Greetings from St. Louis...

[Robby712]

Hello all,

Well...where to begin?  I'm a 29 yr old guy from St. Louis, Mo.  Also a full time ceramics teacher at a local high school.  I guess this is the part where I tell my "How I ended up on dialysis story" so here goes:

I was born with post urethral valves.  I was fitted with a leg graft in preparation for dialysis as an infant.  Somehow, I made it 17 years on a combined 13% kidney function.  I spent 3/4 of my senior year of high school at home or in the hospital because I had reached the point where 13% function just wasn't cutting it anymore so we went ahead with the transplant prep.  Both Parents were both suitable donors at the time.  My Mother Matched A+ and my father was an O.  At the time we went with my father with the assumption if and when anything went wrong with the transplant my mother would be next in line to donate.  I kept my transplanted kidney from 1996-2004.  The reasons for failure were never fully explained or disclosed to me.  My bloodpressure steadlily rose for about a year but the docs could never agree if the BP caused the kidney failure or if the kidney failure caused the high BP.  While all of this was going on my younger sister was in a serious car accident and spent 6 months in the hospital and almost a full year in a wheel chair...so I was trying to help take care of her at the same time. 

Anyway, as full failure approached we prepared to retest my mom for my next transplant.  A mere technicality in my mind.  Well, turns out we no longer matched.  I was told "antibodies" built up in my system from my previous transplant and a transplant from my mother was no longer a possibility.  (Several years later I was told that these same antibodies would make it even more difficult to find a match on the transplant list).  To this day I never have received a valid or thourough explanation on how this occurred.  Hindsight being 20/20 if we would have went with my mom as a donor at the time and waited to use my dad as a backup chances are him being a universal donor he would have still been a match.

So here I am on my 4th year of hemodialysis.  I spent 2 years driving 45 minutes away from my home 3 X a week.  I went from spending about $100 a month on gas at the time to $250.  This made me JUMP at the chance when they offered home dialysis with NxStage.  2-2:30 hours a night instead of 3:45?  Whatever time of the day I wanted?  Saving $150 a month on gas?  I'm IN!!! 

So I spent my 3rd year at home...dallying 6x a week.  What a grind.  I ended up having to dialyze 2:45 a night + almost an hour of setup/breakdown time.  (Which they conveniently don't mention when trying to sell you on NxStage)  So yes, the post-treatment hangover was less prevalent, and yes I had more energy, but almost no time to do anything with it since I was spending about 4 hours a night doing dialysis related junk.

So currently I am back in center at a new location that is only about 15 minutes from house.  I haven't done the math yet, but with the increase in gas prices over the last year or two I might still be out that $150 a month.

My options for a new kidney remain waiting on the list, and recently I've been told I could try some sort of desensitization treatment with my mother or any other willing donor.  However, again due to the antibodies the chances of success are less than optimal. 

So there you have it.  In closing I'd like to say thanks to the creators of this space.  What a cool idea.

Thanks for reading,

Chris

[paris]

  Chris, glad you found us.  I lived in St.Louis for years (well, St.Peters, really) and still miss it.  You will find there are lots of us here with high antibodies and the frustration it presents with tranplants.  And there are also some great success here with plasmapheresis and desensitizing.  You wrote a great intro.  There is so much information here and especially lots of support.  Looking forward to reading more of your posts.

[Romona]

 
Hi Chris.

[G]

  aboard Chris! I'm new here also. As of two days ago actually. Very cool outlet/resource for everyone. You mentioned your transportation costs. If you haven't already, you may want to look into your local public transportation. I'm in Oregon and qualified for a monthly lift pass. $48 a month gets me to and from dialysis 3X a week and they come right to my door! Plus, if I schedule soon enough they will take me anywhere else I want to go! Can't beat the price and my wife likes that she doesn't have to get up at 4:AM any more! C-ya round!
G

[Bajanne]

welcome to our community!  So glad that you found us (and we found you!)  This is just the place to be if you are facing what i call the renal challenge.  You will find that this is far more than a forum.  It is also a wonderful international support community.  It is a place to vent, rant, rave, or rage when you need to.  In fact, this has become, for many of us, a real family.    there is lots of information here, and also lots of fun (there are some crazy people here and of course, I am not one).  So we expect you to read and read and read, but also post and post and post.  Let us know what is happening with you.  We also have lots of people who are here because of their loved one, so your wife can also join us.
Hope everything works out well for your transportation, etc.


Bajanne, Moderator

[monrein]

Welcome to IHD Chris.  Very informative intro and I'm glad you found us.  Post often.

[Sluff]

Awesome introduction Chris,

Thanks for joining ihatedialysis.com. I think most people enjoy Nxstage but I can sure understand your point about setup and tear down.
Have you seen our sister site www.ilovenxstage.com  The creator of these wonderful site really swore by Nxstage until his passing March 2nd 2007. He claimed he felt like he had a lot more freedom. Apparently it's not for everyone. Feel free to share stories and experiences and post as often as you like.

Sluff/Admin

[kitkatz]

Welcome to the site!  Another teacher is on board.  I teach sixth grade special education.  I love to see electives being taught at the high school level. I think California forgot electives in the mad rush for reading and math.  Anyway welcome!

kitkatz,moderator