Close to kidney failure and scared

[Jayjayca]

Hello, I'm in the late stages of pkd. I'm very close to kidney failure and I'm absolutely terrified about my future. I've watched 3 family members go through this and 2 of them have since passed. They both struggled a lot. I'm having a hard time with my future situation. I'm trying to stay positive but it's so hard. It's like I'm a ticking time bomb and I'm waiting for it to explode. I'm really struggling with staying positive about my future. I've been going through all the tests to prepare for a transplant. I'm not alone in my life yet I feel like I am. I don't know what to do

[Cruze44]

Hang in there! Have you started dialysis yet? Remember, people can live for decades on dialysis. Is it a hard life, probably. But it's life! And then once ya get a transplant you'll be good as new! Ya just gotta hang in there! You'll be fine.

[Jayjayca in reply to Cruze44]

I have not started dyalisis yet but I know it's coming. I know I have to see my specialist but I hate going. I'm always worried about what he'll say. I spent the entire day last Tuesday having tests done to prepare for a transplant but I don't even have a donor. Its was a very tough day. Thank you for listening.

[Mgt8]

Totally agree with Cruze44.....

Many of my family also have kidney failure and past generations have gone through it.

My dad was one of the first patients that did dialysis at home and did ok but things have changed for the better now.

I dialysed at home for about a year before I had my transplant and I feel like a new woman now! There is life after kidney failure. The specialists do amazing things now. Just hang in there and keep asking questions and listening to their advice....find out as much as you can about your illness so you can make informed decisions.....

It will be so worthwhile in the long run...

Good luck, hoping it all works out well for you......

Margaret

[Jayjayca in reply to Mgt8]

Thank you for responding. I hope a transplant comes that quickly for me. My dad waited 6 years. He lived for 13 years after. My brother is doing well at 4 years now. It's so overwhelming sometimes.

[Mgt8 in reply to Jayjayca]

It IS overwhelming sometimes....

We've all felt like that at times and no body understands better than people who have been through it themselves.

Do keep sharing because we're all here for each other.

I've always found this site very helpful and reassuring; there's always been someone out there who can answer a query or provide support at a low moment.

My daughter has pkd too and although she appears to just get on with life despite this, it must be really hard for her knowing what I've been through...and thinking of when her kidneys will fail.

When I was close to kidney failure, I spent time doing all the things I wanted to do. I travelled a bit and had some time to myself it made me calm and gave me time to think things through but we're all different and handle it in our own way.

Good luck to you....

Margaret

[Bunkin]

Hey I am right there with you! I have PKD and end stage. I feel the anxiousness the same as you. It's like when I go to doctor and he doesn't put me on dialysis, I have another 3 months to live. Crazy huh? You are not alone!! I have started a new herb and will know if it's working when I have my lab in a couple of weeks. Don't give up hope. Lots of new advances in the kidney world. Prayers for you. God can do anything!!!

[Jayjayca in reply to Bunkin]

Thank you. I mostly stay positive but sometimes I lose myself and get really scared. I hate that I'm not alone. I hate this disease but it's nice to hear from other people who understand my situation.

[Bunkin]

I know. Believe me, I understand completely😀

[itzmich]

So sorry this is happening to you. Try not to compare your health to family members everyone is different. Therapy can help, meditation and breathing exercises. Stress can do harm physically so try to do more to help that. I know it's easier said then done. Focus on the you can do to help yourself. We are here to support you. Wishing you the best possible outcome.

[Hidden]

What late stage? Your age? Fyi, I am 83 with autosomal dominant PKD, 4th stage, GFR21. I will not entertain the thought of transplant because you have to destroy your immune system and with ADPKD, the cysts begin in the liver and brain anyway. The thought of dialysis is what terrifies me. I don't plan to spend half my remaining life as slave to the dialysis machine making the nephrologists wealthy. Instead I have gone vegan and began music lessons. Sure, my PKD will kill me--if something else doesn't. Maybe my heart: I had a valve replaced in it almost 2 years ago. I'm just saying, live your life with whatever remaining time you have left. Go back to school and get another degree, new hobby, whatever you always wanted to do. Maybe I'll wake up in the morning, maybe not. My will is made out and my property transferred to save my kids from probate costs. Today has been a good day: no back pain or anywhere else. Spent the day out with a friend, a fellow veteran. met for coffee in the morning and our usual long talk, off to lunch then several flea markets looking for that special bargain. Didn't find it. Maybe next time. Tired when I got home and took a nap. My brother in law spent 3 years on dialysis before it got him. My next door neighbor has been on dialysis almost 2 years now and keeps his yard better than I keep mine. Write back and let me know how you are doing.