Re: Questions to ask at Dr. Visit

[Guest guest]

,

Sorry to butt in--thought I would tell what litle I know:

When I was dx--my Dr told me the only way it could be confirmed was with a biopsy. I asked about getting into a study and I was told that I would have to have a biopsy to be considered. I had a VATS biopsy--they made 3 incisions (longest one is about 2") on my right side 4"-under my armpit and it looks like a triangle (I'm gonna tell the grandkids thats where I got shot in the war). I have heard alot of people say they would never do it again, but personally it was a very positive experience for me and was glad I did it. There are others on this board than can tell you about their experiences, but I have had several surgerys (broken arm, leg, thumb,etc) and have always felt OK with surgery. Now my wife---ABSOLUTELY the opposite--every surgery seems like she was luck to survive and hates the idea of surgery.

It would probably be best to see what your DR.suggests as he knows your situation and how comfortable you are about the surgery. They will tell you it is a 3-5 day stay in the hospital--I went home on the 4th day.

Our Bruce, may have better info than I do as he has been around and heard more and does a very good job with his research----Check with the DR first --then see what YOUR Bruce says. Good luck

G. UIP/IPF 5/07 AZ.

From: sherryjohnson16 <sherryjohnson16@ yahoo.com>Subject: Re: Hello, all!To: Breathe-Support@ yahoogroups. comDate: Saturday, June 14, 2008, 7:53 AM

Hi ,Glad to hear from you again. I hope your appointment with Dr. Glazier at UTSW in Dallas on Tuesday goes well. He wasn't with that group when I was a patient between 1999 & Dec 2002. Hope you like him. I'll be thinking positive thoughts on Tuesday for you.Gwynne, sorry about spelling your name incorrectly - over and over and over. When will I ever learn?Sherry 64, NSIP Nov '98, Bronchiectasis, PBC, PAH, Oral licen planus> > From: Sherry sherryjohnson16@ ...> Subject: Gynne's Update> To: Breathe-Support@ yahoogroups. com> Date: Friday, June 13, 2008, 6:58 AM> > > > > > > > > Oh, how great to hear that Gynne is getting to travel! & nbsp; Nice to hear how she is doing also. & nbsp; I'm a person that may have to consider a transplant, and love to keep tract of her input. & nbsp; Again, Thanks, Gynne for being so loyal to the rest of us.> & nbsp;> You gave me a great idea about using thin gloves for driving. & nbsp; I've had a pre-cancerous spot removed from one of my hands already. & nbsp; I

try to use sunscreen, but I also use hand santizer all the time, so most of it gets removed. & nbsp; Gloves are a much better answer. & nbsp; Thanks! & nbsp; This is what we learn from each other on this board, how to LIVE with this terrible disease.> & nbsp;> I also like how you use one e-mail to respond to many people, Gynne. & nbsp; I seem to have many responses, but hate to do one-at-a time e-mails.> & nbsp;> Gynne, I am the person who e-mailed you who also had Dr. Rosenblatt as a doctor in the past. & nbsp; I hope that group is being good to you as you recover!!> & nbsp;> Sherry , Age 64> NSIP 11'98 via Open Lung Biopsy, Bronchiectasis, PBC (liver autoimmune disease), PAH 2008, Oral Lichen Planus>

[Guest guest]

My experience was similar ot 's, except that I was in the hospital only two days. Once I got home, however, I milked it for all it was worth and got a few days of wallowing in the bed and being spoon fed. Best vacation I ever had. Neighbors sent over food and flowers. Lots of cards, but no money in any of them. Whatever happened to generosity?

Mostly the doctor will tell you where he will make incisions, use a magic marker to designate the side he's going to operate on - God forbid he should forget! You go to sleep quickly, have a nice nap, and wake up to feel you are moving, which means it's over and you are on your way to your room. I was granted permission to special order my meals because I'm picky about what I eat and something of a prima donna and besides the guy in charge was a friend of my daughter. The nurses were great and hovered over me until it was time to evacuate my bladder. I'll spare you the details of how she did it except that it hurt like hell.

Well, I did it, and I'm glad I did it, because it settled the question of just which type of fibrosis I have. And it full filled a gap in my medical record: my first surgery.

Jack

Gynne's Update> To: Breathe-Support@ yahoogroups. com> Date: Friday, June 13, 2008, 6:58 AM> > > > > > > > > Oh, how great to hear that Gynne is getting to travel! & nbsp; Nice to hear how she is doing also. & nbsp; I'm a person that may have to consider a transplant, and love to keep tract of her input. & nbsp; Again, Thanks, Gynne for being so loyal to the rest of us.> & nbsp;> You gave me a great idea about using thin

gloves for driving. & nbsp; I've had a pre-cancerous spot removed from one of my hands already. & nbsp; I try to use sunscreen, but I also use hand santizer all the time, so most of it gets removed. & nbsp; Gloves are a much better answer. & nbsp; Thanks! & nbsp; This is what we learn from each other on this board, how to LIVE with this terrible disease.> & nbsp;> I also like how you use one e-mail to respond to many people, Gynne. & nbsp; I seem to have many responses, but hate to do one-at-a time e-mails.> & nbsp;> Gynne, I am the person who e-mailed you who also had Dr. Rosenblatt as a doctor in the past. & nbsp; I hope that group is being good to you as you recover!!> & nbsp;> Sherry , Age 64> NSIP 11'98 via Open Lung Biopsy, Bronchiectasis, PBC (liver autoimmune disease), PAH 2008, Oral Lichen

Planus>

[Guest guest]

> & gt;

> & gt; From: Sherry sherryjohnson16@ ...

> & gt; Subject: Gynne's Update

> & gt; To: Breathe-Support@ yahoogroups. com

> & gt; Date: Friday, June 13, 2008, 6:58 AM

> & gt;

> & gt;

> & gt;

> & gt;

> & gt;

> & gt;

> & gt;

> & gt;

> & gt; Oh, how great to hear that Gynne is getting to travel!

& amp;nbsp; Nice

> to hear how she is doing also. & amp;nbsp; I'm a person that may have

to

> consider a transplant, and love to keep tract of her

input. & amp;nbsp;

> Again, Thanks, Gynne for being so loyal to the rest of us.

> & gt; & amp;nbsp;

> & gt; You gave me a great idea about using thin gloves for

driving. & amp;nbsp;

> I've had a pre-cancerous spot removed from one of my hands

> already. & amp;nbsp; I try to use sunscreen, but I also use hand

santizer

> all the time, so most of it gets removed. & amp;nbsp; Gloves are a

much

> better answer. & amp;nbsp; Thanks! & amp;nbsp; This is what we learn

from each

> other on this board, how to LIVE with this terrible disease.

> & gt; & amp;nbsp;

> & gt; I also like how you use one e-mail to respond to many people,

> Gynne. & amp;nbsp; I seem to have many responses, but hate to do one-

at-a

> time e-mails.

> & gt; & amp;nbsp;

> & gt; Gynne, I am the person who e-mailed you who also had Dr.

Rosenblatt

> as a doctor in the past. & amp;nbsp; I hope that group is being good

to you

> as you recover!!

> & gt; & amp;nbsp;

> & gt; Sherry , Age 64

> & gt; NSIP 11'98 via Open Lung Biopsy, Bronchiectasis, PBC (liver

> autoimmune disease), PAH 2008, Oral Lichen Planus

> & gt;

>