Whats next?

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Whats next?

Postby Johnylefox » Fri Feb 12, 2016 9:08 pm

Just out of hospital after 10 days.

I had PD catheter inserted on 4th Feb and started dialysis on Monday 8th.

My eGFR is now around 7%, it literally fell from 50% in the summer and 35% in November to 25% in December and two weeks ago I was crap.

To date I have done 4 hours, 5 hours and 10 hours. Everything seems to be ok and I have cleared some good number apparently.

So how long before I start to feel better? If at all? The team in hospital reckon one or two months. Is that accurate?

I do not expect to run the London Marathon but I would like to ab able to go for a 30 minute walk without sitting down after 5 minutes!

All I want to be able to do is go back to work and do something like 40 hours per week, for my sanity as much as anything else.

IGAN Nephropathy was the culprit.
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Re: Whats next?

Postby rheaybou » Sat Feb 13, 2016 6:48 am

Great to hear that you are getting good clearance, hope the initial drain pains have passed and not kept you awake as they did with me.

Unfortunately as with everything kidney related it is in my experience almost impossible to put a timeframe on anything, however....

If you are feeling tired, out f breath it seems to point towards anemia, which could mean you need iron and EPO to get your red cell count up?
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
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Re: Whats next?

Postby chessnut » Sat Feb 13, 2016 10:08 am

Hi JonnyFox,

So how long before I start to feel better? If at all? The team in hospital reckon one or two months. Is that accurate?


This will depend on your own situation, and if you have any other issues.

It took me 3 months to get back to work after my collapse into renal failure. I had bad anaemia, which left me very weak. The high blood pressure had also affected my eyes, which made it hard to read for a couple of months.

I do not expect to run the London Marathon but I would like to ab able to go for a 30 minute walk without sitting down after 5 minutes!

All I want to be able to do is go back to work and do something like 40 hours per week, for my sanity as much as anything else.


I hope you get there, though it may take a bit of time.

After those first 3 months, I can now stay on my feet for a couple of hours at a time, and maintain a full-time (albeit a flexible, and mostly desk bound!) job around home dialysis.
This has lasted for the past 3 years, while I wait for a transplant.

As rheaybou said, iron and EPO keep the anaemia at bay. Without it, my red blood cell count falls.
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