Re: Hi there!- CHF and ILD? from a Newbie

[Guest guest]

Ann,

Welcome to the group and sorry you have reason to be here. When I was first hospitalized back in June I was in full blown congestive heart failure also. Being only 47 this was obviously cause for concern. They went over my heart with a fine tooth comb (bloodwork, EKG, ultrasound) and concluded that my cardiac issues were secondary to my pulmonary issues.

That has proven out over the last 5 months or so. My heart has recovered as the doctors have brought my lung disease symptoms under control. They tell me my heart now appears to be "normal" but I know I remain at high risk for CHF if/when my lung disease gets worse.

Do you know what the HRCT showed? Are you using oxygen? Have they done a 6 minute walk test? The prednisone is probably helping some with the cough. At least that's my experience. Hopefully you'll be lucky like I've been and have minimal side effects from the prednisone.

Make a list of questions to take to the doctor so that you get all the answers you're looking for. Again welcome to our little corner of the world. This is a wonderful supportive group of people! Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

Hi there!- CHF and ILD? from a Newbie

I'm new to this group andto the label of ILD. I had a bout ofCongestive Heart Failure in Sept and was gone over really well in thehospital for heart problems , naturally. They kept telling me me heartwas inexplicably well for someone with CHF. Finally my Cardio sent meto a Pulmo and he did 3 PF tests. They showed "Restictive" responseabout 67%. No problem with the gas exchange side. He put me onPredisone 30 mg and sent me for a HRCT. I see him on Friday to findout what's next. I have burning in my chest,somewhat relieved by thepred. I can't walk any distance without getting out of breath. I don'tcough as much any more either. I think I'm not too bad off... yet(?).Does anyone know about the CHF angle? I wonder which I had first. Ifelt crummy with vague symptoms for only 2 months before I came downwith the CHF.My name is Ann. Live near Houston.

[Guest guest]

Hello. I just got back from both my pulmo (11:00am)

and my cardio (2:00pm) today. My cardio says that

when I desaturate my heart skips beats (PVC's) I have

more than 3 cupletts in a row. They put me on a beta

blocker (which is highly unusual for someone with

fibrosis) but cardio felt the risk of PVC's outweighed

the side effects of beta blocker on lungs. That side

affect being wheezing, coughing. I think we finally

have it down to a manageble combination. So my

repsonse is that more than likely the heart is always

involved in our situation. I keep on hanging on.

(ipf 02/06)

--- Beth wrote:

> Ann,

>

> Welcome to the group and sorry you have reason to be

> here. When I was first hospitalized back in June I

> was in full blown congestive heart failure also.

> Being only 47 this was obviously cause for concern.

> They went over my heart with a fine tooth comb

> (bloodwork, EKG, ultrasound) and concluded that my

> cardiac issues were secondary to my pulmonary

> issues.

>

> That has proven out over the last 5 months or so.

> My heart has recovered as the doctors have brought

> my lung disease symptoms under control. They tell

> me my heart now appears to be " normal " but I know I

> remain at high risk for CHF if/when my lung disease

> gets worse.

>

> Do you know what the HRCT showed? Are you using

> oxygen? Have they done a 6 minute walk test? The

> prednisone is probably helping some with the cough.

> At least that's my experience. Hopefully you'll be

> lucky like I've been and have minimal side effects

> from the prednisone.

>

> Make a list of questions to take to the doctor so

> that you get all the answers you're looking for.

> Again welcome to our little corner of the world.

> This is a wonderful supportive group of people!

>

> Beth (Fibrotic NSIP 06/06)

>

> Draw close. Hold hands. Life is short. God is good.

>

>

>

> Hi there!- CHF and ILD?

> from a Newbie

>

> I'm new to this group andto the label of ILD. I had

> a bout of

> Congestive Heart Failure in Sept and was gone over

> really well in the

> hospital for heart problems , naturally. They kept

> telling me me heart

> was inexplicably well for someone with CHF. Finally

> my Cardio sent me

> to a Pulmo and he did 3 PF tests. They showed

> " Restictive " response

> about 67%. No problem with the gas exchange side. He

> put me on

> Predisone 30 mg and sent me for a HRCT. I see him on

> Friday to find

> out what's next. I have burning in my chest,somewhat

> relieved by the

> pred. I can't walk any distance without getting out

> of breath. I don't

> cough as much any more either. I think I'm not too

> bad off... yet(?).

> Does anyone know about the CHF angle? I wonder which

> I had first. I

> felt crummy with vague symptoms for only 2 months

> before I came down

> with the CHF.

>

> My name is Ann. Live near Houston.

>

>

>

[Guest guest]

Hi Ann,

my name is and i live in the channelview area. what area near

houston are you?

prednisone! yuck! i am being weaned off of that right now. it

really does nothing for ILD's unless you have imflammation.

i am much younger than most of the group....i noticed you said

CHF...that is what my grandmother died from a few yrs ago so i am

assuming you too are older. ( i could be wrong, it does happen

occassionally) hehe

they have said ILD...have they determined which one??? there are so

many. and so many are wrongly diagnosed at first, not wrong about

the ILD but wrong about which specific one it is. i was and so were

a few others on the board.

if you have any questions shout 'em out! we'll help in any way we

can.

EG

>

> I'm new to this group andto the label of ILD. I had a bout of

> Congestive Heart Failure in Sept and was gone over really well in

the

> hospital for heart problems , naturally. They kept telling me me

heart

> was inexplicably well for someone with CHF. Finally my Cardio sent

me

> to a Pulmo and he did 3 PF tests. They showed " Restictive " response

> about 67%. No problem with the gas exchange side. He put me on

> Predisone 30 mg and sent me for a HRCT. I see him on Friday to find

> out what's next. I have burning in my chest,somewhat relieved by

the

> pred. I can't walk any distance without getting out of breath. I

don't

> cough as much any more either. I think I'm not too bad off... yet

(?).

> Does anyone know about the CHF angle? I wonder which I had first.

I

> felt crummy with vague symptoms for only 2 months before I came

down

> with the CHF.

>

> My name is Ann. Live near Houston.

>

[Guest guest]

Thanks you all for the responses! In my readings about ILD on the net- I got no where with the combination of CHF and ILD. No, I don't know what type I have. No real risk factors for anything. All the immuno diseases were ruled out by lab tests in Sept. No chemical exposures, really. I do have 6 chickens, though. And wet straw in the barn probably.I really like my Pulmo Dr. and I'll give him my faith for now. I see him on Friday and find out what the CT shows. I haven't had a 6 min walk, but I was thinking of doing it at home just to see while I'm waiting. How would you go about it? Any minimun speed? I've got a place to do it. I really don't think I'll get very far, but I'm really curious. Anyone do this on their own?I live South west of Houston , in Wharton County. Little itty bitty town. I go see the Drs in Sugar Land.As far as symptoms- The Pred has really worked, but there still is a "wall" I can't go beyond. And even talking gets me out of

breath. How bad is that? I'm worried. I love to gab when I get the chance.Ann

Sponsored LinkGet a free Motorola Razr! Today Only! Choose Cingular, Sprint, Verizon, Alltel, or T-Mobile.

[Guest guest]

Hi Ann and Welcome,

ILD is Interstitial Lung Disease. Envelopes a whole battery of fibrotic diseases.

Are you on oxygen yet???

I am interested in what you find out about Congestive Heart Failure. I don't think it ever happens 'first'.

Hugs, Joyce

PF 1997 Bronchiectasis 2004 >> I'm new to this group andto the label of ILD. I had a bout of> Congestive Heart Failure in Sept and was gone over really well in the> hospital for heart problems , naturally. They kept telling me me heart> was inexplicably well for someone with CHF. Finally my Cardio sent me> to a Pulmo and he did 3 PF tests. They showed "Restictive" response> about 67%. No problem with the gas exchange side. He put me on> Predisone 30 mg and sent me for a HRCT. I see him on Friday to find> out what's next. I have burning in my chest,somewhat relieved by the> pred. I can't walk any distance without getting out of breath. I don't> cough as much any more either. I think I'm not too bad off... yet(?).> Does anyone know about the CHF angle? I wonder which I had first. I> felt crummy with vague symptoms for only 2 months before I came down> with the CHF.> > My name is Ann. Live near Houston.>

[Guest guest]

,Ann;

Prednisone actually works quite well for most ild's. It has little success with ipf. Pf is only one of many types of ild's.

Gordon ipf/uip 12/03

Re: Hi there!- CHF and ILD? from a Newbie

Hi Ann,my name is and i live in the channelview area. what area near houston are you?prednisone! yuck! i am being weaned off of that right now. it really does nothing for ILD's unless you have imflammation.i am much younger than most of the group....i noticed you said CHF...that is what my grandmother died from a few yrs ago so i am assuming you too are older. ( i could be wrong, it does happen occassionally) hehethey have said ILD...have they determined which one??? there are so many. and so many are wrongly diagnosed at first, not wrong about the ILD but wrong about which specific one it is. i was and so were a few others on the board.if you have any questions shout 'em out! we'll help in any way we can. EG>> I'm new to this group andto the label of ILD. I had a bout of> Congestive Heart Failure in Sept and was gone over really well in the> hospital for heart problems , naturally. They kept telling me me heart> was inexplicably well for someone with CHF. Finally my Cardio sent me> to a Pulmo and he did 3 PF tests. They showed "Restictive" response> about 67%. No problem with the gas exchange side. He put me on> Predisone 30 mg and sent me for a HRCT. I see him on Friday to find> out what's next. I have burning in my chest,somewhat relieved by the> pred. I can't walk any distance without getting out of breath. I don't> cough as much any more either. I think I'm not too bad off... yet(?).> Does anyone know about the CHF angle? I wonder which I had first. I> felt crummy with vague symptoms for only 2 months before I came down> with the CHF.> > My name is Ann. Live near Houston.>

[Guest guest]

Ann,

Interstitial lung disease takes a toll on every single part of our bodies, right down to our fingernails and toenails. It's especially hard on our hearts.

And yes CHF can happen to anyone of any age when this kind of lung disease is involved. (Watch it with the "older" comments baby girl !!!) Remember I'm only 47 and I was in full blown CHF when I was admitted to the hospital back on Memorial Day. I've got not a single sign of it now thanks to the control of my symptoms by medication, oxygen and exercise)

Ann, as far as the 6 minute walk test goes, unless you have a oxymeter it's not something you could do on your own. Personally I wouldn't do it on my own anyway. Until you have a clearer idea of what your limitations are and whether you need supplemental oxygen I'd prefer to err on the side of safety. If you "desat" too quickly or too drastically you can cause a "cardiac event" You made me remember how sob I used to get just chatting on the telephone. I hated that. Now that I'm on oxygen, that really doesn't happen anymore. Thank God, as I love to chat too!! Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

Re: Hi there!- CHF and ILD? from a Newbie

Thanks you all for the responses! In my readings about ILD on the net- I got no where with the combination of CHF and ILD. No, I don't know what type I have. No real risk factors for anything. All the immuno diseases were ruled out by lab tests in Sept. No chemical exposures, really. I do have 6 chickens, though. And wet straw in the barn probably.I really like my Pulmo Dr. and I'll give him my faith for now. I see him on Friday and find out what the CT shows. I haven't had a 6 min walk, but I was thinking of doing it at home just to see while I'm waiting. How would you go about it? Any minimun speed? I've got a place to do it. I really don't think I'll get very far, but I'm really curious. Anyone do this on their own?I live South west of Houston , in Wharton County. Little itty bitty town. I go see the Drs in Sugar Land.As far as symptoms- The Pred has really worked, but there still is a "wall" I can't go beyond. And even talking gets me out of

breath. How bad is that? I'm worried. I love to gab when I get the chance.Ann

Sponsored LinkGet a free Motorola Razr! Today Only! Choose Cingular, Sprint, Verizon, Alltel, or T-Mobile.

[Guest guest]

-Hi - My husband, Bud, was diagnosed with CHF first, and then ILD,

and IPF was to follow, within a 3 year period. Lots of different

doctors and different tests, including lung arthritis, which we had

never heard of, and which he did not have. A most hellacious lung

biopsy determined IPF. Diabetes adds to the lovely mix. Prednisone

turned out to be a huge no-no for the blood sugars.

This group has been a God-send.

Happy Anniversary, Leanne et al.

Love and light, Joanie

- In Breathe-Support , " Joyce " wrote:

>

>

> Hi Ann and Welcome,

>

> ILD is Interstitial Lung Disease. Envelopes a whole battery of

fibrotic

> diseases.

>

> Are you on oxygen yet???

>

> I am interested in what you find out about Congestive Heart

Failure. I

> don't think it ever happens 'first'.

>

> Hugs, Joyce

>

> PF 1997 Bronchiectasis 2004

>

> >

> > I'm new to this group andto the label of ILD. I had a bout of

> > Congestive Heart Failure in Sept and was gone over really well

in the

> > hospital for heart problems , naturally. They kept telling me me

heart

> > was inexplicably well for someone with CHF. Finally my Cardio

sent me

> > to a Pulmo and he did 3 PF tests. They showed " Restictive "

response

> > about 67%. No problem with the gas exchange side. He put me on

> > Predisone 30 mg and sent me for a HRCT. I see him on Friday to

find

> > out what's next. I have burning in my chest,somewhat relieved by

the

> > pred. I can't walk any distance without getting out of breath. I

don't

> > cough as much any more either. I think I'm not too bad off... yet

(?).

> > Does anyone know about the CHF angle? I wonder which I had

first. I

> > felt crummy with vague symptoms for only 2 months before I came

down

> > with the CHF.

> >

> > My name is Ann. Live near Houston.

> >

>