Dialysis Patients - when transplant is NOT an option

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Dialysis Patients - when transplant is NOT an option

Group for members who are on dialysis, or living with kidney disease, and are not candidates for kidney transplants.

Members: 8
Latest Activity: Mar 20

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11years and still going

Started by Aquinob Jul 28, 2014. 0 Replies

I have been on dialysis for 11 years now! I can't get a transplant but doing nocturnal dialysis 6 to 8 hours every other day has helped me tremendously. This is the way to go.

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Comment by Stacey on January 19, 2015 at 16:40
Hey Meadow, sorry to hear that you have had such a hard life. Any choice to start dialysis or not to start is your choice, no one can make you do it. If you do decide to go ahead, home pd is your best option and is the least intrusive form of dialysis. You need to talk with your family, to make them understand where you are and what you want for your future. Good luck
Comment by shirleymac on January 18, 2015 at 15:15

Thanks Stacey

This is my 3rd try at answering. I keep closing my browser and losing it. I'm sorry your mom was so ill. MRSA seems to be a horrible affliction. She did very well to hang on as long as she did. I haven't had a pleasant life. I won't go into it but living for almost 64 years with nothing good to look back on and nothing to look forward to doesn't give me much incentive to go on. 

My husband died 18 months ago. He was an alcoholic and died from cirrhosis. He lived for 6 weeks after I put him in hospital but he'd done so much damage to his brain that he didn't know where he was or who I was most of the time. He was sedated and even though it was 6 weeks it seemed that he had a very peaceful end. My daughter and I were with him when he passed. 

I've always been independent and it's such a habit that I feel silly asking for the help I need. My 35yo son is autistic but because he was diagnosed at 15 he was too old to receive services and it's something I've fought for all my life. I'm tired now. I know I've made mistakes with him but it's now at a point that I said I wanted to hire a house cleaner. Then he had a fit cause he doesn't like strangers in the house. I wanted to put hardwood floors down, same thing. I got angry at him and now he's been depressed for 2 weeks which makes life even harder. 

My 38yo daughter lives with me too cause she left her husband last year (no kids thankfully). She said I have to stop looking at things negatively. I'm not sick, no one has told me I need to be on dialysis but I feel that I need to be prepared for it. I've heard PD is more effective than hemo plus the hospital is over 1/2hour from here. But if I can't have a clean home and a sterile room like I've read about I can't do home dialysis. 

I tried to commit suicide a number of years ago but stopped myself because I was afraid I'd end up brain damaged. I also had a religious upbringing and still have this feeling that suicide is a sin although now I'm not even sure there is a God or whatever. I can see that the things I've been through have made me strong but I really thought I was reaching a point where life would be good now and I get hit with this. That's why I don't want to even start dialysis but I also have seen how upset my daughter was losing her dad, my son doesn't care. They didn't talk for the last 3 years of his life. I know both of them would be upset if they lost me. 

Comment by Stacey on January 17, 2015 at 23:10
Believe me Meadow I know how you feel about dialysis is daunting.....like you all I knew of PKD was that it killed my grandfather at age 69 and my mom at 62! So when suddenly I found out that my kidney function was dropping like a stone and dialysis was looming on the very near horizon I was terrified!! PD was never even offered to anyone in my family, so I knew nothing about it... I will not lie and tell you it's all sunshine and rainbows, but I am amazed every night when I "plug in" as my husband calls it, at how unobtrusive it really is. I know that some day I will need to move to hemo and I will cross, or not, that bridge when it come. I have even gone on a trip to Hawaii since being on PD. I set up the machine before dinner and the plug in whenI retire to bed. Wake up in the am and I am done. I am so much less fluid and food restricted then my mom was. I still have bad days when I hate this whole thing and have trouble seeing the future in front of me. I will never get better, I will never get a transplant and I am only 47 yrs old...sometimes I think that I have a hopefully have years of this to come other days that same though makes me want to stand infront of a bus....but as my family jokes if I did that I would only manage to break something else I would have to live the rest of my life with!! Hehe
Comment by Stacey on January 17, 2015 at 22:58
My mom was very very sick. She had MRSA and scared lungs. The MRSA meant all of her dialysis had to be done in a separate room, and she had to be very careful around other people. My mom was very social and this took a lot of that away. After two years of more time spent in hospital then out, she made the decision that she could not do it any more. My mom was down to 90 pounds and was never going to get any better, we all knew that. Her fistula collapsed and the only other vein they could use was the one in her uper thigh....and the Drs said it would not last long...she was running out of places that could be used for dialysis. She had been such an strong active life person as a 30yr serving member of the Canadian Air Force.....she was reduced to needing oxygen full time and was no longer able to walk unassisted. It was the worst day of my life when she called to tell me she was done. I few home right away As I had always promised her that when she said she was done I would be there and support her....so for 2days I sat at her bedside day and night and I was there holding her hand when she quietly passed on the Sunday night. I will never tell anyone that they have to go on, but stopping is a very final decision that only you can say when enough is enough
Comment by shirleymac on January 17, 2015 at 18:54

I have a question for Stacey. Why did your mother stop dialysis? I ask because I'm a few months shy of 64 and I'm just tired of living this way. I haven't even started dialysis (I'm at 17% GFR) but am looking at options. I don't WANT a transplant. My dad died from PKD at age 55. My neph said I've done well to reach 63. I'm a widow. Even doing PD seems daunting to me. 

Comment by Rukhsana Potter on December 9, 2014 at 9:25
If anyone has diet plan, please send me through email. rukhsanapotter@yahoo.com
Comment by Rukhsana Potter on December 9, 2014 at 9:23
I need help regarding diet, what should I give him to eat. Which helps him to grow well, as he is becoming very weak.
Comment by Rukhsana Potter on December 9, 2014 at 9:19
Hi, im from Pakistan, my son is going through dialysis since two weeks he is only 6 years old.
Comment by Stacey on August 17, 2014 at 16:27
Hey there, I have been on peritoneal for four years, I am 3rd gen PKD and due to a 99% sensitized rate I have been told I will most likely not receive a transplant. So now what?? My mother did dialysis for 8yrs then signed herself off. She was also not a candidate for transplant.....she was 62 when she died, I am 46....
Comment by Hilary on January 9, 2014 at 15:13
In my opinion, it is a misnomer, that everyone facing dialysis, should "just have" a kidney transplant... as we all know, it is not always as simple as that.

Would love to share with others, who are living with dialysis, where transplant is not an option.
 

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