Re: VATS scheduled for 2/13. Should I go through the proceduere? Please give me your input.

[Guest guest]

Good morning!

Welcome Dilwala! I'm sorry you have reason to seek this group out but I'm glad you found us nonetheless. It certainly sounds as though something has been going on with you for awhile. Your PC did you no service by just listening to your lungs and declaring all was well. That's frustrating though many of us have similar stories and were misdiagnosed for years before getting the correct information about what is really wrong with us.

As far as the VATS, I can only tell you what I would do, what I did do for that matter. I can't tell you what you should do. It seems as though there is still uncertainty about which ILD you actually have even after the HRCT. That alone would make me opt for the VATS. There is a big difference between UIP and NSIP and HP. Differences in treatment, life expectancy etc. That information about what is actually going on in your lung tissue could make a big difference.

For me knowledge is power, I needed to know and I would do it again in a heartbeat. At the time of my biopsy I was acutely ill, already hospitalized and O2 dependent. While the surgeon started out to do the VATS, due to complications I had related to the anesthesia, the VATS was abandoned and I had an open lung biopsy. I had to be intubated during the procedure and ended up on a ventilator for 2 days. I tell you this in the name of honesty but please understand those complications were caused by how acutely ill I was at the time and how my illness caused my body to react to the anesthesia. But even with that once I had the stiches removed about 10 days later I've had no residual pain. Not everyone has that experience, some have pain for months and months. Because of the biopsy results I was treated with high doses of prednisone which stablized my illness. I've been off the prednisone now

for a whole year and remain stable! Boy it makes me happy to say that ! Even my new doctor at Duke is amazed at how well I'm doing.

Dilwala, you don't say where you are....assuming you are in the US I would strongly recommend a visit to a university medical center that has an ILD program. Leanne at the Foundation can provide you with a list. If you decide to go ahead with the VATS ask that the slides be read by a patholigist at one of those centers.

You have lots of things in your favor, you're young, you're obviously in excellent physical condition. Continue taking care of yourself and know that we're all in this fight with you!

Beth in NC age 48 Fibrotic NSIP 06/06

"For as long as I shall live, I will testify to Love."

VATS scheduled for 2/13. Should I go through the proceduere? Please give me your input.

Hi All,A rookie here. My name is Dilwala. I’m very touchedby the love and support being offered at this site. My VATS is scheduled for 2/13. Below is thechronology of what brought me here. Please read andadvise as I’m confused if I should go through the VATSas scheduled? Currently, I’m living a full life at47. I work all day and coach in the afternoonswithout being fatigued. I walk four miles duringlunch time without any shortness of breath. About theonly thing I cannot do is to play Basketball like Iused to. My Pulmonologist ‘thinks’ that I have hadthe lung condition since my childhood. I do want togo thru the procedure because of what I have readabout PF but reading through the complication causedby the procedure is making my real nervous. I took a lung test at a health fair at my work IN2005; reading was at 57% capacity.I consulted my PC, who listened to my

lungs and statedthat all is Ok.He wasn’t convinced that the reading was accurate andI did not feel that I had an issue either.I’m a Systems Engineer (computers) during the day anda yr around coach after hours. I coach Football,Baseball and Basketball.Repeated the lung test at work health fair in June2007; reading was at 35% capacity.I was spooked. I visited my PC. He listened to mylungs and declared that all is OK. While coaching baseball I experienced running out ofbreath when giving a long, emotional tirades.At the end of the baseball season (Aug 2007) X-rayswere taken.Radiology report read “Query small patch of left lowerlobe infiltrate vs scar”. PC told me that it wasnothing to worry about. While coaching football in Sep 07, I realized that Iindeed have an issue with my lungs. Football required a lot of yelling. I could not go onlong tirades. I had to use

short phrases. Also, Icould not blow the whistle like I could a yearearlier.I returned to the PC. Got a referral to aPulmonologist. A high resolution CT scan was taken in10/2007.It read,FINDING: There are bilateral, predominantlysubpleural, reticular densities which appear to extendall the way out to the pleural surfaces. Tinyscattered subpleural cysts may represent early changesof honeycombing / pulmonary fibrosis. There is mildperibronchial thickening predominantly at the lungbases. No bronchiectasis is identified. Nocentrilobular nodules are seen. A few scatteredground glass opacities are noted. No diffuse internalor interlobular septal thickening is noted. No airtrapping is noted.No focal consolidation or effusions are identified. Ido not see evidence for pleural thickening or pleuraleffusion. There are mild prominent mediastinal nodesin the paratracheal

an AP window measuringapproximately I cm in greatest diameter. Heat sizeis within normal limits.IMPRESSION: Diffuse bilateral subpleural reticulationsand suggestion for small areas of honeycombing. Findings are compatible with usual interstitialpneumonia (UIP) or nonspecific interstitial pneumonia(NSIP). The pattern of NISP can be seen in patientswith collagen vascular disease or hypersensitivitypneumonia. Clinical correlation is recommended. The Plumonoglist also sent me for a PF testing. Comments read; PT unable to perform DLCO maneuver upto ATS standards otherwise good effort. Albuterolused as Bronchodilator. Other number are,PRE-BRONCH POST-BRONCHActual Pred %Pred Actual %Pred %Change SPIROMETRY FVC (L) 1.82 3.76 48 1.93 51 6FEV1 (L) 1.49 3.08 48 1.73 56 16FEV1/FVC (%) 82 82 100 90 109 9FEF 25%(L/sec) 2.94 6.61 44 4.06 61 38FEF 50%(L/Sec) 1.64

4.40 37 2.61 59 59FEF 25-75%(L/Sec) 1.43 3.24 44 2.34 72 64FEF Max (L/Sec) 4.74 7.01 68 5.75 82 21FIVC (L) 1.96 2.01 2FIF 50% (L/sec) 2.01 4.32 46 2.78 64 39FIF Max (L/Sec) 2.92 3.74 28LONG VOLUMESSVC (L) 2.55 4.00 64 1.92 48 -25IC (L) 1.31 2.78 47 1.58 57 20ERV (L) 1.24 1.22 102 0.33 27 -73TGV (L) 2.70 2.78 97 RV (Pleth) ( L ) 1.46 1.57 93TLC (Pleth) (L) 4.01 5.56 72RV/TLC (Pleth) % 36 28 129In addition to CT scan and PF test, an extensive bloodtest was performed. All results were within normallimits.Thanks for reading it thru. I’m headed to bed shortlyas I’m running a baseball clinic tomorrow for the Jr’s(13-14 yrs old). However, I’m eagerly awaiting foryour input/advise. I will respond to any questionsyou may have.Dilwala

[Guest guest]

Hi Dilwala

Welcome our corner of the internet, but I'm sorry that you had to find us.

I'm sorry, but I can't offer any advice on VATS as I have never had one, whatever decision you make, I hope it goes well for you

Love Ze (38) Dermatomyositis Jo1, Pulmonary Fibrosis etc for years!>> Hi All,> > A rookie here. My name is Dilwala. I'm very touched> by the love and support being offered at this site. > My VATS is scheduled for 2/13. Below is the> chronology of what brought me here. Please read and> advise as I'm confused if I should go through the VATS> as scheduled? Currently, I'm living a full life at> 47. I work all day and coach in the afternoons> without being fatigued. I walk four miles during> lunch time without any shortness of breath. About the> only thing I cannot do is to play Basketball like I> used to. My Pulmonologist `thinks' that I have had> the lung condition since my childhood. I do want to> go thru the procedure because of what I have read> about PF but reading through the complication caused> by the procedure is making my real nervous. > > I took a lung test at a health fair at my work IN> 2005; reading was at 57% capacity.> I consulted my PC, who listened to my lungs and stated> that all is Ok.> He wasn't convinced that the reading was accurate and> I did not feel that I had an issue either.> I'm a Systems Engineer (computers) during the day and> a yr around coach after hours. I coach Football,> Baseball and Basketball.> Repeated the lung test at work health fair in June> 2007; reading was at 35% capacity.> I was spooked. I visited my PC. He listened to my> lungs and declared that all is OK. > While coaching baseball I experienced running out of> breath when giving a long, emotional tirades.> At the end of the baseball season (Aug 2007) X-rays> were taken.> Radiology report read "Query small patch of left lower> lobe infiltrate vs scar". PC told me that it was> nothing to worry about. > While coaching football in Sep 07, I realized that I> indeed have an issue with my lungs. > Football required a lot of yelling. I could not go on> long tirades. I had to use short phrases. Also, I> could not blow the whistle like I could a year> earlier.> I returned to the PC. Got a referral to a> Pulmonologist. A high resolution CT scan was taken in> 10/2007.> > It read,> > FINDING: There are bilateral, predominantly> subpleural, reticular densities which appear to extend> all the way out to the pleural surfaces. Tiny> scattered subpleural cysts may represent early changes> of honeycombing / pulmonary fibrosis. There is mild> peribronchial thickening predominantly at the lung> bases. No bronchiectasis is identified. No> centrilobular nodules are seen. A few scattered> ground glass opacities are noted. No diffuse internal> or interlobular septal thickening is noted. No air> trapping is noted.> > No focal consolidation or effusions are identified. I> do not see evidence for pleural thickening or pleural> effusion. There are mild prominent mediastinal nodes> in the paratracheal an AP window measuring> approximately I cm in greatest diameter. Heat size> is within normal limits.> > IMPRESSION: Diffuse bilateral subpleural reticulations> and suggestion for small areas of honeycombing. > Findings are compatible with usual interstitial> pneumonia (UIP) or nonspecific interstitial pneumonia> (NSIP). The pattern of NISP can be seen in patients> with collagen vascular disease or hypersensitivity> pneumonia. Clinical correlation is recommended. > > The Plumonoglist also sent me for a PF testing. > Comments read; PT unable to perform DLCO maneuver up> to ATS standards otherwise good effort. Albuterol> used as Bronchodilator. > > Other number are,> > > PRE-BRONCH POST-BRONCH> Actual Pred %Pred Actual %Pred %Change > SPIROMETRY > FVC (L) 1.82 3.76 48 1.93 51 6> FEV1 (L) 1.49 3.08 48 1.73 56 16> FEV1/FVC (%) 82 82 100 90 109 9> FEF 25%(L/sec) 2.94 6.61 44 4.06 61 38> FEF 50%(L/Sec) 1.64 4.40 37 2.61 59 59> FEF 25-75%(L/Sec) 1.43 3.24 44 2.34 72 64> FEF Max (L/Sec) 4.74 7.01 68 5.75 82 21> FIVC (L) 1.96 2.01 2> FIF 50% (L/sec) 2.01 4.32 46 2.78 64 39> FIF Max (L/Sec) 2.92 3.74 28> > > LONG VOLUMES> > SVC (L) 2.55 4.00 64 1.92 48 -25> IC (L) 1.31 2.78 47 1.58 57 20> ERV (L) 1.24 1.22 102 0.33 27 -73> TGV (L) 2.70 2.78 97 > RV (Pleth) ( L ) 1.46 1.57 93> TLC (Pleth) (L) 4.01 5.56 72> RV/TLC (Pleth) % 36 28 129> > > In addition to CT scan and PF test, an extensive blood> test was performed. All results were within normal> limits.> > Thanks for reading it thru. I'm headed to bed shortly> as I'm running a baseball clinic tomorrow for the Jr's> (13-14 yrs old). However, I'm eagerly awaiting for> your input/advise. I will respond to any questions> you may have.> > Dilwala>

[Guest guest]

Going to answer you with many questions of my own probably but they

are all things important to you at this point.

Have you done a six minute walk? What were your saturation levels?

Are you on oxygen? Have you been given an oximeter recorder for 24

hours or do you have an oximeter? Basically I'm asking if you know

anything about your oxygen levels at rest and after exertion and

especially when you're experiencing the shortage. You should. The

very first thing that should have occured is a determination if you

have a need for supplemental oxygen. If your saturation levels are

dropping, you need oxygen both for the shortness of breath, but more

importantly to protect other organs.

Second, by this point you should have been sent for an echocardiogram

and a stress echo. PF often leads to Pulmonary Hypertension and a

mild amount may be identified even early. Also shortness of oxygen

can lead to other heart problems. It's just routine to check early

and certainly prior to any surgery.

Now, comes VATS but first an interruption for a very important

message. I'm very impressed at what you've done to gather

information. You obviously know the first rule of getting copies of

everything. Rule two is to take control of your medical care and

you're appearing to do that. Rule three is you face choices as its

your life. The doctors will recommend and advise but you have to

choose. Get second opinions if needed as well.

Now, VATS. VATS is a very invasive procedure. They remove three

pieces of your lung. So even though the three incisions are small and

its laparascopically performed as opposed to an open lung biopsy, its

still not a minor surgery and can have complications. For most of us

it has led to some pain after, even for extended periods. For others

it led to more serious complications. However, no one currently on

the board died during the surgery (Ok, it like any significant

surgery does have that risk).

If you decide to have it very carefully select the surgeon, find out

how many VATS he has performed and how many complications. VATS is

the only way to be sure what form of PF you have. But it will not

always be conclusive. We have at least one member who had a VATS and

they still aren't sure.

I had a VATS. It was absolute in determination. I've had pain after.

I'd do it again. But, I had it primarily to make a decision on

treatment after and whether to use Imuran and Prednisone or not.

Those are also very personal choices you will face. Its important to

understand them before the VATS. Here are my questions that I suggest

you consider in deciding.

1-Without it do they feel certain as to your form of disease or not?

2-Are you going to do anything different as a result of what you find

out?

3-What is your health status and the current strength of your lungs

and body in general?

4-What is your personal, psychological need to know the specific

disease.

5-Sometimes its needed for trials and/or transplants later

You know that as to number 1, they aren't certain. As to number 3,

you're in pretty good shape and so are your lungs. But three other

important questions remain.

You need to search here and see as many experiences with VATS as you

can. I think you'll be troubled by the problems after, but you'll

find strangely the majority would have it again. However, also listen

carefully to those who say they wouldn't and to those who chose not

to have it.

What has been going on since October? You should have had follow up

appointments, certainly an echo, determinations of need for oxygen,

and more conversations about pros and cons of VATS. Always go to

pulmonologist with list of questions. Don't let him or her not

communicate adequately with you. If they do, get another. Discuss

post VATS probabilities and choices and even if transplant would be

something you considered down the road.

I'm concerned I've seen nothing in all this about your oxygen levels.

That should have been the first thing. You may also need an ABG

(Arterial Blood Gas Test) although I personally got nothing from

mine.

One other comment concerns me. " My pulmonologist thinks I have had

this condition since childhood " . It may have been caused by something

in childhood, but you haven't had PF since childhood and made it to

47 without knowing. How many patients with PF has your pulmonologist

treated? Thats a good question. If not many, find another, possibly

at a teaching facility, better one that specializes and even does

transplants.

PFT Percentages are based on height, sex, and ethnic group because

there are different norms based on that. Looking at your percentages

you're not a 6-0, 47 year old, caucasian male. This only has meaning

in that your norm is lower than it would be for that person, so your

absolute levels are lower than your percentages reflect when compared

to many of us. For instance even at my age of 58, your FVC would only

be 38% of my norm.

One other item. I noticed the nodes. 1 cm is not a size that would

normally be of concern. However, it would normally be appropriate

when a CT reveals nodes to do CT's of other areas just to check. For

instance I had up to 1 cm in neck and a few up to 1.5, 1.8, and 2.0

in chest, so did have CT's of Abdomen and Pelvis. My oncologist

considered under 2.0 to be ok and not require a biopsy for lymphoma

or anything, but then did require repeat CT's. Fortunately mine are

now down.

When you said the blood work showed nothing, what work did you have

done? Did you have ANA and other blood work to rule out any

autoimmune disease.

Now, I know you'll get information overload, but take it in slowly,

analyze it, then you decide your next step.

I had a VATS because I was not going to try Imuran/Prednisone if I

had UIP/IPF but might have if I'd had NSIP or others. Also, I had it

while healthy and early for the possibility of clinical trials and/or

transplant evaluation later.

There are just as valid reasons not to have one.

>

> Hi All,

>

> A rookie here. My name is Dilwala. I'm very touched

> by the love and support being offered at this site.

> My VATS is scheduled for 2/13. Below is the

> chronology of what brought me here. Please read and

> advise as I'm confused if I should go through the VATS

> as scheduled? Currently, I'm living a full life at

> 47. I work all day and coach in the afternoons

> without being fatigued. I walk four miles during

> lunch time without any shortness of breath. About the

> only thing I cannot do is to play Basketball like I

> used to. My Pulmonologist `thinks' that I have had

> the lung condition since my childhood. I do want to

> go thru the procedure because of what I have read

> about PF but reading through the complication caused

> by the procedure is making my real nervous.

>

> I took a lung test at a health fair at my work IN

> 2005; reading was at 57% capacity.

> I consulted my PC, who listened to my lungs and stated

> that all is Ok.

> He wasn't convinced that the reading was accurate and

> I did not feel that I had an issue either.

> I'm a Systems Engineer (computers) during the day and

> a yr around coach after hours. I coach Football,

> Baseball and Basketball.

> Repeated the lung test at work health fair in June

> 2007; reading was at 35% capacity.

> I was spooked. I visited my PC. He listened to my

> lungs and declared that all is OK.

> While coaching baseball I experienced running out of

> breath when giving a long, emotional tirades.

> At the end of the baseball season (Aug 2007) X-rays

> were taken.

> Radiology report read " Query small patch of left lower

> lobe infiltrate vs scar " . PC told me that it was

> nothing to worry about.

> While coaching football in Sep 07, I realized that I

> indeed have an issue with my lungs.

> Football required a lot of yelling. I could not go on

> long tirades. I had to use short phrases. Also, I

> could not blow the whistle like I could a year

> earlier.

> I returned to the PC. Got a referral to a

> Pulmonologist. A high resolution CT scan was taken in

> 10/2007.

>

> It read,

>

> FINDING: There are bilateral, predominantly

> subpleural, reticular densities which appear to extend

> all the way out to the pleural surfaces. Tiny

> scattered subpleural cysts may represent early changes

> of honeycombing / pulmonary fibrosis. There is mild

> peribronchial thickening predominantly at the lung

> bases. No bronchiectasis is identified. No

> centrilobular nodules are seen. A few scattered

> ground glass opacities are noted. No diffuse internal

> or interlobular septal thickening is noted. No air

> trapping is noted.

>

> No focal consolidation or effusions are identified. I

> do not see evidence for pleural thickening or pleural

> effusion. There are mild prominent mediastinal nodes

> in the paratracheal an AP window measuring

> approximately I cm in greatest diameter. Heat size

> is within normal limits.

>

> IMPRESSION: Diffuse bilateral subpleural reticulations

> and suggestion for small areas of honeycombing.

> Findings are compatible with usual interstitial

> pneumonia (UIP) or nonspecific interstitial pneumonia

> (NSIP). The pattern of NISP can be seen in patients

> with collagen vascular disease or hypersensitivity

> pneumonia. Clinical correlation is recommended.

>

> The Plumonoglist also sent me for a PF testing.

> Comments read; PT unable to perform DLCO maneuver up

> to ATS standards otherwise good effort. Albuterol

> used as Bronchodilator.

>

> Other number are,

>

>

> PRE-BRONCH

POST-BRONCH

> Actual Pred %Pred

Actual %Pred %Change

> SPIROMETRY

> FVC (L) 1.82 3.76 48

1.93 51 6

> FEV1 (L) 1.49 3.08 48

1.73 56 16

> FEV1/FVC (%) 82 82 100

90 109 9

> FEF 25%(L/sec) 2.94 6.61 44

4.06 61 38

> FEF 50%(L/Sec) 1.64 4.40 37

2.61 59 59

> FEF 25-75%(L/Sec) 1.43 3.24 44

2.34 72 64

> FEF Max (L/Sec) 4.74 7.01 68

5.75 82 21

> FIVC (L) 1.96

2.01 2

> FIF 50% (L/sec) 2.01 4.32 46

2.78 64 39

> FIF Max (L/Sec) 2.92

3.74 28

>

>

> LONG VOLUMES

>

> SVC (L) 2.55 4.00 64

1.92 48 -25

> IC (L) 1.31 2.78 47

1.58 57 20

> ERV (L) 1.24 1.22 102

0.33 27 -73

> TGV (L) 2.70 2.78 97

> RV (Pleth) ( L ) 1.46 1.57 93

> TLC (Pleth) (L) 4.01 5.56 72

> RV/TLC (Pleth) % 36 28 129

>

>

> In addition to CT scan and PF test, an extensive blood

> test was performed. All results were within normal

> limits.

>

> Thanks for reading it thru. I'm headed to bed shortly

> as I'm running a baseball clinic tomorrow for the Jr's

> (13-14 yrs old). However, I'm eagerly awaiting for

> your input/advise. I will respond to any questions

> you may have.

>

> Dilwala

>

[Guest guest]

Hello Dilwala... I always feel a bit of sadness when a new member finds us but then I'm glad you did. You will be glad you did too.

I'm very sorry for the stats and confusion with numbers and also what your PC said to you, three times! As MB (Beth) said, those were no favors.

There are some here on our board (Bruce, P. , and more...brain fade here...)

who do a lot of research and will be invaluable to you as questions arise. Leanne (Pulmonary Fibrosis Foundation)is a source you can easily access.

I was dx (diagnosed) 3-06 with IPF...yesterday a new pulmonologist "re-named" it UIP(usual interstitial pneumonia). You will soon learn there are different dx for what is basically the same thing.

I'll be 70 this year and for that reason and other chronic health problems, I opted NOT to do a VATS. MY opinion is, there is no cure, no treatment for IPF and a VATS to likely only confirm what I already know is not worth the procedure and after effects...to me. Some do well and some do not.

I'm not knowledgeable enough to answer most of your concerns but I know others will reply.

It helps us if you sign off with your name, dx and date of, and state.

Blessings on you as you begin your journey with us. Stay close.

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

VATS scheduled for 2/13. Should I go through the proceduere? Please give me your input.

Hi All,A rookie here. My name is Dilwala. I’m very touchedby the love and support being offered at this site. My VATS is scheduled for 2/13. Below is thechronology of what brought me here. Please read andadvise as I’m confused if I should go through the VATSas scheduled? Currently, I’m living a full life at47. I work all day and coach in the afternoonswithout being fatigued. I walk four miles duringlunch time without any shortness of breath. About theonly thing I cannot do is to play Basketball like Iused to. My Pulmonologist ‘thinks’ that I have hadthe lung condition since my childhood. I do want togo thru the procedure because of what I have readabout PF but reading through the complication causedby the procedure is making my real nervous. I took a lung test at a health fair at my work IN2005; reading was at 57% capacity.I consulted my PC, who listened to my lungs and statedthat all is Ok.He wasn’t convinced that the reading was accurate andI did not feel that I had an issue either.I’m a Systems Engineer (computers) during the day anda yr around coach after hours. I coach Football,Baseball and Basketball.Repeated the lung test at work health fair in June2007; reading was at 35% capacity.I was spooked. I visited my PC. He listened to mylungs and declared that all is OK. While coaching baseball I experienced running out ofbreath when giving a long, emotional tirades.At the end of the baseball season (Aug 2007) X-rayswere taken.Radiology report read “Query small patch of left lowerlobe infiltrate vs scar”. PC told me that it wasnothing to worry about. While coaching football in Sep 07, I realized that Iindeed have an issue with my lungs. Football required a lot of yelling. I could not go onlong tirades. I had to use short phrases. Also, Icould not blow the whistle like I could a yearearlier.I returned to the PC. Got a referral to aPulmonologist. A high resolution CT scan was taken in10/2007.It read,FINDING: There are bilateral, predominantlysubpleural, reticular densities which appear to extendall the way out to the pleural surfaces. Tinyscattered subpleural cysts may represent early changesof honeycombing / pulmonary fibrosis. There is mildperibronchial thickening predominantly at the lungbases. No bronchiectasis is identified. Nocentrilobular nodules are seen. A few scatteredground glass opacities are noted. No diffuse internalor interlobular septal thickening is noted. No airtrapping is noted.No focal consolidation or effusions are identified. Ido not see evidence for pleural thickening or pleuraleffusion. There are mild prominent mediastinal nodesin the paratracheal an AP window measuringapproximately I cm in greatest diameter. Heat sizeis within normal limits.IMPRESSION: Diffuse bilateral subpleural reticulationsand suggestion for small areas of honeycombing. Findings are compatible with usual interstitialpneumonia (UIP) or nonspecific interstitial pneumonia(NSIP). The pattern of NISP can be seen in patientswith collagen vascular disease or hypersensitivitypneumonia. Clinical correlation is recommended. The Plumonoglist also sent me for a PF testing. Comments read; PT unable to perform DLCO maneuver upto ATS standards otherwise good effort. Albuterolused as Bronchodilator. Other number are,PRE-BRONCH POST-BRONCHActual Pred %Pred Actual %Pred %Change SPIROMETRY FVC (L) 1.82 3.76 48 1.93 51 6FEV1 (L) 1.49 3.08 48 1.73 56 16FEV1/FVC (%) 82 82 100 90 109 9FEF 25%(L/sec) 2.94 6.61 44 4.06 61 38FEF 50%(L/Sec) 1.64 4.40 37 2.61 59 59FEF 25-75%(L/Sec) 1.43 3.24 44 2.34 72 64FEF Max (L/Sec) 4.74 7.01 68 5.75 82 21FIVC (L) 1.96 2.01 2FIF 50% (L/sec) 2.01 4.32 46 2.78 64 39FIF Max (L/Sec) 2.92 3.74 28LONG VOLUMESSVC (L) 2.55 4.00 64 1.92 48 -25IC (L) 1.31 2.78 47 1.58 57 20ERV (L) 1.24 1.22 102 0.33 27 -73TGV (L) 2.70 2.78 97 RV (Pleth) ( L ) 1.46 1.57 93TLC (Pleth) (L) 4.01 5.56 72RV/TLC (Pleth) % 36 28 129In addition to CT scan and PF test, an extensive bloodtest was performed. All results were within normallimits.Thanks for reading it thru. I’m headed to bed shortlyas I’m running a baseball clinic tomorrow for the Jr’s(13-14 yrs old). However, I’m eagerly awaiting foryour input/advise. I will respond to any questionsyou may have.Dilwala

[Guest guest]

Bruce... I want to thank you for all the time you take to answer folks. Your post to Dilwala is so thorough. I know he will appreciate it. You are a real asset to the board.

Hugs to you.

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

[Guest guest]

And hugs to both you and Rosebud.

>

> Bruce... I want to thank you for all the time you take to answer

folks. Your post to Dilwala is so thorough. I know he will appreciate

it. You are a real asset to the board.

> Hugs to you.

> Mama-Sher, 69; IPF, 3-06, OR.

> Don't fret about tomorrow, God is already there!

>

[Guest guest]

I appreciate it too as I am still awaiting my second opinion too.

>

> Bruce... I want to thank you for all the time you take to answer

folks. Your post to Dilwala is so thorough. I know he will appreciate

it. You are a real asset to the board.

> Hugs to you.

> Mama-Sher, 69; IPF, 3-06, OR.

> Don't fret about tomorrow, God is already there!

>

[Guest guest]

Well, sometimes the doctors so rush through it and they oversimplify it

based on their perceptions. I think they sometimes have to be reminded

and some are open to it and others aren't. For instance, right now I

have some pain on the left side. Only because we discussed it fully

were we able to determine its external, not internal to the lung. Then

we determined its probably inflammation and pain still from the VATS.

Now, he spoke of sometimes that lasting up to a year. It was so

valuable to me that we'd just had much discussion here and I knew that

was what many experienced. Also, was refreshing that pulmonologist

recognized that. So, now I know that as long as it doesn't affect my

breathing too badly we'll do nothing. If it does we either have to use

a short dose of prednisone for the inflammation or use a strong

narcotic pain killer such as vicodin. Also refreshing that he's not

under some illusion that some over the counter pain killer is going to

work. When your doctor is saying things consistent with what you know

from the real world, this forum, then it does give you confidence he's

not speaking from some isolation chamber.

> >

> > Bruce... I want to thank you for all the time you take to answer

> folks. Your post to Dilwala is so thorough. I know he will appreciate

> it. You are a real asset to the board.

> > Hugs to you.

> > Mama-Sher, 69; IPF, 3-06, OR.

> > Don't fret about tomorrow, God is already there!

> >

>

[Guest guest]

Beth, Bruce, Zena, Sher, Onecarolinagirl,

Thank you for taking the time reading and responding. I¡¦m not an

overly religious person but I have always believed that heaven

exists on this earth. Mankind simply needs to find it. This site

is an example of how mankind can find heaven by simply caring for

each other.

Beth, I¡¦m in Northern California. You had an open lung biopsy

and you will do that again in a heartbeat. That makes it easy for

me to decide.

Zena, thanks for the welcome. I¡¦m curious; was your PF

distinguished/determined without a biopsy? I am assuming that you

had an open lung biopsy instead. Please confirm?

Sher, I will look into Leanne. I¡¦m glad that you responded as you

made a determination to go on without an invasive procedure. You

certainly gave sound logic for your choice. Were any medications

prescribed for your IPF, and if so, have they been helpful? How

long did it take to get the right one, and how was it determined

that you are now on the right medicine?

Yo Carloinagirl, what¡¦s the 2nd opinion for? A biopsy? I feel like

I¡¦m in a corner where that is the only ¡¥intelligent¡¦ option

available¡K

Bruce, I owe you a brotherly hug. We may never see each other but

please know that it is folks like you that keep this world somewhat

sane. Thank you for the detailed response and more questions.

No six minute walk. I believe that my oxygen levels are steady at

98. My PC got a device for me to wear when I slept to assure that

my oxygen level was not dropping. I¡¦m assuming that both my PC and

the Pulmonologist do not feel the need for it. I looked it up. I

think I will pass with flying colors if all I have to do is to walk

for six minutes in the hospital corridors. Please enlighten me if

there is more to it?

No echocardiogram and/or stress echo. No one (PC, Pulmonolgist and

the Thoracic Surgeon) has mentioned anything about it. I think my

heart is in pretty good shape. Should I insist on it? Perhaps they

will run some tests before the surgery. I¡¦m to receive the pre-op

list by Monday.

I have a Thoracic Surgeon who will be performing the VATS. He

stated that ¡§this is the simplest procedure that he performs and

that he has done hundreds of them¡¨. I also received a phone call

from the hospital on Friday. They asked me a bunch of questions.

The nurse, without me asking, said that this surgeon has performed a

lot of VATS. She said that she was not aware of any issues or

complications.

Will I do any thing different as a result of when I find what I

have? Yes. If what I have can be slowed down and somewhat treated

then I will go on with life as is. I have a 12 yr old twin

boy/girl. Both are in 7th grade. I will keep things as is until

they graduate high school. However, if I¡¦m only looking at 6 mo¡¦s

to 2-1/2 yr ( the worst case scenario depicted by the pulmonologist)

then I will make immediate changes as what I am currently doing

towards what is really important to me.

My personal/Psychological need to find out what I have? The

Thoracic surgeon wanted to do the procedure in November. I wanted

to evaluate my options. I did not disclose it to anyone. I have

been going thru a spectrum of emotions on a daily basis. When I

finally called to schedule the VATS, my plan was to tell the family

that I was going on a business trip. If I discovered that my PF can

be treated and slowed down then I would keep it to my self.

However, if it was the worst case scenario (6 months to 2-1/2 yrs)

then I would tell my wife but still keep it from the kids. My

rational was that I wanted to continue to see the happy faces of my

wife and kids. I did not want them to stop living and live with the

horrible news. So as per the plan, I sat down last weekend to write

a letter to my wife and kids. I wanted to write the letter before

the biopsy in case something went wrong during the procedure. I

cried more than I wrote. When I got to the finances and the kids

education and all of the other important stuff that they ¡¥may¡¦ have

to manage without me, it dawned on me that my wife needs to be

involved in these decisions. I realized that I have been in this

self pity mode since I looked up PF. I shared the news with my wife

on Monday. Monday was the most draining day of my life, Tuesday was

not much better. I¡¦m still adamant that we keep the news from the

kids at least until after we know what we¡¦re dealing with it. So,

yes I have a strong personal/psychological need to know what I¡¦m

dealing with here!!!!!!!!!!!!!!!!!!!!!!

I grow up in a remote village in South East Asia (yeap, I¡¦m not 6-0,

47 year old, Caucasian male ļ). The pulmonologist asked me what we

used for heating. I shared with him what I recalled from my

childhood. Mom and I had a ~400sf room. We cooked by burning wood

and used the same for heating needs. Mom passed away in 2003. She

was 72. She passed with various aliments including issue with the

lungs. She was offered biopsy but refused. That is when the

pulmonolgist theorized that I may have this since childhood. He

stated that ¡¥now we know that being exposed to burning wood in

inadequate ventilation causes lung fibrosis¡¨. Various contacts

(doctors) have told me that this guy (the pulmonologist) is the best

in the area.

Your comment on ¡¥1cm node¡¦ suggests that it is too small to make a

determination. Am I being rushed here so that a couple of people

can see an increased in their billings?

Yes the blood test was to rule out the auto immune concerns. I have

a copy of it and will post or email it to you.

You stated that you had a VATS so you can decide if you would use

certain medicine or not. Can I be prescribed a certain medicine

(i.e, Imuran/Prednisone) without a biopsy? Then take another CT to

determine if the medicine is helping? What I¡¦m being told is that

I ¡¥cannot¡¦ be given anything unless I go thru a biopsy.

Headed out, taking the wife out to dinner,

Dilwala, 10/2007, TBD, Northern California

> > >

> > > Bruce... I want to thank you for all the time you take to

answer

> > folks. Your post to Dilwala is so thorough. I know he will

appreciate

> > it. You are a real asset to the board.

> > > Hugs to you.

> > > Mama-Sher, 69; IPF, 3-06, OR.

> > > Don't fret about tomorrow, God is already there!

> > >

> >

>

[Guest guest]

A couple of things....

If you're maintaining oxygen at 98% even under exertion and have PF

then I will deed the Pacific Ocean over to you, including Hawaii. I

don't mean to be funny, but thats just totally inconsistent. With

your PFT's your oxygen saturation has to be slipping some. Please

check because oxygen isn't just important for shortness of breath. It

protects your organs. If they are pushing for VATS, i just have to

believe you need or are close to needing oxygen at least for

exertion. What did your oxygen levels drop to at night? They did

drop. Everyone's do, even perfectly healthy. You make a dangerous

statement " I'm assuming that both my PC and the Pulmonologist do not

feel the need for it. " It's your life and you are your medical

manager. Maybe I'm wrong completely but its a simple way to find out

and I can't imagine with your PFT's that your oxygen doesn't at least

drop to the low 90's on exertion and if it goes below 90 that means

you need oxygen. After all, what do you think gave you the symptoms

to start with? Your oxygen dropping.

Now your percentages on your PFT's make sense. Don't have any idea

why but normal for Asians is lower than Caucasians. Height makes more

sense to me.

Now.....I understand not telling the kids until you know for sure.

But, ultimately, honesty with everyone in your life will provide you

such relief and they need it too. Its a long battle and if you can't

communicate in every way, Sharing with your wife was the most

important thing you could have done and while draining will be

freeing to both of you.

As to what you might or might do different after VATS. With UIP you

might choose not to do Imuran and Prednisone and you might choose to

do them with all others. Or you might do them regardless or not do

them regardless....those are choices you'll make.

Also, it can effect your choices of clinical trials and it can effect

your life planning.

One other thing. Take care of all legal matters early and even before

VATS, such as Medical Power of Attorney, Directives, Anything dealing

with death or with incapacitation. Why? Then death is taken care of.

All you have to ever deal with after is life. Making the most of

every remaining moment whether 1 year of 50. These are things you

should have already done anyway.

As to determining PF without biopsy. You can determine PF in general.

However, the accuracy of which kind is only about 60%. Early its

less, later its greater. The accuracy with VATS is around 97%. Insist

the biopsies are read by more than one radiologist too. Mine were

also sent to Mayo Clinic.

VATS may technically and as far as potential death be the simplest

thing he does. But to you its invasive and can have complications and

is likely to leave you with some residual pain. Its invasive to have

three pieces of your lung taken. So while I'd do it again, don't

underestimate it, but don't overestimate it either.

As to Imuran and Prednisone without VATS. Yes, one can just assume PF

and do that. But understand Prednisone isn't a mild drug. And, having

a VATS while you're strong instead of later is better. Plus you'll

need it if you consider a biopsy. Now, if you're going to have a VATS

you would not do Prednisone before as it weakens your immune system.

Well, I'm so glad you came here. I know its overwhelming, but you're

doing an excellent job of learning and listening. We try to be

completely honest and don't mince words. Always feel free to ask or

say anything. We're sorry you have to be here but welcome you to our

Air Family.

> > > >

> > > > Bruce... I want to thank you for all the time you take to

> answer

> > > folks. Your post to Dilwala is so thorough. I know he will

> appreciate

> > > it. You are a real asset to the board.

> > > > Hugs to you.

> > > > Mama-Sher, 69; IPF, 3-06, OR.

> > > > Don't fret about tomorrow, God is already there!

> > > >

> > >

> >

>

[Guest guest]

Hi Dilwala,

I have never had any sort of biopsy. My doc thinks, and tbh I'm inclined to agree, that it's enough to know that I have PF, I have it as a secondary to Dermatomyositis, it is damped down by the treatment that I receive for the DMS. She feels that I have enough problems with out having anything chopped out just to tell me which type of PF I have, when this information won't further my treatment in anyway.

Instead I've had ct scans, MRI scans and a dynamic lung scan.

I'm over in England, I already know that some things are done differently here.

I love your name, what's it's origin?

Love Zena xx> > > >> > > > Bruce... I want to thank you for all the time you take to > answer > > > folks. Your post to Dilwala is so thorough. I know he will > appreciate > > > it. You are a real asset to the board.> > > > Hugs to you.> > > > Mama-Sher, 69; IPF, 3-06, OR.> > > > Don't fret about tomorrow, God is already there!> > > >> > >> >>

[Guest guest]

I am now wondering why I was not asked to go thru more testing and

straight to a biopsy after a CT scan, a PFT, and a blood test.

Only Oxygen testing I have had is at my PC, at the Pulmomologist, at

the Surgeon's office, at my wife's doctor (a Stanford graduate) when

my wife insisted that we talk to her on Tuesday, 2/05. Every one of

them showed a normal level, i.e, 98 point something. The method of

testing was a splinter type device on my finger to read the oxygen

level. In addition, my PC had requested a third party pulmonary

care giver to loan me a device that I wore over night and returned

it to them the next day. They dropped off the device at my work.

The gentleman showed me how to use the device. He also tested me at

98+. I don't have the result of the overnight test. I will get

them from my PC on Monday. I did inquire of the result when I

visited the PC but he did not have them in my charts at that time.

All of the Oxygen readings have been essentially at rest and none

under exertion. On Tuesday, my wife and I walked to the polling

station. Mapquest showed it at 1.1 miles. The entire walk was

uphill. When we got closer to the polling stating my wife was more

out of breath than I was. I also walk during my lunch. I walk ~4

miles in about an hour and fifteen minutes. I have a little sweat

going but I am not overly fatigued or out of breath. As stated

earlier, I'm running out of breath when I go on long tirades when

coaching; I cannot guard my son when practicing basketball for more

than a minute, etc. I just walked upstairs to yank the X-box away

from my son (home work is not finished). He horsed around with me a

little bit. I had to catch my breath.

So, yes without question, my oxygen levels are dropping during

exertion. I just have not been tested under exertion. I do need to

become a better manger of my own medical heath. Joining this group

certainly was a good start.

Yes, sharing this with my wife (nineteenth anniversary this April)

has taken a load off of me. I'm more at ease and now that a few

days have past, she is actually coping with it a bit better.

I have not taken care of the other important (legal) matters as well

as I should have. I have given it a lot of thoughts though. Now,

that my wife is on-board I will move ahead with them.

Thank you all for welcoming me to the Air Family, responding at the

site and/or via individual emails. The consensus, in general, is

that I should proceed with the VATS. It is better to know than not;

it is better to know sooner than later, and it is better to have the

procedure when one is in decent health overall.

My 7th grade All-Net Basketball team has a double header today, 2:30

and 5 p.m. Currently, we are 5-4. We have three remaining games in

the regular season. Then the top two teams (out of 10) represent

their prospective cities to the NJB National competition in Los

Angeles. We're gunning to get there. My big man is only 5-10,

while we compete against kids that are already 6-3. We play with

heart, with smarts and they will have to beat us out of it. Just

like this damn PF……

Bruce, I will eagerly await your comments on weather I should insist

on oxygen testing under exertion before the VATS?

Dilwala, 10/2007, TDB, Northern California

> > > > >

> > > > > Bruce... I want to thank you for all the time you take

to

> > answer

> > > > folks. Your post to Dilwala is so thorough. I know he will

> > appreciate

> > > > it. You are a real asset to the board.

> > > > > Hugs to you.

> > > > > Mama-Sher, 69; IPF, 3-06, OR.

> > > > > Don't fret about tomorrow, God is already there!

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Dilwala... I'm so glad to hear from you so soon! When I began reading about you pulling off to yourself I said, "Oh no". I'm relieved you changed your mind. Believe me, your wife would be so angry/hurt and feel so unimportant had you done as first planned. Women are funny that way and you would have had only the best of intentions! You need each other now. And most of all she really needs to know what YOU want.

>>>Your questions: As to meds I take, there are none that can help IPF. There is no cure/treatment. Prednisone is often prescribed after a VATS procedure and I forgot to mention to you that I do not want to take 'p'. ...unless on a short term basis. The side-effects can be ghastly and there is usually a big weight gain. I'm already a large woman. So knowing that 'p' would be the med even after a VATS and I don't want it, thus my decision.

Again, at my age, I don't want to deal with it.

I'm taking NAC...(N-Acetyl Cysteine) for mucus/coughing. It can be purchased at a very low price on www.puritan.com. Many of us here take it and Drs. do prescribe it. It's safe. I'm also on Albuterol, an inhaler and have been put on O2 again.

Dilwala, there are no meds specifically for IPF, so there is no trial basis for different meds. O2 and prednisone seem to be the typical "first out of the hat".

When I did the 6MW Friday, I was surprised to see how far my sat levels had fallen! Three months ago they were about 94 to 97. Now they are down to 83. My walk was stopped in 3 minutes.

Please don't put yourself on a 'time table' to die. Zena and Joyce were dx 10 years ago!! Yes, that's rare, but others have some many years since dx too.

Only after 2 years has this Dr. said she is fairly certain (as one can be) that breathing in ceramic dust for 20 years (off and on) is the cause for my fibrosis. I feel better kinda' knowing "how" I got this damn disease that we all hate!

Glad you have good Drs.

I'll be watching for your posts.

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

Re: VATS scheduled for 2/13. Should I go through the proceduere? Please give me your input.

Beth, Bruce, Zena, Sher, Onecarolinagirl,Thank you for taking the time reading and responding. I¡¦m not an overly religious person but I have always believed that heaven exists on this earth. Mankind simply needs to find it. This site is an example of how mankind can find heaven by simply caring for each other. Beth, I¡¦m in Northern California. You had an open lung biopsy and you will do that again in a heartbeat. That makes it easy for me to decide. Zena, thanks for the welcome. I¡¦m curious; was your PF distinguished/determined without a biopsy? I am assuming that you had an open lung biopsy instead. Please confirm?Sher, I will look into Leanne. I¡¦m glad that you responded as you made a determination to go on without an invasive procedure. You certainly gave sound logic for your choice. Were any medications prescribed for your IPF, and if so, have they been helpful? How long did it take to get the right one, and how was it determined that you are now on the right medicine?Yo Carloinagirl, what¡¦s the 2nd opinion for? A biopsy? I feel like I¡¦m in a corner where that is the only ¡¥intelligent¡¦ option available¡KBruce, I owe you a brotherly hug. We may never see each other but please know that it is folks like you that keep this world somewhat sane. Thank you for the detailed response and more questions.No six minute walk. I believe that my oxygen levels are steady at 98. My PC got a device for me to wear when I slept to assure that my oxygen level was not dropping. I¡¦m assuming that both my PC and the Pulmonologist do not feel the need for it. I looked it up. I think I will pass with flying colors if all I have to do is to walk for six minutes in the hospital corridors. Please enlighten me if there is more to it? No echocardiogram and/or stress echo. No one (PC, Pulmonolgist and the Thoracic Surgeon) has mentioned anything about it. I think my heart is in pretty good shape. Should I insist on it? Perhaps they will run some tests before the surgery. I¡¦m to receive the pre-op list by Monday.I have a Thoracic Surgeon who will be performing the VATS. He stated that ¡§this is the simplest procedure that he performs and that he has done hundreds of them¡¨. I also received a phone call from the hospital on Friday. They asked me a bunch of questions. The nurse, without me asking, said that this surgeon has performed a lot of VATS. She said that she was not aware of any issues or complications.Will I do any thing different as a result of when I find what I have? Yes. If what I have can be slowed down and somewhat treated then I will go on with life as is. I have a 12 yr old twin boy/girl. Both are in 7th grade. I will keep things as is until they graduate high school. However, if I¡¦m only looking at 6 mo¡¦s to 2-1/2 yr ( the worst case scenario depicted by the pulmonologist) then I will make immediate changes as what I am currently doing towards what is really important to me.My personal/Psychological need to find out what I have? The Thoracic surgeon wanted to do the procedure in November. I wanted to evaluate my options. I did not disclose it to anyone. I have been going thru a spectrum of emotions on a daily basis. When I finally called to schedule the VATS, my plan was to tell the family that I was going on a business trip. If I discovered that my PF can be treated and slowed down then I would keep it to my self. However, if it was the worst case scenario (6 months to 2-1/2 yrs) then I would tell my wife but still keep it from the kids. My rational was that I wanted to continue to see the happy faces of my wife and kids. I did not want them to stop living and live with the horrible news. So as per the plan, I sat down last weekend to write a letter to my wife and kids. I wanted to write the letter before the biopsy in case something went wrong during the procedure. I cried more than I wrote. When I got to the finances and the kids education and all of the other important stuff that they ¡¥may¡¦ have to manage without me, it dawned on me that my wife needs to be involved in these decisions. I realized that I have been in this self pity mode since I looked up PF. I shared the news with my wife on Monday. Monday was the most draining day of my life, Tuesday was not much better. I¡¦m still adamant that we keep the news from the kids at least until after we know what we¡¦re dealing with it. So, yes I have a strong personal/psychological need to know what I¡¦m dealing with here!!!!!!!!!!!!!!!!!!!!!!I grow up in a remote village in South East Asia (yeap, I¡¦m not 6-0, 47 year old, Caucasian male ƒº). The pulmonologist asked me what we used for heating. I shared with him what I recalled from my childhood. Mom and I had a ~400sf room. We cooked by burning wood and used the same for heating needs. Mom passed away in 2003. She was 72. She passed with various aliments including issue with the lungs. She was offered biopsy but refused. That is when the pulmonolgist theorized that I may have this since childhood. He stated that ¡¥now we know that being exposed to burning wood in inadequate ventilation causes lung fibrosis¡¨. Various contacts (doctors) have told me that this guy (the pulmonologist) is the best in the area. Your comment on ¡¥1cm node¡¦ suggests that it is too small to make a determination. Am I being rushed here so that a couple of people can see an increased in their billings? Yes the blood test was to rule out the auto immune concerns. I have a copy of it and will post or email it to you. You stated that you had a VATS so you can decide if you would use certain medicine or not. Can I be prescribed a certain medicine (i.e, Imuran/Prednisone) without a biopsy? Then take another CT to determine if the medicine is helping? What I¡¦m being told is that I ¡¥cannot¡¦ be given anything unless I go thru a biopsy. Headed out, taking the wife out to dinner,Dilwala, 10/2007, TBD, Northern California> > >> > > Bruce... I want to thank you for all the time you take to answer > > folks. Your post to Dilwala is so thorough. I know he will appreciate > > it. You are a real asset to the board.> > > Hugs to you.> > > Mama-Sher, 69; IPF, 3-06, OR.> > > Don't fret about tomorrow, God is already there!> > >> >>

[Guest guest]

Dilwala... much good luck to you, and your wife as she waits during the Vats. It would seem in your good condition that it will go well!

Let us know when and good energy will be sent your way.

Sher, 69, IPF 3-06, Sleep Apnea, OR.Don't fret about tomorrow, God is already there!

Re: VATS scheduled for 2/13. Should I go through the proceduere? Please give me your input.

I am now wondering why I was not asked to go thru more testing and straight to a biopsy after a CT scan, a PFT, and a blood test. Only Oxygen testing I have had is at my PC, at the Pulmomologist, at the Surgeon's office, at my wife's doctor (a Stanford graduate) when my wife insisted that we talk to her on Tuesday, 2/05. Every one of them showed a normal level, i.e, 98 point something. The method of testing was a splinter type device on my finger to read the oxygen level. In addition, my PC had requested a third party pulmonary care giver to loan me a device that I wore over night and returned it to them the next day. They dropped off the device at my work. The gentleman showed me how to use the device. He also tested me at 98+. I don't have the result of the overnight test. I will get them from my PC on Monday. I did inquire of the result when I visited the PC but he did not have them in my charts at that time. All of the Oxygen readings have been essentially at rest and none under exertion. On Tuesday, my wife and I walked to the polling station. Mapquest showed it at 1.1 miles. The entire walk was uphill. When we got closer to the polling stating my wife was more out of breath than I was. I also walk during my lunch. I walk ~4 miles in about an hour and fifteen minutes. I have a little sweat going but I am not overly fatigued or out of breath. As stated earlier, I'm running out of breath when I go on long tirades when coaching; I cannot guard my son when practicing basketball for more than a minute, etc. I just walked upstairs to yank the X-box away from my son (home work is not finished). He horsed around with me a little bit. I had to catch my breath. So, yes without question, my oxygen levels are dropping during exertion. I just have not been tested under exertion. I do need to become a better manger of my own medical heath. Joining this group certainly was a good start.Yes, sharing this with my wife (nineteenth anniversary this April) has taken a load off of me. I'm more at ease and now that a few days have past, she is actually coping with it a bit better. I have not taken care of the other important (legal) matters as well as I should have. I have given it a lot of thoughts though. Now, that my wife is on-board I will move ahead with them. Thank you all for welcoming me to the Air Family, responding at the site and/or via individual emails. The consensus, in general, is that I should proceed with the VATS. It is better to know than not; it is better to know sooner than later, and it is better to have the procedure when one is in decent health overall.My 7th grade All-Net Basketball team has a double header today, 2:30 and 5 p.m. Currently, we are 5-4. We have three remaining games in the regular season. Then the top two teams (out of 10) represent their prospective cities to the NJB National competition in Los Angeles. We're gunning to get there. My big man is only 5-10, while we compete against kids that are already 6-3. We play with heart, with smarts and they will have to beat us out of it. Just like this damn PF……Bruce, I will eagerly await your comments on weather I should insist on oxygen testing under exertion before the VATS?Dilwala, 10/2007, TDB, Northern California> > > > >> > > > > Bruce... I want to thank you for all the time you take to > > answer > > > > folks. Your post to Dilwala is so thorough. I know he will > > appreciate > > > > it. You are a real asset to the board.> > > > > Hugs to you.> > > > > Mama-Sher, 69; IPF, 3-06, OR.> > > > > Don't fret about tomorrow, God is already there!> > > > >> > > >> > >> >>

[Guest guest]

Yes, I do think you should have your oxygen checked under exertion.

If your oxygen isn't falling, then what is causing you to be out of

breath in the situations you describe? It's not your PF if your

oxygen is staying up. If your oxygen is falling that 4 minute mile

could be harming your system. To me there is just a piece missing so

far. We know under certain circumstances you are out of breath, but

some of those are more associated with emotional than physical

situation. We know there appears to be some evidence of fibrosis in

your lungs and your PFT's leave something to be desired. We don't

know that the PF is causing your out of breath symptoms. If it is,

your oxygen is dropping. If it isn't, then what is? Is it anxiety,

asthma, hypertension?

I'm by no means a doctor but I don't know anyone else who has headed

to a VATS and never even had their oxygen checked under exertion.

Let's say the SOB is hypertension-that is sure critical to know

before the VATS. Do you need oxygen at the hospital when you start

walking after the VATS? Time to know that is now. If i were your

doctor and your oxygen is dropping then i'd be comfortable with

having pushed for the VATS. It it's not dropping, then I'd have to go

back and reexamine my assumptions and look at the CT's again, perhaps

even ordering other CT's with emphasis on inspiration and expiration

if that wasn't done on the first. If I were your doctor and thought

you had PF, I sure wouldn't be allowing you to do all the physical

activity you are without ever having checked your oxygen under

exertion. You mentioned the overnight unit. There is also a 24 hour

unit.

At this moment as severe as my PFT's are and advanced as the doctors

say I am, I am able to sit on the sofa and remove my oxygen and I'm

at 96. Last night I couldn't do that when I was tired, it dropped

quickly to 90 and was still heading down and I had to keep the oxygen

on. If I got up and went to the kitchen without oxygen and returned I

would be around 86 or so. If I went out and walked through Walmart on

a regular shopping trip at full speed without oxygen I'd be below 80

in all likelihood. I was just out and about and I was on 3 liters and

maintained above 90. Last Sunday I required 4 liters and still had to

stop and slow down my pace. Now, I hope you check under exertion and

find your oxygen isn't dropping. No news could be better.

> > > > > >

> > > > > > Bruce... I want to thank you for all the time you take

> to

> > > answer

> > > > > folks. Your post to Dilwala is so thorough. I know he will

> > > appreciate

> > > > > it. You are a real asset to the board.

> > > > > > Hugs to you.

> > > > > > Mama-Sher, 69; IPF, 3-06, OR.

> > > > > > Don't fret about tomorrow, God is already there!

> > > > > >

> > > > >

> > > >

> > >

> >

>