I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: dachsiegrrl on June 18, 2009, 02:57:08 PM
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So hello, new member here from Ohio.
Diagnosed with FSGS at age 16, first went on dialysis, first in-center HD then home PD, at at 23 (1997) and got transplant in June of that year.
Went back on dialysis about a year later; attempted to go back on PD but couldn't do it, even tho I'd never had peritonitis or anything like that. Went back in in-center HD while finishing up graduate degree and working.
In the meantime, kept working and married my husband in September 2001...still can't figure out why he has hung around for all of this. ;)
Got second transplant (from a diabetic cadaveric donor...yayyy) in April 2002, and went back on HD in October or so of that year.
Started training for home nocturnal hemodialysis in spring 2003 and returned for a second graduate degree in fall 2004.
During summer 2005, I read a CNN article about the NxStage machine in which Dr. Kraus at IU was interviewed and called them to find out more. I was able to get into their training program in a fairly short amount of time and have been dialyzing 6 days a week at home ever since.
Now, we're hoping to try and get pregnant, for which we will go from about 1.5 - 1.75 hours six days a week of treatment to 2 - 2.5 hours seven days a week. We're hopeful; we'll see. Meanwhile, I'm halfheartedly listed for a third transplant, altho I'm told that my sensitivity is very high and it is unlikely that I'll be matched. Also, FSGS recurred in both transplants, so my neprhologist isn't optimistic about the chances of a third transplant, at least at this point.
So that's the kidney story...over time, I'm sure I'll bore you all with details of other health issues such as brain tumor, gall bladder, and the bad bones thanks to 12+ years of dialysis.
Other than that, I have three great miniature wirehaired dachshunds; you can see Gracie in my profile pic. Hobbies, which come in useful during treatments, include cross stitching, crochet, and knitting, among others. I work as an instructional designer, and I'm lucky that my company is telecommuter-friendly, which has been really helpful with my home treatments.
So sorry for the lo-o-o-o-o-o-ong post, and I look forward to getting to know everyone!
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:waving; Hello and Welcome!
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:welcomesign;
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:welcomesign; Glad you found us here.
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Glad to meet you. By now you are probably and expert on NxStage! :2thumbsup;
Welcome to a great group. Post often. I'm looking forward to getting to know you better.
Aleta
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So thank you, everyone!
Looking forward to getting to know everyone.
Especially, I'd love to hear about anyone's experiences with pregnancy and dialysis. I'm so both excited and apprehensive about this quest, and I really feel like I'm "Steel Magnolias" Shelby, getting advice on both sides of the issue. I think the best advice is along the lines of "I'd rather have 30 minutes of wonderful than a lifetime of nothing special."
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Glad to meet you. By now you are probably and expert on NxStage! :2thumbsup;
Welcome to a great group. Post often. I'm looking forward to getting to know you better.
Aleta
I don't know if I'd call myself an "expert," but I can certainly share my experiences on my particular machine. And I can, of course, share my completely biased opinion that my specific machine is just about the best thing to come along since sliced bread. Don't get me wrong, there are some things upon which I'd improve, but my view is: if I have to be on dialysis for the rest of my life (and that is a distinct possibility), this is the way to do it. And Dr. Kraus and all the IU staff are absolute angels. They are angels straight from heaven.
props to any Raising Arizona people who recognize that quote. :)
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Welcome Dachsiegrrl, good to have you aboard.
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:welcomesign; dachsiegrrl. I love dachshunds. Wow, you have been through the ringer haven't you. You have found a great place that will offer all kinds of information and support and I know we can learn a thing or two from you. Keep posting. :cuddle;
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:welcomesign;
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:welcomesign;
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Welcome to IHD. Wow, you've been through a lot. Good luck with the pregnancy quest - at least you'll have fun trying eh? It sounds like you can do anything! Good on you.