outside. The exposure is greater. No sign of it for me, and I was part of the generation that used baby oil when laying in the sun to get a good tan.

I guess the point is - if given this wonderful GIFT OF LIFE you are going to do everything you should to prevent any problems.

Just because a person has a problem with the meds, etc. doesn't mean that you will.

[RhenDutchess123]

I am kinda where you are at...I am preparing to do PH Dialysis in my home....The people I have talked to seem to do well on that. I like that I can easily do it anywhere, that is clean.It will be 4 exchanges a day...about 30 minutes each time to fill and drain....I have also looked at the Transplant..., and it seems so complicated with alot of waiting and living on the edge, and the inreased risk of other problems is not what I want. I feel, right now anyway, that I would just prefer to try the PH Dialysis, and because it is easier on your body, it will keep my veins in good shape in case I decide to go the Transplant route. I am alot older than you...I am 61 and retired. I do substitute for the School District and I love being with the Children, but they do carry ALOT of germs, so a Transplant may prevent me from continuing that job....I dont think there is anything wrong or right about deciding between Dialysis or Transplant. Just whatever you are more comfortable with...Best Luck to you and keep us posted

[Colin_CX in reply to RhenDutchess123]

Hi RhwnSutchess123, I totally get your worries, but after reading from other people's post and replies, I am more towards getting a transplant. The statics number is scary but if we can control most of factors. Take skin cancer as example, it is considered highest increased risk, which has a incident of 10% within 10 years after transplant, however from that sample average age is around 50 - 60, if you check how many incident in general population develops skin cancer, it is 1 in 5 in peoples life time. So the truth is even for general population, the risk gets so high with aging.

Besides, my Dr told me within his 40 years in hospital, it's rare for people to develop those problems, he said only people exposed to sun too much gets skin cancer and it's supper rare and people with obesity gets diabetes which are also rare. So my point is, if you can control yourself to not get exposed or getting obesity, then your chance of getting the issue might just be as low as a normal person.

Anyway, best of luck!

[RhenDutchess123]

That sounds wonderful !.....I agree it is worth it to have another chance at life...I wish you the best of luck...keep us posted

[Carillon]

You are over-reacting. All the options have problems but if I could I’d take my chance on a transplant and a more normal life. Stop fretting. You are fortunate!

[Hidden]

I just want to say I've never heard anyone that regretted getting a working kidney from transplant surgery. The people I talk to call the transplant the best day of their lives.

[Chucka]

Hi Colin. I have hereditary kidney disease and will be facing your options pretty soon. Just wanted to share that my father had a transplant and yes, he developed skin cancer which they attributed to the immunosuppressant meds. However it was not the deadly melanoma variety. And since it was on the skin it was easy to observe and track it. He went to the dermatologist regularly and got it treated and although it was a little bit unsightly it was not that big of a problem and was manageable. Every day he was grateful for his transplant kidney. I wish you the best in making these difficult decisions.

[KidneyCoach NKF Ambassador]

Y'all must remember transplant is not a cure. Nor is there a guarantee. Many people get a transplant only to have it never work or have complications that require intervention which destroys the transplant or rejection or worse. Both my sister and brother had horrid experiences with a transplant. I've had many friends who have had immediate problems and even a few who died. Be sure to ask plenty of questions, do your research and be as prepared as possible. Prepare for the worst while hoping for the best outcome. Blessings