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grayfox
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« on: May 01, 2016, 09:12:41 AM »

Hi everyone,

I am a 68 year old female and was diagnosed with renal cell cancer in my right kidney seven years ago, and it was removed.  Immediately following surgery, my creatinine reading increased, and I was diagnosed with chronic kidney disease, stage 4.  There were no indications that my left kidney was failing prior to the surgery.  My creatinine reading was only slightly elevated.

In December of last year my creatinine level was 6.1, and my egfr was 7. I was feeling extremely fatigued, short of breath, my blood pressure was high and I never felt well. I finally agreed to start dialysis. 

I started dialysis at the end of January this year, and it has been extremely stressful.  The very first week I was infiltrated and had to have a fistulagram immediately. 
During the next few weeks I experienced painful leg cramps, several large blood pressure drops, and having to hold for extended time after the needles were removed because of having low platelets.  I am tolerating the treatments much better now, but I still have occasional large blood pressure drops.  I am slowly feeling the benefit of the treatments. 

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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: May 01, 2016, 10:42:50 AM »

Welcome to the site Grayfox

    :welcomesign;


I hope you'll keep feeling better.

Take care, Cas
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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
Michael Murphy
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« Reply #2 on: May 01, 2016, 01:52:05 PM »

Dialysis is better then the alternative.  Saying that still does not make what you are going through any easier.  When I started the only fair way to describe me was fat.  I started at 150 kilos and everyone's assumption was is was retaining fluid.  The solution was to drop 3 to 4 kilos from me and restrict my fluid to 40 0z. A day.  This continued for several months it was frankly horrible.  This ended on the day after a dialysis session when I went to my nephrologist and my BP was 75 over 45. Panic insured and I was immeadiate sent by gurney to the medical group urgent care center for two bags of saline.  My BP was still low but I wanted to go home to bed I checked out AMA and went home to sleep.  The next day I got a call to come over to the doctors again.  My Dry Weight was raised to a kilo under my real weight and my fluid restriction was lifted.  Since then Dialysis has been much easier for me.  Was I upset no by that time I had learned that setting dry weight was not a exact science.  The thing that will kill you is not taking off enough fluid,  fluid buildup eventually will kill you so the common practice is to challenge your weight  until you BP drops.  Eventually your dry weight is deduced by this method. In my case the difficulties were caused by the odd fact that my kidneys were failing they still were able to remove any excess fluid.  The moral of this story is that every one is different and the biggining of dialysis is trial and error until the right settings are determined for you.  I would ask my doctor about my BP and see what the doctor says.  Hang in there eventually it gets easier.
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kickingandscreaming
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« Reply #3 on: May 01, 2016, 06:58:29 PM »

Welcome. Sorry you are off to such a rough start. Have you considered Peritoneal Dialysis?  I don't know if it's available to to you or whether there's some reason it hasn't been offered, but it is a much gentler form of dialysis and one that you do on your own at home.  There are no needles to infiltrate you either.  No dialysis is fun, but PD is an easier option in many ways than hemo.  I hope things improve for you in any case.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #4 on: May 02, 2016, 05:34:27 AM »


Welcome to IHD.  Many have a very difficult time beginning Dialysis, having very uncomfortable 'side-effects' caused by the inaccuracies of initial dialysis sessions.   As Individuals, there is no one size fits all recipe for dialysis.   Multiple adjustments are needed to tailor treatment to the unique demands and limitations of your particular body.   While calculations are helpful, there is still much trial and error until a comfortable treatment is worked out.

Constant communication with your Dr and treatment team is essential to record changes and make progress.  Keep notes if necessary so not to forget to tell of any uncomfortable problems that may occur at home after treatment sessions.

IHD has a lot of information buried in threads which is very helpful to many.  Every added voice ads strength to our Family and helps support so many yet to come for ours is sadly a growing affliction terrorizing far too many people.

Browse often, post freely.

Take Care,

Charlie B53
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Simon Dog
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« Reply #5 on: May 02, 2016, 10:15:42 AM »

Congratulations on beating renal cancer.

KS is right - if peritoneal is right for you, it's a much easier way to go than hemo, plus, if you have any residual renal function left, it can preserve it for a longer period of time than hemo.

I've done most modalities other than transplant (haven't done hemodiafiltration), and they all can give you a decent life if you have things worth  living for when you are not on the hose.
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Charlie B53
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« Reply #6 on: May 02, 2016, 04:10:43 PM »

..........on the hose.

I got to remember this phrase.   So I can use it!   I always tell the Wife I gotta go 'hook up'.

Thanks!
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