Re: Hey Terre.... - Joyce

[Guest guest]

Hi Joyce,

Even though University of Miami is a center of excellence for IPF, They only did

like 4 lung transplants last year. also, my insurance company Aetna does not

cover UM for Lung transplants. They cover Shands and Mayo in ville, but

they are both 7 hours away. Plus, I only moved to Miami about a 2 1/2 years

ago, all my family and friends are in NJ and NY. when it comes down to the point

where I am sick enough to get a transplant I would move back north to be near

family and friends. As my parent live in Parsippany, NJ, which is about 1 1/2

hours from Penn, I was going to see if I can sign up there as well. I think

thats where you were signed up.

I dont understand why you were taken off the list... How much did your scores

improve that they felt you no longer qualified?? Did you appeal their decision

or were you relieved not to have to go through it yet?

Dave

> >

> > I think Bruce gave a site to meet people for hobbies, etc.. There is also a

site called " Createthegood. org " . You can meet people here and help out if you

want. You enter your zip code and it brings up many, many, places and positions

for which you can volunteer.

> > It's just another way to get involved with people of similar interests.

> > Terre, IPF, 6-09, FL

> >

>

[Guest guest]

yes i am a candidate at Penn

my disease is responsive to the meds, so there is no need to stay on the active list at this time

if there is a change, they will make me active again

also, they upped the age limit to 70 years

the scores improved and there was no need to appeal, it was a relief

if they submitted the new data into the LAS, the score would be so low, the chances of them calling me would be neglible, so it wasn't necessary to stay on the active list

and there were about 20 other candidates with the same score and blood type, i was the shortest, so i would get the first short person's lung

besides, i wasn't 100% convinced that i was ready for a transplant when i listed -- it was still how do you know when you are ready, yet the rest of the body being able to go through with the procedure

also, i went from being on o2 24/7 to only on exertion and for sleep

there was a young woman who moved to Penn from New Orleans after Katrina, to wait for her new lungs

don't know how long she waited -- cystic fibrosis

she got them last year, the first time i saw her after transplant, she looked terrible

a few months later, she looked like a different person, the change was amazing [for the good]

another amazing story was the man who lived a couple of hours away, he had a sudden change in condition, he was flown into Penn, his LAS was so high, that they were able to get a lung for him in a relatively short period of time, maybe 24 or 48 hours, this was last year so i don't remember all of the details

nor do i know how far Penn had to travel to get the lung

i met him at the lung transplant support group

for more information on lung allocation, contact UNOS or gift of life, there is a lot of literature that explains all of this stuff in addition to what the docs tell you

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Hey Terre.... - JoyceTo: Breathe-Support Date: Sunday, January 10, 2010, 11:33 AM

Hi Joyce,Even though University of Miami is a center of excellence for IPF, They only did like 4 lung transplants last year. also, my insurance company Aetna does not cover UM for Lung transplants. They cover Shands and Mayo in ville, but they are both 7 hours away. Plus, I only moved to Miami about a 2 1/2 years ago, all my family and friends are in NJ and NY. when it comes down to the point where I am sick enough to get a transplant I would move back north to be near family and friends. As my parent live in Parsippany, NJ, which is about 1 1/2 hours from Penn, I was going to see if I can sign up there as well. I think thats where you were signed up.I dont understand why you were taken off the list... How much did your scores improve that they felt you no longer qualified?? Did you appeal their decision or were you relieved not to have to go through it yet?Dave> >> > I think Bruce gave a site to meet people for hobbies, etc.. There is also a site called "Createthegood. org". You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > > It's just another way to get involved with people of similar interests.> > Terre, IPF,

6-09, FL> >>