IGA

[Elly50]

Hi I have been told this year that I have IgA just wondered if anyone one else out there has this.  Also I have had to have a transfusion back in May as my HB was low, now I am worried about the effect it will have on any new transplant.
I had a transplant in 06 but it has failed now in 2011, I think that having got blood poisoning back in 2010 might have helped it to fail rather than just IgA ?

I am feeling low about being back on heamo dialysis plus having problems when taking fluid off, when I was on dialysis before I was lucky to be able to drink pretty much what I liked, now I am finding it very hard to cope with not drinking much. It is all I think about  Now back on blood pressure tablets as just cant get to my dry weight.
Is there anyone else having such problems, I am still managing to work though my centre is not making it easy as having to come off late so not much recovery time ! Wishes to all out there xx

[Brightsky69]

I have IGA and just got a transplant about 8 months ago. This is my 2nd one. I've also had a few blood transfusions and it didn't seem to hinder my chances for a new transplant. I do have 1 antibody with this transplant....but it's not giving me any problems. Knock on wood! 
I was on PD for about 2 years before I got my 2nd transplant. They told me it would be a 5 to 7 year wait. I guess that is the standard answer. Plus I am O+ blood type.
My creatinine is stable at 2.0

I also found it hard to work while on dialysis but I managed. I was very close to going out on disability but the transplant happened before all the paperwork got approved.

I hope things get better for you very soon.

[Willis]

I'm 58 and I've had IgA since my early twenties (an assumption) but it wasn't diagnosed positively until I had a biopsy in 2004. Looking back over the past decades I realize now I had all the symptoms and even had several invasive kidney tests that were always negative. Of course not much about IgA was known back then. I was treated for all kinds of things, some of which were certainly harmful to my kidneys and made things worse (like NSAIDS and antihistimines in heavy doses). But I obviously had a slow-progression version of the disease. How old are you? Sometimes IgA can progress to ESRD in just 5-7 years.

Once I learned I had IgA I was tested regularly and my creatinine levels were steady in the 4s. My HGB was low for years but I didn't have insurance and couldn't afford EPO so was tired most of time. I started exercising a LOT and lost over 60 lbs (to date) and it may not have made feel better, but it at least kept me stable. But in Dec 2010 the level all of a sudden started to jump about a point per month and I finally started CCPD in May 2011 with a creatinine level over 11. I felt very healthy and was very active physically right until my creatinine got to about 9 or so. Then it was downhill fast. Now, on PD, I'm starting to feel a lot better and have about 75% of my stamina and strength back. My labs are all now mostly in the proper ranges. And my last HGB was actually 13+.

I know it's hard to get motivated when you feel washed out after treatment but I'm convinced that regular intensive exercise is necessary to keep our body strength up given all the attacks coming at it from every other direction.

Best of luck.

 

 

[pagandialysis]

I was diagnosed with IgA last year though they think I have had since I was born. After dialysis treatments all I do is go home and sleep. Now the days that I am not on dialysis I do try and devote time to exercising. I have noticed that since I started exercising I have felt better and better after treatments and the day after. Originally I started lifting very lite free weights to try and increase the size of my Fistula. Even if your tired the next day, try to do something. Trust me, you patience and persistence will be rewarded.

My HB is kinda low as well. I have just started researching all of these "renal protein drinks" I keep hearing about. Eventually Nepro is suppose to send me a qupon for a free four pack.

I hope things get better for you.

[Riki]

I don't know what IGA is... here, it used to be a grocery store

[pagandialysis]

Well I assume we are talking about IgA Nephropathy which is also known as Berger’s Disease.

[tyefly]

I was told that is what killed my kidneys....  I have never heard of IgA..... or for that matter dialysis.... well I am not sure why or how but I am dealing with it....For me  I cant sit long....I have to walk all day long and keep moving...  I dialysis at night now and now I am much better.... The hardest part of dialysis for me was to sit... many times when I was on short daily at home I would just stand...sometimes I stood the whole time.... When I first started in center I keep standing up and I was told that I couldnt do that... they are crazy ...  I cant understand why I couldnt stand...  Its good that I was only in center for three months....  I think they were going to kick me out for standing too much....  LOL   

[pureserenity]

I have IgA and have just started dialysis, i was diagnosed in may 2010 when my kidney function was about 30%, it was normal the year before. So I have progressed very rapidly indeed.
I had a neckline inserted less than a week ago and had my second session of dialysis yesterday...I'm assured it will make me feel tons better than i do. I am already not taking as many anti sickness tablets
x