I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: T_wants2_pee_again on October 22, 2008, 04:00:52 PM
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Hi all. I am very excited to find this site. I did not know anything like this was around. I think it will help a lot to talk to all of you.
Well, my story is kind of long but I will do my best to keep it short and (bitter)sweat. In March of 2007 I became ill. I was only 21 years old, going to school full time and working two part time jobs plus keeping up a socail life. I just figured I got the flu from one of the kids at my job. It had been 5 days and I was only getting worse, becoming jaundice and extreme stomach pain. My mom finally talked me into going to the ER. I went to Anderson ER ( a local hospital) and before I really knew what was going on I heard the doctor saying someone get Barnes Hospital on the phone and see if they will admit her. Even though Barnes is only about 45 min away(in St Louis) I thought wow that's a big name hospital what is going on? Come to find out after about a million doctors and test I had Hemolytic Uremic Syndrome(HUS). Because of this blood disorder my kidneys shut down. The doctors are still not sure what caused it but are continually researching to find out why. I was in the hospital for 6 weeks receiving blood and platelets and dialysis. I recently found out that because of this blood disorder and a deficiency in a gene I can not receive a transplant. Well, being 23 that is a total bummer to be looking at dialysis for the rest of my life. Most days I can deal with it and carry on like normal but everyone has their bad days, so when I found this site where I can talk to people who understand I was TOTALLY excited.
That's my "kidney issue" story. As, for just about me. I am recently engaged and thrilled. Still going to school to be a special education teacher and trying to work at Dairy Queen. I love being outdoors and playing sports, but I HATE the restriction dialysis puts on life. Talk to you all soon
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Hi T. :welcomesign; to IHD and thanks for your great Intro. I'm so sorry that you're facing all this crap at your age (not that it's good at any age but you know what I mean). I was 26 when I first started D.
You sound as though you have a great attitude and it's exciting that you're engaged. Congratulations.
I'm glad that you found us too and I hope you'll post often.
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:welcomesign; T_wants2_pee_again (love the name). So happy you found us and we can't wait to hear more from you. :cuddle;
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Hi all. I am very excited to find this site. I did not know anything like this was around. I think it will help a lot to talk to all of you.
Well, my story is kind of long but I will do my best to keep it short and (bitter)sweat. In March of 2007 I became ill. I was only 21 years old, going to school full time and working two part time jobs plus keeping up a socail life. I just figured I got the flu from one of the kids at my job. It had been 5 days and I was only getting worse, becoming jaundice and extreme stomach pain. My mom finally talked me into going to the ER. I went to Anderson ER ( a local hospital) and before I really knew what was going on I heard the doctor saying someone get Barnes Hospital on the phone and see if they will admit her. Even though Barnes is only about 45 min away(in St Louis) I thought wow that's a big name hospital what is going on? Come to find out after about a million doctors and test I had Hemolytic Uremic Syndrome(HUS). Because of this blood disorder my kidneys shut down. The doctors are still not sure what caused it but are continually researching to find out why. I was in the hospital for 6 weeks receiving blood and platelets and dialysis. I recently found out that because of this blood disorder and a deficiency in a gene I can not receive a transplant. Well, being 23 that is a total bummer to be looking at dialysis for the rest of my life. Most days I can deal with it and carry on like normal but everyone has their bad days, so when I found this site where I can talk to people who understand I was TOTALLY excited.
That's my "kidney issue" story. As, for just about me. I am recently engaged and thrilled. Still going to school to be a special education teacher and trying to work at Dairy Queen. I love being outdoors and playing sports, but I HATE the restriction dialysis puts on life. Talk to you all soon
Hi T. Welcome to the club and the site. I have been diagnosed with ESRD. and ill end my dialysis in January. The restriction along with other maladies of old age and personal beliefs are my reasoning At your age I would probably make a different decision
I wish you the best
Southyard
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Hi T.. *hugs* what a horrible surprise to have that just fall on you in the absolute prime of your life with everything ahead of you.. specially with the blood issue aparently disallowing a transplant... I think though you should hold out some hope - the way research is going and with the recent increase in stuff like ABD incompatable transplants, maybe they will find a way to work around your issue too... or perhaps the stem cell growing "own" kidneys will be for you down the track. We can but only hope.
Still, it's great you're trying to focus on the positive things in your life like work, school and your engagement (congratulations!!) - having a loving and supportive family & partner around you is a really big help and will be so important for those times when it all seems like too much to bear.
Again.. welcome to IHD!! :cuddle;
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hello! I wants to pee again too
so glad to know you
and please feel free to post about anything
are you back in school
do you know about noctural dialysis
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:welcomesign; "T" So glad you found this site. It is a great place to rant, vent, cry and then laugh with others who truly know what you are going through. I hate that this all happened in your 20's. Some things just don't seem fair. I lived in St.Louis for many years and know Barnes Hospital. It is one of the best. Congratulations on your engagement! How exciting. :clap; Looking forward to reading more posts from you. :grouphug;
paris, Moderator
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Hi "T" and welcome to IHD. I love your name. I'm so sorry that you have no hope for a transplant. My advice is to wait a few years and check into it again. Things change really fast on the transplant discoveries. I was only 24 when I was "surprised" as you were with dialysis. I didn't have any other complications, just kidney failure so I got a transplant right away. It lasted 17 years and I've been back on dialysis for 3 years and don't really expect another transplant.
I'm looking forward to your posts.
Rerun~
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:welcomesign;
Congratulations :flower; on your engagement.
I am so glad you found this site and I was going to say what RM did say...hopefully research will have an aahaa moment and find an answer for you..I believe it is out there.
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:welcomesign; T
congrats on the engagement
bummer on the no transplant
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Welcome "T", good to have you aboard.
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:welcomesign; :welcomesign; glad you found us . carol
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:welcomesign; sweet T.
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:waving; :welcomesign;
Wow what a heartbreaking read that was :-(
But congrats on your engagement :2thumbsup; :clap;.
P&K
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:welcomesign; to IHD *T* You sound like a really neat person that I am sure everyone is going to enjoy getting to know better! Congrats on your engagement!!!! :clap;
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:waving; Welcome T,
Wow....no sign of a transplant. Give it a few years and maybe they will figure out a way to make a transplant work for you.
I was 21 when my kidneys failed. My transplant lasted for a little over 17 years. Now I am back on dialysis. We are here for you! :cuddle;
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Good to have you here!
:beer1;
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Hi T welcome to IHD we look forward to your posts
Boxman, Moderator
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:welcomesign; :welcomesign; :welcomesign; :welcomesign;
Hi! I was just 21 when I found out I had ESRD. Now, I'm going to be 22 tomorrow. This is a great site!!
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:welcomesign; this is a fantastic place to land. read, post and make friends. find answers to questions, rant, rave and let it all out. we all understand.
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:welcomesign; :welcomesign; :welcomesign; :welcomesign;
Hi! I was just 21 when I found out I had ESRD. Now, I'm going to be 22 tomorrow. This is a great site!!
:birthday; :birthday; :birthday; :birthday; Jess!!!!!! We have birthdays in the same month! My birthday is the 29th but I will be 39! ::) Oh, to be 22 again!!! :bandance;
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:welcomesign;
I hope someday you will be able to get a transplant, but for now welcome aboard. :grouphug;
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One more thing, Congratulations on your engagement. :bestwishes;
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Welcome!
-Devon
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Welcome to our community! As you have seen, this is just the place for anyone facing what you are facing. here you have found a genuine family :grouphug; - lots of caring and sharing people, loads of information, much support, and even barrels of fun (check the Off-topic section!). Above all, as some of the others have said, a place where you can rant, and rage, and vent, and rave whenever you need to, knowing that we really UNDERSTAND! So keep reading and keep posting.
Looking forward to hearing from you.. :flower;
Bajanne, Moderator
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There is always hope & new discoveries come along all the time.
:welcomesign;
:birthday; jess & tyny
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:welcomesign; to IHD T
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:welcomesign;
and :bandance; :bandance; :bandance; :bandance; :bandance;
on your engagement