Kidneyless Half My Life and Kinda Sorta Hating It!

[alrightstill]

Hello all!  I'm 26, female and have been suffering ESRD since I was 12, in 1992.  Like EpoMan, my kidneys just suddenly failed out of the blue.  I remember it so vividly.  It was summer vacation, and I was tired, REALLY tired.  I didn't have much of an appetite and I started slurring my words.  My mom even yelled at me, she thought I was playing a trick on her and I was sent to my room.  The next day, my brother was playing Super Mario and kept asking me if I wanted to play.. I kept saying no.  He said, "Mom, I think something is really wrong here, she doesn't even want to play!"  (I used to pester him to let me play and of course when I WANTED to, he never would let me, but whatever..)   My mom rushed me to the emergency room, from here to there (I'll skip over the vomitting that occurred on the way) they said that my kidneys failed and I would have to be rushed to another hospital (about 40 mins away) to get dialysis.  Being 12, I had no idea what any of that meant.  I remember riding in the back of the ambulance, with my mom following behind us, and I was laying there, scared out of my mind.  The good ol' EMT people tried to do their best to get my mind off of things, "Oh, so how old are you?  Do you like school?  What's your favorite subject?"  I remember saying something like "Look, I know you're trying to get my mind off of things, it's not working.. can you please just SHUT UP!?!??!!"  Haha.

So I went on PD and still managed to be as normal of a 12 year old as I could.  When school started, I kept everything a secret, only my 2 closest friends knew.  To be honest, I was embarrassed.  I didn't want to be looked at differently.  I didn't want to be different!  There were so many support groups available, even designed specifically for kids, that I refused to go to, because, well.. I think I was in denial.   Mid 1994, I started having severe cases of peritonitis, and had to get home schooled for awhile.  I remember lying in bed day in and day out watching the OJ trial and becoming addicted to it.. ha.  I ended up on hemo via catheter, and the night before I was supposed to have surgery to get a graft put in, I got a call for a kidney transplant.

During my hospital stay, my family had moved to a new town, so the awesome thing (I thought) was I'd start a new school, fresh, no one will ask me where I've been the past year, no one will know that my cheeks are puffy because of steroids, it'll be a clean slate.  And it was!  I led a perfectly normal (minus the medicine and doctor visits) high school life, only telling again, one or two people my condition.  (My boyfriend, at the time, being one of them, because of course, I had to explain the scar somehow, and saying it was caused by a car accident just didn't slide..).  So I then started college, broke up with the boyfriend, and in the mid-months of 1999, my creatinine started to rise, and I knew my kidney was failing.  I fought it though, there was no way I was going back on dialysis.  I just couldn't.  So pretty much, I fought with my doctors, but by the year 2000, I was so overloaded with fluid, I had no choice but to succumb back to the dialysis kingdom.

I started on PD again, but that only lasted a year and a half before the scar tissue started to build up and cause too many problems.  So, I went back on hemo, via catheter again.  I'm still on hemo today, and I still have a catheter.  I've been home on NXSTAGE since December 1st, 2004.  I was one of the "pioneers" if you will, being one of the firsts in my state of NJ to go on and luckilly have not had to go back incenter since.  I absolutely LOVE Nxstage.  I do webdesign, so this allows me to work and dialyze at the same time, all in the comfort of my own home on my OWN schedule! 

I've been considering getting arm access, but besides the veins thing, I feel like, I've been on 4 different lists for transplants since 2000, with my luck, Ill get the access put in and the next day I'll get a call for a kidney.    


So yea, that's me in a big nutshell.  I'm really glad to have found this place and look forward to sharing stories and reading thru the other posts.     In retrospect, I really wish I would've taken advantage of all those groups when I was younger, so better late than never. 

[jedimaster]

Hello....welcome to our group. Lots of good people here.....

[vandie]

 

[goofynina]

Hello alright and welcome to the most awesome website/support group on the net... There is alot of important info here and i am sure with your history you can add to it as well.  Hope to hear more from you...

[Sluff]

Alright you picked an awesome website here.

[anja]

  Welcome, Alrightstill, you have been through so much since you were so young!  Glad you like Nxstage, like our administrator and a few others here do.  Glad to have you join us.

[jbeany]

 

[DeLana]

Welcome!  What a story, I'm just amazed at what you had to go through as a child.  Did the doctors ever figure out what caused the sudden kidney failure?

You have found a very supportive community, I think you'll like it here.

DeLana   

[Zach]

Good to have you here!

[alrightstill]

Hi, thank you all for the warm welcome. 

No, the doctors never figured out what was wrong - I don't think it was really ever pursued either.  The story we're hearing nowadays is that maybe there was a small cyst on my kidneys that grew overtime -- or pherpas they were underdeveloped..  Of course, back then, I didn't really care, but now that I'm older, I'd totally like to know what the hell happened.  I always went for checkups as a kid and there's no history of kidney disease or diabetes or anything on either side of my parents families.   

Oh well.  Must play with the cards you're dealt with.  I'm not all that religious, but I s'pose all things happen for a reason. 


Again, thanks for the welcome everybody! 

[Joe Paul]

Welcome alrightstill, good to have you aboard.

[Rerun]

Welcome Alrightstill.  You have been through a lot.  You will be a giant asset to this website having all 3 types of dialysis (including transplant).  Do I understand you don't have a fistula or graft??  Man if you luck is to schedule surgery and then get called for a transplant........I'd make the appointment ASAP!!

 

[tamara]

 

Great to have you here and hope you enjoy the ride of ihatedialysis.com as much as I have.

[Ken Shelmerdine]

 

[angieskidney]

 

Wow you have so much to contribute to this site through your experiences! Glad you are here! I have been sick since birth so I don't know what it is like to have a normal life and then lose it all! But I can relate since I had a transplant for 11 years and then lost it all (All my hard work down the drain just as I got the promotion I worked years toward!!  ) But anyway .. glad you are here! hope you post lots! 

[Fighter]

Welcome aboard alrightstill! You're an ESRD veteran even though you're only 26! I'm 28 myself (nearly 29) but just started the 'dialysis thing' less than two years ago.

[Bajanne]

Welcome to our community!  You have the distinct honour of being my 1000th post.  I was wondering where it would be!  You have so much to share with us, and I know that we have lots to share with you too.  I am glad you found us, and that you will make up for lost time by getting really involved in our community.
Welcome!

[Epoman]

DAMN, I love to see "Intros" like this, nice and long! 

Thank you and welcome to our community. I am glad you are a NxStage user so we can compare notes. Again welcome to the site and please post often.

- Epoman
Owner/Admin