I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Ninanna on September 05, 2013, 04:51:15 PM
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I was diagnosed with chronic kidney disease in 2007 when I was 22. Not going to lie, when the doctor told me, it pretty much went in one ear and out the other. I had no idea what chronic disease even meant, and when you are 22, you aren't supposed to be majorly sick, right? It wasn't until I went home and started looking up information that it finally sunk in. You know you are in trouble when your disease has numbered stages lol. I soon after had a kidney biopsy and it was discovered that my decreased kidney function was caused by something called IgA Nephropathy. Virtually nothing is known about the pathology of this condition, but at least it has a name, right?!
IgA Nephropathy is known to sometimes progress slow, so I hoped that that would be the case for me. Since I don't believe in God, instead of praying at night when I went to bed to get better I would just hope that a benevolent alien would come along and cure me lol. :urcrazy; Well needless to say that didn't happen, and in 2011, my kidney function was already at 25%. My nephro started talking about options, so I ended up at NY Presbyterian for a pre-transplant eval. The eval went well, however my kidney function was too high to accrue time on the list and everyone seemed to think that it was too early anyways and that I was doing just fine. I am lucky that I have had virtually no symptoms other than I get tired more easily than I used too and after about 5 hours of sleep I usually wake up feeling like my bladder is about to burst. The only medications I take are over the counter vitamins and 5 mg of Lisinopril.
So the next couple years I just chill out, waiting for my function to get worse. At least I found out that my mother was indeed a match for transplant. Finally at the end of 2012 my function dropped to 17%. Now I can get listed, right?! Except during this time I had moved, so I had to start the whole process over again at Johns Hopkins. Between getting an appointment to get the eval and getting all the testing done, I was finally able to get listed 6 months after starting the process. A few weeks ago my mother was cleared to donate, and that is scheduled for the 4th of November! I am counting down the days, 60 to be exact. ;D
I came across this sight because dialysis scares the ever living crap out of me. Unfortunately in the last month my function has dropped to 13% and my nephro has insisted on me having these once a week Iron infusions through an IV. I get them at a dialysis access center. After seeing how incompetent the people are who perform SURGERY on people to fix dialysis access sites, it looks like I have every reason to be scared lol. The first time I get the treatment, no one really knew how to put an IV in, so I felt like they were experimenting on me. On top of that, the idiot didn't clamp the end of the line down, so when he finally did get it in, blood was just pouring out of the line onto the chair and all over me. Once they canceled my appointment because, "we have no one here to put an IV in". Shouldn't that be the most basic job skill to work there?! And the one guy who actually knows how to do it and do it well, NEVER wears gloves.
Anyways, that's enough about my disease, here is some info about who I actually am! My name is Holly, I am 28 years old, and I live in Baltimore, MD. I was born and raised in Southern Iowa, and went to college at Iowa State University where I got a BS in Chemical Engineering. In 2009, I packed up my little car with my two cats (Marvin and Mister) and headed East! I lived in Jersey for 4 years. It wasn't bad, but I was excited to go when I moved to Baltimore last year. I work at a small stem cell company in Maryland, and I will never forget my first day, because it was the day Hurricane Sandy hit (I literally got out of Jersey just in the nick of time lol). At this company I work in their bio-surgery manufacturing department. For any of you with diabetic foot ulcers out there, we just got preliminary results that our product closes 60% of chronic wounds vs the 20% for the standard of care! (Sorry for the plug but I thought it was exciting news, PM me if you would like to see the press release!) Some day I hope to be able to work on solving kidney problems, but we shall see. In my spare time I love to read, mostly science fiction / fantasy, but there isn't must I won't read. I also like to play video games, in particular World of Warcraft. I used to play tennis, but I don't have the energy for that anymore. If it's allowed after my transplant, I will start playing again.
Anywaaaaays, I think I've rambled on enough. Sorry for the long post, but I am excited to join this community!
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Hi Ninanna and welcome to IHD. I'm sorry you have to be coping with kidney disease at such a young age, but you'll find other young people here, as well as other people with IgA Nephropathy.
:welcomesign;
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Hi Holly. Welcome to the community. I hope your transplant goes real well.
:welcomesign;
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instead of praying at night when I went to bed to get better I would just hope that a benevolent alien would come along and cure me lol. :urcrazy;
You too? I thought I was the only one! Loved this line!
Thanks for sharing your story! And what a story and interesting person you are! Great to have you here and if you get any signals from space, let me know! :2thumbsup;
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I can't believe that your IV iron treatment went so badly! I'm really astonished; putting in an IV is fairly basic stuff.
It sounds like you will be lucky enough to bypass dialysis altogether. Good luck with your transplant! That's really exciting stuff. I hope you'll get back to playing tennis very soon.
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Thanks for the welcome everyone! And Ukrainian, I will definitely let you know if I make contact haha ;D
Here is a picture of me at work. I figure there can't be too many better places to work than a cleanroom while being on immunosuppressant drugs lol.
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Looks like the suits they wear around here when they find a meth lab :lol;
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:welcomesign; Holly! Very exciting about the transplant; hope the time whizzes by for you (but not for me, I'm not getting any younger ... )!
;D