Lung Transplant Support Sites

[Guest guest]

LeAnne or anyone else who knows,

Are there any good sites that support people who have had a lung

transplant? If so please let me know. You folks have been very

supportive of me in the past before my transplant, but now even

though I do not log on as often when I do ask questions I get no

answers. But I am sure that is because you folks are still waiting on

a transplant so you are not experiencing what I am going through.

But on the bright side at least I am still here. Afterall it was

just a year ago when the doctor only gave me a year to live if I

didn't have a transplant. The doctor tells me the first year after

the transplant is the hardest and believe me these 6 months have been

especially since Nov. when my lung collapsed and they gave me all

those rejection IVs.

My biggest problem now is the shakiness and weakness that I have had

since they gave me those high steroid IVS last Sept. and then the 10

days of high steroids and high rejection IVS in Nov after the lung

collapsed. Right now I am also dealing with a sore throat and an

ulceration in my mouth (from having bit my cheek). I was using

Listerine in warm water in my Water Pik and gargling with it & the

dentist told me yesterday not to use that because it contains

alchohol and is preventing the healing. I also saw a doctor on Thur.

at my primary doctor's office and she put me on Z pack which helped

my throat a little but it is still quite sore and a Miles Mix

mouthwash for the ulcerated area, plus I still use Nystatin.

I have been staying home more since we have had some snow and ice and

cold weather in this area the last few weeks plus the news has said a

lot of people have been ill in the area and I've tried to stay away

from the germs. When I do go shopping I wear my face mask almost the

entire time that I am in a store and I do use the sanitary wipes on

the electric carts. Yes, I am still using the electric carts or my

walker or cane as my muscles are still very weak and I am so shaky

thanks to Prograf. But I can breathe good and in the last few weeks

I started getting 8 hours of sleep at night. I am in physical

therapy twice a week although I cancelled my one in the pool last

week and this past week because we had icy roads plus I had burned my

left thumb (thanks to my shakiness) with my curling iron and could

not risk getting in a pool with an open wound. I have to use my

curling iron a lot because I have lost so much hair. In fact I am

going to start checking on getting a wig. I still take Xanax to help

control the shakiness but only take 1 pill at a time 9every 4 hours)

during the day and even 1 pill makes me a bit drowsy so I still don't

get much done around here. My wonderful beautiful new home is still

a cluttered mess, mostly with boxes of papers I still have to go

through so I can file appeals with Medicare and my insurance plus get

my data together for my taxes. And Peggy I tried to read your email

about cleaning your house but there was nothing in it.

If anyone on this site has had a transplant and experienced this

shakiness will you please let me know if you got over it and how you

got over it. Also if anyone has had hair loss, what do you suggest?

Love and Aloha,

Judy - OH - Transplant Aug 07