dialysis? Can’t decide

[Merrittimesailing]

trying to decide whether or not to do dialysis

[jodaer]

I'm right there with you. What are your questions? concerns?

[Merrittimesailing in reply to jodaer]

Hi. Does it hurt (dialysis), is it worth it? Surgery for graft, recovery, feeling bad three days a week, not being able to go anywhere. I know the upside is a longer life, but is a dialysis life really a life? Thanks for responding!

[ashok5085 in reply to Merrittimesailing]

Dialysis is the best option unless you can get a transplant. Once you get used to it, it won't hurt that much. Go fr it if you need it.

[Mich1949 in reply to ashok5085]

Yes, better than not being here. Dialysis clears the toxins out of your blood - toxins have real effects on you; they can make you feel sick, have headaches cause bad itching, among others. Without dialysis, your body can have harmful levels of potassium, phosphates - which can lead to cardiac failure.I know not everyone is like me, but I don't pass water anymore,; without dialysis, I would drown in my own fluid within a week or so.

Seriously, you get used to it. The unit I go to deals with over a hundred dialysis patients a day, 6 days a week. We all go because we know there is no alternative.

[Helloyall in reply to Merrittimesailing]

It doesn't hirt and when they take out the right amount of fluid levels and monitor electrolytes you will not feel bad 3 days a week.

[horsie63 in reply to Merrittimesailing]

I did peritoneal dialysis from Feb to June when it stopped working for me. Since Aug I’m doing in center hemo and feel so much better than in June. PD gave me a very itchy rash all over my body. It also caused shaking so bad. I had no appetite.

On hemo I got rid of the rash and shaking. I got my appetite back. I currently have a chest catheter but in the 12th I go for vein mapping to see if I can get a fistula or a graft.

There’s good and bad with everything but until I can get a transplant I’ll stick with dialysis since the alternative is dying.

[KidneyCoach NKF Ambassador]

Check-out kidneyschool.org and the e-book

Woman scared red blue

[lowraind]

How old are you and where do you live?

[itzmich]

I have been thinking about this very thing since I was diagnosed. I think you have to try. Maybe it will not be as bad as you think. Maybe you'll actually feel better. My prayers are with you I know this is not an easy thing.

[Helloyall]

If you want to live you do. It's a no brainer

[Helloyall]

Are you in kidney failure?

[bestmom247]

Get a catheter and pass on the graph or the fistula. At least that is what I did. Then decide if you want quality or quantity of life. I am 70 years old now. I had to go on dialysis at 67 years old to take of my husband who had Alzheimers. If it were'nt for him, I would not have gone on dialysis. He passed away last November and now (even thought I am on 2 transplant lists) I am wrestling with the same question. It doesn't hurt, but your life is tied to that chair. Sailing/cruising to Bimini is out. Cruise lines are expensive, Medicare does not pay for dialsis outside of U.S. It is a tough choice only you can make after doing some research

[Darlenia in reply to bestmom247]

You're amazing - courageous and inspirational - taking care of your hubby while coping with your own health issues. I truly hope you receive your gift soon. My hubby was also on two lists and received his transplant at age 71. Stay hopeful!

[Hidden]

Your post is quite vague so it is a little difficult to offer advice or to share experiences. What is your age and what are your blood work numbers like. If your kidney function is very low right now, then as others have pointed out you won't last long without dialysis. You could get a chest catheter as I did for a while but I was told they are only temporary and you would need to find another way to dialyze. I'm sure all of us on here were slapped in the face when we found out we had kidney disease and had to face treatment or die. It's traumatic for sure. I recently went back to the dialysis center where I had hemo to see the social worker. She and I have a special bond. On one of my first visits, she came out to the floor and sat down next to me to chat. I cried for an hour telling her how my life just did an about face going from being very active to being extremely sick. She mentioned our talk when I went back and it brought tears to my eyes again. I am extremely fortunate to have recovered enough function to not need dialysis for now. I have often toyed with the thought that if I had to go on dialysis again, would I want to do it and the answer is yes. I can't imagine giving up life when I have the chance to save it at least for a while. Hope this gave you some insight.

[Ladyprudence in reply to Hidden]

LLWegeners, you just said something that had a ray of hope: that you had recovered enough function not to need dialysis for now. Would you mind telling us how you did that? I'm sure it was a change in diet, but what what else?

I appreciate your message, because you show compassion and blatant honesty.

[Hidden in reply to Ladyprudence]

My Neph has told me that I am in the 1% club of people that recover like I did. I saw him a few days ago and his intake nurse told me that she has been working with a thousand dialysis patients for over 30 years and has seen only a handful of people recover enough to come off dialysis. My CKD was caused by an autoimmune disease and while I was sick with it for months, I was taking a lot of Ibuprofen to deal with the pain. It's known that NSAIDS can damage kidneys and it is usually acute and they can recover from it. Even though the autoimmune caused quite a bit of permanent damage, I believe the recovery was from stopping the NSAID intake. As far as diet goes, I had to watch the amount of phosphorous and potassium I was getting while I was on dialysis but after my recovery I had gone back to a normal diet. I have been at the mid to high end of stage 4 since early 2018. I wish I had some magic information that could fix people but as Bassettmommer and others have pointed out, CKD is not reversible and diet can only help slow it down and maybe improve your GFR slightly. Stay away from NSAIDS.

[geewhiz]

I have kidney disease for over 20 years without having to do dialisis. My GFR has ranged from 20 to 60. The last was 40. I am on a vegetarian diet, but last month before latest bloodwork I cheated and ate chicken soup plus other foods that I should not have eaten and now back on strict planrt based diet. Plant Based diet works and is one heck of an easier life than dialysis. I recommend Lee Hull web site and his books "Stopping Kidney Disease Food Guide" Plus Dadvice on Facebook plus Jen Hernandez also on Facebook. They promote a plantbased diet which is designed to reduce the load on kidney function and it works. Lee Hull is a 30 year survivor of reduced kidney function and his book is available on Facebook.

[Herewegoagain12]

The decision is very personal, and yours to make. Contrary to others, I have chosen quality of life over quantity. I had a liver transplant 7.5 years ago and have had many side effects from the tacrolimus (immunosuppressive), including CKD. I take 25 pills everyday to control the side effects. And I just never feel like I should. I spend every moment I have enjoying time with my grandchildren, without saying we can't have lunch or treats, I eat with my family and there is no longer 30 minute discussions on what I can eat. It's exhausting. Take time to really decide what is best for you.

I know many people that do great with dialysis. Sending prayers 🙏

[RhenDutchess123]

II would say it depends on what type of Dialysis you choose and are a candidate for...I do Peritoneal Dialysis on a Cycler at night while I sleep...i have very few food or liquid restrictions because PD is done daily...It has been almost 3 years...I feel so much better and it hasnt stopped me from doing anything I enjoy..It is easy to pack my cycler and solutions in the car and go for a vacation any time I want...I haven't traveled by airplane or left the US.. but don't think that would be hard, just need to plan ahead..Educate yourself on which type you think would least impact your life and make some choices... it is YOUR choice and there are alot of choices out there to pick from..

[Beachgirl32]

Also think about pd dialysis I think you have more freedom . You can do the machince at night in your home and you have your days free. Sometimes you may get pain from draining but it goes away quick . There also hemo dialysis you can do at home . I hook up for pd at 9pm I’m done at 6 am the nurses will set up what you need . You do have to go to training if you decide pd. If you are 20 percent or less function you can get evaluated for transplant list if that something you want .

I would not chose not to do dialysis because when your body has all the toxins you can’t filter out you will not feel very well . But that a personal choice but I know when my body was not getting rid of the toxins when I wasn’t set up for enough dialysis I was very weak and I had a grand mal seizure and my blood pressure was super low . It took awhile to get to feeling better now I’m on the right program for my dialysis I wouldn’t won’t anyone to feel the way I did that I ended up in the hospital . Go to your nearest dialysis center your doctor uses ask to talk to the differnt nurses .

[Ziggydoodah]

I have been on Haemodialysis for approx 18 months. Before I started, I believed dialysis was a sign I had failed trying to fight this disease. Even when my consultant talked to me about it, I still sat there thinking it did not apply to me. I was in a state of denial. I won't sugar-coat it. Like anything on this journey, it's two steps forward and about ten back. It is a personal choice only you can make. However as one of our consultants gleefully puts it...of course you don't have to have it but you will be dead in three weeks. Brutal but straight to the point. How do I feel about dialysis now. Truthfully i can see it far enough. I feel my life is like Groundhog day. Every week is the same. It does take up a big part of your life and restricts holidays etc. There are a lot of teething problems and you will grieve for your past life and "freedom".

However you WILL start to feel better. It won't be immediately and it could take months but you do start to feel human again. I work and I can run rings around my younger, healthier colleagues.

Make an effort to get to know your fellow patients. I was determined to just go in, get my dialysis and leave. However it has become almost like a little social club. I have become very attached to some of them and now class them as lifelong friends. They do get you through, when you are having a bad day.

My advice is to go for it. It won't be a walk in the park but you have got this far, so you must have a fighting spirit. I would say, give it 6 months. If its not working for you, then it's time to start discussing other options with your medical team. Everyone questions if they should go on dialysis. It's only natural to be apprehensive and concerned about the impact on your life. Like everything on this journey, take it one day at a time. All the best.

[horsie63 in reply to Ziggydoodah]

Ziggy you said it perfectly. I started hemo in Aug when I was in the hospital but started in center in Sept. At first I was like you, get in, get it done and go home. I started talking to some people while waiting and then some while hooked up and yes it's like a social club. I live in a really rural area with no neighbors and I work from home so I rarely see anyone outside of dialysis. I talk to the nurses, they always ask after me and worried about me when I was in the hospital. It's like a small family.

[Ziggydoodah in reply to horsie63]

Thank you Horsie. I think the camaraderie amongst dialysis patients is underestimated. I never knew anyone with kidney issues (well I knew 2 who got transplants but this was years before I had issues!) I only read about others experiences online. Now I am surrounded by them 🤣🤣🤣🤣. I have got to know some of the nurses really well too. I imagine it is a valuable lifeline for you, if you work from home and in a rural setting. Yes I detest going to dialysis but usually I end up having a good laugh with everyone. An unexpected bonus I would never have considered. I hope everything is going well with you Horsie xx

[maven123]

I am 77 years. My past medical history included bladder and prostate cancer,long term covid. - 2years and now stage 4 kidney failure. GFR ABOUT 19. I have been stage 4 since 2016. Best guess is I have about a year left. No symptoms.

My wife died two years ago from Covid. Her death took away my strong desire to live a long life. I am in a nursing home waiting for what ever comes next. I STILL FIND JOY IN MUSIC AND READING. However, I decided against dyalisis.

MY love is gone and family support is minimal. If you have someone to live for. Do whatever it takes to survive.

[Camppy3]

I was down to 9 gfr, my nephrologist was trying to hold off but donor team was taking a long time to determine if my Husband was a go. So doctor wanted meu to do dialysis, I felt ok. Do PD dialysis, the one at night. I was only on PD for 2months and then they ok'd my Husband. I wonder now if they could of held off, they weren't sure how long it would take for my husband, I even called his team and they didn't have an answer yet.I didn't do night one, just pole one 4 times a day, they trained me on that and I figured why train on machine for 2 mos.

[Ladyprudence]

Still not sure where to reply, so I just slide in where I see a space. I'm actually responding to the discussion about whether dialysis is right for an individual. I feel so lucky to be reading all your responses and picking up on the concern for each other and the desire to help. Thank you all so much for what you do. I know it's not easy, and my time may be coming to make that decision. When it does I'll know where to reach out. Just wish I could something in return.