Re: Elisa-My 2 cents on lung biopsy

[Guest guest]

Beth...

It sounds like the boipsy was beneficial in your case. That was probably about two years ago for you? I will just need to quit putting the cart before the horse to see what my doctor believes is best. I do feel like with others experiences, I will know my facts when presented with the option. I will then weigh everything carefully to decide. There are too many variables here to apply to one situation. Thanks for your 2 cents, which is always loaded with wisdom.

I hope you're having a good day! With those latest results you've received, I know you can feel pretty good.

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]

I feel it was beneficial in my case too although I still have pain from

the surgery but nothing serious.

I'm a need to know kind of guy in most circumstances so that played a

role in mine. Then the autopsy has revealed clearly to three different

pathologists, local, Mayo, and U of Chicago, that my form of PF is UIP.

While I would have preferrred another form, I prefer knowing to not

knowing. While this was the initial suspicion from the CT's, it would

not be enough for a definitive diagnosis from them. For example, the

University of Chicago still had some doubts after the CT they gave me.

But none after their pathologist did the review of the biopsy slides and

discussed with the pulmonologist.

Now, why did I find that important? One, to make a decision on

prednisone. Now that is complicated at this point with the belief I have

undifferentiated interconnective tissue disease but thats still waiting

me getting a second opinion on it. However, absent that, while it is

believed imuran and prednisone my help other forms such as NSIP (which

MB has and has benefitted from prednisone), most doctors do not believe

it helps UIP, that is absent it being caused by an autoimmune disease.

Second, it does keep me from having an unrealistic belief of the rate of

progression to expect or the lifespan to expect without transplant. Now

this isn't just important for life decisions and planning but for

treatment and transplant consideration also. Otherwise I might read the

slow progression of others and long periods and not realize that is

highly unlikely in my case.

I also considered a drug trial for which this would have been required.

Now the suspected autoimmune makes me ineligible.

I was also rather strong going into the biopsy and not too advanced in

age. So, I made it through relatively well.

Now, are there circumstances under which I think I would not have chosen

the biopsy? Absolutely. If I were going to try Imuran and Prednisone

regardless, then might not have. If I didn't have the personal need to

know. And, if I were substantially older or my health overall had been

poorer, I would not have or if I'd been dealing with this a good while

and was doing ok, then why mess it up.

> & 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;

>

[Guest guest]

Ken

OMG.....I love it. Biopsy Biopsy Biopsy. It was oxygen deprivation, Ken.

Autopsy, Biopsy...oh they all involve taking parts of me and putting

them under glass.....I can only imagine how an autopsy would have hurt.

I think I will wait on that.

> > & 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;

> >

>