I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: mariannas on July 20, 2007, 06:25:33 AM
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Hello everyone!
My name is Marianna and my story goes waaaaaaay back so I'll try to give you the condensed version.
I am now 25, but when I was born I had just a wee bit of renal function. I received my transplant from my mother in 1984 and I am proud to say that while it's function is petering out, it is still working 22 years later. I have been very, very lucky and have had very few issues with my transplant - evidently my mom and I were a great match!
Unfortunately, about 3 years ago my nephrologist noticed my kidney function declining. I had always had practically perfect numbers so when my creatnine started creeping up, it was very distressing. I'm now at 5.7, but it has been a rocky month!
On June 1, I went in to have my PD catheter put in place. Unfortunately the surgeon encountered a lot of scar tissue and while clearing it out, severed my ureter. As I was recovering I noticed that there was quite a bit of leakage coming from my catheter incision and while I kept telling my doctors, they insisted leakage was normal. Two weeks later I went to the ER because I hadn't been able to keep food down all day. I was terribly dehydrated and my creatnine was up to over 20! Not really knowing what to do, the ER docs gave me a bunch of fluids and sent me home for the night. My nephrologist called the next morning and explained that the rapid amount of decline in my kidney function just didn't seem right (since it had been progressing so steadily before) and that he was going to schedule some tests for me to figure out what was going on. A nuclear lab study showed that my ureter had indeed been severed and the reason I hadn't noticed was because, though infrequently, I was still able to urinate.
That afternoon I was admitted to the hospital and put under twice. Once to find out more about what was going on and again to do the actual repairs. The doctor who performed the repair was a transplant urologist and an absolutely amazing guy. Both he and my nephrologist were horrified that this had happened since it is something that should have been so preventable with additional tests. Unfortunately, the original surgeon who put in the PD catheter somehow thought that my anatomy would be the same as a non-transplant patient and did not look for my ureter to be in a different location.
After my surgery, it was explained to me that amazingly, my native kidneys were still functioning at a very low level - hence the ability to urinate despite the severed ureter. I'm so thankful that my body made us aware of the problem as I had been in the process of becoming septic and could have very well met a worse fate if I hadn't been treated.
A month later I am still recovering. The steri-strips are falling off and my PD catheter is thankfully flushing. We are taking my case month by month as to when I will actually start PD. Until I start I will get the bi-weekly flushes and heparin to prevent fibrin build-up. My numbers are good with my creatnine and BUN high, but my phosphorus is perfectly normal. I have to admit that that is most likely because at 5'0 I'm pretty tiny and don't eat enough to even meet the daily limits for any of my off-limits foods. At this point, my doctor just wants me to eat so that I've got some weight on me for my next transplant.
Speaking of which...I am currently listed at Stanford University in California. While I live in Seattle, I picked Stanford based on their success rate and their willingness to talk about both paired exchange and IvIg. After 22 years it turns out that I am highly sensitized so finding a match may take longer than I had initially hoped. I have a great support team and several people in my life have stepped up to be tested. So far my dad and my boyfriend have passed the first phases, but their are so many more steps to go through.
I have been lurking on this board for quite awhile and I am excited to have found a place where I can share my successes as well as vent about my fears and frustrations. I can't wait to *meet* more of you!!!
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Hello and :welcomesign;
Great intro.
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Outstanding introduction marrianas,
You seem to be very upbeat about all you've been through. I hope your Dad or your Boyfriend become a perfect match and you get another 22 years or more from one of their kidneys.
Thanks for joining our great site and supportive family.
Sluff/ Admin
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Welcome aboard and thanks for the great story. I trust that everything will work out and you will find a match soon. :welcomesign;
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:welcomesign; Glad you found this site, it has a lot of really useful information and wonderful people who are very supportive. I hope that everything goes great for you with the search for a new kidney!
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:waving; Hi mariannas,
Sorry you had to go through so much due to what seems to be an easily avoidable problem!
That's so wonderful that you had so many years with your mom's kidney, I hope you have many more with a new one.
Welcome to IHD!
Karol
okarol/moderator
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Welcome! Best of luck on your search for a new kidney. If you need to rant about that (or anything else.), come find us, we'll be here! ;D
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Welcome to the boards. I am sure you will have stories to tell and questions to ask as you progress through everything.
kitkatz,moderator
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Welcome Marianna, good to have you aboard.
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Hey Marianna!
It's so nice to see that there's someone our age going through this too! My boyfriend, Wade, has kidney failure due to Goodpasture's Syndrome, and it's really hard to get our friends to understand whats going on!
We are new here (this week!) so i'm glad to have a new buddy! That's wonderful about your boyfriend passing the first stage of being a donor. Unfortunately, i'm not even a blood type match for Wade, so when he is able to get his new kidney, it can't come from me.
Glad you're here!
Kari
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Welcome i hope you enjoy this site. You will find all kinds of information here.
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:welcomesign;
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Welcome to the IHD Family!
Hope the transplant comes through for you.