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« on: July 20, 2019, 06:43:38 PM »

I heard about this forum when I went to visit a dialysis center. I went out of curiosity mostly. I nly wanted to see what it was like, even though my mind has been pretty much made up. I have refused it.

I know that the rosy stories that you see in the media about life on dialysis are mostly propaganda.

I was afraid somehow I would be forced onto it, but it seems that so far my wishes have been respected.

I have known I had kidney disease since 2013, but really my kidneys had been deteriorating for decades and I was never told. I had complained about swelling and cramps since 2011. My doctor told me I was imagining the cramps and that the swelling was only cosmetic. Then, my kidneys failed.

I have since then avoided doctors but have gotten my blood tested independently, for my privacy. I consulted with several naturopaths. I saw a kidney doc recently but I kinda don't see the point.

My creatinine is in the 2.9-ish range. I'm 61 and otherwise very active, healthy and happy. Oddly, I feel like I am in the prime of my life.

I am publishing a book about my experiences (that includes recipes in the appendix).

Female, location USA
Michael Murphy
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« Reply #1 on: July 21, 2019, 07:22:31 AM »

I  am 68 I have been on dialysis 6.5 years.  Now I agree Dialysys sucks.  I delayed the start of dialysis 2 years, I did this despite my nephrologist saying it was time to start.  Now, while Dialysys sucks, it sucks less than being dead. 
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When all else fails run in circles, shout loudly

« Reply #2 on: July 22, 2019, 04:22:12 AM »

Welcome to the site Quimby


Take care, Cas


I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Charlie B53
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« Reply #3 on: July 22, 2019, 05:18:55 AM »

Welcome to IHD!

Some one once said 'We have noting to fear but fear itself.'   And this is very true about Dialysis.  We fear the unknown.  We hear stories of all the Doom and Gloom.  And in some cases they can be true.  But there are a lot of things those people are NOT telling you.  Like they are not willing to adjust their diet, or fluid intake which makes aHUGE difference in your treatments.

Hemo dialysis is far more rigorous then PD.  The diet and fluid restrictions are far far tightrer than those on PD ad the Dialoysis machine cannot remove near as much potassium and phosphorus  and when you add the fact that large fluid take-offs can very easiloy cause muscle cramping you have to be seriously vigilant with your diet and fluids.

PD on the other hand can be a Blessing.  The daily, or nightly treatments give you much much more freedom with your fluids, diet can be near unlimited as PD stripped a lot of potassium out of me.  So much I was comstantly told to eat even more high potassium foods and take potassium supplement pills daily.

There are a couple of sites, kidneyschool.org IIRC that has learning modules that clearly explains most everything.  Learning as much as possible takes a lot of the fear simply by helping educate us so we know what is happening.

Having a site like IHD is great because we can answer any questions in those areas you do not get such a clear understanding.

Fear is very natural so learning as much as you can does help so much.

Like already said, it Dialysis sure beats the alternative.  Life can still have so much meaning.  Never give up.
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