About to get a transplant

[drubaby13]

Hello everyone, my name is Dru Mendrick and I am 14 years old. Since i was 4 i have had kindey problems (nephrodic syndrome). A few times a year i would have relapses and retain water for a couple of weeks but we kept it under control by taking medicine (prednisone and lasix) and it was easily to live with, however since october of 2003 my kidneys have been getting worse, after being swollen for 4 months the doctors did a biopsy in february and it revealed the nephrodic syndome had progressed into F.S.G.S. (focal segmental glumerosclerosis) this indicated that I wasnt gunna grow out of the disease and eventually i was gunna get a transplant. They took me off prednisone, they tried cyclosporin (Neoral), Cellcept, and none of them get rid of the swelling, they've increased my lasix and tried metolozone but none keep the swelling down. in the mornings i am very nauseated and usually have dry heaves, i have diarhea often and im also very anemic, the doctors have me on many anemia medications includin epogen, high blood pressure medications, and diarettics. For the past year ive had to live with up to 60lbs of adema and all those syptoms, not to mention being home tutored because i've been so sick. But the doctors wouldnt do a transplant until the kidneys got worse enough, after months 6 and 7 i kinda gave up hope and thought i would be like this for years to come but finally my creatnine levels have jumped to a 6.5 and i am eligible to recieve a transplant, my grandmother who i live with is going to get tested so i can use her kidney she has an O blood type which will work with my A, and if everything goes alright maybe in the next few months i can have my kidney and have an active life. I just wanted to get my story out and see if anyone has any advice or support, anything would be very appreciated thank you all Dru Mendrick

[Hal]

Hi Dru,

Sorry to hear about your troubles. I had a disease (MPGN) which worked in the same way as yours. I was also very swollen and tried all those drugs but nothing really worked like you.

You seem to be very knowledgable about what is going on with your health and that is obviously good - if you know what is going on you can look after yourself and your transplant when you get it soon.

I hope you get your transplant soon and feel better. If you want to chat there are people talking at http://www.dialyze.org/chat/ often during the week (although it is quieter at weekends).

Good luck,

Hal.

[Elaine]

Hiya Dru, I can really comprehend wot u goin through as my daughter now nearly 17 has been goin through similar probs cos of FSGS since age 13. She has such arollercoaster ride ups n downs been on p/d 18 mnths now on haemo past 4 months and relisted on transplant waiting list afte rbeing suspended 7 mnths due to low albumin. Yeh the swelling is not at all pleasent 4 especially as a teen etc.

She too has part- time tutorin and had to re- do a yr that she was 2 unwell to go to school .Also some tutorin @ hospital while on haemo. She tries to pop into school odd hour here n there but the exhaustion kicking in yet again!! Also the constant sickness comming back again , did stop for a while when went on haemo.

Good luck and hope that u will be able to have a transplant in near future, and get u life back soon. Sounds like u got a very supportive grandmother

As Hal says we are often in CHAT a room to chat with people all ages with similar probs themselves carers, past carers etc a friendly group hope to speak 2 u in there soon. We also have other people from USA too and Uk and many differnt places all round the world on CHAT. This board is also very helpful and useful.

good luck Elaine UK

[JMan]

Hi Dru...

welcome to the board.. there are some very good people here, and its a good place to post when you need some support and someone to talk to.

SOunds like you are doing the right thing by keeping yourself well informed about whats happening to you... Keep asking lots of questions:D

Take care and remember to do the things you enjoy..

J

[pamom2]

Hi Dru! Keep your thoughts positive! I hope everything works out for you!
Take Care!