Re: Doctors visit....:(

[Guest guest]

Vicky,

I'm so sorry you had such a discouraging doctor visit. I know you must be feeling very sad and helpless. I hate what we're all going through.... Are you going to be evaluated for the transplant possibility? Such a big decision to make when you're under more stress than you've ever been under...

Please know that we all love you and we're all praying for you and your family every day! God bless you Vicky!

Beth IPF 06/06Draw close. Hold hands. Life is short. God is good.

Doctors visit....

~sigh~ What a day. I went to see specialist number 6 today, a Hemotologist. We spent 2 1/2 hours with him, at least he didn't rush me. What he told me though wasn't very encouraging. First he told me I'm a very very critically ill woman, DUH. He said a cold could kill me, the flu, pneunomia, etc. He told my husband that it looks a little too late to do much for me, that I have "Hamman-Rich syndromeA syndrome involving acute or chronic interstitial fibrosis of the lung and giving rise to serious right-sided heart failure and cor pulmonale."He said my hope would be a lung and heart transplant. The fact that I'm having more trouble breathing indicates that I'm probably in the end stages. He then mentioned having me tested for hemochromatosis , which involves DNA testing etc. But in return I have to get off aspirin ( which I take for my heart) for 2 weeks. He said if I had that disease, they could exchange

all my blood for new blood and that MIGHT slow down the bleeding in my lungs. I would also become very anemic. I have to admit, I cried when I left the office, I hoped I would be around for a few years but as I said before, now I'm praying for 1 more Christmas. I'm so worried about my husband, he's never been on his own before. Anyways, just wanted to let ya'll know. Also, here's a link I came across, its a medical dictionary online, it might be of help to some of you. http://encyclopedia .thefreedictiona ry.com.Thank you, all of you for your support and encouragement you have given me. It has meant the world to me.....Vicky81856 IPH/PF 4/06

[Guest guest]

Sher says.... ...you nut Joyce!

Re: Doctors visit....

,

Re: ....i wason it most of the day and night last night...woke up with the danghose twisted around my neck......any suggestions on how to keep thatfrom happening anyone???? Yeah, LAY STILL

Just trying to be amusing...Joyce

> >> > ~sigh~ What a day. I went to see specialist number 6 today, a > > Hemotologist. We spent 2 1/2 hours with him, at least he didn't > rush > > me. What he told me though wasn't very encouraging. First he told > me > > I'm a very very critically ill woman, DUH. He said a cold could > kill > > me, the flu, pneunomia, etc. He told my husband that it looks! a > little > > too late to do much for me, that I have "Hamman-Rich syndrome> > > > A syndrome involving acute or chronic interstitial fibrosis of the > lung > > and giving rise to serious right-sided heart failure and cor > pulmonale."> > > > He said my hope would be a lung and heart transplant. The fact > that I'm > > having more trouble breathing indicates that I'm probably in the > end > > stages. > > > > He then mentioned having me tested for hemochromatosis , which > > involves DNA testing etc. But in return I have to get off aspirin > ( > > which I take for my heart) for 2 weeks. He said if I had that > disease, > > they could exchange all my blood for new blood and that MIGHT slow > down > > the bleeding in my lungs. I would also become very anemic. > > > >! ; I have to admit, I cried when I left the office, I hoped I would > be > > around for a few years but as I said before, now I'm praying for 1 > more > > Christmas. I'm so worried about my husband, he's never been on > his own > > before. Anyways, just wanted to let ya'll know. Also, here's a > link I > > came across, its a medical dictionary online, it might be of help > to > > some of you. http://encyclopedia.thefreedictionary.com.> > Thank you, all of you for your support and encouragement you have > > given me. It has meant the world to me.....> > > > Vicky81856 IPH/PF 4/06> >>

[Guest guest]

lol laying still with a 6 yr old and 2 dogs on the bed is almost

impossible miss smarty pants lol

jaime pf 10-05

> > >

> > > ~sigh~ What a day. I went to see specialist number 6 today, a

> > > Hemotologist. We spent 2 1/2 hours with him, at least he didn't

> > rush

> > > me. What he told me though wasn't very encouraging. First he

told

> > me

> > > I'm a very very critically ill woman, DUH. He said a cold could

> > kill

> > > me, the flu, pneunomia, etc. He told my husband that it looks a

> > little

> > > too late to do much for me, that I have " Hamman-Rich syndrome

> > >

> > > A syndrome involving acute or chronic interstitial fibrosis of

the

> > lung

> > > and giving rise to serious right-sided heart failure and cor

> > pulmonale. "

> > >

> > > He said my hope would be a lung and heart transplant. The fact

> > that I'm

> > > having more trouble breathing indicates that I'm probably in

the

> > end

> > > stages.

> > >

> > > He then mentioned having me tested for hemochromatosis , which

> > > involves DNA testing etc. But in return I have to get off

aspirin

> > (

> > > which I take for my heart) for 2 weeks. He said if I had that

> > disease,

> > > they could exchange all my blood for new blood and that MIGHT

slow

> > down

> > > the bleeding in my lungs. I would also become very anemic.

> > >

> > > I have to admit, I cried when I left the office, I hoped I

would

> > be

> > > around for a few years but as I said before, now I'm praying

for 1

> > more

> > > Christmas. I'm so worried about my husband, he's never been on

> > his own

> > > before. Anyways, just wanted to let ya'll know. Also, here's a

> > link I

> > > came across, its a medical dictionary online, it might be of

help

> > to

> > > some of you. http://encyclopedia.thefreedictionary.com.

> > > Thank you, all of you for your support and encouragement you

have

> > > given me. It has meant the world to me.....

> > >

> > > Vicky81856 IPH/PF 4/06

> > >

> >

>

[Guest guest]

canula was still in my nose....it was the hose wrapped around my

neck. lol and the top of my head!

jaime pf 10-05

>

> Hi and everyone,

>

> I was discouraged last night but then I had this wave of comfort,

peace from

> God above come over my soul, oh what a sweet sweet feeling. I

know God is

> in control. As for thr o2, I have to tape mine to my face when I

sleep or it

> ends up on my nose..

>

> Vicky IPH/PF 4/06

>

[Guest guest]

Yeah, That's what I'm thinkin too!!! No problem..be still..

,

Re: ....i was

on it most of the day and night last night...woke up with the dang

hose twisted around my neck......any suggestions on how to keep that

from happening anyone????

Yeah, LAY STILL

Just trying to be amusing...Joyce

>

> i had posted info on Hamman Rich syndrome a while back vicky. i'll

> find the post and email it to you. a dr friend of mine had told me

> about it and i looked it up. quite interesting reading by the way.

>

> i am sorry you are going through so much, i'm sorry we all are,

> including myself. but girly, i do my very best at trying to keep my

> chin up as much as i can .....it does get to me every now and then

> though. then of course i come here and vent.

>

> i had a very hard day yesterday myself. that was the first time i

> have had to use my O2 for more than a few hours at a time....i was

> on it most of the day and night last night...woke up with the dang

> hose twisted around my neck......any suggestions on how to keep that

> from happening anyone????

>

> it does

[Guest guest]

Dear Vicky:

I am so very sorry to hear such sad news. I know you must feel devastated and in shock as well. I truly empathize with you on your worry about your husband. I think most of us women feel the same. We know how much our hubby's depend on us and need us, even just to do nothing but be there is important to them. My husband opened up slightly for the first time today. Up till now he has been in flagrant denial. He said" I am going to be lost without you and the thought devastates me so that I cant even let myself think about it. I know I wont live long without you and dont want to." Now you can imagine what that did to my heart. I feel so guilty for being sick and you may feel that way to sometimes. All we can do is our best in trying to sustain our life and try to enjoy what life we have now. If you need to vent I am sure willing to listen. I am sending hugs to both of you.

Carolyn

To: Breathe-Support Sent: Tuesday, September 5, 2006 10:58:50 PMSubject: Doctors visit....

~sigh~ What a day. I went to see specialist number 6 today, a Hemotologist. We spent 2 1/2 hours with him, at least he didn't rush me. What he told me though wasn't very encouraging. First he told me I'm a very very critically ill woman, DUH. He said a cold could kill me, the flu, pneunomia, etc. He told my husband that it looks a little too late to do much for me, that I have "Hamman-Rich syndromeA syndrome involving acute or chronic interstitial fibrosis of the lung and giving rise to serious right-sided heart failure and cor pulmonale."He said my hope would be a lung and heart transplant. The fact that I'm having more trouble breathing indicates that I'm probably in the end stages. He then mentioned having me tested for hemochromatosis , which involves DNA testing etc. But in return I have to get off aspirin ( which I take for my heart) for 2 weeks. He said if I had that disease, they could exchange all my blood for new blood and that MIGHT slow down the bleeding in my lungs. I would also become very anemic. I have to admit, I cried when I left the office, I hoped I would be around for a few years but as I said before, now I'm praying for 1 more Christmas. I'm so worried about my husband, he's never been on his own before. Anyways, just wanted to let ya'll know. Also, here's a link I came across, its a medical dictionary online, it might be of help to some of you. http://encyclopedia .thefreedictiona ry.com.Thank you, all of you for your support and encouragement you have given me. It has meant the world to me.....Vicky81856 IPH/PF 4/06