Kidney Recipients

HI. I'm looking to chat with people who have had kidney transplants to find out about what it was like from pre-op to surgery to recovery to life after transplant.

Thanks.

[PurplePill]

Well I am going into day four of recovery from my surgery so I can’t tell you much but here is what I know so far. Waiting for the transplant was a small torture for me... it was a three year process with a living donor and due to COVID my surgery was pushed back a full year. They took the full three years to tell me my bf was a match, right up to the day we got the phone call from the hospital that there was an opening. Looking back now I’m sure this was for my bf’s sake so he could opt out at anytime without complaining anything with me. (But that didn’t happen lol!) so waiting was a really hard part for someone who has no patience. Once we got the call we had two weeks left of work and a two week isolation period. We live in an area that has been locked down three times, just going into the third lockdown the day after my surgery. Being in here is hard without your support person, as the drugs they put you on after can really mess with you. I will warn you about prednisone....this is making me very emotional but they know how powerful these side effects are and they slowly take you down to a reasonable level. (That can’t happen soon enough for me) make sure you have someone you can call every day while you are in the hospital so you can have some support. (That being said, the first few days I didn’t even feel like talking much, so see how that goes for you) there can be complications afterwards but you are in the best spot to be when your recovering, the nurses know what to look for and know how to help. Well that is pretty much all I know so far... other then when you get out of surgery you will have a million tubes coming out of you...out of everywhere... don’t expect to get much sleep with these in. It is impossible to get comfortable but this discomfort will only be for a few days and everyday they take something away and it gets a little bit better. Can’t wait to be home recovering with my boyfriend. I’ll let you know how that goes! Good luck!!!

[Hidden in reply to PurplePill]

Hi Purple. Thanks so much for the insights. Fingers crossed for you, me and everyone else.

[MIKidney]

Pre-op was a waiting game with the nurses taking odds when the kidney would arrive. Found out delayed while donor family arrived to say goodbye. Hey I was all good with that. Surgery went fine. Recovery got a rocky start due to a few problems but hospital stay was good. My heart had a little trouble recovering from 4 hour surgery. Happy to have a team at home for the six weeks after. They did everything and my job was to get better. Walking important and I used my fitbit to record the improvement. Life after is what you make it. I am healthy with no kidney issues and keep up with doctors, nurses, social workers and their advice.

[Hidden in reply to MIKidney]

Hi MI. I appreciate you taking the time for me. Every bit of info helps. As Tom Petty sang, The Waiting is the Hardest Part.

[Hidden]

Hey wordwiz, I would be delighted to share my experience since I have gone through this twice already. The first time was when I was born until I was ten yrs old. I had kidney failure from birth and was not diagnosed until I was three months at the time ( the early 80’s ) kidney disease and failure seemed to be very new and still in the research stages. My parents made sure I was on a very kidney friendly diet and gave me a heavy dose of spirulina and other homeopathic remedies. They seemed to work cause I did not go on PD dialysis until I was six and a half and stayed on it for three and a half yrs. when I was ten I got a dual transplant and was fully healthy until I developed high blood pressure when I was in my mid thirties. When I was 36 I developed CKD ( chronic kidney disease ) and was put on hemodialysis and stayed on that until my kidneys bounced back a bit but after awhile they slowly but surely were failing again. I was put on blood pressure medication and changed my diet and did my best to eat healthy and try to give my kidneys a chance to rebound but it seemed that the damaged had been done. I then went on peritoneal dialysis and did a twin bag system for about a yr and a half. I got my second transplant on January 31 of this year and have been doing very well. I still watch my diet and have take anti rejection medication on top of my blood pressure medication but feel as normal as normal will be. My experience with everything I would say is it was not easy but I feel that it is doable for anyone who is willing to go through with it. You have to watch your diet and you have to drink LOTS of water especially after your transplant and make sure you are always following what your kidney specialist says. When you find yourself needing dialysis, I would suggest going on peritoneal dialysis instead of hemodialysis because with PD you have the ability to be home and not go to the hospital as much and also it is not as intrusive. Especially if you are not a fan of needles. Overall it is a life changing experience but you learn a lot and with a strong will to survive you will get through it. Just do your research and pick your kidney specialists brain and know your options. I truly hope the best for you and will be praying for you. If you would like any more information about my experience please don’t hesitate to ask, otherwise like I said do your due diligence of research and be mentally prepared. Best of luck. Cheers.

[Hidden]

Thanks so much. I'm sorry went through what you did. Lots of terrific information. Thanks again.

[Smariee521]

Hi wordwiz, I have been through this twice myself as well and am only 30. I wasn’t diagnosed with kidney disease until I was 10 when the drs noticed I had urinary reflux. I kept getting UTI’s which lead them to this diagnoses. I spent my 10th birthday in the hospital for a double urethral reimplantation corrective surgery (that was a handful to learn at a young age). After that the damage had already been done to my kidneys for so long that there was no reversing it,so we prolonged it with meds for as long as we could (11 years) then when I was 21, I hit end stage renal diseases and was added to the kidney transplant list. I had a fistula put in my arm & had to do hemodialysis for only two months because I had a living donor at the time. I am O+ Blood type so only one family member was a match & ironically enough we shared a birthday! It was a sign for sure. That kidney was a blessing but a curse as well. We were a 4/5 match but it rejected right away. I spent the first 4 days in ICU and they got the rejection under control. I woke up with a breathing tube and my wrists tied to the bed so I wouldn’t pull it out (a natural reaction) and I wouldn’t wish this feeling on anyone. But if you do find yourself there, kind of think of it as breathing through a straw. That’s all I can really relate it too. But it does pass. By the end of the day they pulled it out, I had a family member stay in the room and hold my hand. They say the sooner you walk the sooner the healing process begins so I was determined! I only took a few steps to the door of my room and back but everyday it increased more and so did my strength. The nurses are a blessing you will appreciate them more than ever. When I got down to the recovery floor the main issue I had were the gas pains they were unreal. I walked as much as I could but couldn’t get rid of them. I had to sleep with my boyfriends knuckles pushing on my back to relieve some of the pain it was the only way I found comfort. But that too did pass. I spent 11 days in the hospital total and once I got home the healing process was still slow but much more bearable. This kidney lasted 5 years then rejected. I was immediately put on the kidney transplant list again and given a chest port for dialysis to begin ASAP. I chose hemodialysis again and had another port put back in the same arm (my prior one had been removed due to circulation complications) and this time had to dialysis for 2 years before getting a donor. Dialysis was the hardest part of my journey. My body didn’t react well because I am smaller & I would get sick frequently & cramp up and need to be taken off the machine. I had someone pass away on the machine during one of my treatments, lost a couple great friends to the disease & really hit my darkest point in life. The dialysis lead to heart failure and at one point I almost lost consciousness on the machine. I thought for sure my journey was ending & had made peace with it. But, I never gave up. I didn’t miss treatments. I ate better adjusted my diet. I worked 2 PT jobs to keep me motivated and distracted and to prove to myself that this disease wasn’t going to take whatever amount of life I had left from me. I went on two vacations (FL & CA) and did dialysis at both! I actually liked their facilities better than my home ones because they allowed a visitor while my state did not. I finally got the call for a deceased donor kidney from out of state and went to the hospital that night and got the transplant the next morning. It all happened so fast. I was so amazed and grateful and just astonished. They didn’t think the kidney would work right away and I’d need to continue dialysis a couple months until it started because it had been on ice so long. The kidney produced so much urine in the first 24 hours none of the drs or nurses could believe it. My labs have been amazing, I didn’t spend one day in the ICU. I was home in 2 days!! Recovery was so much better & although there’s been some adjustments the meds haven’t been too bad. I do get skin tags & my hair is thinning & the prednisone definitely sucks. I am down to the lowest dose now but honestly compared to what could have been, I try not to complain. Anytime something goes wrong I just think to myself, it’s better than dialysis. I’ve had this kidney almost 2 years now and am determined it will be my forever kidney. Kidney disease is rough and everyone’s body and reactions are different but I have learned a lot of it is mind over matter. You can get through it. Have faith & if you ever need anything or have questions let me know! God bless.

[Eyak1971 in reply to Smariee521]

After reading yours and others on this post I feel guilty that I do not have the strength to not accept adversity as you and others have shown by your stories. I have not experienced the challenges that you and others have but I have just completed one year since transplant and my concerns are less about the kidney but more about other health issues as a result of the medication and how my body responds. Everyone take care and continue to be inspirational.

[Hidden]

Thank you for sharing your story. It sounds like horrific but ultimately worth it ordeal. Stay healthy. All the best.

[LisaSnow]

When the user name is changed to "hidden", does it mean the person left the group?