I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: miket on May 23, 2011, 08:50:01 AM
-
This isn't my first post, but it is my first about me. So when I was 19 I was diagnosed by a kidney biopsy to an auto immune disease called iga nephropathy. And when I was 27 I started dialysis, I use Peritoneal Dialysis. I went from 44 percent kidney function to 15 percent in about a years time. I blame it on the extra stresses added to my life by my fiance, haha, no just joking she is the greatest, and I am the luckiest to have her. I started dialysis in July of 2010, and my fiance, 2 brothers, mom, and dad are not my blood type. I have had two donors go all the way to the nuclear kidney testing and both failed because they didn't have strong enough kidneys due to, too much protein leakage. I am on the waiting list in Portland, Or where the list is relatively much shorter than other areas. Wish everyone the best!
Mike
-
It's great that you joinend. I trust that you will visit often and ask questions or share ideas. Together we can support each other where there are people that undersand in a a way that others will never know. :welcomesign;
-
Hi there! Welcome to the board. I'm quite the newbie myself but since I have got another of the glomerulonephritis diseases, mesangiocapillary glomerulonephritis I though I'd give you a special welcome. I'm currently trying to find out more about my disease and find more people with it.
-
Welcome and good luck!
-
Welcome miket, my husband also has iga nephropathy. You started at a very young age poor thing. We live in the UK and most of our young people on dialysis stand a good chance of getting a transplant, I hope you will be lucky to get one soon. Please keep coming back here for a chat or advise. :welcomesign;
-
Hi Mike and welcome to IHD. I'm so glad y ou introduced yourself. I hope things continue to go well for you. I live in Washington.
So Portland is not that far away.
Come here often to post and read.
Rerun, Moderator :welcomesign;
-
G'day, Mike, and :welcomesign;. :ausflag;
-
Welcome Mike. I also have IgAN and I'm now on PD. I'd be interested in how your doctors discovered your condition (i.e., what led them to do the biopsy in the first place)?
I knew something was wrong with my kidneys since my early 20s and had every conceivable test but no one was looking for IgAN back then. It took more than 30 years before one smart doctor figured out that something really was wrong and sent me to a nephrologist who had done a research fellowship at the Mayo Clinic on IgAN. My symptoms were unusual and even the neph was surprised when the results of my biopsy came back positive for IgA.
-
:waving; Iga nephropathy here, too. So glad you joined. Love the area where you live... so beautiful. I look forward to hearing more about you, your fiance, and the road to a new kidney! :clap;
-
Thank you for all the warm welcomes everyone. I look forward to reading and posting more as well. The way I got diagnosed was like this... When I was 16 I went golfing in really hot weather. I played all day and didn't really think much of hydrating, I was 16 and invincible, but I sure remember feeling like crap the next day, I had chills and my pee was coca-cola colored. I had no idea what happened to me, I ask my mom and we went to the doctors, they said that it was probably heat stroke. So I went on with my life, my next episode was when I was training to be a camp counselor at the camp I had went to since I was 14, same symptoms and the same diagnoses. It wasn't until the third time when I was 18, they figured it would be best to run some tests, I got diagnosed by a nurse practitioner, who did a little research and then sent me to get a biopsy around the age of 19.
-
Hi Mike
That's interesting...I had a few heat stroke episodes when I was young also. I never associated those with IgAN but perhaps that was another early warning sign that was missed. It's interesting that it was a nurse practitioner that considered the possibility in your case. When I was in the hospital recently to get my PD cath I found that most of the nurses had never heard of IgA Nephropathy!
-
:welcomesign; Mike!
-
Welcome to the group, Mike. Lots of good information and friends here. Glad you found us!
-
:welcomesign;
-
Wow, Miket, so young! Hope you learn from this site. I certainly have!
lmunchkin
-
Hi MikeT!!! I am so sorry to hear that you had to go on dialysis at such a young age. But... thankfully, these days we have the technology to allow you to live a full, happy life.
I wanted to tell you something that recently happened to me that might be helpful to you about the transplant issue...
When I told my 21-year-old niece that I was going to try to get on the transplant list, she immediately told me that she would happily donate a kidney. Made me cry because I never expected that. There was no hesitation on her part whatsoever. Then, a few days later, I mentioned it to my "adopted" niece's boyfriend, MikeP, who immediately told me "If she isn't a match, I will do it." I couldn't believe he was serious, but he insisted he was. (He is in his early twenties.)
The interesting thing is, when I told my nephrologist about it, asking about the risks to them, he said that even if they are not a match, they can still donate a kidney and it will go to someone else it matches, and that moves me right to the top of the list. I'm not 100% sure I am understanding all the requirements of this, but I will investigate it more as time goes on. I suggest you do the same, as there might be someone you know who can do the same thing if this is true. Good luck with this!
Anybody know anything more about this issue?
-
Yeah my husband and I are in it. Basically it is a kidney swap among 4- 6 individuals or more. In MB Canada it is called the Living Kidney Donor Exchange, anyhow this is how it works. My husband is not a match for me so his name went into a databank of others who are in the same situation so when a group of us matches up he can give his kidney to person A and person B's unmatched donor can give to me. Hope I explained this .
-
When I told my 21-year-old niece that I was going to try to get on the transplant list, she immediately told me that she would happily donate a kidney. Made me cry because I never expected that. There was no hesitation on her part whatsoever. Then, a few days later, I mentioned it to my "adopted" niece's boyfriend, MikeP, who immediately told me "If she isn't a match, I will do it." I couldn't believe he was serious, but he insisted he was. (He is in his early twenties.)
The interesting thing is, when I told my nephrologist about it, asking about the risks to them, he said that even if they are not a match, they can still donate a kidney and it will go to someone else it matches, and that moves me right to the top of the list. I'm not 100% sure I am understanding all the requirements of this, but I will investigate it more as time goes on. I suggest you do the same, as there might be someone you know who can do the same thing if this is true. Good luck with this!
Anybody know anything more about this issue?
They call it "Paired kidney donation " My transplant hospital offers this, here's a link if you will like to read more about it. http://www.cpmc.org/advanced/kidney/patients/topics/paired_kidney.html
Mike does your TX center offer this?
My friend got on the list in Oregon too because the waiting time was a whole lot less than the wait here in San Francisco, california.
Good luck to you and hope a donor is available soon!!