Re: Home

[Guest guest]

Hi , I know you one happy lady, tired pooped and worn out but happy to have spent time with all your family. I just love that. I am also really happy that your numbers improved so much.. That is wonderful.

Sorry about the fluffy , pain part. I do so understand and sympathies. Be very careful with the reducing of the prednisone you will have some pretty weird side effects. I'll keep you in my prayers. God Bless...

Peggy 09/04 ipf

Hi Everyone,

I'm back and here's my update. Had tests all day Monday and Tuesday and the steroids are working. My lung volume increased from 34% to 60. All other PF tests went up between 10 and 13%. I was accepted by UC San Diego transplant team as a patient. They were planning to schedule me as an immediate transplant candidate since my Volume was so low. 30% is when they typically do a transplant. Because I improved so much it is indefinately postponed. (Halleluja!) The good news is that they feel they may be able to manage the disease for quite a while with steroids and Imuran and pulmonary rehab. The bad news is they want to do another biopsy because they are positive I don't have sarcoidosis and they want to know what is causing the rapid scarring. Other bad news is that all the markings on my lungs are permanent scarring and the steroids of course did nothing to improve it (they were ho some of the stuff was inflamation and would disappear) All six of my kids came to the beach in San Diego with their families and we had a wonderful time. They left this morning and I am tired tired tired but have all week to sleep! I am starting to get " fluffy " and having weird side effects- bad joint pain in the middle of the night, blurry vision and dizziness. I am on 40 mg for 6 more weeks and then they are going to drop it to 35. Don't know if my body can handle 6 more weeks. Missed all of you-

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[Guest guest]

Hi denise,

that is awesome news. i am so happy for you. may we all be as

fortunate. hugs to you!!!

jaime

>

> Hi Everyone,

> I'm back and here's my update. Had tests all day Monday and

Tuesday and the steroids are working. My lung volume increased

from 34% to 60. All other PF tests went up between 10 and 13%. I

was accepted by UC San Diego transplant team as a patient. They

were planning to schedule me as an immediate transplant candidate

since my Volume was so low. 30% is when they typically do a

transplant. Because I improved so much it is indefinately

postponed. (Halleluja!) The good news is that they feel they may

be able to manage the disease for quite a while with steroids and

Imuran and pulmonary rehab. The bad news is they want to do another

biopsy because they are positive I don't have sarcoidosis and they

want to know what is causing the rapid scarring. Other bad news is

that all the markings on my lungs are permanent scarring and the

steroids of course did nothing to improve it (they were hoping some

of the stuff was inflamation and would disappear) All six

> of my kids came to the beach in San Diego with their families

and we had a wonderful time. They left this morning and I am tired

tired tired but have all week to sleep! I am starting to

get " fluffy " and having weird side effects- bad joint pain in the

middle of the night, blurry vision and dizziness. I am on 40 mg

for 6 more weeks and then they are going to drop it to 35. Don't

know if my body can handle 6 more weeks. Missed all of you-

>

>

> ---------------------------------

> Yahoo! Sports Fantasy Football '06 - Go with the leader. Start

your league today!

>