Close to dialysis and Scared! - Kidney Disorders Message Board

Divawriter · 07-11-2009, 11:30 PM

My nephrologist told me the other day that I am now "close" to going on dialysis. I have been avoiding this inevitability for about 7 years, but it looks like the reality is getting closer.

On one hand, I think I'd rather be dead than live on dialysis, because I can't see that as actually living. Whenever I see people going from or to dialysis treatments at my local hospital's clinic, I cringe. They look so bad, their skin color seems to be really "off" and basically they look like the living dead.

I know that is horrible to say, but that is my experience. I cannot imagine myself being like that. I wonder if there is anyone out there who is on dialysis that can give me any hope, any bright spots in this dismal situation.
(Also wondering whether you find you have more energy or feel better once on it, because from where I am sitting, it sure doesn't seem like it.)

By the way, I am a recently turned 57 year old woman, with no outward signs of kidney failure except that just a week or so ago my eyesight worsened. No nausea or throwing up).

Thanks.

Cora1003 · 07-12-2009, 06:21 AM

I was in the exact same boat as you, except I was in my late 20s and early 30s. I was willing to die rather than go on dialysis. Now here is the good news. It it never anywhere near as bad as your imagination is telling you. Yes, you will feel better once on dialysis. You will still have dietary and most likely liquid restrictions, but you will feel better.

I know that my color was off too when on dialysis. I felt ok though. After my transplant I had friends keep commenting on my color and how good I looked (I couldn't really tell the difference looking in the mirror) and finally I asked "What. Did I look like a corpe before?". The answer was "Yes". So I looked bad and had family and friends worried, but I felt ok. It does take up a good bit of time, but you learn to adapt. You will be fine. Have you been worked up for a transplant? I know that the drugs sound scary but I haven't had any real problems there either.

Please ask any questions you want about dialysis or transplant. There are a lot of knowledgable people here

deedee1313 · 07-12-2009, 07:13 AM

My husband was on dialysis.There were a lot of people at the center that looked very well.Some you wouldn't even know that there was anything wrong.Have you checked into the peritoneal(spelling)dialysis?It is a lot less restrictive on your diet and my husband preferred it to hemodialysis.Good luck.

baylee6 · 07-12-2009, 10:45 AM

Diva,

I'm just starting down this path. Going to a Neprologist for the first time in August. However, my GFR is in the 50's and my creatinine is 1.2. If you don't mind me asking.... were you 'first' diagnosed 7 years ago? And do you remember your lab result numbers/creatinine? Sorry for the questions as I am trying to learn all I can....and pretty dang' scared.

As for the dialysis. My youngest son has a friend who has been on it for about 8 months. He is 20 years old and has been dealing with CKD since before he was 10 years old. I know he is younger than you so not sure how it relates. But, I will tell you that he goes 3 days a week. Usually from around 5 in the morning to 8:30+am. It does not interfere with his days or weekends. He did have a cath by his heart but he said he could not go swimming or get any water in it so he choose to use his arm. They put a fistula in his arm (others will know much more about it than me). I asked him how he deals with his time when he is there and he says he just goes to sleep. He looks fine...and I see him around the house here often and I know he is busy on the weekends with his friends. So far...so good with him. He hopes that sometime in the future his sister will donate one of her kidneys.

Take care...and sending comforting thoughts your way.

Diane

writeleft · 07-16-2009, 10:11 PM

Hi,

I too am facing dialysis. My GFR has been in the mid 20's for at least a year, my last blood work (this week) came back with a GFR of 23. My renal damage was caused by hypertension and strokes at 43. That was 5 years ago now.

I have had other major health issues to focus on, so I am just getting to my kidney disease. I certainly would never choose to die, to avoid treatment. Many folks do some very difficult things every single day to keep alive, and I include myself in that group...Happy to wake up everyday!

By the way, before you have to consider dialysis, your doctor will set up a counselor to sit down and explain all your options. Once I had that information, I got over a lot of misconceptions and felt much better about it. I hope you do too.