Handling life after the transplant

[Wishkeeper]

So I have a living donor but she wasnt the best match. She still decided to donate so I am in the paired exchange program. She recently had her surgery so now the search for my donor has been activated . Having read all the information about post transplant life,I am feeling a bit overwhelmed okay extremely overwhelmed. With all the anticipated follow up visits, new meds, and potential side effects from the meds I am feeling more stressed than excited. For those who have had a transplant how different were your expectations vs reality? How long did it take to get adjusted to your new normal?

[Transplant2018]

Congratulations on having a living donor. All your feelings are normal, but our recoveries are different so you really can't predict. My coordinator had told me I might not feel better for a few months, but I was fortunate in that I recovered very quickly. I was back to work and travel in a few weeks. I think my daily walking helped. Immediately after I got home from the hospital I could only walk a block, but within a few days I was up to a mile and then two. Take you meds on time - there are a lot especially at the beginning - and keep your many medical appointments. Hope your kidney arrives soon and that you also recover quickly!

[Wishkeeper in reply to Transplant2018]

I am glad to hear that you had such a positive recovery. Most of what I read is has been from an informative perspective . Its nice to hear personal experiences. Thank you for the response and glad that you are doing well post transplant.

[DexterLab]

My kidney failure was due to PKD, and it took 20 years or so to get to where I needed the transplant. I found a matching living donor. The operation went well, and within 4 days, 20 years of stuff went away! Blood pressure back to normal, 10 pounds of water weight gone, and other stuff. That made the rest of it easier to take.

Meds and I got along. Recovery was slow for the first two weeks until the incision was healed. Walking helped and getting a system that works for you to take the meds consistently and on time is important.

Congratulations on finding a living donor. Asking was the hardest part for me. Feeling anxious about how momentous the whole transplant adventure is quite normal. My timescale was brisk. My nephrologist sent me to the transplant center in July, and I had the new kidney in February. Didn't have a long downtime to get too nervous, just had to keep flowing through all the steps. I am amazed and grateful for all the people that made this happen. My donor was the pastor of my church, and I became a church project, in the best possible way. My family did great in hauling me around and keeping me from doing anything stupid. All the people at the transplant center were great and nice. It all has worked out so very well for over 5 years now.

I hope your adventure goes well. The first three months are hectic with all the followup and getting used to the meds. By 6 months, I was feeling pretty good and back into life. Good luck .

[Wishkeeper in reply to DexterLab]

Congratulations on life after transplant! It’s nice to hear you are still doing well 5yrs later. It seems like everything is happening pretty fast for me which is the stressful part. You mentioned the family aspect, that is also something that I stress about. I have the family support but i struggle with feeling like I will be a burden with all my appointments and such. I am not use to leaning on people. Thank you for your good wishes and for taking time to response.

[Ziggydoodah]

I am on the transplant list and believe me, when I say you are not alone!! I thought I was the only one, that felt this way. When I first went on dialysis, I thought a transplant was the "Golden Ticket"..however I started to hear a lot of negative experiences post transplant. I then started talking to other patients and they said, they had the same concerns and worries. The way I see it, at least we have Hope and a light at the end of the tunnel, compared to other illnesses. It might not be an easy journey to get there but at least we have a chance. Keep us updated

[Wishkeeper in reply to Ziggydoodah]

Thanks for your response. It helps knowing that i am not alone in my thoughts. I agree with you compared to other illnesses, I am thankful that there is hope in this journey. I will most definitely keep you guys updated. I think the more we all share our stories with each other the better it helps us all.

[WYOAnne NKF Ambassador]

I am 24+ years post transplant and have a fantastic life! Expect the first 6 -8 months to be a learning experience. You are recovering from major surgery and due to your immunosuppressants and Prednisone, you will heal slowly. Transplant docs will start you taking a high dose of your meds besides antibiotics. It is up to you to report to them every problem or side effect you are having. You need to be your own advocate. You know your body better than anyone.

The dose of my meds was changed several times that first year. And a great pharmacist helped me discover that I had to take name brand instead of the generic form of my immunosuppressant. My body reacted to the generic form with GI issues.

I guess the best thing to tell you is always report any issue you are having no matter how insignificant you think it is..

My transplant was truly a 2nd chance at LIFE! My donor was a 16 year old deceased donor. I saw my daughters' marry, I have 2 grandsons, I travel , and had a full career helping seniors in the Milwaukee area. We now live in Casper, WY and I hike in the Rockies

[Wishkeeper in reply to WYOAnne]

Wow 24yrs! What a beautiful life you have been able to live. I can only hope to be able share that kind of testimony with someone yrs from now myself. Thank you for the advice on the medications. In my journey I have learned you do have to be your own advocate. Hearing the realities both good and bad of what life can look like after surgery is really helping me. Thank you so much for taking time to respond!

[modernmusic]

My short answer: Recovery was not as bad as I expected, but not as smooth as I'd hoped for. I was in End Stage from the first week that I was diagnosed with CKD. I fought it for the next 10 years without ever going on dialysis. I was pretty used to the self discipline that is needed before and after transplant. You will figure out what you can and can't eat, what situations you have to avoid, and everything else. I am 77 years old and just celebrated my first transplant anniversary. Transplant is not a cure- it's a treatment that allows you to go on living without dialysis. If you work at it you can have a very good life after transplant. You can do it!

[Wishkeeper in reply to modernmusic]

Thank you for responding and sharing your experience. Congratulations on your kidney anniversary! I haven’t had to get on dialysis yet so that has also been a blessing in this journey. I am definitely going to work hard to keep my new kidney functioning well for a long time.

[Kalecrew in reply to modernmusic]

Hi - interested in how you kept off dialysis for 10 years in stage 5 at diagnosis. Any tips welcome! Thanks

[modernmusic in reply to Kalecrew]

Thanks for asking. Truthfully, I can tell you some of the things I did, but I really don't know which one of those helped and which ones were useless (and I don't think anyone else could say for sure either). First of all, I got very familiar with the meaning of every item on all of my blood lab work. Then I got as frequent lab draws as possible. Then I tried to adjust my diet in response to what my labs were showing me. Right away I saw that potassium was a major issue so I checked out everything I ate for it's potassium content and either stopped eating some things or severely limited the quantities of that food that I was eating. I followed that format with all the other parts of my lab results. I made sure to stay well hydrated, especially on days where I had labwork scheduled. Also, I made sure to get plenty of exercise. I took up the sport of fencing and did that 3 or 4 days/week. Also walked a lot. It was 1.5 miles carrying a 20 lb fencing equipment pack on my back, that added 3 miles walking to each day of fencing. So, exercise, diet, and and making myself as knowledgeable about my situation as I could would be the way I started. I also say that it may have just been luck. There's really no way to know for sure what worked but something did. Now dealing with a suppressed immune system post transplant has given me a whole other set of challenges to deal with. Good luck, and fight the good fight as hard as you can for as long as you can!

[Kalecrew in reply to modernmusic]

Thank you so much. Will keep going over the test results and ask for more too. It's for my son I'm asking - age 39 always been very fit and healthy, good diet, and found out of the blue had kidney failure 15% function with atrophied kidneys. He still feels well, runs and cycles but the function seems to be declining - they think it's iga nephropathy ( no biopsy because of risk damaging them more) and he is being worked up for a transplant. He is able to tolerate potassium still which is good as he was advised an alkaline diet by his nephrologist and so the diet is high in potassium which thankfully has stayed normal in his blood tests. My concern too is how to help him cope with a transplant regarding side effects of the meds as well as the op and rejection concerns when he has always felt so well. He hadnt been to the drs since childhood so it didnt get picked up - a higher risk for men I feel as young women are more likely to visit the doctor and get these routine tests. By chance he found his blood pressure was high and so then it was soon diagnosed which was a huge shock. But at least it has given us time for all the preparation, donors and so forth. He has been told a good kidney match would need much much less medications so fingers crossed. All the best to you too. Well done keeping up the exercise - I keep reading that exercise helps people cope post transplant even when they don't feel like it and that it all often gets better in time. I do hope so. Thanks again.

[modernmusic in reply to Kalecrew]

You're welcome. Your son is very similar to my situation. I thought I was invincible and stopped going to doctors for years. When it hit me I was already 66 years old and was in stage 5 from the first week that I was diagnosed. I will turn 78 in another couple of months

[Parkerbarker]

Truthfully and i consider myself a real researcher but the reaults and life after were eons apart! I wish i would have known what i kniw now and could have saved myself alot of misery.

[Wishkeeper in reply to Parkerbarker]

Thanks for responding. What was the biggest lesson you learned?

[Darlenia]

My hubby had a tough time with his transplant - a ureter leak, sudden a-fib, sky-high diabetes, etc. We were unprepared for that. So it's good to have an awareness that some transplants go smoothly and others may not. For most complications, the percentages are very low - only 2% or so for ureter leaks. Sometimes one simply pulls the wrong card. And, since my hubby is older, that makes it a bit more dicey too. IF problems do occur, it's very important to trust the transplant center to pull you through it. They really are super specialists - they have an amazing amount of knowledge and expertise. Also, since the center's outcomes are closely watched by regulatory organizations, they generally work doubly hard for you. Another thing to remember is that since the majority of people who receive transplants probably don't have big issues with their their transplants, they simply have no need to seek or stay with from support groups like this one so their voices aren't heard very often. They're back with their families and friends living their lives. So, think positive and step out in faith - serious complications are rare. Just know that they may happen, and if they do, you're in very good hands.

[Wishkeeper in reply to Darlenia]

Thank you for responding. You made a lot of great points. Every time someone responds I learn a little bit more. I will take to heart your words about being positive and stepping out on faith.