Re: Hi All - Getting a Biopsy - very nervous

[Guest guest]

Dave

Have you been to the Interstitial Lung Disease group at the University

of Miami. They are an IPF Center of Excellence? Was your CT a High

Resolution CT? I ask these questions because I'd personally go there

before a VATS, unless I was very sure of my current pulmonologist's

experience with PF. Most don't have much experience with the diseases.

Now, as to VATS. The surgeon always makes it sound simple. I had it and

I'm glad I did but it's an invasive procedure and many suffer setbacks

and/or pain and complications from it. For others its very easy. The

main thing though is what do they hope to learn and what do you intend

to do with that information? Will you pursue different treatment based

on its results? Also, please make sure your biopsy slides are read by a

pathologist at a second hospital, preferably an IPF center of

excellence. These are such major issues, second opinions are most

important.

As you have a possible situation of Farmer's Lung (Thermoactinomyces

Vulgaris), identifying the possible source would be most important and

assuring you were no longer exposed. You said PFT's normal, but do you

know what percentages your FVC and FEV1 were?

If you proceed with your VATS, the best of luck. Just don't think of it

as a walk in the park. If you're already seeing someone at the U of

Miami, then I'm happy for you. If not, I'd get a second opinion before

the VATS as while it probably is necessary, I'd want to be certain. If a

VATS hasn't been required for a year, why the sudden urging to have one?

Did anything change?

We welcome you aboard and feel free to ask as many questions as you come

up with.

>

> Hi, this is my first post. I am a 43 year old Male in Miami, FL. I

have been seeing my Pulmonologist for a year now and have had cat scans

every 3 months, blood tests, PFT - which they said showed normal

function, Bronchoscopy, a BAL and a hyposensitivity panel that showed

normal ranges except for Thermoactinomyces Vulgaris score of 26 (normal

is <13). I do not have any symptoms, maybe just a litle tired. The PF

was found by accident, had a CT of the abdomen and the radiologist

reported abnormal appearance of the lungs could be expression of

interstitial PR. Pulmonologist is not sure what is causing all the

inflamation in my lungs and the ground glass opacification in the lower

lobes. The lung cat scans show no significant change over the year. My

doctor wants a diagnosis. She sent me to a Lung Sergeon who examined me

and also wants to do the biopsy. I have a Video-assisted Thoracic

Surgery(wedge resection)for the biopsy in 2 weeks.

>

> Can anyone please give me their thoughts or experience on this

operation.

> Thanks, Dave

>

[Guest guest]

Bruce,

I am seeing the PF specialist at UM - Dr. Glassberg and all my tests, Dr's and

procedures are and will be done at University Of Miami. The original cat scan

of the abdomen I mention was a HR scan with iodine. The other scan done over the

past year have been regular ct scans and the radiologist keeps saying that there

is no differece from previous tests. My FVC is PRED 5.12 Best 4.88 and %PRED 95%

My FEV1 is 4.13, 3.99, and 97%. There will be a Pathologist in the next room

the Dr. said to check that they got a good piece. He also wants to do a

Broncoscomy at the same time.

I dont know why she wants it done all of the sudden. She previously said that

she would continue the CT for 2 years. Thanks, Dave

> >

> > Hi, this is my first post. I am a 43 year old Male in Miami, FL. I

> have been seeing my Pulmonologist for a year now and have had cat scans

> every 3 months, blood tests, PFT - which they said showed normal

> function, Bronchoscopy, a BAL and a hyposensitivity panel that showed

> normal ranges except for Thermoactinomyces Vulgaris score of 26 (normal

> is <13). I do not have any symptoms, maybe just a litle tired. The PF

> was found by accident, had a CT of the abdomen and the radiologist

> reported abnormal appearance of the lungs could be expression of

> interstitial PR. Pulmonologist is not sure what is causing all the

> inflamation in my lungs and the ground glass opacification in the lower

> lobes. The lung cat scans show no significant change over the year. My

> doctor wants a diagnosis. She sent me to a Lung Sergeon who examined me

> and also wants to do the biopsy. I have a Video-assisted Thoracic

> Surgery(wedge resection)for the biopsy in 2 weeks.

> >

> > Can anyone please give me their thoughts or experience on this

> operation.

> > Thanks, Dave

> >

>

[Guest guest]

Bruce,

I would also add that Dr. Glassberg is really a great Dr. and she really seems

to care about my well being. So I do trust her (with my life - I guess). But

just scared of the procedure.

> > >

> > > Hi, this is my first post. I am a 43 year old Male in Miami, FL. I

> > have been seeing my Pulmonologist for a year now and have had cat scans

> > every 3 months, blood tests, PFT - which they said showed normal

> > function, Bronchoscopy, a BAL and a hyposensitivity panel that showed

> > normal ranges except for Thermoactinomyces Vulgaris score of 26 (normal

> > is <13). I do not have any symptoms, maybe just a litle tired. The PF

> > was found by accident, had a CT of the abdomen and the radiologist

> > reported abnormal appearance of the lungs could be expression of

> > interstitial PR. Pulmonologist is not sure what is causing all the

> > inflamation in my lungs and the ground glass opacification in the lower

> > lobes. The lung cat scans show no significant change over the year. My

> > doctor wants a diagnosis. She sent me to a Lung Sergeon who examined me

> > and also wants to do the biopsy. I have a Video-assisted Thoracic

> > Surgery(wedge resection)for the biopsy in 2 weeks.

> > >

> > > Can anyone please give me their thoughts or experience on this

> > operation.

> > > Thanks, Dave

> > >

> >

>

[Guest guest]

Hi Dave.

Welcome to the Air Family. I'm sorry you had to look but glad you found us. As

lots and lots of questions about everything. Bruce is right. Absolutely ask

for a second lab to read your open lung biospy. That is really important. And

ask for a copy of both reports. Then ask lots more questions.

I had lots of extenuating circumstances when they did my VATS but it is not

pleasant under the best of circumstances.

Remember there are lots of different types of diagnoses and diseases represented

in our group so one size does not fit all but there is usually somebody else

around that matches whatever they find. I am a NSIP w/PF with lots of other

stuff just for fun. But they don't know why or when it started. We'll never

know why but we do know what thanks to the VATS and a couple of biopsy readings.

Hang in there Dave. Your doctor seems to be on top of things and is not just

blowing you off like some docs do.

S, Lubbock, TX

NSIP w/PF 12/2006 et al

> > > >

> > > > Hi, this is my first post. I am a 43 year old Male in Miami, FL. I

> > > have been seeing my Pulmonologist for a year now and have had cat scans

> > > every 3 months, blood tests, PFT - which they said showed normal

> > > function, Bronchoscopy, a BAL and a hyposensitivity panel that showed

> > > normal ranges except for Thermoactinomyces Vulgaris score of 26 (normal

> > > is <13). I do not have any symptoms, maybe just a litle tired. The PF

> > > was found by accident, had a CT of the abdomen and the radiologist

> > > reported abnormal appearance of the lungs could be expression of

> > > interstitial PR. Pulmonologist is not sure what is causing all the

> > > inflamation in my lungs and the ground glass opacification in the lower

> > > lobes. The lung cat scans show no significant change over the year. My

> > > doctor wants a diagnosis. She sent me to a Lung Sergeon who examined me

> > > and also wants to do the biopsy. I have a Video-assisted Thoracic

> > > Surgery(wedge resection)for the biopsy in 2 weeks.

> > > >

> > > > Can anyone please give me their thoughts or experience on this

> > > operation.

> > > > Thanks, Dave

> > > >

> > >

> >

>

[Guest guest]

Dave

I'm glad you are confident in her and upon research I see it is for good

reason. My caution was that there are thousands of great doctors with

very little experience with Pulmonary Fibrosis. Now, I see Dr. Glassberg

is with the University of Miami and so that gives me a much greater

comfort. In fact she is Principal Investigator within their Interstitial

Lung Disease Program and is quite active in research as well as national

speaking. For those on the board, she's also established a program in

cooperation with the College of Chest Physicians that focuses on the

increasing incidence of lung disease in college age women in Florida. I

do know we have several younger members here who live in Florida and

have PF. That program might be of interest to you.

I think it sounds like you're in great hands. Hopefully the cause of

your fibrosis has been removed from your life and any further

progression will be slow if at all.

Now, back to the VATS. People stay hospitalized anywhere from overnight

to many days. I had mine on Wednesday and got out on Sunday. Afterwards

you will be sore and you need to be very careful not to get pneumonia.

Otherwise, you may have some residual pain for days or months or even

years, but generally not too bad. Many feel immediately after like they

were fools to do such a thing. Just remember why you're doing it and

that you made a conscious educated choice. I do know that having my VATS

has played a significant role in my comfort with the choices I've made

since then. Also, the fact you're still overall quite healthy when

getting it should help. I was already on oxygen.

> > > >

> > > > Hi, this is my first post. I am a 43 year old Male in Miami, FL.

I

> > > have been seeing my Pulmonologist for a year now and have had cat

scans

> > > every 3 months, blood tests, PFT - which they said showed normal

> > > function, Bronchoscopy, a BAL and a hyposensitivity panel that

showed

> > > normal ranges except for Thermoactinomyces Vulgaris score of 26

(normal

> > > is <13). I do not have any symptoms, maybe just a litle tired. The

PF

> > > was found by accident, had a CT of the abdomen and the radiologist

> > > reported abnormal appearance of the lungs could be expression of

> > > interstitial PR. Pulmonologist is not sure what is causing all the

> > > inflamation in my lungs and the ground glass opacification in the

lower

> > > lobes. The lung cat scans show no significant change over the

year. My

> > > doctor wants a diagnosis. She sent me to a Lung Sergeon who

examined me

> > > and also wants to do the biopsy. I have a Video-assisted Thoracic

> > > Surgery(wedge resection)for the biopsy in 2 weeks.

> > > >

> > > > Can anyone please give me their thoughts or experience on this

> > > operation.

> > > > Thanks, Dave

> > > >

> > >

> >

>

[Guest guest]

Hi Dave,

I'm a 66 yr. old male from just north of you in Delray Beach. I will be glad to

update you as soon as I can.

I have the upmost confidence in Dr. Glassberg. She is one smart person. She is

so invloved in the IPF studies and teaching besides being so interested in each

patient that it's a pleasure to deal with her. I'll never forget her first words

to me as she walked into the exam room. " Do you think you are going to die? "

What an ice breaker. While I was regaining my wits she assured me I wasn't going

to anytime soon.

She approved me for the Artemis drug study after several consultations with

another University hospital I had been going to, but she was somewhat

unconvinced of the dx. The consensus was what else could I have. When I was

turned down by the reviewer the only recourse was to find out for sure. I asked

her if I could stay on as her patient and she agreed.

Like you my original dx came from a ct scan of my abdomen that caught the bottom

part of my lungs. Subsequent scans showed what is believed to be IPF.

My case is that I have either just begun the process or I have another

underlying lung disease that projects like IPF. The biopsy should tell. I go in

at 5 am with a start time of 7:30.

Thanks for the wishes.

Terre

> > > > >

> > > > > Hi, this is my first post. I am a 43 year old Male in Miami, FL. I

> > > > have been seeing my Pulmonologist for a year now and have had cat scans

> > > > every 3 months, blood tests, PFT - which they said showed normal

> > > > function, Bronchoscopy, a BAL and a hyposensitivity panel that showed

> > > > normal ranges except for Thermoactinomyces Vulgaris score of 26 (normal

> > > > is <13). I do not have any symptoms, maybe just a litle tired. The PF

> > > > was found by accident, had a CT of the abdomen and the radiologist

> > > > reported abnormal appearance of the lungs could be expression of

> > > > interstitial PR. Pulmonologist is not sure what is causing all the

> > > > inflamation in my lungs and the ground glass opacification in the lower

> > > > lobes. The lung cat scans show no significant change over the year. My

> > > > doctor wants a diagnosis. She sent me to a Lung Sergeon who examined me

> > > > and also wants to do the biopsy. I have a Video-assisted Thoracic

> > > > Surgery(wedge resection)for the biopsy in 2 weeks.

> > > > >

> > > > > Can anyone please give me their thoughts or experience on this

> > > > operation.

> > > > > Thanks, Dave

> > > > >

> > > >

> > >

> >

>