HELLO! Looking for new friends.

[jessbeth]

Hi Everyone! My name is Jes.

     When I was Little I got a very sick and needed a transplant at 9years old. unfortunately I lost it when I was 24. I've been on hemedialysis for almost 3 years now.
I've gone through a lot of changes in the last 6 months. I ended a 3 year relationship, moved in with my mom, transfered unites and started school.
I've been trying to get on the transplant list again, but because I had issues taking my medication before I have to jump through a lot of hoops.

I'm really happy that there is a site like this. I don't really have any friends right now. the old way of making friends and meeting guys was going to a party and drinking.
I'm a bit older and don't want to go to the bar . so hopefully I will meet some interesting people on this site.

I look forward to talking to everyone

[st789]

Welcome.

[willieandwinnie]

jessbeth. You found the perfect place for you. We have lots of information to share and even more support to give. Hope we hear more from you and check out some of the older threads (there are loads of them). 

[monrein]

   you've come to the right place to find people who understand what you're dealing with.  Post often and I look forward to getting to know you through this site.

[Rerun]

Hi Jess and welcome to IHD.  I know you will find friends here and they won't ask stupid questions like "why are you sick". 

Where are your from?  I don't want you home address, but a "State" or "Country" would be a good start.

                           

[Chris]

Hi there,
We do have a virtual bar here now though 

Anyway, seems they should be more understanding about medication issues when you had a transplant as a kid. Even whn I was younger as a diabetic, I didn't take my insulin all the time or take my blood sugar.
Good Luck on getting back on the list.

[swramsay]

HELLO! HELLO! HELLO! 


One of my dialysis technicians is on the prowl again and looking for men in all the wrong places. What is it with beautiful women and bad men?!

[cookie2008]

 

[RichardMEL]

Welcome JessBeth (hmm competition for AlohaBeth???  )... glad to have you with us. Not glad your transplant quit at 24, but you did get, what, 15 years out of it which must have been really good for you to have a mostly "normal" teenage life and growing up - much better than having to do dialysis!! I hope you can get back on the transplant list and get another shot at it - as we all know dialysis sucks - specially when you're young and want to lead a life.

Just on meeting people you know you totally don't need to go to bars and drink to meet friends (or more). There's interest groups you can find, or just meeting through friends, parties etc(and you don't need to drink to have a good time there!). One thing I do NOT recommend is craigslist!!! 

Anyway you will find plenty of friends here - specially those who understand the crap you have to deal with!!!   

welcome! 

[Joe Paul]

Welcome JessBeth, good to have you aboard.

[Tinah1968]

  Glad you found usand we are always here to listen to the good or the bad.

[Brightsky69]

 

[boxman55]

Hi there, Welcome to IHD. Please post often so we can get to know you better. We are glad you are here.

Boxman,Moderator

[Romona]

 

[Dan.Larrabee]

I am sure you will find many friends here..

[jessup]

G'day and 

[TeenHatesDialysis]

 

I am a newbie, also.  I am sorry that you lost your kidney    .  Did your kidney last from 9 to 24, 15 years?? That seems like a pretty long time. I have 2 teenage daughters that are listed for transplants.  They plan to be transplanted at Stanford due to their non-steroid protocol, so at least they won't have to take the steroid meds. I remember being in my teens and twenties and thinking that I was invincible so I am really trying to drill into my teens that taking their meds has to be a habit, like brushing their teeth, otherwise they will be back where one is now, on dialysis. Since you have been through it, can you offer any advice on the best way to make sure they take their meds?  I hope you get another kidney soon.   

[pelagia]

 

[jessbeth]

Hey,

     Very glad to get your message. wow both of your children need a kidney! that stinks! I had my transplant before I developed emotional intelligence. there really wasn't any support group at that time and if there was my mother was not aware of it. my biggest problem was I just wanted to be like all the other kids "healthy". My family really didn't talk about my heath problems so that made it easier to forget. It good that you encourage your children to take there meds! My mom would yell at me and take things away if I gave her trouble taking them, so I started hiding my pills. I hated the way they made me feel and i hated being different. All I can say is support your children and try to keep things light hearted. I was alone, even though it must be painful for both of your children to be sick they have each other for support. I encourage to keep open communication with the doctors. My main problem( which I have just come to realize in counseling) is that my mother would say tell them what they want to hear so we can get out of here. This real messed me up as a child, you are programed to follow your parents so after a while I just started telling her and the doctor what they want to hear not what was really going on with me. I hope that help and if your kids have any questions let me know.

     As for the part of your message that said you are going to have them transplanted at Stanford due to their non-steroid protocol. Can you send me some information on this program? I've been searching for something different. I was enrolled at this program at mass general hospital they have a program that combines a bonemarrow/kidney transplant as a result the paient only need immune suppression meds for 1-2 years after transplant. You do need a live donor for this though and there is kemo (sp) involved. unfortunately I no longer have a live donor.

      Stanford  CT do you live in CT? Thats were I live!

     Lookforward to hearing form you                                                                                   Jess

[Zach]

Good to have you here!
 

[TeenHatesDialysis]

Hi Jess 

Sorry that you had to go through all of that without any support.  This is a great support group. I have heard from other people that the side effects of steroids were sometimes unbearable, which is why I research the steroid-free protocol at Stanford University, Palo Alto, CA. Here is a link explaining the steroid free protocol:

http://med.stanford.edu/news_releases/2008/june/transplant.html

We currently live in Colorado so we will have to travel out of state for my duaghters' transplants and remain close to Stanford University for 100 days following transplant(s).  Also, our medical insurance covers dialysis at Childrens Hospital in Colorado, but does not cover a transplant...so we needed to look out of state regardless. Several hospitals are following this steroid-free program.  I know the primary one on the east coast is in Pittsburg.  It sounds like you have done your homework. I was very interested in the bone marrow/kidney transplant also.  It may be an option for my older daughter as I am being evaluated to donate my kidney to her.  (We are both blood type A  )   I dream of a kidney transplant that doesn't rely on meds F-o-r-e-v-e-r!

I hope that this information is helpful to you. Hang in there, you have lots of support.