Re: Digest Number 130

[Guest guest]

Barb, Diane, Leanne and anyone else who is interested-

Barb thanks for the information on the medicene

Bosentan 125 mg. I can't stop thinking that they will

soon find a way to reverse the damage and or stop the

damage this terrible disease does to us. I've also

read that they are doing tests with interferon alpha

with some success. One report I read said " descent to

low altitude can improve arterial oxygenation,

exercise performance and sleep oximetry and

consequently the quality of life " . I've been thinking

about moving however I have to find a place I like. I

went to Arizona and was able to go without my oxygen

however from what I hear it's not a good place to live

in the summer. It's also a very crowded place! I'm

sure moving to a lower elevation isn't an option for

everyone.

Diane, the oxy-glasses I saw were woren like regular

glasses with the tubes going through the ear piece of

the glasses across the frame holding the glass then

down to the nose. It made the fact that you were

using oxygen much less noticeable. I'm sure it

doesn't bother some people however I would like to

find some to wear. People react differently to me

when they see my oxygen. They either stare-which I

understand-or act like I'm so handicapped that I can't

do things for myself. I know they are trying to be

helpful but after a while it is annoying. I'm a pretty

independent person and want to stay that way as long

as I can. I can't remember but were you the one who

asked me what my diagnosis is? It's " Hypersensitivity

Pneumonititis " which was caused by mold. It is very

rare and I guess I've had it for a very long time. I

was diagnosed in Oct. 2004. I do have Pulmonary

fibrosis, my left lung worse than my right one. When

they did the biopsy they had to make another incision

in order to get the piece of lung out because it was

so stiff the surgeon couldn't remove it. My doctors

are amazed because I don't look like I am sick. I can

take my ox off when sitting however when I stand up

and start to walk my sat. levels start to drop

drastically. I don't notice it unless I have my

oxymeter on. It is really weird. The only time I get

out of breath is walking fast, walking up inclines or

stairs. When I first went to Seattle I did the walk

test and lasted 2min.-dropped to 80 so they stopped

the test. The last time I went I lasted 6min, before

it started to drop. I think all exercise I've been

doing has really made a difference! Because I can't

tell when I need ox I have to use it all the time.The

right side of my heart was enlarged because I went for

so long without enough ox. Even the therapists at

rehab. are shaking their heads because I'm so

different from everyone else.

Leanne-When I mentioned doubles I meant all the

messages are repeated over and over so it takes a long

time to weed out the new ones from the old ones. Do

you know why it's doing this?

I also need to mention to everyone that my email

address is listed under my husband's name-Jerome-so

it's really me, Ronnie, that you are talking to. My

real name is but I prefer Ronnie. Anyway if

you address a note to Jerome it is me, Ronnie who will

answer-just didn't want you to wonder why Ronnie was

answering notes sent to Jerome. Hope that didn't

confuse everyone. Thanks, Ronnie

--- Breathe-Support wrote:

> There are 25 messages in this issue.

>

> Topics in this digest:

>

> 1. Re: SLEEP

>

> 2. Re: doubles

>

> 3. Re: clubbing self test

>

> 4. Re: clubbing self test

>

> 5. Re: SLEEP

>

> 6. Re: doubles

> From: wastintime00@...

> 7. Re: doubles

>

> 8. Re: Prednisone and transplant

>

> 9. Name of Trial drug to treat IPF

>

> 10. Transplant Weight in Kentucky?

>

> 11. Re: Re: Digest Number 122----joyce

>

> 12. Live in Kentucky too

>

> 13. Re: Re: New to group

>

> 14. Re: New to group

>

> 15. Re: Prednisone and transplant

>

> 16. Re: Digest Number 122----joyce

>

> 17. Re: Live in Kentucky too

>

> 18. doubles

> From: " Leanne "

>

> 19. Re: New to group

>

> 20. Re: New to group

>

> 21. Re: doubles

>

> 22. Re: Re: New to group

>

> 23. Re: Prednisone and transplant

>

> 24. Re: Re: SLEEP

>

> 25. Re: Re: SLEEP

>

>

>

>

________________________________________________________________________

>

________________________________________________________________________

>

> Message: 1

> Date: Thu, 23 Mar 2006 13:57:04 -0800 (PST)

>

> Subject: Re: SLEEP

>

> Hi Girls. Can't sleep you need more melatonin like

> in your turkey dinners. Who can eat Turkey every

> night so I drink tart cheery juice it is full of

> melatonin's.

> http://www.brownwoodacres.com/health.htm lots

> and lots of pillows under my head and one between

> my knees

>

>

>