I don't really know where to begin. With the diagnosis? With the first furrowed brow of a GP which left me wondering in the car on the way home whether there might be something wrong? Further back than that to when I was 12 (the point at which they think my kidneys began to suffer failure)?
Or do I start with who I am, what I look like? Or who I was and what I used to look like before kidney disease whispered its cursed spell and organised my vital organs into a military coup?
All of these seem like logical starting points and yet to begin with any of them seems like trying to place order on a reality that is chaotic. The story of my life has been hijacked by an illness called IgA Nephropathy. That's as much as you need to know for now, and the posts that follow will consist of the random thoughts and occasional moments of clarity I have entertained in the nine months since I started a little treatment they call dialysis.
The mic, it turns out, is very much on. Welcome.
ReplyDeleteHello
ReplyDeleteI found your post re the article in the Irish Times (I google every month or so to see if there is any new news/ideas out there...besides fish oil!) You are correct about the isolation of being sick in your 20's. I was recently diagnosed with IGA - my kidney function is a bit better, beginning of stage 3. I am 26 years old and spent a year going to doctors, who insisted nothing was wrong...because my GFR was above 60 and my symptoms were never consistent...until of course a nasty sinus infection sent me to the Emergency Room, I was convinced my kidneys were actually failing. The biopsy showed it was aggressive IGA for a bit. I live in the states and do not know much about living on dialysis, but I probably will someday. My life has not changed too much like you mentioned in your article before you were on dialysis. Although, monthly/bi-monthly visits to the doctor and of course meds and blood pressure every morning, sure do you make you feel old before your time!
I wish you the best with your health and your sanity :) I look forward to reading your blog and if by chance I find anything useful, I will delightfully pass along.
Katie
Hi Katie - I'm so sorry to hear you have IgA too. Do they know how yours happened? They think mine is as a result of a throat infection when I was 12 and it just didn't start to really show itself until I was 25. I say to my mother now that I should have been a rebellious, crazy teenager - drink, drugs, teen pregnancy, the lot - cos it wouldn't have made any difference - I was already seriously ill! (She doesn't agree).
ReplyDeleteI hope they manage to maintain your kidneys for a number of years to come - and that by the time you get on dialysis it is a better, more sophisticated treatment they it currently is that doesn't take 8 hours every night. Who knows, maybe they'll even stumble across a cure for kidney disease in the near future.
Keep in touch and let me know how you're getting on - or if you want to ask me anything, feel free. I'm an open book with no qualms about giving anyone who asks my full medical history!
there is a link between gluten sensitivity and iga nephropathy (google it) . perhaps toast murdered yo kidneys.
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