He was on the ace inhibitor Enalapril but had to come off it recently because of high blood potassium levels. His blood pressure has not been high since he came off that which is good.

No kidney disease runs in our family but we have been told that all our other children are potentially at risk and we monitor them regularly. We have not had genetic testing yet but we did join a genetic study program which would tell us if we are at risk and we have not heard anything yet from them.

William only ever had mild eczema before he was diagnosed and as soon as he went on immune suppressing drugs it disappeared. He’s still on those drugs so we haven’t seen any more eczema on him. It runs in our family and one of our other children has quite bad eczema and another skin condition called oral allergy syndrome.

Ah – I remember having a conversation just like that with a geneticist about 7 years ago
I cried for days! We never went back to see him – switched to another hospital instead and found someone much more supportive!

My BIL was in kidney failure for several years and AFAIK the doctors never really figured out what might have caused it. From diagnosis to needing dialysis was perhaps 5 years. My sister (his wife) donated a kidney to him in November and so far he is doing well. There are no guarantees as to his long-term prognosis. I believe they told her that IF the transplant worked it MIGHT buy him up to 10 years of relatively healthy life. Their attitude was if they got ‘only’ 10 years, that would see their kids into college and some degree of independence . . . I suspect the doctors are fairly convinced that the problem will return. We just have to hope that it will be later rather than sooner.

I honestly can’t imagine what you are going through right now, but I wish you much strength!