Hi Denise--

I'm sorry your friend is having such a hard time. I hope he
finds a perfect match for the transplant.

We've had several people lately who have had successful
transplants for PNH. I know of one other person who has PNH
and MDS, but he hasn't had a transplant yet.

We've moved the site from here to www.pnhdisease.org--that's
where you'll find all the others. It's a good site with
nearly 300 members now, so you'll find a lot of support.

We have one other member that I know of in New Orleans.
Hopefully she'll check in and e-mail you.

Let me know if you need anything more!

Margaret
PNH since 1961

Hello all,

My husband's best friend from childhood has been recently dx'd
w/myelodysplasia and is in a local hospital here in New Orleans. He's
hoping to be getting a stem cell transplant (if one of his 2 siblings
are a good match) up at Duke in the coming days/weeks?. 

He has known he has PNH since he was 27 but it had not really
interfered w/his life....until about 2 or 3 weeks ago (he is now 49
years old).   His urine had turned dark brown and he was extremely
fatigued. After awhile, it went back to a normal color so he thought
he was getting better.  He was getting more and more tired so he
finally checked himself into the hospital where he has was tested and
told that he had almost zero platelets.  Now the doctors have told
him that when the urine went back normal it was probably when the
disease mutated into MDP (myelodysplasia).

He has lost over 30 lbs since being in the hospital.  He also is on
an antidepressant (understandably!),has bleeding ulcers, ulcers in
his mouth, fluctuating fever, clammy sweats, and now some sort of
growth that has gotten infected on his shoulder (which will be
removed tomorrow).

He asked me to see if anyone here had been diagnosed w/ both
myelodysplasia & PNH and then did a stem cell transplant?

Hopefully he will be able to go forward w/the stem cell transplant up
at Duke very soon.  We also hope that he will have a notebook by then
so that he will be able to join this group for support, especially
during the 90 days of isolation.  I know being part of this group
would be invaluable to him during this time.

So, please, if you have or had been dx'd w/myelodysplasia along with
PNH...please let us know!


Thanks for all your help,

Denise in Louisiana





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