Search found 23 matches

by JohnW99
Thu Mar 08, 2018 2:00 am
Forum: The KPG Forum
Topic: Feeling Ill
Replies: 8
Views: 20641

Re: Feeling Ill

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.
by JohnW99
Mon Dec 25, 2017 8:13 am
Forum: The KPG Forum
Topic: Feeling Ill
Replies: 8
Views: 20641

Re: Feeling Ill

Thank you , I have an appointment for my anaemia in January, I suppose I will start on EPO.
by JohnW99
Sun Dec 24, 2017 7:51 am
Forum: The KPG Forum
Topic: Feeling Ill
Replies: 8
Views: 20641

Feeling Ill

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 h...
by JohnW99
Thu Oct 26, 2017 9:32 pm
Forum: The KPG Forum
Topic: suggestion... how about introducing ourselves??
Replies: 946
Views: 2275076

Re: suggestion... how about introducing ourselves??

Hi my name is John, I am 51 and live in Worcestershire UK. I was diagnosed with an unidentified CKD 2 years ago following pre op checks for a minor op. My father and half of his siblings (plus his mother) all died from conditions related to CKD. I hope to find other people with the same condition, m...
by JohnW99
Thu Oct 26, 2017 9:17 pm
Forum: The KPG Forum
Topic: Unidentified Disease
Replies: 13
Views: 48126

Re: Unidentified Disease

Thank you Sue, my grandmother died in 1938, not much available in those days. We are about 50/50 too. My father was late diagnosed in 1992 and died from heart damage caused by a high Potassium level.

Hope we can learn more over the next ten years
by JohnW99
Thu Oct 26, 2017 9:13 pm
Forum: The KPG Forum
Topic: Unidentified Disease
Replies: 13
Views: 48126

Re: Unidentified Disease

Thank you JMan, I will give that a try
by JohnW99
Wed Oct 25, 2017 11:05 am
Forum: The KPG Forum
Topic: Itching
Replies: 4
Views: 13323

Re: Itching

I get itchy skin too, not sure if it is related to the CKD, I find low PH body washes help, such as Nivea Energy.
by JohnW99
Wed Oct 25, 2017 11:03 am
Forum: The KPG Forum
Topic: Unidentified Disease
Replies: 13
Views: 48126

Unidentified Disease

Hi my name is John, I suffer from an unidentifed CKD similar to Alports, i inherited it from my father, he, his mother and half of his siblings have died from complications related to the same disease. It shows itself in middle age and results in scarred kidney tissue and a slow decline in GFR; unus...