Re: VATS procedure

[Guest guest]

Darlene, I am the only one on board at this time. Unfortunately, I know nothing about the VATS biopsy

and can't give you anything but my best wishes for a successful procedure. When other members wake up and come on line I can assure you that you will get lots of useful information. I think that right now manny

are rubbing the sleep from their eyes, drinking their first cuppa with a big slice of chocolate cake smothered by chocolte frosting. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Thursday, September 24, 2009 9:46:31 AMSubject: VATS procedure

Hi everyone, again it has been awhile since I last posted. I read all of your posts everyday but sometimes I don't feel like I have anything to contribute. I'm still rather new at all of this and still all over the place with how I "feel". Somedays I'm great perfectly normal except for hauling my portable O2. Other days, not so much. I have lots of gratitude for being able to still do most of what I want to do most days. Those are my good days. The not so great days I'm feeling scared and tired and sorry for myself. I do my best to stay positive.A quick recap: I was diagnosed (by way of PFTs and CT and xrays and a bronchoscopy) with PF in April of this year. I see a local pulmonary specialist. I was in the hospital for a week. Three months after this I did more PFTs and I actually improved. Two months later, now, my ability to breathe has decreased, my diffusion stats are at 29%. My doctor has referred me to a thoracic surgeon to do a VATS

lung biopsy. I have researched this as much as I can, and I understand both the risks and the possibility that after doing this my treatment options may remain the same. Still I believe that this is what I need to do. I know that some of you have been through this procedure and would appreciate your opinions and suggestions to make this go as well as it possibly can. I am 55 years old and currently taking 10 mg prednisone daily and O2 24/7 at 2 lpm resting and 3-4 lpm with exersion. And 4 lpm for sleep. The doctor had me try Imuran, but I had an allergic reaction to it.Thank you all - Darlene

[Guest guest]

Darlene

My main point would be to not underestimate the VATS. It is invasive to

take three pieces of your lung. I know people who have been home a day

later and no people to have quite lengthy complications. The more

typical appears to be in the hospital for 3-4 days and pain after for

some period of time.

Make sure the anesthesiologist is fully aware of any previous issues

with anesthesia and the doctor aware of reactions to any meds. After the

procedure get up and walking as soon as possible, use the spirometer

religiously, make sure the respiratory tech does each nebulizer

treatment prescribed, and use a pillow against your chest to reduce pain

on coughing. Upon release be especially aware of the potential

complication of pneumonia. If you feel any setback that could possibly

be it get attention quickly. Continue to use your spirometer. An easy

way to detect a problem is seeing that suddenly you can't get the same

levels you were getting.

Many attribute the VATS to some deterioration in their condition. I've

tried to understand if that is true and reached a conclusion in my mind.

Saturation and breathing get at least temporarily worse with any major

surgery and then add on that this was lung surgery, I wouldn't expect to

be as good the day I got home as the day I left for surgery. The answer?

Respiratory Rehab. As soon as the doctor says you can. While it would be

good in all circumstances it can certainly help reverse the impact of

the surgery. Surgery, anesthesia, being less mobile for a while, all

take something out of you and I see respiratory rehab as the best way

you can possibly get that back.

Have the biopsy slides reviewed by multiple pathologists in multiple

hospitals. If you haven't been to an ILD center or Center of Excellence,

I would strongly recommend one.

>

> Hi everyone, again it has been awhile since I last posted. I read all

of your posts everyday but sometimes I don't feel like I have anything

to contribute. I'm still rather new at all of this and still all over

the place with how I " feel " . Somedays I'm great perfectly normal except

for hauling my portable O2. Other days, not so much. I have lots of

gratitude for being able to still do most of what I want to do most

days. Those are my good days. The not so great days I'm feeling scared

and tired and sorry for myself. I do my best to stay positive.

>

> A quick recap: I was diagnosed (by way of PFTs and CT and xrays and a

bronchoscopy) with PF in April of this year. I see a local pulmonary

specialist. I was in the hospital for a week. Three months after this

I did more PFTs and I actually improved. Two months later, now, my

ability to breathe has decreased, my diffusion stats are at 29%. My

doctor has referred me to a thoracic surgeon to do a VATS lung biopsy.

I have researched this as much as I can, and I understand both the risks

and the possibility that after doing this my treatment options may

remain the same. Still I believe that this is what I need to do. I

know that some of you have been through this procedure and would

appreciate your opinions and suggestions to make this go as well as it

possibly can. I am 55 years old and currently taking 10 mg prednisone

daily and O2 24/7 at 2 lpm resting and 3-4 lpm with exersion. And 4 lpm

for sleep. The doctor had me try Imuran, but I had an allergic reaction

to it.

>

> Thank you all - Darlene

>

[Guest guest]

Darlene,

I'm happy to see you posting again and I'm sorry you are feeling so crappy. The decision of whether or not to undergo a lung biopsy of any type is a big one. I had one in June of 2006 and if I had it to do over again I would. I say that in spite of the fact that it was difficult and painful. I did gain information from my biopsy that I don't think I would have had with the same degree of certainty any other way. Having that information made my doctors aggressively pursue the possibility of an auto-immune/connective tissue disease diagnosis which led to what is hopefully somewhat more effective treatment than I would have had.

Others feel very differently. Everyone is different. Ultimately you have to decide what the risk/reward ratio is for yourself and proceed from there.

One thing I would strongly recommend if you haven't already done so is to consult a specialist in interstitial lung diseases. I don't know where you live but if it's at all possible you really need to be seen by someone who sees these lung diseases every day as opposed to someone who sees mostly patients with things like asthma, emphysema, COPD and even lung cancer with only the very occasional ILD patient. One starting point for finding a specialist is www.ipfnet.org If one of those centers is not reasonably close to where you live, try calling university medical centers near your home to find an ILD specialist. If you've already done this, please forgive me for being redundant but if you haven't....I know it's a pain and perhaps it doesn't seem worth the trouble. It is. That's all I can really say, your life is at stake. Your diffusion is already at 29%. You

want to get the very best, most knowledgeable opinions and treatment you can.

Sending you my very best wishes!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, September 24, 2009 9:46:31 AMSubject: VATS procedure

Hi everyone, again it has been awhile since I last posted. I read all of your posts everyday but sometimes I don't feel like I have anything to contribute. I'm still rather new at all of this and still all over the place with how I "feel". Somedays I'm great perfectly normal except for hauling my portable O2. Other days, not so much. I have lots of gratitude for being able to still do most of what I want to do most days. Those are my good days. The not so great days I'm feeling scared and tired and sorry for myself. I do my best to stay positive.A quick recap: I was diagnosed (by way of PFTs and CT and xrays and a bronchoscopy) with PF in April of this year. I see a local pulmonary specialist. I was in the hospital for a week. Three months after this I did more PFTs and I actually improved. Two months later, now, my ability to breathe has decreased, my diffusion stats are at 29%. My doctor has referred me to a thoracic surgeon to do a VATS

lung biopsy. I have researched this as much as I can, and I understand both the risks and the possibility that after doing this my treatment options may remain the same. Still I believe that this is what I need to do. I know that some of you have been through this procedure and would appreciate your opinions and suggestions to make this go as well as it possibly can. I am 55 years old and currently taking 10 mg prednisone daily and O2 24/7 at 2 lpm resting and 3-4 lpm with exersion. And 4 lpm for sleep. The doctor had me try Imuran, but I had an allergic reaction to it.Thank you all - Darlene

[Guest guest]

Hi Darlene

I'm also 55 and we use the same LPM of O2 resting and exertion- we must be twins

separated at birth LOL! And I am also on 10mg prednisone. I had the VATS in July

of this year dx in June. Reason for VATS was the CT wasn't specific enough. For

me the procedure went very well, stayed overnight in hospital, once chest tube

was removed the pain was not that bad at all. They sent me home with a

prescription for oxycotin but the first 2 days home I just used one pill at

night to sleep. On 3rd day- just a little sore but started to use tylenol

instead. I think the most annoying part was that the incisions are right where

your bra is so the solution for me were sports bras (or no bra-if I wasn't going

out). My results were basically a mixture of different things same as the CT so

next week I go to Columbia Presbyterian in NYC which has an ILD department and

see what they say about everything. Hope this helps!- nne

>

> Hi everyone, again it has been awhile since I last posted. I read all of your

posts everyday but sometimes I don't feel like I have anything to contribute.

I'm still rather new at all of this and still all over the place with how I

" feel " . Somedays I'm great perfectly normal except for hauling my portable O2.

Other days, not so much. I have lots of gratitude for being able to still do

most of what I want to do most days. Those are my good days. The not so great

days I'm feeling scared and tired and sorry for myself. I do my best to stay

positive.

>

> A quick recap: I was diagnosed (by way of PFTs and CT and xrays and a

bronchoscopy) with PF in April of this year. I see a local pulmonary

specialist. I was in the hospital for a week. Three months after this I did

more PFTs and I actually improved. Two months later, now, my ability to breathe

has decreased, my diffusion stats are at 29%. My doctor has referred me to a

thoracic surgeon to do a VATS lung biopsy. I have researched this as much as I

can, and I understand both the risks and the possibility that after doing this

my treatment options may remain the same. Still I believe that this is what I

need to do. I know that some of you have been through this procedure and would

appreciate your opinions and suggestions to make this go as well as it possibly

can. I am 55 years old and currently taking 10 mg prednisone daily and O2 24/7

at 2 lpm resting and 3-4 lpm with exersion. And 4 lpm for sleep. The doctor

had me try Imuran, but I had an allergic reaction to it.

>

> Thank you all - Darlene

>

[Guest guest]

Thank you all for your input. I really do value it highly. I really thought

about this for quite a while before deciding that it was what I wanted to do. I

really don't like messing with already compromised lungs but I don't have much

of a choice with that. I can't imagine waiting to do this until my health gets

even worse. I live just south of Daytona Beach, Florida. My doctors are

talking about referring me to Shands Hospital (Gainesville or ville) or

Mayo Clinic in ville. I believe Shands-ville has a big pulmonary

department. I will take your advice and research this a bit more.

My pulmonary doctor says to expect 3-4 day hospital stay with week at home

before returning to work. The surgeon says a week stay in the hospital with 2

weeks at home. I'm praying for the best, the only way I can pay the bills is to

work and of course if I'm not working I have no insurance. This is a part of

being sick that I try hard not to think about but let's face it, that is easier

said than done.

Bruce when you speak of respiratory rehab, are you talking about pulmonary

rehab, or is this something different? I did do pulmonary rehab after I was

first diagnosed for a month. Although I did feel like by breathing improved, I

was a little disappointed with what they offered as " rehab " . Basically all it

was was walking on a treadmill, stationary bicycling and using an arm " cycle " .

No information on breathing techniques, nothing about nutrition and no tips on

living with this disease. I think that COPD is much more common, because

everyone I run into either has COPD or asks me if I have COPD. COPD is no picnic

either. I have a dear friend who has that and most of the time he is in way

worse shape than me. Funny thing, I almost get offended when someone hints that

I have COPD, there really is something wrong with me!

Thank you all again, it really does help to know that I'm not alone.

Darlene

[Guest guest]

Hi Darlene, Want to let you know Shands does have a very good Pulmonary rehab program. They treat you so well at Shands.I sent an e-mail yesterday to my PA and just got a call back from her. Usually my Dr. e-mails me the same day. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Thank you all for your input. I really do value it highly. I really thought about this for quite a while before deciding that it was what I wanted to do. I really don't like messing with already compromised lungs but I don't have much of a choice with that. I can't imagine waiting to do this until my health gets even worse. I live just south of Daytona Beach, Florida. My doctors are talking about referring me to Shands Hospital (Gainesville or ville) or Mayo Clinic in ville. I believe Shands-ville has a big pulmonary department. I will take your advice and research this a bit more. My pulmonary doctor says to expect 3-4 day hospital stay with week at home before returning to work. The surgeon says a week stay in the hospital with 2 weeks at home. I'm praying for the best, the only way I can pay the bills is to work and of course if I'm not working I have no insurance. This is a part of being sick that I try hard not to think about but let's face it, that is easier said than done. Bruce when you speak of respiratory rehab, are you talking about pulmonary rehab, or is this something different? I did do pulmonary rehab after I was first diagnosed for a month. Although I did feel like by breathing improved, I was a little disappointed with what they offered as "rehab". Basically all it was was walking on a treadmill, stationary bicycling and using an arm "cycle". No information on breathing techniques, nothing about nutrition and no tips on living with this disease. I think that COPD is much more common, because everyone I run into either has COPD or asks me if I have COPD. COPD is no picnic either. I have a dear friend who has that and most of the time he is in way worse shape than me. Funny thing, I almost get offended when someone hints that I have COPD, there really is something wrong with me! Thank you all again, it really does help to know that I'm not alone. Darlene

[Guest guest]

Darlene

First, as to rehab, yes, pulmonary or respiratory. Regardless of your

first experience, I would at least do some more after surgery. If for

nothing else, it provides discipline initially.

As to where to go, I'm going to answer based on where I'd go if I lived

where you do. While I might go to Shands or Mayo, ville or

doctors near them in the long run, I, personally, would want to go

somewhere else until very sure of my diagnosis. They are excellent

hospitals, but for PF I'd make the trip north to Emory or Duke and with

the recent change in directors at Emory, I'd make at least one or two

trips to Duke. Shands does have a big pulmonary department and its good,

but I just personally do not think they have the expertise specifically

with Interstitial Lung Diseases that the other hospitals I mentioned

have.

Also, now that I'm hearing only local doctors have reviewed your

condition, even if my decision was to have the VATS, I would not undergo

it prior to going to one of these hospitals and them looking over all

done to date plus performing their own tests. Once thats done, I'm sure

they'll have no objection to you having the actual VATS at Shands or

Mayo. First, I'd never undergo any surgery without a second opinion.

Second, I'd want to be diagnosed by the best I could get to.

For those who have gone to Shands and gotten excellent care (I know

Peggy is very happy with them), I'm not disputing that or dismissing

that at all, just expressing an opinion on where I would go.

>

> Thank you all for your input. I really do value it highly. I really

thought about this for quite a while before deciding that it was what I

wanted to do. I really don't like messing with already compromised

lungs but I don't have much of a choice with that. I can't imagine

waiting to do this until my health gets even worse. I live just south

of Daytona Beach, Florida. My doctors are talking about referring me to

Shands Hospital (Gainesville or ville) or Mayo Clinic in

ville. I believe Shands-ville has a big pulmonary

department. I will take your advice and research this a bit more.

>

> My pulmonary doctor says to expect 3-4 day hospital stay with week at

home before returning to work. The surgeon says a week stay in the

hospital with 2 weeks at home. I'm praying for the best, the only way I

can pay the bills is to work and of course if I'm not working I have no

insurance. This is a part of being sick that I try hard not to think

about but let's face it, that is easier said than done.

>

> Bruce when you speak of respiratory rehab, are you talking about

pulmonary rehab, or is this something different? I did do pulmonary

rehab after I was first diagnosed for a month. Although I did feel like

by breathing improved, I was a little disappointed with what they

offered as " rehab " . Basically all it was was walking on a treadmill,

stationary bicycling and using an arm " cycle " . No information on

breathing techniques, nothing about nutrition and no tips on living with

this disease. I think that COPD is much more common, because everyone I

run into either has COPD or asks me if I have COPD. COPD is no picnic

either. I have a dear friend who has that and most of the time he is in

way worse shape than me. Funny thing, I almost get offended when

someone hints that I have COPD, there really is something wrong with me!

>

> Thank you all again, it really does help to know that I'm not alone.

>

> Darlene

>

[Guest guest]

Once again I want to thank everyone for their suggustions and advice. I have a

wonderful family and the best of friends, but it is really hard to talk with

them some times. I really do appreciate you all being here for me and each

other. I had an awesome weekend, even had a few friends and family over for a

pool/barbeque party. Everyone that came over brought all the fixins that I

normally would have taken care of myself at one time. And thanks to my o2

concentrator and a good lenghth of hose I was able to join everyone for a great

game of pool volleyball. Hope everyone had a good weekend as well.

Darlene