Trouble with dialysis

[Barbara N]

I don't know if this fits in this category but it is as good a place as any. I knew I would need dialysis for at least 3 years now but it was always something off in the future when the doctor told me that I had to tell him that night if I was going to have dialysis or not because he would have to operate in the next 24 hours or i wouldn't make it. Even though I had earlier decided not to do dialysis, when faced with the immediate death, I said yes. After 3 months of dialysis I couldn't take any more. I had a TERRIBLE REACTION TO IT AND MY FREE DAYS WERE EVEN WORSE THAN THE DAYS ON THE MACHINE. I felt so sick all of the time, on and off of dialysis that I decided to stop and accept the consequences. I am in my fourth week off of dialysis now and feel good. I am living life again. It is by no means perfect but it is so much better than before. I have no idea how long it can last because all of the Journals and doctors say you can only live up to 3 weeks after you come off of dialysis. I will see how long I can prove them wrong, but I am not going back on dialysis.

[Alysia]

oh. no. dear Barbara. I cry for you. :crying: too much pain and suffering.
if you stop the dialysis, does it mean that you are going to end your life ?
if so, please don't. please continue. maybe it is unfair to tell you to do it when you suffer so much from it. but maybe it will be better in time. you are a fighter. you are a strong woman. who knows ?
maybe you will continue with it for a while and then some new med will help you to feel better.
please don't give up. your life are so precious.
I love you very much and I can't bear to know that you are suffering so much, but please hold on, maybe something good is on the way to help you to feel better.
I am writing now with tears. I wish I could hug you for real.
I am sending to you deep prayers and gentle hugs. please don't give up.
please update us what is going on.

[jvilner]

Barbara, I had a bad day today with a dr visit and ended up crying most of the day-just wanting to give up. Not knowing how this disease will progress and when is driving me crazy. But we must fight the fight!! Don't give up. Speak to your doctor. Let them know what you are feeling. Maybe there is something else they can try. Sending you live and support.

[pberggren1]

Barbara, I am in tears now. I wish there was something else that could be done for you.

[Debbie C]

Barbara, I feel so sad for what this disease has done to you and all the suffering you have been though. I am at a lose for words because I don't know what I would do if I were in your shoes. I do hope you are strong enough to ride your horse and in that you find comfort. If you are on your fourth week without it then you have already proven them wrong. You are one of the strongest ladies I have meet on this forum and maybe you will decide you will give it dialysis another try. I am crying for you Barbara and will keep you in my prayers. :sad:Animo

[annekat]

Barbara, I feel just like everyone else above, very sad that it has come to this for you. What about the surgery the doctor mentioned? What about a kidney transplant? As Deb says, you have beaten the odds already by going 4 weeks without dialysis. Is there time to figure something else out? You are a strong, brave woman who seems to know instinctively what is right for you, when to do as the doctors say and when to take another course of action. We are so honored to have you on this forum and that you have made sure to update us at this critical time in your life. Believe me, I'll be praying for you every day.

[Alysia]

Dear Barbara, since I read this thread yesterday, whenever I think about you (and I think a lot) my tears are just flowing :crying: I pray that God will send you a miracle. I am sending to you all the love and prayers that I can.

[drz]

I don't know if this fits in this category but it is as good a place as any. I knew I would need dialysis for at least 3 years now but it was always something off in the future when the doctor told me that I had to tell him that night if I was going to have dialysis or not because he would have to operate in the next 24 hours or i wouldn't make it. Even though I had earlier decided not to do dialysis, when faced with the immediate death, I said yes. After 3 months of dialysis I couldn't take any more. I had a TERRIBLE REACTION TO IT AND MY FREE DAYS WERE EVEN WORSE THAN THE DAYS ON THE MACHINE. I felt so sick all of the time, on and off of dialysis that I decided to stop and accept the consequences. I am in my fourth week off of dialysis now and feel good. I am living life again. It is by no means perfect but it is so much better than before. I have no idea how long it can last because all of the Journals and doctors say you can only live up to 3 weeks after you come off of dialysis. I will see how long I can prove them wrong, but I am not going back on dialysis.

Sad news indeed!:sad:

Did the team know about your bad reaction? Did they discuss any options in how it might be done to reduce or avoid such problems.

I had several plasma exchanges when I was seriously ill with Wegs and I thin they went OK. I know they monitored me closely for possible adverse reactions and gave me some drugs to try prevent or avoid them.

Dialysis has really improve in past couple decades and some times people do them at home and while traveling with small portable units so there should not usually be any horrible reactions to it or afterwards.

Years ago it was much more of an ordeal and my mother close to die rather than live on dialysis but it seemed top me like a horrible way to die so I decided if my kidneys fail, I will try it. I lost half of my kidney function due to Wegs and diabetes but hope they will last me long enough for me to die from an infection or heart attack or something else.

I hope you can and will get another consultation with another dialysis center and/or nephrologist before it is too late.

I am very sorry about your state since you are experiencing one of my worst night mares.

[JeanMarie]

Barbara, just thinking of you & praying there is some solution that will make you feel better.

[windchime]

Barbara praying that another option comes your way. I'm sorry you had such a reaction and that necessitated you making this choice. Enjoy your family and horse. Love and hugs to you.

[rebekah]

Oh, Barbara, I am so very sorry to hear this. :crying:

Have you talked to your nephrologist to find another option? When my kidneys were failing, I did dialysis at my university's kidney center. I slept there overnight while I got it done so I could continue to attend my classes. I did consider doing dialysis at home before my transplant, because like drz says, you can do dialysis at home these days. Perhaps you could try the one where you do it at home and you might find that's better for you? Is a transplant an option or are you on the waiting list for a kidney?

I do hope you can find a solution so you feel better. Sending lots of hugs and positive thoughts. You are in my prayers.

[tigerleah23]

Dialysis is a nightmare for me too. I have been on dialysis the last 9 years. There are many times when I have felt this way, but I endure it because I have a 10 year old son who needs me. Painful needles and continuing nausea...I understand. I really feel that you should look into the different options on dialysis though because they CAN make you feel better. It may take awhile for them to find the right combination, but there are people who have been on dialysis for 50+ years! Please, please reconsider. Love and prayers sent your way!

[Debbie C]

tigerleah23...Barbara never changed her mind and we lost her shortley after her that last post.She was a very strong lady and we all loved and miss her. I hope you will be able to get off dialysis ,have they ever thought about a kidney transplant ? Good Luck to you.

[mrtmeo]

I would just like to post to anyone having problems with traditional dialysis that the quality of life is not good.

However, there is a much better option which is called Nocturnal at home Dialysis.

This involves dialysing 4 - 6 times per week while you sleep and offers a much better diet and quality of life.
For anyone on dialysis, this nocturnal option really looks like the best.