ILDs, Rehab, etc.

[Guest guest]

Cathy,

There are many interstitial lung diseases, of which PF

is one. There are also many forms of PF. Fibrosis

(scarring) is irreversible and takes place in the

interstitial tissue between the air sacs (alveoli) of

the lungs.

When you get short-winded, does the 3L do the trick

for you? If not, you need to tell your doctor that you

need more oxygen. Hopefully you have an oximeter

and can tell when your sats fall below 90%, which you

don't want to happen. Otherwise, you risk damage

to other organs and tissue, particularly your heart and

kidneys.

The increased need for 02 in three months is actually

not weird. This wicked disease takes a different course

not only for all of us, but it can change in a hurry for

a single individual. I had a drastic decline in the 3-6

months before transplant. A lot can happen in three

months. That's why " stable " is such a good word for

us at any point in the disease, and why it is so

important for us to monitor ourselves.

,

You and your family together at the Wisconsin cabin

sounds wonderful. Have a blast!

At my pulmonary rehab class, I was the only person

with IPF (or PF for that matter) - the rest had COPD.

However, basically any good pulmodude is going to

tell you that it benefits you to keep MOVING and to work

as much on core strength as possible. I know first-hand

that it helps in recovering from transplant surgery,

but before that it really helped with my exercise

tolerance, even when I was able to do very little.

I've heard that Prednisone saps strength from our

legs and we can lose leg strength in a HURRY from

lack of use. I've heard other transplant patients say

they could barely walk after surgery, like their knees

were going to give out beneath them. One woman

even had trouble getting up from the toilet for this

reason.

Peggy,

Playing doctor includes self-interpreting elevated

temperatures, coughs, or trying to determine if you

have an infection or not. Please don't. You worry me,

especially since I don't have much faith that you won't

overdo on Turkey Day. I hope I'm wrong, and that you

will rest and feel better soon! Try thinking that letting

your family help out is a gift to THEM. They probably

feel somewhat useless to help you much of the time,

and this way they can make a real, visible contribution

that impacts you positively.

,

Yea - home for Christmas! I certainly hope so. You

remain in my prayers.

I hope everyone has a lovely Thanksgiving day and

remembers that we all have reasons to be grateful this

and every other day.

Hugs and blessings,

Gwynne Single-lung Transplant for IPF on 4-3-08

at UTHSC -San Fort Worth, TX

[Guest guest]

Gwynne/Peggy

Gwynne

Hope you're having a great Thanksgiving. Now of course we know one thing

you're definitely thankful for this year. I can assure you there is a

family and there are so many friends thankful for your new lung as well

(well, new to you...I guess technically its a previously owned lung).

Peggy

I'm with Gwynne and worried as I said earlier, especially since I've

noticed you dance completely around the question of how you feel and

your fever today. Are you still running a fever? Have you started the

Levaquin?

>

> Cathy,

> There are many interstitial lung diseases, of which PF

> is one. There are also many forms of PF. Fibrosis

> (scarring) is irreversible and takes place in the

> interstitial tissue between the air sacs (alveoli) of

> the lungs.

>

> When you get short-winded, does the 3L do the trick

> for you? If not, you need to tell your doctor that you

> need more oxygen. Hopefully you have an oximeter

> and can tell when your sats fall below 90%, which you

> don't want to happen. Otherwise, you risk damage

> to other organs and tissue, particularly your heart and

> kidneys.

>

> The increased need for 02 in three months is actually

> not weird. This wicked disease takes a different course

> not only for all of us, but it can change in a hurry for

> a single individual. I had a drastic decline in the 3-6

> months before transplant. A lot can happen in three

> months. That's why " stable " is such a good word for

> us at any point in the disease, and why it is so

> important for us to monitor ourselves.

>

> ,

> You and your family together at the Wisconsin cabin

> sounds wonderful. Have a blast!

> At my pulmonary rehab class, I was the only person

> with IPF (or PF for that matter) - the rest had COPD.

> However, basically any good pulmodude is going to

> tell you that it benefits you to keep MOVING and to work

> as much on core strength as possible. I know first-hand

> that it helps in recovering from transplant surgery,

> but before that it really helped with my exercise

> tolerance, even when I was able to do very little.

> I've heard that Prednisone saps strength from our

> legs and we can lose leg strength in a HURRY from

> lack of use. I've heard other transplant patients say

> they could barely walk after surgery, like their knees

> were going to give out beneath them. One woman

> even had trouble getting up from the toilet for this

> reason.

>

> Peggy,

> Playing doctor includes self-interpreting elevated

> temperatures, coughs, or trying to determine if you

> have an infection or not. Please don't. You worry me,

> especially since I don't have much faith that you won't

> overdo on Turkey Day. I hope I'm wrong, and that you

> will rest and feel better soon! Try thinking that letting

> your family help out is a gift to THEM. They probably

> feel somewhat useless to help you much of the time,

> and this way they can make a real, visible contribution

> that impacts you positively.

>

> ,

> Yea - home for Christmas! I certainly hope so. You

> remain in my prayers.

>

> I hope everyone has a lovely Thanksgiving day and

> remembers that we all have reasons to be grateful this

> and every other day.

>

> Hugs and blessings,

> Gwynne Single-lung Transplant for IPF on 4-3-08

> at UTHSC -San Fort Worth, TX

>