PKD ESRD on dialysis 4 years

[Frankie24]

Hi everyone,

I have PKD and ESRD, I have been on dialysis for four years. The first year on hemodialysis in center which I hated ! I then switched to peritoneal dialysis which I loved and felt great on ! Unfortunately it stopped working this past fall and I became very ill and now I am back on in center hemodialysis. I can neither deal with it mentally or physically ! I feel lousy all the time and the whole thing depresses me, I also carry a diagnosis of Bipolar 1 depression. I am looking to switch to home hemodialysis but have to work out several things before this can happen. I feel I can’t take one more day of dialysis in center. Sometimes I would just quit if I didn’t have a 29 year old son I need to stay alive for. Can anyone relate or is it just me that feels this way ? Thanks for listening/reading !

[Bunkin]

I’m so sorry you’re feeling down. I never did hemodialysis although I considered it. I did at home PD. I liked the at home part but the PD was very painful for me almost every day and so I had your feelings. And yes if not for my husband and my dogs, I would’ve just said forget it. But I try to think of it as the good, time with my family, overpowering the bad. I got involved in different groups online and met a lot of people and that became a very good distraction for me because it forced me to focus on something other than me. It also led to some amazing friendships. Support is an amazing thing. I kept looking for my transplant, friends started campaigns and my transplant happened! Yours will too!! Don’t give up you’ve got this. You’re in my thoughts and prayers. God can do anything !!

[Frankie24 in reply to Bunkin]

Thank you for your hopeful words of encouragement. I try to stay busy and even work part time still but nothing seems to help. I have campaigned for a kidney as I am on the transplant list but nothing thus far. I will remember to hold precious to the wonderful times with my son ! I had a cat Frankie who passed away recently and that has taken a toll on me as well ! Stay well and thanks again !👍

[Bunkin in reply to Frankie24]

I campaigned in 2017. I got no response. Then in 2019 someone volunteered out of the blue from my dog group. She was tested, matched then disappeared off the face of the earth. So a friend from the dog group decided to do her own campaign for me. She had my pictures done, rewrote my story and shared everywhere. My cousin saw it and sent me a message she wanted to be my donor! I had babysat her as a baby but hadn’t seen her much over the years but she wanted to and felt it was the right thing. We were a match! It takes patience I know and being let down by people and feeling hopeless at times! But don’t you dare give up! You just keep on pressing along. Feel free to contact me anytime. 😊😊

[Highgfr in reply to Bunkin]

How wonderful. What a miracle. God bless your cousin....WOW. How are you doing with your transplant and the medications you have to take. Functioning ok and do you tolerate the immunosuppressants well? I am esrd and will be evaluated by Mayo clinic in May. I may have to wait a long time for a kidney as I am O+ . Is it worth it compared to dialysis? I have not started dialysis yet and am literally scared to death. Trying SO hard to stay positive. Anything you can share with me will help and I thank you ever so much. SO happy for you!!

[Bunkin in reply to Highgfr]

Hi, thank you!! I have tolerated the meds fairly well. I did have weight gain with the prednisone which I am having trouble losing it. That’s a bummer because I’m a small person so that gets me down sometimes. I also have had a lot of muscle and joint pain which I’m sure is due to the Tacrolimus med. is it worth it? Absolutely. But if I had had to stay on dialysis, which I only did about 10 months, I got into a routine and my husband and friends were very supportive. I was scared to start dialysis too. I remember the day I found out it was time. I had been at GFR 2 for a long time but I took a lot of supplements and I know they helped me. I found that if I just took it one day at a time instead of letting it all overwhelm me, which I’m bad about doing, before I knew it, I had my surgery for my catheter, it messed up, I had it again then training, then did at home, then I got Covid. It makes you very strong. When the time comes, you can do this! And you never know how long you will wait, it could be years or months or days! Don’t let that dissuade you. There’s more donor awareness now than ever before. You just hang in there. Prayers for you. God can do anything!

[Darlenia in reply to Frankie24]

Oh Frankie24. Please press forward for a transplant. After four years, I hope you are near the top of your center's list. If not, you may want to cross list with another transplant center with faster placements. We did that. One center simply forwarded my husband's tests and labs to the other so there wasn't a need to duplicate them. And we also expressed our willingness to accept a deceased donor kidney with conditions. Of course, all situations are different, but received our deceased donor transplant in exactly one year from the start of dialysis. If you're in the US, the site below may be of value to you as you look ahead. Sending lots of encouragement that you get that transplant soon! srtr.org/transplant-centers...

[Bunkin]

I also have PKD!!

[RonZone]

Frankie, I'm just finding this post (Hard to see all of them as they come through the way this site works). I just had my PD Catheter placement surgery this past Monday. I start PD in a fe weeks. What I'm curious about in your post is where you said that PD "stopped working" and you became "very ill". Can you describe the symptoms and feelings of how you knew that the PD had stopped working, and what symptoms you had before you began in center hemo. I would like to know what it would be like if that happens to me so I can recognize it when it happens. My eGFR is around 5 and I've not had any major symptoms to this point like nausea etc. I mostly just feel tired. Answer just as you have time and feel like it. Did you ever start on home hemo? Wishing you the best and for a transplant to happen for you soon!

[Frankie24]

Hi, I started feeling very tired, had no appetite, food made me physically ill . People were telling me that my color was off, very pasty.Had a hard time keeping up with my work and activities which I confused with thinking I must be depressed. I reached a point where I couldn’t eat at all. Couldn’t get out of bed. Had no energy. These are the things that really stood out to me. I continued doing peritoneal until I was so sick I ended up in the hospital and was put back on hemodialysis. I hope this helps. I also hope you have much success with peritoneal as I loved being on it !