Has anyone ever avoided the need for dialysis indefinitely?

[Athena]

I've just had an interview today with a 'renal social worker'. It wasn't exactly as uplifting as I had hoped. She kept reminding me in little insidious ways of the depressing endpoint. We had the interview in a hospital dialysis centre, so this only made me feel worse as I saw some very sick looking people.

I told her that I only want to focus on hope - the hope to stave off dialysis for as long as possible, to stay healthy and to remain independent of hospitals.

I just would like to ask whether anyone has heard of this being done? I know that when enough kidney damage has occurred, it becomes an incurable progressive disease. I know all of that. But I guess I am wondering about the possibilities here and whether there have been any exceptional cases?

My Neph did say once, that nothing in medicine is guaranteed. The social worker seemed to embrace my goal & is going to organise for me, not just a good renal dietician but also a renal pharmacologist to investigate some supplements & herbs I want to take (Wow, I thought! I can't wait to meet this person!).

I'd love to hear from people.

[Michael Murphy]

I know one women who has been successful in avoiding Dialysis for years.  I meet her when she and I were having fistulas installed.  I have started dialysis but she is still healthy and is doing well.  I would advise visiting a non hospital Dialysis center to see what it is like.  Hospitals tend to treat patients who are in the hospital and are obvously not well so the patients you saw were not typical.  Don't get me wrong try to avoid Dialysis for as long as you can.  Speak to a renal dietician about what foods to avoid.  Have a fistula installed just in case (Dialysis is easier and Healthyer wit a fistula.) but the important thing to know is Dialysis is not the end.  Two things that I have learned.  Dialysis is a pain in the butt, and the people who you meet patients and staff are mostly a positive experience.
I wish you luck in your journey.  I know how upsetting this is I too tried to avoid dialysis for about 4 years.  I was crushed when I realized it was time.  But life goes on and dialysis is survivable.

[Rerun]

You will feel pretty sick when you get uremic enough.  The scary part is if your potassium gets to high you can just drop dead...which would be avoiding dialysis.  Not trying to scare you.  You have the decision to never go on dialysis.  Some people choose this knowing they will pass on to a better place.  But, without kidney function you will die barring a miracle which I have not seen happen but there are miracles and Yes I do believe God can do anything.

The choice is yours. 

We are here for you.   

[Athena]

Rerun, sorry for the confusion of my post. I didn't mean to imply that I would avoid dialysis AGAINST doctor's orders. What I am dreaming of here is avoiding dialysis on the basis of not reaching end-stage 5. I am currently in Stage 3b, on verge of Stage 4.
Thank you for your support.

[kristina]

I've just had an interview today with a 'renal social worker'. It wasn't exactly as uplifting as I had hoped. She kept reminding me in little insidious ways of the depressing endpoint. We had the interview in a hospital dialysis centre, so this only made me feel worse as I saw some very sick looking people.

I told her that I only want to focus on hope - the hope to stave off dialysis for as long as possible, to stay healthy and to remain independent of hospitals.

I just would like to ask whether anyone has heard of this being done? I know that when enough kidney damage has occurred, it becomes an incurable progressive disease. I know all of that. But I guess I am wondering about the possibilities here and whether there have been any exceptional cases?

My Neph did say once, that nothing in medicine is guaranteed. The social worker seemed to embrace my goal & is going to organise for me, not just a good renal dietician but also a renal pharmacologist to investigate some supplements & herbs I want to take (Wow, I thought! I can't wait to meet this person!).

I'd love to hear from people.

Hello,
I don't know if there is any chance to avoid dialysis at all...
... Mind you, I have tried to do it for over 43 years, but in the end I had to give in to dialysis ...
...The most important point for me always was and still is, to try my very best with a suitable diet,
a suitable life-style and, of course, lots of hope and lots of good luck plays a role as well.
... When "my" chronic kidney disease kicked in very badly towards the end,
I was really glad and grateful that dialysis as an option exists for me, because it has saved my life...
... and without it I would be dead and buried by now...
... and dialysis gives me an opportunity to continue with my life
and discover and learn and study more in the process of my life ... and that is very important to me...
Best wishes and good luck from Kristina.

[Athena]

Thanks Kristina for your very wise words. Honestly, if I could be given 43 years from now until dialysis I would die a very, very old & content woman. That would indeed be the miracle I'm seeking.

I just need to find a way to deal with this & to keep things working for longer. I also do believe there is probably a lot of luck involved as well (genetic and environmental luck).

Today, I ate an Oporto chicken burger (albeit with no cheese) today because I was so hungry! 

[kristina]

P.S.   ... and don't be too hard on yourself, we are all human, you know....
... and take great care of yourself and good luck,
Kristina.

[Sue]

I'm in the same position Athena, trying everything I can to avoid dialysis for as long as possible! I was diagnosed with CKD back in 2007 and was advised that I would need dialysis within 6 months. My renal function was at 18% . Since then I have had several surgeries including reimplantation of my ureters to try and slow the damage to my kidneys caused by urinary reflux. I have been careful with my diet, and my function was stable at 16% until almost 3 years ago when it fell to 11%. I had fistula  formed in April 2012. My function promptly improved and went back up to 18%! much to my doctors surprise and my delight over the past few months it has declined again and is now at 14%. My hope is that I will remain stable for as long as possible  . My fistula is giving me a heap of trouble, I'm seeing my vascular surgeon next week when he will band it and remove off shoots to  hopefully fix my numb hand ! This will be the 6th op on it ! Apart from the renal failure I am pretty fit, I work part time. My nephrologists always says that he doesn't know how I have avoided dialysis but what ever it is to keep on doing it haha!

[kristina]

Sorry Sue for all the trouble you have had to go through with your fistula
and I do hope that your vascular surgeon puts everything right as soon as possible ...
Good luck wishes from Kristina.

[Athena]

I'm in the same position Athena, trying everything I can to avoid dialysis for as long as possible! I was diagnosed with CKD back in 2007 and was advised that I would need dialysis within 6 months. My renal function was at 18% . Since then I have had several surgeries including reimplantation of my ureters to try and slow the damage to my kidneys caused by urinary reflux. I have been careful with my diet, and my function was stable at 16% until almost 3 years ago when it fell to 11%. I had fistula  formed in April 2012. My function promptly improved and went back up to 18%! much to my doctors surprise and my delight over the past few months it has declined again and is now at 14%. My hope is that I will remain stable for as long as possible  . My fistula is giving me a heap of trouble, I'm seeing my vascular surgeon next week when he will band it and remove off shoots to  hopefully fix my numb hand ! This will be the 6th op on it ! Apart from the renal failure I am pretty fit, I work part time. My nephrologists always says that he doesn't know how I have avoided dialysis but what ever it is to keep on doing it haha!

Sue, it's sure great to hear those words from a nephrologist "whatever you're doing, keep on doing it". That is a great endorsement of your efforts. It would great to hear how you're been eating & taking care of yourself during this time.
I wish you the best of luck with everything.
Athena

[Sue]

Thank you Kristina and Athena for your good wishes . In regards to my diet, I really just try to eat as healthily as I can, fruit  and vegetables, chicken and a little fish. I avoid salt and high potassium foods. I drink mainly water. My renal failure stems mainly from bladder issues, I self catheterize as I cannot fully empty my bladder, this has helped kerb the damage caused by urinary reflux. I have had several iron infusions and take iron tablets, vitamin D , I try to exercise regularly , The hardest thing for me to give up was caffeine ! Decaffeinated just doesn't cut it and I used to drink Pepsi max daily, but its a bladder irritant so had to go :/  it's quite a journey isn't it? My nephrologists thinks that I will be able to go down to about 8% function before I need dialysis, so I just keep clinging on to my 11%

[Sibella]

I haven't got brave enough to post anything much yet, but I have to say thank you for all the information everyone is sharing!