I finally did it. Hello

[Lilu323]

Hello everyone. After 5 therapists through my life and constant nagging, I finally opened up myself to join one of these communities. I want to say hello to everyone and thank the person who created this site. My story is very long and difficult to explain. I will give you guys the short version. As a baby I got medically diagnosed incorrectly. Due to this, I lost both of my kidneys at the age of 7. I began dialysis at the age of 7 for three very long years. At the age of 10 my mother gave me her kidney. It lasted 18 wonderful years. No complications until the end. Last year I was able to go for another transplant but it failed. Why it failed is still being questioned. Along with trying to get another transplant last year, I had a series of horrific & miraculous events. The horrific events were that I was in the hospital for 2 months and ended up in the ICU twice with many surgeries and complications. The miraculous event was that out of 10 people in the ICU, me being the worst case of them all, I survived. Its been my fourth time through out my life that I cheated death. I started dialysis in January 2008. Anyway that is all I want to say for now. Im scared and nervous because this is my first time opening up. I hope this helps me and also I hope I can help anyone out there. Best to all.

[paris]

    Dear Lilu,  I am so glad you joined us and shared some of your story.     I hope you find this a safe place to come to and feel free to say anything you want.  We all lean on each other and many times share more here than we do with family members.  The members care about each other and are always willing to give a shoulder to cry on.  Or a joke to make us laugh.  This is the best site for kidney patients.  Please keep posting.  I know we can learn from your experiences, too.   




Paris,moderator

[monrein]

  Lilu.  You've found a great place where people have gone through some of the same things you have and so really know how difficult this whole struggle can be.  I hope you''ll come here often so we can get to know you better.

[pelagia]

Welcome to IHD. 

[Ang]

 



post  often  we'd  love  to  hear  the  rest  of  your  story.

[thegrammalady]

  this is the best place to land.

[napala turki]

Hi Lilu323,

Sad and sorry of your story. Claimed with us... be free and opened.... Welcome to IHD...

[Joe Paul]

Welcome  Lilu, good to have you aboard.

[twirl]

hello and glad you made it

[Lilu323]

Thank you all for your thoughful responses. It felt really nice. Please ask me any questions you have. I hope I can help as you are helping me to open up. As for more of my story, there is so much that has happened to me. When I got my transplant in 89 from my mother, her and I werent even a perfect match. My father and my sister were a better match. My mother however decided that due to my father being the bread winner and my sister being 20 she wanted to do it. After I received my mother's kidney at 10, I was in the hospital for 3 months. I got very ill and my kidney for 3 months didnt work. My mother had something different in her blood then I. They tested me for everything...cancer,aids, infection..in the end they found out my mother had transmitted the mono virus to me. Back then in the 80's my trype of transplant was one of the first at Columbia in NY. Now they inject the donor or recepient and they dont have to worry about the virus being transmitted. 18 years later I had antibodies toward my second transplant donor and basically eveyone that got tested for me. If this had happened 18 years ago to me, having antibodies towards people, I wouldnt have been able to get a transplant from my mother. So technology advanced and last year I underwent plasmapheresis to remove the antibodies that I had toward my donor and you all know how that ended up. Best to all.

[peleroja]

Welcome aboard.  I've heard it said that a joy shared is twice a joy, and a burden shared is half a burden.  Come back and post often and let us help you lighten your burdens and double your joys!

[willieandwinnie]

Lilu. You have been through so much in your life,  We are a great group and have lots of information to share. You will find support from everyone and we hope you are comfortable enough to just say what's on your mind. Keep posting. 

[boxman55]

Hi Lilu, welcome to IHD you are so strong to open up. We are here to help or just listen. welcome again

Boxman, Moderator

[Ken Shelmerdine]

Hi Lilu
So glad you've decided to join this forum. We all share our problems and give love and encouragement to each other. There's also quite a lot of fun and banter on some of the off topic pages. Welcome to IHD.

[annabanana]

Welcome, Lilu.  I know how much courage it takes to open up. Glad you found the courage to do so here at IHD.  You will not regret it. It's a beautiful place to be. 

[Pierre]

Welcome!  Reading your story made me understand that, while we have all the same type of problem - dialysis - yet we are all different and unique. Please share your experiences with all of us, all of us can learn from each of them.

[kitkatz]

Welcome to the site. It is nice to see you here opening up. Remember message boards can be really pleasant places to be.  Also everyone has an opinion on everything.  I hope to see you around more.

kitkatz,moderator

[lola]

 

[Lilu323]

Thank you again for everyone you responded. It met a lot and felt nice.

[TynyWonder]

 

[G-Ma]

   yes it feels good to be able to share.
Ann

[RichardMEL]

G'day Lilu and welcome!! You've obviously been through so much but you're still with us to tell the tale, and that's the main thing!!

Just about your sister and donating a kidney to you when she was 20 - I imagine they may have knocked that donation back given that they usually don't want to take live donations from women of child bearing ages - since there's an effect on future pregnancies (or perhaps the pregancy would put too much strain on a one kidney body - I am not certain exactly the reason but I know when my sister tested - at the age of 38 - they wanted to deny her on the basis that she still could have children and thet didn't want to get in the way of that).

I am glad you have made the choice to jump in with us and share. I am sure getting things off your chest a bit - even to relative strangers - will help you feel more confident. At least you can be assured that everyone here will be able to relate to parts of your story and your situation and you will find more understanding and support here than most other places - because we've all lived with kidney failure - either suffering it, or caring for loved ones going through it, or working in the dialysis field.

So please feel welcome, and free to share how you feel - even if you feel silly or stupid - I bet you anything that there will be folks on here who can relate to anything you are thinking and feeling...

we are here for you!

 

[Romona]

 

[Lilu323]

Thank you all for your words. Richard thank you for sharing some of your story. As for my sister it was actually my mother that didnt want her to donate to me. The doctors didnt care for some reason. I guess they had seen me suffer enough that they just wanted anyone to donate. I think sometimes that if my mom allowed the better match to be given to me at 10 yrs old if it would have lasted like my mothers kidney(which wasnt a good match) for 18 years.

[Sluff]

Welcome Lilu,

I'm so glad you found us, we need you as much as I hope you need us. Everyone here knows what you have been through and we really do understand. You can use this forum for anything you may need even, including having a place of refuge. Speak out that is what we are here for.

Sluff/Admin