Feeling Ill

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JohnW99
Posts: 23
Joined: Wed Oct 25, 2017 10:54 am

Feeling Ill

Post by JohnW99 »

Ladies and Gents
At what point did you start to feel ill? My GFR has fallen to 26, until recently I have felt no ill effects, now I am getting headaches, a metallic taste in my mouth, i am low on energy and my blood is showing as slightly anaemic,
Is this normal and in line with what everyone else has experienced.
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Feeling Ill

Post by wagolynn »

Hi JohnW99,

Each of us is different as to when we start to feel any effects but your symptoms are typical.

Get the anemia sorted, and get your BP to around 120/80 (cut out added salt), eat a varied diet, until told otherwise, look at five-a-day as the optimum, this will not change the kidney condition but will maintain your general health.

Best wishes.
JohnW99
Posts: 23
Joined: Wed Oct 25, 2017 10:54 am

Re: Feeling Ill

Post by JohnW99 »

Thank you , I have an appointment for my anaemia in January, I suppose I will start on EPO.
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Feeling Ill

Post by wagolynn »

It depends on blood results, and the consultant.

Some try Iron injections/infusions first, if that fails then EPO, others try EPO first, there may be good reasons for either route which would make sense given the full picture.

Low blood count makes me feel very weary.
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Feeling Ill

Post by rheaybou »

I was diagnosed at 8%.

So I think my body adjusted over time to reduced function, I never felt ill until I was diagnosed and told I had to start dialysis within weeks.

Maybe knowing you have reduced function doesn’t help? But also anemia kicks in for people at different times. EPO And Iron helped me slightly, but was taking more than Lance Armstrong’s and could barely climb the stairs.
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.

==
Alports.
JohnW99
Posts: 23
Joined: Wed Oct 25, 2017 10:54 am

Re: Feeling Ill

Post by JohnW99 »

My consultant is reluctant to put me on EPO, he says my anaemia is not bad enough to justify it, so will see where this goes. my iron and B12 count is good but if my body is not producing enough natural EPO then I suppose I cannot use these stores.
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Feeling Ill

Post by wagolynn »

As I understand it - You suppose correctly.

EPO gives your bone marrow a Kick in the pants to get it produce more red cells.
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Feeling Ill

Post by rheaybou »

You also need enough iron along with EPO to make the red blood cells.
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.

==
Alports.
Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: Feeling Ill

Post by Dixie1 »

I was lucky and received a deceased donor transplant before I started dialysis and my eGFR was 10. I was still feeling quite well, only really suffering with some cramp and lack of energy, plus I would frequently feel muzzy headed (brain fog) at work in the afternoons, but then don't we all! :lol: I think as someone else has said, everyone's experience of renal failure is different. With regard to the anemia, my Consultant said I would start EPO when my hb levels fell below 10 (100).
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