I'll take that deed

[Guest guest]

Gotta reply here. Public service reminder that there is no absolute

in IPF. About the only thing I'm sure of is there's nothing

absolute about it. Most doctors and researchers don't agree. Those

posting have many things in common, but no 2 have exactly the same

path, symptoms, treatments or future.

When I first joined this site I spent ages going thru old posts so I

could see the discussions of topics that applied to me so I could

research what had been said from everyone. I wanted to find the

person that most matched my symptoms, my situation, not just what

the latest person, the most dominate voice, the newest research. I

wanted to see what held up over time, what people came back around

to again and again. What they said when they were at their weakest

and strongest. You'll see w/ each new wave of folks comes the

discussions of VATS, OLB, Prednisone, immunosuppressants, NAC,

exercise, cough, SOB, PFTs, rehab, doctors, CT's, causes, cures,

treatments, loss, hope, depression, prayer, ILD, IPF, PF, NSIP,

COPD, smoking, death, age, etc. Please for anyone new to this site

one of the best things to do is click on messages and then type in

about any word to search on.

So, now I'll take that deed to the Pacific and Hawaii. You

absolutely can have PF and have 98% saturation w/ exertion. Call

me " TOTALLY INCONSISTENT " !!! Really, I had hoped to always be a

medical phenomenon and was happy w/ that. For many, many years I

only had an annoying cough. You could say I'm not a text book case,

but that's the thing there is no textbook w/ IPF. If you are fit

and active that can majorly affect how it presents. Also the human

body has an amazing ability to compensate for many, many things. My

doctor was always amazed at the level I functioned and that it just

didn't affect my life and lifestyle as greatly as it " should " have.

There just is no absolute. Everyone is different. I hope that

everyone is happy w/ their path, but it is just that their path. If

I had become ill as suddenly as others on this board I would have

gotten that biopsy and/or done Prednisone, but that just wasn't my

case. It took 6 to 10 years to get where anything, but extreme

exertion caused my saturation to drop and so I'm very happy that I

opted to track my disease w/ PFT's and CT's rather than opening

myself up to lung collapse, more scarring and countless other

complications that could have made my disease worse sooner rather

than later. I could have immediately started on Prednisone and then

we would have attributed my " stability " to that instead of me just

actually being stable on my own. Then of course I could have worse

health because of the Pred or immunos. Just saying that you can't

say that VATS or the medications are always the right thing for

everyone. I'm just trying to remind folks there are different

opinions on this one along w/ everything in this crazy world of

IPF.

Lastly, to Dilwala VATS or no VATS... the biggest reminder here is

there is no doctor that can tell you you've got 6 1/2 months to 2

years. They've told so many on this board that... Check out some

of the signoffs for how long people have been diagnosed. 1 year, 5

years, 10 years, 18 years and many of us have had it long before

that date. Peggy says it best... there's no expiration date stamped

anywhere on me!

Kerry

IPF '01

S. IN

>

> A couple of things....

>

> If you're maintaining oxygen at 98% even under exertion and have

PF

> then I will deed the Pacific Ocean over to you, including Hawaii.

I

> don't mean to be funny, but thats just totally inconsistent. With

> your PFT's your oxygen saturation has to be slipping some. Please

> check because oxygen isn't just important for shortness of breath.

It

> protects your organs. If they are pushing for VATS, i just have to

> believe you need or are close to needing oxygen at least for

> exertion. What did your oxygen levels drop to at night? They did

> drop. Everyone's do, even perfectly healthy. You make a dangerous

> statement " I'm assuming that both my PC and the Pulmonologist do

not

> feel the need for it. " It's your life and you are your medical

> manager. Maybe I'm wrong completely but its a simple way to find

out

> and I can't imagine with your PFT's that your oxygen doesn't at

least

> drop to the low 90's on exertion and if it goes below 90 that

means

> you need oxygen. After all, what do you think gave you the

symptoms

> to start with? Your oxygen dropping.

>

> Now your percentages on your PFT's make sense. Don't have any idea

> why but normal for Asians is lower than Caucasians. Height makes

more

> sense to me.

>

> Now.....I understand not telling the kids until you know for sure.

> But, ultimately, honesty with everyone in your life will provide

you

> such relief and they need it too. Its a long battle and if you

can't

> communicate in every way, Sharing with your wife was the most

> important thing you could have done and while draining will be

> freeing to both of you.

>

> As to what you might or might do different after VATS. With UIP

you

> might choose not to do Imuran and Prednisone and you might choose

to

> do them with all others. Or you might do them regardless or not do

> them regardless....those are choices you'll make.

>

> Also, it can effect your choices of clinical trials and it can

effect

> your life planning.

>

> One other thing. Take care of all legal matters early and even

before

> VATS, such as Medical Power of Attorney, Directives, Anything

dealing

> with death or with incapacitation. Why? Then death is taken care

of.

> All you have to ever deal with after is life. Making the most of

> every remaining moment whether 1 year of 50. These are things you

> should have already done anyway.

>

> As to determining PF without biopsy. You can determine PF in

general.

> However, the accuracy of which kind is only about 60%. Early its

> less, later its greater. The accuracy with VATS is around 97%.

Insist

> the biopsies are read by more than one radiologist too. Mine were

> also sent to Mayo Clinic.

>

> VATS may technically and as far as potential death be the simplest

> thing he does. But to you its invasive and can have complications

and

> is likely to leave you with some residual pain. Its invasive to

have

> three pieces of your lung taken. So while I'd do it again, don't

> underestimate it, but don't overestimate it either.

>

> As to Imuran and Prednisone without VATS. Yes, one can just assume

PF

> and do that. But understand Prednisone isn't a mild drug. And,

having

> a VATS while you're strong instead of later is better. Plus you'll

> need it if you consider a biopsy. Now, if you're going to have a

VATS

> you would not do Prednisone before as it weakens your immune

system.

>

> Well, I'm so glad you came here. I know its overwhelming, but

you're

> doing an excellent job of learning and listening. We try to be

> completely honest and don't mince words. Always feel free to ask

or

> say anything. We're sorry you have to be here but welcome you to

our

> Air Family.