Re: Question for the group...

[Guest guest]

Hi Annette,

I too was treated for asthma for about 4 years before they confirmed-because of a bad case of bronchitus/xray that i had Pf & of course then the lung biopsy/totally confirmed it. Do you suffer from shortness of breath or tightness in your chest? Do u have scarring on your lungs? & does the dr say he hears the cracklin' sound on your lungs?

Dot/42/UIP10/08/Sa,TX

Subject: Question for the group...To: Breathe-Support Date: Wednesday, September 9, 2009, 11:54 AM

Hi everyone, I read all the posting but don't normally post, but I have a few questions after seeing my pulmodude yesterday and I'm hoping you can help me. I have been seeing my lung dr. for about 10 years now for asthma and about the last 8 months I've been getting worse. He started running test and noticed my 02 was dropping, so now I'm on oxygen 24/7. He also did ekg and said that was not normal, so he sent me to a cardio dr. because he thought I had pulmonary hypertension. After many tests and a heart cath. later, cardio said I had pulmonary fibrosis and that I was hypoxic. My pulmodude does not believe I have fibrosis because he has done several CT's and x-rays and has not seen anything. So he called the cardio. she repeated what she saw again and also she put it into a report. Anyhow, now my lung dr. is scheduling me for a V/Q scan and a couple of blood test because he doesn't believe I don't have PH....does this sound normal to you....Also,

they did three ABG's in the same day and they started at 87 and ended with 82. Lung dr. said he has never seen someone's blood gases doing that...I would appreciate any thoughts you have...I'm trying to understand what is going on and if any of you have gone through this. Hope to talk with you all. Annette

[Guest guest]

Hi Dorothy,

Yes, I'm always short of breath and on oxygen 24/7 and the cardio said when she

did the heart and lung cath. she saw scarring in my capillaries but my lung dr.

doesn't want to believe it. I think that is why he is doing the V/Q scan instead

of a tests for fibrosis. For the last couple of months they have been doing lots

of test for PH but the pressures were only 11 but my 02 was 82 with blood

gases....but the first thing the cardio said was have you been exposed to a

chemical and I told her yes, two years ago...that was good enough for her and

she stopped the procedure and said you are hypoxic and have pulmonary

fibrosis....sorry to be rambling on but I don't understand why my lung dr. isn't

do tests on fibrosis...isn't the V/Q for hypertension????

Thanks for listening....I really need to talk with people that understand this

disease...thanks again. Annette

---- Dorothy Delarosa wrote:

> Hi Annette,

> I too was treated for asthma for about 4 years before they confirmed-because

of a bad case of bronchitus/xray that i had Pf & of course then the lung

biopsy/totally confirmed it. Do you suffer from shortness of breath or tightness

in your chest? Do u have scarring on your lungs? & does the dr say he hears the

cracklin' sound on your lungs?

> Dot/42/UIP10/08/Sa,TX

>

>

>

>

>

> Subject: Question for the group...

> To: Breathe-Support

> Date: Wednesday, September 9, 2009, 11:54 AM

>

>

>  

>

>

>

> Hi everyone, I read all the posting but don't normally post, but I have a few

questions after seeing my pulmodude yesterday and I'm hoping you can help me. I

have been seeing my lung dr. for about 10 years now for asthma and about the

last 8 months I've been getting worse. He started running test and noticed my 02

was dropping, so now I'm on oxygen 24/7. He also did ekg and said that was not

normal, so he sent me to a cardio dr. because he thought I had pulmonary

hypertension. After many tests and a heart cath. later, cardio said I had

pulmonary fibrosis and that I was hypoxic. My pulmodude does not believe I have

fibrosis because he has done several CT's and x-rays and has not seen anything.

So he called the cardio. she repeated what she saw again and also she put it

into a report. Anyhow, now my lung dr. is scheduling me for a V/Q scan and a

couple of blood test because he doesn't believe I don't have PH....does this

sound normal to you....Also, they

> did three ABG's in the same day and they started at 87 and ended with 82.

Lung dr. said he has never seen someone's blood gases doing that...I would

appreciate any thoughts you have...I'm trying to understand what is going on and

if any of you have gone through this.

>

> Hope to talk with you all.

> Annette

>

>

>

>

>

>

>

>

>

>

>

>

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>

[Guest guest]

The testing the cardiologist is doing sounds quite normal. The catheter

for Pulmonary Hypertension and the VQ for the possibility of any blood

clots.

Now as to PF, you need to see another pulmonologist for a second

opinion, preferably at an ILD center. Are the CT's, HRCT? There are so

many ways to do them and any ILD center will redo their own. You haven't

said what the CT's show. But you have conflicting opinions at this point

and really need a second pulmonologist opinion.

Now, I can't see how any of the cardio testing would indicate PF or not

PF. Thats really not its design. It may be from the cardiologists

experience he suspects. But the CT's, done right, are much more

indicative. I'm hoping you're having PFT's as well. This is one place

they can also be very helpful as they will be very different for a

restrictive disease such as PF versus an obstructive disease such as

COPD.

>

> Hi everyone, I read all the posting but don't normally post, but I

have a few questions after seeing my pulmodude yesterday and I'm hoping

you can help me. I have been seeing my lung dr. for about 10 years now

for asthma and about the last 8 months I've been getting worse. He

started running test and noticed my 02 was dropping, so now I'm on

oxygen 24/7. He also did ekg and said that was not normal, so he sent me

to a cardio dr. because he thought I had pulmonary hypertension. After

many tests and a heart cath. later, cardio said I had pulmonary fibrosis

and that I was hypoxic. My pulmodude does not believe I have fibrosis

because he has done several CT's and x-rays and has not seen anything.

So he called the cardio. she repeated what she saw again and also she

put it into a report. Anyhow, now my lung dr. is scheduling me for a V/Q

scan and a couple of blood test because he doesn't believe I don't have

PH....does this sound normal to you....Also, they did three ABG's in the

same day and they started at 87 and ended with 82. Lung dr. said he has

never seen someone's blood gases doing that...I would appreciate any

thoughts you have...I'm trying to understand what is going on and if any

of you have gone through this.

>

> Hope to talk with you all.

> Annette

>

[Guest guest]

In June my lung dr. ordered a CT for clots and it came back normal, so I don't

understand why he has ordered a V/Q scan for clots again. My lung dr. consulted

with another lung dr. and he suggested the V/Q...As for pft's they stopped doing

them about 8 months ago. I couldn't stop coughing after the test but the numbers

were always low.

It appears there is a bit of back and forth between the lung and heart dr. I'm

just tired of all the testing and wish they would make up their mind.

Thanks for your advice, I appreciate it.

Annette

---- brucemoreland wrote:

> The testing the cardiologist is doing sounds quite normal. The catheter

> for Pulmonary Hypertension and the VQ for the possibility of any blood

> clots.

>

> Now as to PF, you need to see another pulmonologist for a second

> opinion, preferably at an ILD center. Are the CT's, HRCT? There are so

> many ways to do them and any ILD center will redo their own. You haven't

> said what the CT's show. But you have conflicting opinions at this point

> and really need a second pulmonologist opinion.

>

> Now, I can't see how any of the cardio testing would indicate PF or not

> PF. Thats really not its design. It may be from the cardiologists

> experience he suspects. But the CT's, done right, are much more

> indicative. I'm hoping you're having PFT's as well. This is one place

> they can also be very helpful as they will be very different for a

> restrictive disease such as PF versus an obstructive disease such as

> COPD.

>

>

> >

> > Hi everyone, I read all the posting but don't normally post, but I

> have a few questions after seeing my pulmodude yesterday and I'm hoping

> you can help me. I have been seeing my lung dr. for about 10 years now

> for asthma and about the last 8 months I've been getting worse. He

> started running test and noticed my 02 was dropping, so now I'm on

> oxygen 24/7. He also did ekg and said that was not normal, so he sent me

> to a cardio dr. because he thought I had pulmonary hypertension. After

> many tests and a heart cath. later, cardio said I had pulmonary fibrosis

> and that I was hypoxic. My pulmodude does not believe I have fibrosis

> because he has done several CT's and x-rays and has not seen anything.

> So he called the cardio. she repeated what she saw again and also she

> put it into a report. Anyhow, now my lung dr. is scheduling me for a V/Q

> scan and a couple of blood test because he doesn't believe I don't have

> PH....does this sound normal to you....Also, they did three ABG's in the

> same day and they started at 87 and ended with 82. Lung dr. said he has

> never seen someone's blood gases doing that...I would appreciate any

> thoughts you have...I'm trying to understand what is going on and if any

> of you have gone through this.

> >

> > Hope to talk with you all.

> > Annette

> >

>

>

[Guest guest]

Annette

It's not a matter of how low the numbers are on a PFT but the

relationship between FEV1 and FVC as well as DLCO if they get a good

reading on it. But DLCO, according to my doctor, is the most

inconsistent.

VQ will show some things a CT won't. I'm assuming the CT for clots was

with contrast? I can't have contrast so have to have the VQ.

A VQ is actually two tests. One is the Ventilation scan and you inhale

gas and it shows areas of the lungs not receiving enough air or

retaining too much. The other is the Perfusion scan which uses a

radioactive tracer to identify areas of the lung not getting enough

blood.

The VQ may or may not provide more information. They feel it may so I'd

go with it. Meanwhile I'd figure out a plan for a second pulmonology

review to firm up the diagnosis. I know all the testing is tiring, but

some of it is eliminating some serious potential worries. For instance,

I just had a VQ and a Right Heart Catheter and the relief to know I

don't have PH and don't have an embolism is more than worth the time and

effort of testing. I am now awaiting the results of my Cardiac MRI and

hoping they are as good. But the echocardiogram which started all this

is a very limited tool. Thank goodness in this case there are more

accurate tests which tend to refute some of the echo findings.

> > >

> > > Hi everyone, I read all the posting but don't normally post, but I

> > have a few questions after seeing my pulmodude yesterday and I'm

hoping

> > you can help me. I have been seeing my lung dr. for about 10 years

now

> > for asthma and about the last 8 months I've been getting worse. He

> > started running test and noticed my 02 was dropping, so now I'm on

> > oxygen 24/7. He also did ekg and said that was not normal, so he

sent me

> > to a cardio dr. because he thought I had pulmonary hypertension.

After

> > many tests and a heart cath. later, cardio said I had pulmonary

fibrosis

> > and that I was hypoxic. My pulmodude does not believe I have

fibrosis

> > because he has done several CT's and x-rays and has not seen

anything.

> > So he called the cardio. she repeated what she saw again and also

she

> > put it into a report. Anyhow, now my lung dr. is scheduling me for a

V/Q

> > scan and a couple of blood test because he doesn't believe I don't

have

> > PH....does this sound normal to you....Also, they did three ABG's in

the

> > same day and they started at 87 and ended with 82. Lung dr. said he

has

> > never seen someone's blood gases doing that...I would appreciate any

> > thoughts you have...I'm trying to understand what is going on and if

any

> > of you have gone through this.

> > >

> > > Hope to talk with you all.

> > > Annette

> > >

> >

> >

>

[Guest guest]

annnette

sounds like you need a second pulmonary doc

if you live near a hospital that has a pulmonary department specializing in interstitial lung diseases, go there

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Question for the group...To: Breathe-Support Cc: "brucemoreland" Date: Wednesday, September 9, 2009, 6:37 PM

Hi Bruce,When my lung doctor does the PFT's on me, he never says anything other than your numbers are about the same as the last time...but he has said there appears to be no obstruction. ..I never thought to ask about any numbers due to thinking my only problem was asthma...but now that fibrosis and hypertension are becoming part of this dx. if I was to have another PFT done, I would ask to see the numbers you have mentioned.The CT I had done a couple of months ago was with contrast and it did not show any clots at that time. I guess I'm questioning why he would want to test for them again, plus, the cardio would have seen them when she was doing the heart and lung cath. Does it surprise you at all the Lung doctor is questioning what the heart doctor told him....and it doesn't sound like the VQ is going to help with findings of fibrosis....Thanks for giving me some insight....Annette---- brucemoreland <brucemoreland@ gmail.com> wrote: > Tool of PFT's. Most of us look at our FVC, FEV1, TLC and DLCO and> especially the percentages. One thing often not mentioned is FEV1/FVC.> In a healthy person that number is around 80%. In a person with> obstructive lung disease it tends to be lower. So, while by no means> definitive, if a doctor did your PFT's and your FEV1/FVC was 60%, then> at the least he'd look for some obstructive disease, whether in addition> to your restrictive disease or instead of.> Mine has always been from 89-98%. I suspect we have many here where that> number exceeds 100% as I do know I have considerable sinus blockage> interfering too.> > > > > > >> > > > > Hi

everyone, I read all the posting but don't normally post, but> I> > > > have a few questions after seeing my pulmodude yesterday and I'm> > hoping> > > > you can help me. I have been seeing my lung dr. for about 10 years> > now> > > > for asthma and about the last 8 months I've been getting worse. He> > > > started running test and noticed my 02 was dropping, so now I'm on> > > > oxygen 24/7. He also did ekg and said that was not normal, so he> > sent me> > > > to a cardio dr. because he thought I had pulmonary hypertension.> > After> > > > many tests and a heart cath. later, cardio said I had pulmonary> > fibrosis> > > > and that I was hypoxic. My pulmodude does not believe I have> > fibrosis> > > > because he has done several CT's and x-rays

and has not seen> > anything.> > > > So he called the cardio. she repeated what she saw again and also> > she> > > > put it into a report. Anyhow, now my lung dr. is scheduling me for> a> > V/Q> > > > scan and a couple of blood test because he doesn't believe I don't> > have> > > > PH....does this sound normal to you....Also, they did three ABG's> in> > the> > > > same day and they started at 87 and ended with 82. Lung dr. said> he> > has> > > > never seen someone's blood gases doing that...I would appreciate> any> > > > thoughts you have...I'm trying to understand what is going on and> if> > any> > > > of you have gone through this.> > > > >> > > > > Hope to talk with you all.>

> > > > Annette> > > > >> > > >> > > >> > >> >> >

[Guest guest]

Hi Joyce,

I agree with you and Bruce...I need to see another doctor....my lung doctor said

someone with asthma shouldn't need oxygen...that should have been his first clue

when my 02 dropped into the 70's and I've been on oxygen ever since.

Thank you for the information, I appreciate it.

Annette

---- Joyce T Rosenberg wrote:

> annnette

> sounds like you need a second pulmonary doc

>  

> if you live near a hospital that has a pulmonary department specializing in

interstitial lung diseases, go there

>  

>  

>

>

>

> Pink Joyce R (IPF 3/06)  IFA 5/09 Pennsylvania

> Donate Life Listed 1/09 Inactive 4/09

> www.transplantfund.org

>

>

> > Tool of PFT's. Most of us look at our FVC, FEV1, TLC and DLCO and

> > especially the percentages. One thing often not mentioned is FEV1/FVC.

> > In a healthy person that number is around 80%. In a person with

> > obstructive lung disease it tends to be lower. So, while by no means

> > definitive, if a doctor did your PFT's and your FEV1/FVC was 60%, then

> > at the least he'd look for some obstructive disease, whether in addition

> > to your restrictive disease or instead of.

> > Mine has always been from 89-98%. I suspect we have many here where that

> > number exceeds 100% as I do know I have considerable sinus blockage

> > interfering too.

> >

> >

> > > > > >

> > > > > > Hi everyone, I read all the posting but don't normally post, but

> > I

> > > > > have a few questions after seeing my pulmodude yesterday and I'm

> > > hoping

> > > > > you can help me. I have been seeing my lung dr. for about 10 years

> > > now

> > > > > for asthma and about the last 8 months I've been getting worse. He

> > > > > started running test and noticed my 02 was dropping, so now I'm on

> > > > > oxygen 24/7. He also did ekg and said that was not normal, so he

> > > sent me

> > > > > to a cardio dr. because he thought I had pulmonary hypertension.

> > > After

> > > > > many tests and a heart cath. later, cardio said I had pulmonary

> > > fibrosis

> > > > > and that I was hypoxic. My pulmodude does not believe I have

> > > fibrosis

> > > > > because he has done several CT's and x-rays and has not seen

> > > anything.

> > > > > So he called the cardio. she repeated what she saw again and also

> > > she

> > > > > put it into a report. Anyhow, now my lung dr. is scheduling me for

> > a

> > > V/Q

> > > > > scan and a couple of blood test because he doesn't believe I don't

> > > have

> > > > > PH....does this sound normal to you....Also, they did three ABG's

> > in

> > > the

> > > > > same day and they started at 87 and ended with 82. Lung dr. said

> > he

> > > has

> > > > > never seen someone's blood gases doing that...I would appreciate

> > any

> > > > > thoughts you have...I'm trying to understand what is going on and

> > if

> > > any

> > > > > of you have gone through this.

> > > > > >

> > > > > > Hope to talk with you all.

> > > > > > Annette

> > > > > >

> > > > >

> > > > >

> > > >

> > >

> >

> >

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