Suspected Iga nephropathy

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Suspected Iga nephropathy

Postby Rayzer88 » Sun Mar 19, 2017 8:47 pm

Hi everyone! I'm new here. My names Adam and I'm really not sure why I'm here...I'm not sure if you would say advice or more just to vent. It seems I have found a friendly community, in an area that is effecting me at the moment!

I should say a little back story. Back in 2013/14 I was diagnosed with gout having had a few bouts of agonising pain in my big toe joint. Was put on allopurinol, everything was great! Late in 2014, went away for a week, forgot the tablets but I never experienced any pain. Doctor had put the gout down to the sheer amount of drinks I had been drinking and as I had stopped them completely, coupled with being pain free I never took any more (I know, ridiculous)

Fast forward to autumn last year and i had started having flare ups, went back to the doctors...more bloods etc. Was found to have high cholesterol and blood pressure and gp suspected kidney disease. A few more blood tests later I was told in September that I would be referred to a nephrologist, who I saw Friday just gone...

To say the atmosphere in the room wasn't a positive one would be an understatement. I was naively expecting to go, be told have to take X tablet..job done. Wrong!

The consultant told me that I have chronic kidney disease and though without biopsy he couldn't say for certain, but if he had to put money on it, it would be iga nephropathy. He said he didn't know much about me but from what he had on file he could see protein had been found in my urine and he also couldn't understand why I hadn't been referred earlier. I kind of zoned out in the room a little bit but I do remember when he was talking about my kidney function that there were results of 52, 57, 52 in 2014. There were quite a few from the end of last year, one of them had spiked higher than the rest but I think the majority (certainly the last one) was 45. He said that 60 was normal (he may have said OK but I think he said normal)

He also said (from an ultrasound on my kidneys that I had last year) that there was scarring to my kidneys. I took a urine sample with me on Friday and had 5 vials of blood taken. He has told me to ring him tomorrow (Monday) morning to discuss results and see where we go from here, before seeing him again in 3 weeks.

Since Friday I have been pretty much going out of my mind. I've done some research on what I think are reputable websites and based on what I know about the condition of my kidneys so far, it almost fees like I've been given a death sentence. I should point out I'm age 29 with a 3 and a half year old son and an 11 day old daughter.

I'm confused a little about the number 60 being normal in terms of kidney function, as I saw somewhere that 90 is normal. If 90 really is normal then 45 makes my kidneys half shot already? And if what I read is correct, that puts me at stage 3a (based on November's blood test)

I really don't know what to do, I'm absolutely petrified. I feel like it's only a matter of time before my wife is going to be left to raise 2 young children alone. I have thought of very little else over the past two days and find myself welling up uncontrollably. My son is like my best friend and the last 2 nights I've been waking up 3 or 4 times with images of him waking down and aisle in a black suit.

I'm so sorry to be so morbid! I don't of anywhere else to go, or to anyone to talk to the would know anything about Kidney disease.

Has anyone else maybe had symptoms (kidney scarring, protein in urine, high bp/cholesterol and a similar kidney function reading). And if so, what is your prognosis going forward. Also, do the things I have read up about seem to be accurate?

Sorry again, and thank you so much for taking the time to read my post
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Joined: Sun Mar 19, 2017 8:21 pm

Re: Suspected Iga nephropathy

Postby Johnylefox » Sun Mar 19, 2017 9:27 pm

I was diagnosed January 2014 through biopsy although we have since identified symptoms going back to 2009.

I was given a 10% chance of kidney failure within ten years.

By January 2016 the kidneys failed.

Been on dialysis since then. Cousin is donating to me in summer.

Lost my job, my GF told me she wanted a break and we never got back.

Many people in your shoes will go for years with no problem.

The key is the amount of protein you leak in your pee. More protein more grief.

Check your finincial protection and lufe assurances, get saving.

You may be o.k. but the outcone for IGA is variable.

It ruined me but I know people who gave gone 30 years without failure.

You now have a long term but liveable condition.

Good luck.
Posts: 71
Joined: Thu Aug 07, 2014 3:57 pm

Re: Suspected Iga nephropathy

Postby AllenC » Mon Mar 20, 2017 1:14 am

Hi Adam,
I know exactly what you mean about being zoned out on hearing the news.
I've also done the "Google" thing and scared myself silly.

It's not a death sentence!

I was diagnosed with a kidney function of only 20% eighteen months ago.
It's now just9% and I started dialysis last week.
I am not planning my funeral anytime soon.

Yes, it's a long term disease and needs managing correctly.....but certainly not the end of the world.

At 45% you have a long way to go before dialysis.
Worrying and sleepiness nights does nothing to improve your health.

You just have to accept and come to terms with the situation.
People can live for many years on dialysis and I intend to be one of them.
Of course there may also be the option of a transplant.

My advice:
Listen carefully to your doctors and follow their advice and treatment.
Don't dwell on the negative....get out there and enjoy life with your family.
Hope I've helped...
Posts: 6
Joined: Mon Dec 19, 2016 1:41 am

Re: Suspected Iga nephropathy

Postby wagolynn » Mon Mar 20, 2017 4:40 pm

Well said AllenC.

That's good advice Rayzer88, if you have kidney failure no amount of worrying is going to change it.

You may never actually get to the point of them failing, go to the KPG home page and start reading to get some background information.

Be very critical about stuff you find on the internet, much of it is crazy.

Best wishes.
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Joined: Thu May 23, 2013 2:49 pm

Re: Suspected Iga nephropathy

Postby Rayzer88 » Tue Mar 21, 2017 12:50 pm

Thanks for your kind replies so far!

I spoke to the consultant yesterday and since November my function has dropped from 45 to 38. He managed to get me rushed in for a biopsy

Currently sat in the hospital bed waiting for a second attempt. They struggled to find a route in when I first went down. I heard them mention hydronephrosis

Atm everything is still uncertain for me. Trying to be positive but I'm struggling every time I think of my little boy :(

Thanks again,
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Joined: Sun Mar 19, 2017 8:21 pm

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