IgA Nephropathy

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Re: IgA Nephropathy

Postby kenowbee » Fri Jan 09, 2015 2:12 am

Hi, i would like to ask, what will i do because everytime i have urinalysis there a blood in my urine, i want to work abrod but on my medical i might not pass
kenowbee
 
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Re: IgA Nephropathy

Postby Tibbs » Fri Jan 09, 2015 9:27 am

Have you been to a doctor about it?

Blood in your urine can be many things, but you must go and see your GP to have it checked out. It could be nothing and you'll be fine to work abroad, but you never know.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Tibbs
 
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Re: IgA Nephropathy

Postby chandropal » Fri May 01, 2015 4:29 pm

I am 25, male. Diagnosed with IGAN 7 days back. On prednisolone 40 mg and anti hypertensives. But I guess what I need now is more of a psychiatrist than a nephrologist. I feel like crying and crying and cryingggg...... Why???!!! Why me???!!! My parents shouldn't see me dying...not like this... :'( :'( ....Please somebody...anybody....talk to me....i beg!!!
chandropal
 
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Re: IgA Nephropathy

Postby Tibbs » Sat May 02, 2015 11:38 am

chandropal wrote:I am 25, male. Diagnosed with IGAN 7 days back. On prednisolone 40 mg and anti hypertensives. But I guess what I need now is more of a psychiatrist than a nephrologist. I feel like crying and crying and cryingggg...... Why???!!! Why me???!!! My parents shouldn't see me dying...not like this... :'( :'( ....Please somebody...anybody....talk to me....i beg!!!


First off, you have my sympathy that you've been diagnosed with this disease. I have it too and it sucks. The good news is that it's not a death sentence. It may feel that way at the moment, but when the shock wears off hopefully you'll be able to come to terms with it and live your life. I was diagnosed at almost the same age as you (a couple of years younger) and I have to say now, more than 10 years later I've never felt better. I had a transplant and my life is incredible. Dealing with a disease like this has given me a totally different, more healthy outlook on life.

It's very possible to live with renal failure very well. A transplant is a possibility, and a lot of people have a very full life on dialysis. Are you based in the UK?

It's good sometimes to have some time to feel thoroughly bad and have a good mope. Get it out of your system, but don't let it last too long. You still have a long life to lead.

Do you know what your creatinine level is or what renal failure stage you're at? This will help us to know what stage you're at and we can advise you better.

Good luck, there are lots of people here who have been in the same boat as you. You're not alone!
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Tibbs
 
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Joined: Wed Nov 30, 2011 11:59 am

Re: IgA Nephropathy

Postby wagolynn » Sat May 02, 2015 2:22 pm

Hi chandropal,
I would echo what Tibbs has said, though I have not got the same condition.

I would add:

If you feel like crying, get on with it and get it out of the way. Afterwards, you will find that nothing has changed and you need not explore that avenue again. Frustration and anger never does achieve much.

The best mental support is to learn all you can about your condition, it is the fear of the unknown that undermines you or anyone.
I am confident, that as you learn more you will begin to see this is not the end but rather a new beginning. Yes, life will have some new problems but that is life anyway, we never know what is around the next corner.

Note, Tibbs, and many others, are still enjoying their new way of life.

Best wishes.
wagolynn
 
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Re: IgA Nephropathy

Postby Tibbs » Sat May 02, 2015 5:45 pm

Indeed, 2014 was the best year of my adult life so far. 2015 is shaping up to be even better.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Tibbs
 
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Joined: Wed Nov 30, 2011 11:59 am

Re: IgA Nephropathy

Postby chandropal » Sun May 03, 2015 3:54 am

Thank you so much Tibbs and Wagolynn. I am currently based in India and my creatinine level is 1.1 gm/dl, but I haven't asked the doc what stage of renal failure does it really mean. Thing is, I had no complains regarding my health (except for fatigueness and shortness of breath, which I thought to be because of my obesity), but only because I was having frothy urine and a high BP since last year, mother insisted for a whole body check up. Thats where everything got revealed. Even now am ok, except that mental thing going on and on.

I would like to thank you people once again for taking out ypur valuable time for me. I really needed this.
chandropal
 
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Re: IgA Nephropathy

Postby chandropal » Sun May 03, 2015 4:15 am

I would also like to add that I am quite surprized why my nephrologist hasn't put me on any diet restriction(protein/potassium/phosphorus), except for a maximum of 5 gm/day salt intake and low fat diet ( maximum 5tbs/day of oil).
Also, today is the 10 th day since I started taking medicines and I have been adviced for testing my serum electrolytes, blood urea, s. creatinine and blood glucose. So, fingers crossed!
chandropal
 
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Joined: Fri May 01, 2015 3:41 pm

Re: IgA Nephropathy

Postby wagolynn » Sun May 03, 2015 5:15 pm

Hi chandropal,

The salt restriction will be for your blood pressure, no added salt, in cooking, and added when eating, is what you should aim for. 'Normal' foods, vegetables etc. contain sufficient salt to keep us healthy. If you are overweight, talk to your doctor about starting to loose some (help to get your blood pressure down), do not make changes without telling your doctor as this can effect your blood results making it more difficult to establish your present condition.

Protein restriction is likely in America but in most other countries the average diet does not contain excessive amounts of protein.
Frothy urine is likely to be protein, your kidneys should retain protein but when they are sick they let some through into your urine.

If you are still passing water, other dietary restrictions are not usually required. Phosphate, and Potassium, restrictions are usually asked for when dialysing, as dialysis is not very good at removing them.

It will take several blood tests to establish just what stage you are at.

Fatigue etc. are common symptoms, obesity will not help, see above, high blood pressure and retention of water can also cause shortness of breath. Once your present level of kidney failure is established, these things can be looked at.

Best wishes.
wagolynn
 
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Re: IgA Nephropathy-please reply to my case

Postby manohar » Fri Jul 31, 2015 12:27 pm

Hi am manohar from India,

I saw your posts in this forum.

I saw that you also have some incresed serum creatinine levels,

please share your exp.

age-33 years,
serum creatinine =1.1 mg/dl
efgr =88
serumuric acid =5.1 mg/dl
serum urea =37.1 mg/dl

I have not undergone kidney biopsy,please guide me how long we can survive still?
manohar
 
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Joined: Fri Jul 31, 2015 10:54 am

Re: IgA Nephropathy

Postby jadehill92 » Wed Jan 27, 2016 11:06 pm

Hi,

I've just found this site, and even though no one has written on this in a few years, I thought I would give it a go.

I was diagnosed with IGA 10 years ago when I was 14, completely out of the blue. I had none of the normal symptoms at all. The only thing I had was constant UTI's and on a whim my GP decided to refer me to St Marys in Paddington for a consultation and kidney biopsy (Now they're fun aren't they!) After reviewing my notes (GFR of 80) and biopsy, and thankfully ruling our SLE I was eventually diagnosed with IGA and was promptly put on Enalapril. I then became a guinea pig in a sense to try and determine which other meds I could be put on, as at that age I really was not wanting to go on steroids. So instead I was put on Irbesartan as well as Enalapril, which I reacted very badly too, the mix took my blood pressure down too low and caused me to faint...and have a creatine level of 200 (I was told by my doctor that by her standard this was a record for her-at least I will be remembered).So I was swiftly taken off irbestartan and started Candesartan, low and behold the same thing happened again, and my GFR plumetted to 64 in a space of a month. It was then agreed after another kidney biopsy to ensure the right diagnosis had happened (after 4 attempts may I add, I was my doctors first ever failed attempt-so again, she'll never forget me!) I have been left just on Enalarpil, and thankfully my kidneys have stabilized on a GFR of 66. However, the medication does leave me really tired and lethargic still and I wondered whether this happened to anyone else?

Also, being a young woman, I was wondering whether there is anyone on here that may have gone through a pregnancy whilst diagnosed with this stupid disease. It's not something which I am planning right now, but it would be nice to hear whether there are any experiences about this. I have read and been told that I will be a high risk pregnancy when I do become it, but I have also been told that I cannot become pregnant on the medication that I am on as it will harm the baby. It's something that I havent had to think about before, but now I'm getting older, I'm hoping really for some comfort to put my mind at ease that it is possible.

Sorry for rambling on. But any help or feedback would be great!

Thanks :)
jadehill92
 
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Re: IgA Nephropathy

Postby Sunny431 » Thu Feb 25, 2016 9:16 pm

Hi I'm 45 yr old who was diagnosed with iga 17 years ago. Started of dialysis this week which hurts!!
However as potassium was 7.4 when I was put on I do feel better and the cramps have eased. My kidney function fell away rapidly in the final year. I'm not sure if there is anything that can be done to preserve function but I tried changing diet, living like a monk but in the end it wasn't enough. Just found this form, wish I had earlier.
Sunny431
 
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Re: IgA Nephropathy

Postby Tibbs » Thu Feb 25, 2016 10:23 pm

Sunny431 wrote:Hi I'm 45 yr old who was diagnosed with iga 17 years ago. Started of dialysis this week which hurts!!
However as potassium was 7.4 when I was put on I do feel better and the cramps have eased. My kidney function fell away rapidly in the final year. I'm not sure if there is anything that can be done to preserve function but I tried changing diet, living like a monk but in the end it wasn't enough. Just found this form, wish I had earlier.


I was in a very similar situation - I trundled along with a gentle decline for about 8 years, then things fell very rapidly.

I was told repeatedly that aside from taking my tablets, there was nothing I could do to make my situation better or worse. The only time that changes was when I had to go onto a low potassium diet.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Tibbs
 
Posts: 1082
Joined: Wed Nov 30, 2011 11:59 am

Re: IgA Nephropathy

Postby Cyoung » Thu Feb 23, 2017 1:49 am

Partly for jadehill92... I was diagnosed with IgA at 30 and had two wonderful children after that.

I am having more difficulties now that I am 50. Beside the little flares and exhaustion I am now getting flare ups that put me in bed for 2-3 weeks (starting with the sore throat). Nephrologist feels it must be due to scarring but that is frightening. Is that common?
Cyoung
 
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