Josh's transplant

[lafounk2]

Hi everyone,
Just an update on my 16yo boy Josh. Well, been on dialysis since 11/18/09. He was due for transplant this month, however, three living donors that were going through testing were eliminated due to one reason or another. Now plan B. I will start my testing for the paired-exchange program. The transplant team has decided to activate Josh on the deceased donor list as well as work me up. This was not what I planned as I was hoping and praying for a side by side living donor, but I guess it wasn't meant to be. Can anyone in the forum that's had a transplant tell me your experience. Did you have a living or deceased donor and how long has it been since your transplant?
Kelly:(

[Jack]

Deceased donor 20 years ago. Transplant worked straight away and has never given any trouble. The best thing that has ever happened to me! :) (Thank you donor and family whoever you are)
I was not doing too well on dialysis and felt quite ill, but I was still having the odd Wegener's flare at that time so was not in the best of shape anyway.

[lafounk2]

Thanks so much for letting me know that your donor transplant has lasted this long. I've feared decease donor kidney as statistics show that they don't last as long as a living donor, but you've proven that they can last a long time. Glad to hear you're doing well and I am nervous and looking forward to transplant day. Fearing rejection and praying for a positive experience for Josh. He's such a good boy and doesn't complain about much. Nurses and Drs love him as he's always chipper. He's on dialysis right now. Got 1 hr and 7 min remaining of his 3 1/2 hr run. What's life like after transplant?

[Jack]

If it were not for having Wegeners, my life would be completely normal with a transplant. No special diet or anything like that. I obviously have reduced kidney function, but about the only effect is to change some of my blood test results away from the normal range. I don't feel any worse for this though.

Here in the UK, you tend to get a better match with a deceased (cadaver) donor because the organs are given to the most suitable candidate on the list which covers the whole country.

[elephant]

I had my kidney transplant 1989, got the kidney from my living brother. Never had a problem with my kidneys. Feel 100 % better after I got my kidney! Good luck! Something will happen soon.

[DEE]

hope things happen soon DEEx

[Sangye]

I'm hoping Josh gets the best kidney possible, whether it's from a living or deceased donor! He sounds like a great kid. Hugs to him. :)

[jola57]

Mee too, a big hug to a very special boy.

[Luce]

On Facebook I'm friends with a 16/17 year old girl called Courtney living in the States who has just had a kidney transplant, I don't know many details but her family weren't suitable donors, not sure if the kidney was from a living or deceased donor but I know she was called in at the very last minute.
She is doing fantastically well and has her own website where her Mum writes updates here chall (http://www.courtneyupdates.com/)

If you're on Facebook I can put you or Josh directly in contact with Courtney as I'm sure she'd love to tell you her experience and it's good that she's the same age as Josh.

Good luck with it all and keep us updated.

[Doug]

What a thing to face at any age, but here's to the best outcome for Josh!

[jola57]

I think that is a wonderful idea Luce, I hope Josh will be able to connect with her.

[marta]

I can't speak for myself, but my sister-in-law's father has the oldest transplant in Western Canada and it was from a deceased donor I believe. He's had it for over 35 years (I can get the exact age of his kidneys) and is well into his 70's and one of the toughest dudes I know. He's strong and healthy, beats all the young guys at golf (by a lot,) goes out geogaching to the craziest places you can imagine, and on a recent geogache fell down and broke his femur, and had a faster recovery than a teenager. He lives a perfectly healthy, normal life and is an inspiration to me and anyone else in his circle of influence.

[lafounk2]

Thanks all for all your inspirations and wonderful stories. Today is the day Josh has been turned to active status on the deceased donor list. Josh and I both have facebook if you or anyone would like to contact with us. My name is Kelly LaFountain and my son is Joshua LaFountain. Love to connect Josh with other kids that have WG.