Re: It is Wal

[Guest guest]

Walt

I had a VATS and would have one again. However, in your condition with

the problems you're having, I would be extremely reluctant to do so.

I don't recall where your pulmonologist is but, if not at one of the 13

Centers of Excellence or at least a hospital nearly equal I would go for

another opinion.

As to sending you to a clinic hoping they will find a steroid that will

work, the only choice I know being used is Prednisone, often with

Imuran. So there isn't any finding-its either you do or don't. Now,

finding the form of PF can assist in that decision, but doesn't by

itself determing. You need to ask if you'd do prednisone? Or if you want

to do it regardless of the form?

Nothing in the treatment of PF would impact these trips to the hospital.

In fact, prednisone lowers your immune system. What is causing your

trips? If you aren't getting the answers you need consider a new

pulmonologist or at least second opinion.

>

> I have nt been on for a couple of days because I am in he Hospital ?

It

> is the second time this year . It seems I can tel hen this will

> happen . It will get harder and harder to get around . Till Finley I

> cant stand up . And same hing this time ICU not as long a before . But

> they cant tell what s going on ? The Dr said he wanted to give me

> biopsy and said my lungs are in bad shape . He said that if i get a

> hole in my lung I might not come off he respirators They want to do it

> so they can tell what kind of fibrosis I have I decided against it /

> He will send me to a clinic to see if thy can find a steroid that Wil

> work . What does anyone At thee think I should do ? I am only 61 and

> do no want to spend the rest of my life on receptor But can keep

> winding up at the hospital every month , Thanks . Trying to put more

> videos of m grandson on . God bless you all :Walt

>

[Guest guest]

> >

> > I have nt been on for a couple of days because I am in he

Hospital ?

> It

> > is the second time this year . It seems I can tel hen this will

> > happen . It will get harder and harder to get around . Till

Finley I

> > cant stand up . And same hing this time ICU not as long a

before . But

> > they cant tell what s going on ? The Dr said he wanted to give me

> > biopsy and said my lungs are in bad shape . He said that if i get

a

> > hole in my lung I might not come off he respirators They want to

do it

> > so they can tell what kind of fibrosis I have I decided against

it /

> > He will send me to a clinic to see if thy can find a steroid that

Wil

> > work . What does anyone At thee think I should do ? I am only 61

and

> > do no want to spend the rest of my life on receptor But can keep

> > winding up at the hospital every month , Thanks . Trying to put

more

> > videos of m grandson on . God bless you all :Walt

> >

>

Thank you Bruce Moreland Seems you know what your talking about . I

am in s Hopkins in Baltimore MD That is the problem . They cant

find out what is causing it? I have been in Renown Hospital in Reno

NV . And s Hopkins witch is supposed be one o the best in the

world Had all kinds of test and they don't know n 2 different

Hospital's . I was doing so well when I was In Davao Philippines ? I

was walking 1 to 2 Miles a day. I came home wet back to work and

worked about 3 weeks . And almost wrecked coming over Donner Pass In

Ca. spent 9 days in the Hospital in Reno and now I am in here .They

cant figure out what is up ? I don't now much about this , r what ill

come next ? Trying to get better . So I can go back . They said a

biopsy would tell them more. But I feel that would just make things

worse .

I wouldloveto get better so I can goback to Davao Thanks and God

Bless eveone Walt

[Guest guest]

Walt,

So sorry to hear that you are in the Big House. Please believe me ...... I do know that you don't want to be there. I have been twice already this year and I am so through with hospitals. Aaaargh!

Are you having infections? Most usually when I begin getting weaker and weaker it is due to lack of oxygen. Have they checked your pulmonary pressures? Have they checked to see if your heart is involved at all?

I would not advise you, Walt. It is waaaaaay too serious. But, I did have a biopsy and I didn't hesitate to do so. It was a tool that would help the doctors know if they could treat me and how to proceed. It accomplished that. I have lived 11 years since biopsy. I would not want to do it again, but I would.

You are right. 61 is too young to be laying up in a hospital. You have a little boy to hug. He is a cutie. I have 7 grandkids that I adore. One of them is especially close to me. I always used her as a focal point. She was the one thing so many times that I used to make myself fight this miserable fight. She saved my life so many times and doesn't even know it.

I pray that you are soon freed from that miserable place and home with your family.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> I have nt been on for a couple of days because I am in he Hospital ? It > is the second time this year . It seems I can tel hen this will > happen . It will get harder and harder to get around . Till Finley I > cant stand up . And same hing this time ICU not as long a before . But > they cant tell what s going on ? The Dr said he wanted to give me > biopsy and said my lungs are in bad shape . He said that if i get a > hole in my lung I might not come off he respirators They want to do it > so they can tell what kind of fibrosis I have I decided against it / > He will send me to a clinic to see if thy can find a steroid that Wil > work . What does anyone At thee think I should do ? I am only 61 and > do no want to spend the rest of my life on receptor But can keep > winding up at the hospital every month , Thanks . Trying to put more > videos of m grandson on . God bless you all :Walt>

[Guest guest]

Walt/Joyce

My comment on biopsy was more aimed toward the fact that they need to

figure out what keeps putting him in hospital, whether infection or what

as while it may well be a complication of his lung condition and

happening more severely because of PF, it doesn't sound like its the PF

itself. And, it would certainly seem to increase risks of a biopsy. Like

you I can't advise but I sure would want to learn more if in his

situation before proceeding with any option. At the least they should be

able to tell him what the cause of him being in the hospital right now

is. If they think a biopsy would somehow help determine that then they

should say why and how. But there would appear to be multiple issues

going on.

> >

> > I have nt been on for a couple of days because I am in he Hospital ?

> It

> > is the second time this year . It seems I can tel hen this will

> > happen . It will get harder and harder to get around . Till Finley I

> > cant stand up . And same hing this time ICU not as long a before .

But

> > they cant tell what s going on ? The Dr said he wanted to give me

> > biopsy and said my lungs are in bad shape . He said that if i get a

> > hole in my lung I might not come off he respirators They want to do

it

> > so they can tell what kind of fibrosis I have I decided against it /

> > He will send me to a clinic to see if thy can find a steroid that

Wil

> > work . What does anyone At thee think I should do ? I am only 61 and

> > do no want to spend the rest of my life on receptor But can keep

> > winding up at the hospital every month , Thanks . Trying to put more

> > videos of m grandson on . God bless you all :Walt

> >

>