Kidney
How do you feel when in end stage kidney failure?
February 2, 2023
in Kidney
How would you describe it? Fatigue? Nausea? Feeling cold? Panic? Depressed? Hopeless? Some of my feelings 14 years ago before my transplant and especially the mental health ones were tough to address for me. I just felt that I had no way to go back to how it was and I had somehow caused this to myself…
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Physically, I never had any symptoms. It was all emotional to me as well. My concern was I was getting too old to get a transplant and I was destined to have dialysis for my remaining years.
Transplant Patient
I really would love more answers here… anyone who cares to elaborate re how they felt in kidney failure?
Oh man! I knew for many many years that my kidneys were at about 50%. My care team was okay with it, and we were watching it very closely.
I had type 1 diabetes, and for several years I was under very poor control... Once I reached about 50 GFR I was really scared and really REALLY tried to keep my blood sugars under control, plus my husband and I wanted to start a family. Pregnancy was really hard on my kidneys and my function decreased a little bit, however my team and I were still comfortable with my GFR. Then all of a sudden boom, it went down to low stage 4 CKD. I had no symptoms. I had a little bit of upper back pain, but this was early in COVID and I was working from home on my card table in the living room. I assumed the back pain was from poor ergonomics. After a routine exam we discovered that it was residual pain from my kidneys.
I never experienced the itchy back that everyone told me I would get. I didn't think that I had fatigue, until after transplant when all of a sudden I realized how much more energy I had. I never experienced swelling in my legs (outside of pregnancy). The mental health though... oh the mental health. I am a people pleaser by nature. I carried the news of failure, without sharing for a long time. It was very difficult for me to tell my husband, and my parents, and my sisters. I didn't want to let them down, and tell them I failed. Then I also had to take into account telling my work, and my boss that I was going to be off for an extended period of time, without knowing when exactly that was going to be. It ate me alive. The mental health part of letting people know that I had failed still haunts me. I still have friends and family members I haven't even told yet.
Transplant Patient
I am so sorry you felt that way but I recognize it so well! You have to understand my PhD was in the complications of diabetes and I spent years learning about what could happen if you “misbehaved” - and then working for companies like JNJ and Eyetech that focused on drugs and devices to help those w diabetes and its complications … boy did I feel dumb telling my boss and my family that I had failed. But you did not and I did not / the disease did this and the system did not help us! We need to be strong to survive and I really didn’t want to accommodate to a weakness such as t1d or come across as “sick”. So I hid it. Here we are / new chance and really no regrets but learnings and a fantastic opportunity for education and hopefully advocating for change….
Transplant Patient
@Karin While I'm not in end stage kidney failure (yet!🤞 , I can certainly relate because I've experienced, suffered and survived after being in end stage (stage IV) heart failure. At several points during my transplant journey I had given up all hope, and I was in a very bad place mentally / physically / emotionally.
@HRB52 & @TServold - I can somewhat relate. So sorry you felt that way.
I too would like to hear more folks elaborate on @Karin 's original post since I'm in stage 3 kidney failure (due to the heart transplant in 2015, after being a diabetic since 2009).
For me it was the restless legs!!! For years I thought the condition was a farce… until I had it! It would hit me so hard during dialysis and I would look like a mad woman just twitching and wiggling and kicking my legs!!! Towards the end before my transplant it was anytime I was at rest, so many hours of lost sleep!
and nausea! Everything made me queasy.
that was the gist of my physical symptoms I was only in end stage for 2 years before transplant and i went from 100% functioning to non functioning in a 30 hour span due to an acute injury to my kidneys caused by HELLP syndrome. The mental health issues were far more complex for me and held more weight in effects on my life- I went into a very heavy depression and sitting in a dialysis chair 4x a week for several hours was not helpful either. Definitely some guilt as I felt my children weren’t getting enough from me, and my partner was doing so much. It is definitely a complex dynamic between physical and mental health.
My only symptoms were fatigue and nausea. I had no swelling the entire time, even throughout a pregnancy! I would sleep for 12 hours a night and need a 2-3 hour nap during the day. And I lost 10 lbs without trying right at the beginning. I just didn't feel like eating.
I've felt fatigue all my life... I've been sick since I've been 4 but i only felt it when i wasn't doing anything... I played sports all my life even while on dialysis before my transplant.
@Philipjones17 did you experience swelling at all?
When I was in end stage kidney failure I remembered I slept a lot, I volunteered at a hospital and in my department I would sit with the nurses and all of a sudden I would be falling asleep. I too was a diabetic so that is what caused the kidney problems. I had a little swelling in the beginning but when I was doing pd dialysis the swelling got worse. When I was doing dialysis at the center I stopped urinating and I was also very frustrated because I was doing dialysis for four days a week for four hours because my days where Monday Wednesday Friday and Saturday but that was not why I was frustrated it was because in between sessions I was very very cautious on how much fluid I would have but would still have a lot of fluid weight and I was accused of drinking more water on Fridays because I would be getting it taken off on Saturday which was so not the case. When I was having my sessions they would have to take me off of the machine because my blood pressure would drop so I never got to get all of the fluid off of me and it just kept building up. I also was itching a lot all over. I really do not think I had any real changes in my emotions about needing a transplant I did a lot of research on a kidney and pancreas transplant and read all the books that my transplant team gave me so I felt ready. But I do know that after the transplant I became very depressed because a family lost a loved one and I am still going through depression because of issues I am going through with my transplant team that has completely dropped me because my insurance does not cover them and I am having trouble with my tacomycin blood work and I know I have to change my medication but I do not know how. My team always tells me to ask talk to my nephrologist or my primary caregiver the thing is I am getting a new nephrologist at the end of the month because my old nephrologist so did not know anything about kidney transplants and my primary doctor doesn't know how to change my medication. I know people on here has told me that I have to talk to someone at the hospital about what I am going through but I am the kind of person who gets nervous about what my team will say. My number did go back down between blood work without changing my meds When I see my new doctor he is the head surgeon for kidney transplants so hopefully things get better.🙏🏻🤞 sorry this is so long and now that I look at what I put on here it seems not to answer the question that you posted.💚💚
No i did not... not nnormal swelling swelling from gout i did