Thursday, December 28, 2006

We Have A Diagnosis

We got the call from the nephrologist today and there now is a name for what K is going through: IgA Nephropathy (IgAN) or Berger's Disease. And there really is nothing that can be done about it. Essentially, they don't know why or how you get this and there is no cure. It isn't an unknown disease, but it isn't that common, either--at least as far as they can tell. You can only be diagnosed with this by having a kidney biopsy and the only reason to do so is if there are other symptoms to begin with. So, many people may have this and not be at a point where they need to be seen by a doctor. The nephrologist will be seeing K every 4-6 months to make sure he isn't getting any worse, but other than that, he just has to start living a healthy life style--as we all need to do! Of course, his blood pressure needs to be kept under control and he may have to address his cholesterol, but other than those two things, it is a wait-and-see approach. There is so much that is unknown about this disease that they can't give any real answers to questions. We have no idea if things will get worse or how bad things could get. Obviously, if things deteriorate, there could be dialysis in the future, but that DEFINITELY is not a sure thing. From the research I did online, there seems to be differing opinions about this disease: some say there is NOT a hereditary factor, others say there is; some say omega-3 helps the condition, some say it doesn't; some say diet should be restricted, others say it isn't a real factor; etc. And these ALL are highly respected websites: WebMD, NIH, the Mayo Clinic, etc. The really strange part of the whole thing is the absence of 'normal' symptoms in K: the only thing he has/had as a symptom was the elevated protein in his urine. No blood in the urine, no edema, no pains, as some people have. He also seems to be older than when people are normally diagnosed with this: by the time a person is 40--and usually while in the 20s--a person has been diagnosed. All in all, the news could have been better, but it DEFINITELY could have been worse! So I guess we will just listen to his doctors (DUH!!!) and take it from here.

2 comments:

Dazd said...

At least the situation has a name. Its tough dealing with something without any clues.

Thank you for keeping us updated.

Leazwell said...

I'm sorry to hear this. Let's hope it is slothlike in its progression and that K remains symptomless.