stage 4 ckd and decompensated end stage cirrhosis with ascites

[Cape_Cod_Sharon]

Hi I'm Sharon/60/Massachusetts USA

I was dx'd with end stage cirrhosis 2 years ago and have since been diagnosed with stage 4 chronic kidney disease, I also have primary fibromyalgia with rheumatoid arthritis and hyperparathyroidism.

I am getting close to having to make a decision about dialysis, I decided not to have a liver transplant, so a kidney transplant isn't an option at this point because my liver disease is killing me.

Do I try dialysis, hoping I might get some relief but knowing it will become my life and if I stop treatment I am basically writing my own death warrant.[??]

I think I have made my decision but I would seriously like to hear from other people who have been through this, are going through it now or have loved ones who have passed or are fighting the battle.

Thank you with all due respect, peace and love,

Sharon

[EchoMax1012]

This is a very difficult question, because what you are really asking has to do with quality vs quantity of however much time you have left. I think this decision must take into account your values and goals and priorities. Best wishes to you for the very tough quandary you are dealing with.

[Cape_Cod_Sharon in reply to EchoMax1012]

Thank you for your response, and it is exactly that, a question of quantity vs quality for "whatever time I have left"...

[Jayhawker in reply to Cape_Cod_Sharon]

Cape Cod Sharon,

I've been in renal failure since January of 2017. I'm not yet on dialysis but will pursue PD dialysis when the time comes. I have been through renal failure treatment education classes with my first nephrologist though. They really helped me process through my options and when I would make the decision to choose conservative care rather than transplant or dialysis for treatment.

Has your nephrologist provided renal failure education for you? If not, you might ask.

For me, I decided that I would pursue dialysis (PD specifically) when I reach renal failure IF I am not presenting with other serious medical conditions.

My father had chronic kidney disease and was ultimately placed on in home hemodialysis. He had very severe cardiovascular health though. Consequently, his qualify of life on dialysis was not good. So, while dialysis extended his life by nearly 3 years, it was a pretty miserable qualify of life. He made that choice for my mother; she wanted as much time with him as possible.

I'm single with no family. In fact, I'm the last person alive in my family. Therefore, there is absolutely no reason for me to put myself through what I saw my father endure. So I decided that if I have developed other serious medical complications from my CKD, I will NOT pursue dialysis. Instead, I'll pursue conservative care.

For me this is all about how well I am feeling and functioning on a daily basis. Can my medical team effectively treat the symptoms I'm presenting? Etc.

This is not only a difficult decision. It is also very personal and quiet individual.

Jayhawker