Sandi

Rose Otterstetter wrote:

How does it work to contact you? Somehow, and I don't know how, I got a message through to you and now everytime I try to send one back to ask a question, it just sends it back to me. What is up with that? Hope you can help. Thanks,Rose (ottergal)

To Post a message, send it to: lungtransplant@yahoogroups.com
To Unsubscribe, send a blank message to: lungtransplant-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

sign in with your YahooID

Click on "Edit my membership" link

Scroll down the page a bit to "Email address' and enter the one you want your mail delivered to.

finally,,, scroll to bottom of page and click on "save changes"

sandi

Rose Otterstetter wrote:

How do I do that??? Let me know so I can get them to come to my e-mail address.

----- Original Message -----

From: S Wood

To: lungtransplant@yahoogroups.com

Sent: Friday, February 01, 2002 2:37 PM

Subject: Re: [lungtransplant] I don't understand

 Apparently this Group is active -- it's the members who aren't....  When you ask if
you're wasting your time by coming here... may I suggest you have mail forwarded to
your home address.  That way you won't be inconvenienced... or miss any posts that
might appear.

Sandi

ottergal wrote:

> Is this group still active? I don't see any posts beyond the summer
> of 2001. Is it true that no one has posted since then? I did send a
> post, but it has failed to appear, as this one probably will too. Am
> I wasting my time in coming here? Let me know what is happening.
 
 

To Post a message, send it to: lungtransplant@yahoogroups.com
To Unsubscribe, send a blank message to: lungtransplant-unsubscribe@yahoogroups.com
 

----- Original Message -----

From: Rose Otterstetter

To: lungtransplant@yahoogroups.com

Sent: Friday, February 01, 2002 2:45 PM

Subject: Re: [lungtransplant] I don't understand

How do I do that??? Let me know so I can get them to come to my e-mail address.

----- Original Message -----

From: S Wood

To: lungtransplant@yahoogroups.com

Sent: Friday, February 01, 2002 2:37 PM

Subject: Re: [lungtransplant] I don't understand

Apparently this Group is active -- it's the members who aren't....  When you ask if
you're wasting your time by coming here... may I suggest you have mail forwarded to
your home address.  That way you won't be inconvenienced... or miss any posts that
might appear.

Sandi

ottergal wrote:

> Is this group still active? I don't see any posts beyond the summer
> of 2001. Is it true that no one has posted since then? I did send a
> post, but it has failed to appear, as this one probably will too. Am
> I wasting my time in coming here? Let me know what is happening.



To Post a message, send it to: lungtransplant@yahoogroups.com
To Unsubscribe, send a blank message to: lungtransplant-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

To Post a message, send it to: lungtransplant@yahoogroups.com
To Unsubscribe, send a blank message to: lungtransplant-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

----- Original Message -----

From: S Wood

To: lungtransplant@yahoogroups.com

Sent: Friday, February 01, 2002 2:37 PM

Subject: Re: [lungtransplant] I don't understand

Apparently this Group is active -- it's the members who aren't....  When you ask if
you're wasting your time by coming here... may I suggest you have mail forwarded to
your home address.  That way you won't be inconvenienced... or miss any posts that
might appear.

Sandi

ottergal wrote:

> Is this group still active? I don't see any posts beyond the summer
> of 2001. Is it true that no one has posted since then? I did send a
> post, but it has failed to appear, as this one probably will too. Am
> I wasting my time in coming here? Let me know what is happening.



To Post a message, send it to: lungtransplant@yahoogroups.com
To Unsubscribe, send a blank message to: lungtransplant-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

Apparently this Group is active -- it's the members who aren't....  When you ask
if
you're wasting your time by coming here... may I suggest you have mail forwarded
to
your home address.  That way you won't be inconvenienced... or miss any posts
that
might appear.

Sandi

ottergal wrote:

> Is this group still active? I don't see any posts beyond the summer
> of 2001. Is it true that no one has posted since then? I did send a
> post, but it has failed to appear, as this one probably will too. Am
> I wasting my time in coming here? Let me know what is happening.

----- Original Message -----

From: Ruth

To: lungtransplant@yahoogroups.com

Sent: Friday, February 01, 2002 2:41 PM

Subject: Re: [lungtransplant] I don't understand

I don't get much email from the IPF'ers, neither... have you joined the SecondWind list? they are very chatty there.

 

Ruth
Ratbone Rescues Transport Coordinator
http://www.windowgroup.com/ratbone/
http://glassypets.homestead.com
"There is no psychiatrist in the world like a puppy licking your face."

----- Original Message -----

From: Rose Otterstetter

To: lungtransplant@yahoogroups.com

Sent: Friday, February 01, 2002 3:33 PM

Subject: Re: [lungtransplant] I don't understand

actually I posted another message and it disappeared in cyber space somewhere. Is it worth my time to type out a message to be posted or is there no one to read it anyway? Maybe I should post on the IPFers page. Please let me know.

Thanks,

Rose

----- Original Message -----

From: Ruth

To: lungtransplant@yahoogroups.com

Sent: Friday, February 01, 2002 2:35 PM

Subject: Re: [lungtransplant] I don't understand

I don't know if it is still going or not.. your email is the first I have
ever gotten, I think...

Ruth
Ratbone Rescues Transport Coordinator
http://www.windowgroup.com/ratbone/
http://glassypets.homestead.com
"There is no psychiatrist in the world like a puppy licking your face."

----- Original Message -----
From: "ottergal" <otterfam@...>
To: <lungtransplant@yahoogroups.com>
Sent: Friday, February 01, 2002 3:22 PM
Subject: [lungtransplant] I don't understand


> Is this group still active? I don't see any posts beyond the summer
> of 2001. Is it true that no one has posted since then? I did send a
> post, but it has failed to appear, as this one probably will too. Am
> I wasting my time in coming here? Let me know what is happening.
>
>
>
> To Post a message, send it to: lungtransplant@yahoogroups.com
> To Unsubscribe, send a blank message to:
lungtransplant-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>
>



To Post a message, send it to: lungtransplant@yahoogroups.com
To Unsubscribe, send a blank message to: lungtransplant-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

To Post a message, send it to: lungtransplant@yahoogroups.com
To Unsubscribe, send a blank message to: lungtransplant-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

To Post a message, send it to: lungtransplant@yahoogroups.com
To Unsubscribe, send a blank message to: lungtransplant-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

----- Original Message -----

From: Rose Otterstetter

To: lungtransplant@yahoogroups.com

Sent: Friday, February 01, 2002 3:33 PM

Subject: Re: [lungtransplant] I don't understand

actually I posted another message and it disappeared in cyber space somewhere. Is it worth my time to type out a message to be posted or is there no one to read it anyway? Maybe I should post on the IPFers page. Please let me know.

Thanks,

Rose

----- Original Message -----

From: Ruth

To: lungtransplant@yahoogroups.com

Sent: Friday, February 01, 2002 2:35 PM

Subject: Re: [lungtransplant] I don't understand

I don't know if it is still going or not.. your email is the first I have
ever gotten, I think...

Ruth
Ratbone Rescues Transport Coordinator
http://www.windowgroup.com/ratbone/
http://glassypets.homestead.com
"There is no psychiatrist in the world like a puppy licking your face."

----- Original Message -----
From: "ottergal" <otterfam@...>
To: <lungtransplant@yahoogroups.com>
Sent: Friday, February 01, 2002 3:22 PM
Subject: [lungtransplant] I don't understand


> Is this group still active? I don't see any posts beyond the summer
> of 2001. Is it true that no one has posted since then? I did send a
> post, but it has failed to appear, as this one probably will too. Am
> I wasting my time in coming here? Let me know what is happening.
>
>
>
> To Post a message, send it to: lungtransplant@yahoogroups.com
> To Unsubscribe, send a blank message to:
lungtransplant-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>
>



To Post a message, send it to: lungtransplant@yahoogroups.com
To Unsubscribe, send a blank message to: lungtransplant-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

To Post a message, send it to: lungtransplant@yahoogroups.com
To Unsubscribe, send a blank message to: lungtransplant-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

----- Original Message -----

From: Ruth

To: lungtransplant@yahoogroups.com

Sent: Friday, February 01, 2002 2:35 PM

Subject: Re: [lungtransplant] I don't understand

I don't know if it is still going or not.. your email is the first I have
ever gotten, I think...

Ruth
Ratbone Rescues Transport Coordinator
http://www.windowgroup.com/ratbone/
http://glassypets.homestead.com
"There is no psychiatrist in the world like a puppy licking your face."

----- Original Message -----
From: "ottergal" <otterfam@...>
To: <lungtransplant@yahoogroups.com>
Sent: Friday, February 01, 2002 3:22 PM
Subject: [lungtransplant] I don't understand


> Is this group still active? I don't see any posts beyond the summer
> of 2001. Is it true that no one has posted since then? I did send a
> post, but it has failed to appear, as this one probably will too. Am
> I wasting my time in coming here? Let me know what is happening.
>
>
>
> To Post a message, send it to: lungtransplant@yahoogroups.com
> To Unsubscribe, send a blank message to:
lungtransplant-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>
>



To Post a message, send it to: lungtransplant@yahoogroups.com
To Unsubscribe, send a blank message to: lungtransplant-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

I don't know if it is still going or not.. your email is the first I have
ever gotten, I think...

Ruth
Ratbone Rescues Transport Coordinator
http://www.windowgroup.com/ratbone/
http://glassypets.homestead.com
"There is no psychiatrist in the world like a puppy licking your face."

----- Original Message -----
From: "ottergal" <otterfam@...>
To: <lungtransplant@yahoogroups.com>
Sent: Friday, February 01, 2002 3:22 PM
Subject: [lungtransplant] I don't understand


> Is this group still active? I don't see any posts beyond the summer
> of 2001. Is it true that no one has posted since then? I did send a
> post, but it has failed to appear, as this one probably will too. Am
> I wasting my time in coming here? Let me know what is happening.
>
>
>
> To Post a message, send it to: lungtransplant@yahoogroups.com
> To Unsubscribe, send a blank message to:
lungtransplant-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>
>

Is this group still active? I don't see any posts beyond the summer
of 2001. Is it true that no one has posted since then? I did send a
post, but it has failed to appear, as this one probably will too. Am
I wasting my time in coming here? Let me know what is happening.

Thanks to all who responded to last nite's mini poll on whether you'd
use Preds vs Actimmune if diagnosed now.

There were 13 responses.
Five chose Prednisone, six opted to start immediately with Actimmune,
while two would use both (Actimmune along with low dose pred)

Appreciate the responses!

sandi

Sandi,

What a poll!

Reminds me of that joke about a man that dies and goes to Hell and
the Devil offers him the choice of one of three doors behind which to
spend eternity--One, Two or Three.

Behind door number One, millions of people are standing on their
heads on a wooden floor.

Behind door number Two, millions of people are standing on their
heads on a concrete floor.

Behind door number Three, millions of people are standing upright in
six inches of shit, drinking a cup of coffee.

"So what will it be?", says the Devil.

"Well, I don't know", the guy says, "that six inches of shit is hard to take,
but behind those first two doors it's really rough.  I think I'll take number
Three".

And so he goes.

But just as the poor slob walks in and hears the door slam shut behind
him, an announcer's voice rings out--"OK, coffee break's over, back on
your heads".

OK, you heard it already.  Everybody's heard it already.

Me, stupid jerk that I am, would (again) take Prednisone, combine it
with Colchicine and N-Acetyl Cysteine, augment it with daily doses of
protein powder, a steady diet of antibiotics, and down the stretch I'd
add Imuran to the mix.  Before I line up for it, let me see Actimmune
offer hospitals and doctors something other than a generic drug to
prescribe.  Ever hear what they get for it in Canada?  Bucks, big ones.

Respectfully,

Roger Stevens



On 13 Aug 2001, at 20:46, S Wood wrote:

> I have a question I'm hoping those of you who have IPF can answer,
> please.  Call this sort of a poll, if you will.
>
> If money were no object and you were diagnosed with IPF tomorrow, would
> your choice of treatment be:
>
> 1) conventional (start with hi dose prednisone, see where it goes from
> there)
>
> 2) New (start with Interferon Gamma 1b (Actimmune)
>
> 3) Modified (Actimmune with low-moderate dose of prednisone)
>
> Would really appreciate feedback on this.
>
> Thanks ever so much.  I hope everyone is having as healthy a summer
> possible.  Stay hydrated; stay cool!
>
> sandi
>
>
> To Post a message, send it to: lungtransplant@yahoogroups.com
> To Unsubscribe, send a blank message to:
> lungtransplant-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>
>


--------------------------------------------------------------
Copyright(c)2001 by Roger W. Stevens-All Rights Reserved.
email: rstevens@...
Personal URL: http://home.netcarrier.com/~rstevens
Lung Transplant URL: http://www.newlungs.com
*Double-Lung Transplant at UMMC June 10, 1997*
****Support Presumed Consent in the USA.****
--------------------------------------------------------------

I have a question I'm hoping those of you who have IPF can answer,
please.  Call this sort of a poll, if you will.

If money were no object and you were diagnosed with IPF tomorrow, would
your choice of treatment be:

1) conventional (start with hi dose prednisone, see where it goes from
there)

2) New (start with Interferon Gamma 1b (Actimmune)

3) Modified (Actimmune with low-moderate dose of prednisone)

Would really appreciate feedback on this.

Thanks ever so much.  I hope everyone is having as healthy a summer
possible.  Stay hydrated; stay cool!

sandi

Dear Gregory,

This is becoming a complicated email but I will still try to intersperse my
comments so I don't miss anything.  Let's see here...

On 4 Jul 2001, at 16:42, Gregory Blake wrote:

> At 1:30 AM -0400 7/2/01, Roger W. Stevens WA3FLE wrote:
> >
> >
> >On 1 Jul 2001, at 18:56, Gregory Blake wrote:
> >
> >>  Hey there folks,
> >>
> >>  I just was pointed over to this list by someone on the IPF list.  So I
> >>  thought I'd introduce myself.  My name's Gregory, I'm 32, and am on
> >>  the lung transplant list at Brigham & Women's Hospital in Boston.  I
> >>  live in Cambridge, MA, and have been dealing with IPF for around 2
> >>  years (Well, that I know of.  In hindsight I can see evidence of it
> >>  going back further then that).
> >
> >You are a young guy to have IPF.  I'd ask if it's ever appeared in anyone
> >else in your family?  The good news is that you're on a list, and if you
> >want to look at it this way, you're young and like software--garbage in,
> >garbage out, and you're not garbage, transplant-wise.  You can do this,
> >but with your strong and fast metabolism as compared to older patients,
> >you must be viligent and not fall asleep at the wheel.  IPF has been
> >known to be tough on us younger types (I was 44 when I was diagnosed).  I
> >was told all the time that it's harder on older patients, but I've never
> >seen it.
>
> Nope, nobody in my family has ever had it that I'm aware of.  That's one
> of the big mysteries with this.  Where exactly it came from. It's not like
> I have a job that increased my chance of getting it (I'm the manager of an
> IT group).  I am actually fairly healthy. Used to be able to stay up all
> night long dancing at raves (sigh...).
>

No point worrying about it now, sad to say.  I did the same thing.  I
mentally went through an inventory of every harmful substance I was
ever exposed to--weed killer, mold from unclean humidifiers--some
point to mold as a possible cause--flea collars, fiberglas insulation in
the attic when placing boxes up there--there is some evidence that
silicates are a contibutor--smoke from our fireplace insert wood stove--
which while clean, does emit smoke, however little, ahich has been
posited as a possible cause, and so forth.  I had smoked cigarettes but
quit three years before I was diagnosed, so I tell people that still smoke
to never quit, but that's just a bad joke.  It's idiopathic.  And you got
triggered.  How and why are kind of beside the point--now it's war.

> >
> >>  I've been on the list since beginning of this year, though I
> >>  inactivated myself for around a month because I'm doing some
> >>  travelling and I'm also taking some time just to make sure I've got
> >>  everything all set for when I have to go into the hospital (little
> >>  things like making sure my parents know where everything important in
> >>  my apartment is so that they can handle things like paying my rent,
> >>  bills, and such).
> >
> >I was the same way--made lists of all my possessions, had the roof
> >done, did the will thing, the hoarded money in a low-interest but liquid
> >savings account, and did everything I could while I could still get out
> >of the house.  After my oxygen requirement hit 12LPM on a mask, that was
> >it, I was housebound--it eventually went to 24LPM in the mask with
> >another 10LPM through a parallel nasal cannula to recover from movement.
> >It keeps you busy and aloows you to come up on the idea from behind--sort
> >of sneak up on it, if you will.
>
> Wow. My liter flow is only at 2 right now.  Though there are some
> days when I think it should be bumped up a little.  And I'm not even
> wearing it all the time.  But right now my big concern is that I take care
> of the few things that I feel I need to before I can have this done.  I
> want things to be as easy as possible for my parents when they are helping
> me take care of things around my apartment.
>

Well, I went on oxygen in September, 1996, and started out at about 3-
4 LPM, so I waited way too long to start.  But my consumption
increased at a rate of roughly double every 3 months, until 9 months
later, I was at 24LPM.  3, 6, 12, 24--that was the progression.  I have
IPF in my family, and that and being relatively young when I was
diagnosed at 44 made me a worst-case example.  Others never see
that kind of flow rate--in fact, nobody I've ever met.

> >
> >Being immune-suppressed is not a lot worse than having a sniffle more or
> >less all the time, or so it seems.  You learn to wash your hands, but you
> >should do this anyway--people are pigs.  You avoid children that are
> >dropped off in daycare centers, as you should, but you go out and with a
> >eye towards avoiding obvious risks, you can be all you wanna be, do all
> >you wanna do.
>
> This has really been my biggest fear.  Dealing with this.  I've
> already had to change my lifestyle quite a bit.  And I'm wondering if I
> should just plan on not going out again.  Even now, the whole clubbing
> thing just doesn't really happen much anymore.  I sneak out now and then
> when I've got a DJ gig, but even those are special occasions these days
> (If they could just have smoke-free clubs!).  Of course, in the end, those
> are minor sacrifices to make in order to be able to breath freely again.
>

Well, to be honest, as was explained to me by my second opinion
Pulmonologist, and a fact that has been borne out by much observation
since, it's not IPF that will likely "get you"--it's something like a
secondary infectin that goes undoiscovered until a course of antibiotics
can't get hold of it in time, or an opportunistic infection that does the
same thing.

If, however, you own a personal oximeter and measure your sat level so
you can identify a secondary infection that is often asymptomatic but for
a sat level drop, and have antibiotics on hand for such an emergency,
then you should be able to go where you want to.  But avoid smoke-
filled establishments, places where people or kids cough in the seat
behind you, and always wash your hands.  Also, avoid bowling--bowling
balls are bacterial nightmares, as are other people's keyboards and
telephones.

Oh, and never touch your eyes after shaking hands with some fecally-
contaminated douche bag.

Pardon my French.

>
> Thanks for all your responses.  It's amazing how much it all helps.
> I know that until I finally go in for this it will probably still
> seem like a big dream.  :)
>

I know.   It's a bad joke.  You get sick and don't get better, unlike every
other time in your life.  Funny ha ha.  I'm not laughing.

>
> peace
> gregory

Be well and hang in there.

Roger Stevens
Norristown, PA

> --
> Gregory J. Blake -- gblake@... -- AOL:ImSnooze -- ICQ: 1367921
> Web: http://www.ezoons.com/~gblake/ "I'm pretty sure 'Baka' means 'No More
> Beer'" - Largo

--------------------------------------------------------------
Copyright(c)2001 by Roger W. Stevens-All Rights Reserved.
email: rstevens@...
Personal URL: http://home.netcarrier.com/~rstevens
Lung Transplant URL: http://www.newlungs.com
*Double-Lung Transplant at UMMC June 10, 1997*
****Support Presumed Consent in the USA.****
--------------------------------------------------------------

At 1:30 AM -0400 7/2/01, Roger W. Stevens WA3FLE wrote:
>
>
>On 1 Jul 2001, at 18:56, Gregory Blake wrote:
>
>>  Hey there folks,
>>
>>  I just was pointed over to this list by someone on the IPF list.  So I
>>  thought I'd introduce myself.  My name's Gregory, I'm 32, and am on the
>>  lung transplant list at Brigham & Women's Hospital in Boston.  I live in
>>  Cambridge, MA, and have been dealing with IPF for around 2 years (Well,
>>  that I know of.  In hindsight I can see evidence of it going back further
>>  then that).
>
>You are a young guy to have IPF.  I'd ask if it's ever appeared in anyone
>else in your family?  The good news is that you're on a list, and if you
>want to look at it this way, you're young and like software--garbage in,
>garbage out, and you're not garbage, transplant-wise.  You can do this,
>but with your strong and fast metabolism as compared to older
>patients, you must be viligent and not fall asleep at the wheel.  IPF has
>been known to be tough on us younger types (I was 44 when I was
>diagnosed).  I was told all the time that it's harder on older patients, but
>I've never seen it.

Nope, nobody in my family has ever had it that I'm aware of.  That's
one of the big mysteries with this.  Where exactly it came from.
It's not like I have a job that increased my chance of getting it
(I'm the manager of an IT group).  I am actually fairly healthy.
Used to be able to stay up all night long dancing at raves (sigh...).


>
>
>>  I've been on the list since beginning of this year, though I
>>  inactivated myself for around a month because I'm doing some
>>  travelling and I'm also taking some time just to make sure I've got
>>  everything all set for when I have to go into the hospital (little
>>  things like making sure my parents know where everything important in my
>>  apartment is so that they can handle things like paying my rent, bills,
>>  and such).
>
>I was the same way--made lists of all my possessions, had the roof
>done, did the will thing, the hoarded money in a low-interest but liquid
>savings account, and did everything I could while I could still get out of
>the house.  After my oxygen requirement hit 12LPM on a mask, that
>was it, I was housebound--it eventually went to 24LPM in the mask with
>another 10LPM through a parallel nasal cannula to recover from
>movement.  It keeps you busy and aloows you to come up on the idea
>from behind--sort of sneak up on it, if you will.


Wow. My liter flow is only at 2 right now.  Though there are some
days when I think it should be bumped up a little.  And I'm not even
wearing it all the time.  But right now my big concern is that I take
care of the few things that I feel I need to before I can have this
done.  I want things to be as easy as possible for my parents when
they are helping me take care of things around my apartment.


>
>Being immnue-suppressed is not a lot worse than having a sniffle more
>or less all the time, or so it seems.  You learn to wash your hands, but
>you should do this anyway--people are pigs.  You avoid children that
>are dropped off in daycare centers, as you should, but you go out and
>with a eye towards avoiding obvious risks, you can be all you wanna
>be, do all you wanna do.

This has really been my biggest fear.  Dealing with this.  I've
already had to change my lifestyle quite a bit.  And I'm wondering if
I should just plan on not going out again.  Even now, the whole
clubbing thing just doesn't really happen much anymore.  I sneak out
now and then when I've got a DJ gig, but even those are special
occasions these days (If they could just have smoke-free clubs!).  Of
course, in the end, those are minor sacrifices to make in order to be
able to breath freely again.

Thanks for all your responses.  It's amazing how much it all helps.
I know that until I finally go in for this it will probably still
seem like a big dream.  :)

peace
gregory
--
Gregory J. Blake -- gblake@... -- AOL:ImSnooze -- ICQ: 1367921
Web: http://www.ezoons.com/~gblake/
"I'm pretty sure 'Baka' means 'No More Beer'" - Largo

Dear Sandi,

Hi and thanks for our support.  And thanks for your kind comments and
best wishes.  I only wish I were not such an apparently rare species,
and that more lung transplantees existed that could share their
experiences.  It's not for lack of available facilities, but probably
more due to a lack of awareness in the General Practitioner and even
Pulmonological community that such treatment is either necessary or
even exists.  And after that, late referrals take their toll.

Woe be to the person that goes to a doctor that mostly tells him or
her how great they look, which I translate as, "I don't know what you
have or what to do about it, but I sure know you're a sick sonofagun
and I just hope you don't blame me for it".  Ah, maybe it's closer to,
"You're a sick sonfagun and God knows that's the last thing I should
tell you--if you knew, you'd probably commit suicide".

I digress.  I actually had a terrific Pulmonologist--my second opinion
guy, Dr. Figueroa--who did some of this, but he knew what he was doing
and didn't want me to suffer mentally as well as physically, all the
while preparing me for the transplant I almost didn't get.

Problem was, he started to believe his own PR, and was late getting me
into Penn for an evaluation, and when they started to act very
suspicious, he never took action to move me to a different center.  It
was actually the Transplant Pulmonologist at Penn, Dr. Kotloff, that
finally told me I should go to UMMC where they had a shorter list, and
where I would actually get a transplant, as opposed to merely being
promised one I would never get at Penn, for whatever reason.

All this and a disease to manage, too.  It's no wonder few people get
a real chance, when the system is so predisposed to avoid a high-risk
case.

I have always said, "Behind every problem in America, there is an
Insurance Company".

It's the white-collar Mafia, the only difference being--as far as I
have ever been able to tell--there are NO Federal laws on the books
regulating the Insurance Industry.  NONE.  Yet they spend more money
on lobbying than almost any other industry.  Lobbying for what?  No
Laws!

Find one and tell me about it.  Don't tell me about HCFA.  That's not
insurance, that's finance.

So I hope you are having a Happy Fourth of July and enjoying what it
is to be an American.  Fat, dumb, and semi-happy.  God Bless, I mean
God Save George Bush.

Be good.

Roger


--- In lungtransplant@y..., SWood <woodrow@b...> wrote:
> hello everyone.  Some of you know me (might wish you didn't)...
> anyway I'm joining this list as more of a lurker & learner than as
> an active pursuer of lung transplantation -- at least for the time
> being.
>
> This may change at any time.
>
> On another note, congrats to Roger who's now 4 yrs post tx!  &
> thanks, Rog, for this site!
>
> Sandi
> 'when lung disease strikes, there's  no air to go !'

Dear Gregory,

Hi.  I'm Roger Stevens and apparently my wife Judy wrote to you a little
earlier tonite.  I was born at the Lying In hospital in Boston in 1950, by
the way, and lived in Mansfield for 5 years, and for a time in Holliston,
where my Dad--who also had IPF--was born.

Let me see what you have here...


On 1 Jul 2001, at 18:56, Gregory Blake wrote:

> Hey there folks,
>
> I just was pointed over to this list by someone on the IPF list.  So I
> thought I'd introduce myself.  My name's Gregory, I'm 32, and am on the
> lung transplant list at Brigham & Women's Hospital in Boston.  I live in
> Cambridge, MA, and have been dealing with IPF for around 2 years (Well,
> that I know of.  In hindsight I can see evidence of it going back further
> then that).

You are a young guy to have IPF.  I'd ask if it's ever appeared in anyone
else in your family?  The good news is that you're on a list, and if you
want to look at it this way, you're young and like software--garbage in,
garbage out, and you're not garbage, transplant-wise.  You can do this,
but with your strong and fast metabolism as compared to older
patients, you must be viligent and not fall asleep at the wheel.  IPF has
been known to be tough on us younger types (I was 44 when I was
diagnosed).  I was told all the time that it's harder on older patients, but
I've never seen it.


> I've been on the list since beginning of this year, though I
> inactivated myself for around a month because I'm doing some
> travelling and I'm also taking some time just to make sure I've got
> everything all set for when I have to go into the hospital (little
> things like making sure my parents know where everything important in my
> apartment is so that they can handle things like paying my rent, bills,
> and such).

I was the same way--made lists of all my possessions, had the roof
done, did the will thing, the hoarded money in a low-interest but liquid
savings account, and did everything I could while I could still get out of
the house.  After my oxygen requirement hit 12LPM on a mask, that
was it, I was housebound--it eventually went to 24LPM in the mask with
another 10LPM through a parallel nasal cannula to recover from
movement.  It keeps you busy and aloows you to come up on the idea
from behind--sort of sneak up on it, if you will.


> To be honest, I'm still a bit freaked out about all this, since in
> some ways it feels like it's all happened so rapidly.  I'd love to
> hear from anyone out there who has had a tranplant about life
> afterwards.  I know there is a period of recovery, but hearing about
> people's experiences is something that would be most helpful to me. For
> instance, I know that the antirejection medications reduce your immune
> system.  How much of an issue of this for people.  Does this mean you have
> to be careful about going out whenever?  Do you find you have to avoid
> large groups of people?  Are there other things that were issues for you?

This is the easiest part of your situation to address.  There are hard
cases and there are tough cases.  I was probably the sickest patient
ever successfully transplanted at UMMC down in Baltimore, but I've
been somewhat of a poster child--knock on wood--ever since.  So in
my case, it was actually garbage in, not garbage out.

My third day in ICU I was hitting 99% sats on room air.  I had 6 tubes
coming out of me, and I couldn't even lift my legs off the bed, but I was
alive and breathing.  No pain, either.  If they have to call the pain
management people at home, they messed something up  Normally,
it's not a physical issue, the surgery, that is.

Recovery is a job, pure and simple.  The sicker you are, the more
rehab you will need.  I'd say not to expect to feel out of the woods for the
first three months, but at approximately that point, you will begin a
period wherein at some point you suddenly realize that you haven't
been hospitalized for a while.

At that point, you are on automatic pilot.  The pills are more of a logistic
issue than a burden.  Insurance problems take center stage.  You health
returns, and your life along with it.  Delayed stress syndrome may be a
side-effect, either for you or your support-giver (or family), but it's not a
lot different than any life-changing event.

Importantly, the problems you expect will be big ones before you get the
transplant are not those that you find most bothersome thereafter.  For
example, I was concerned that you lose the ability to cough, or so I was
told.  Truth is, you do lose some sensitivity, but you retain a gag reflex,
so aspiration is not the risk I worried about.

Being immnue-suppressed is not a lot worse than having a sniffle more
or less all the time, or so it seems.  You learn to wash your hands, but
you should do this anyway--people are pigs.  You avoid children that
are dropped off in daycare centers, as you should, but you go out and
with a eye towards avoiding obvious risks, you can be all you wanna
be, do all you wanna do.

Let's move on...


> The one thing that really drives me on with all this is the hope that
> someday I'll be able to walk up a flight of stairs without gasping for
> breath by the time I get to the 10th step :).

Imagine going up stairs on backwards on your behind, taking 5-10
minutes to recover from the sat level drop you experience at each step.
That was me.  90 minutes to cover 14 steps at the worst.  Once it took
me nearly two hours.  My local Pulmonologist told me early on that he
had a young 24-year-old patient with inherited COPD, that after his
double-lung transplant used to run up and down two flights of stairs
several times every day.  When he asked him why he did it, he told him,
"because I can!".  It was this thought that I held in my heart during the
worst phases of mty disease, when I'd sweat those steps every day, up
at night, and down in the morning (or afternoon).   You can do it and you
will.

It's not as impossible as it seems, and the idea you see now is a real
possibility and worth all the work, all the hope and disappointment, plus
all the suffering you may go through to get there.  Or I should say here.
On the other side--on room air.

Stay in the game.  Never give up.  It's not over until it's over, and it's not
over until you say it is.

> peace
> gregory

Take care.

See my lung Tx website at:

http://www.newlungs.com

See my IPF website at:

http://home.netcarrier.com/~rstevens

Roger (and Judy) Stevens
Norristown, PA


> --
> Gregory J. Blake -- gblake@... -- AOL:ImSnooze -- ICQ: 1367921
> Web: http://www.ezoons.com/~gblake/ "I'm pretty sure 'Baka' means 'No More
> Beer'" - Largo
>
>
> To Post a message, send it to: lungtransplant@yahoogroups.com
> To Unsubscribe, send a blank message to:
> lungtransplant-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>
>


--------------------------------------------------------------
Copyright(c)2001 by Roger W. Stevens-All Rights Reserved.
email: rstevens@...
Personal URL: http://home.netcarrier.com/~rstevens
Lung Transplant URL: http://www.newlungs.com
*Double-Lung Transplant at UMMC June 10, 1997*
****Support Presumed Consent in the USA.****
--------------------------------------------------------------

Hi Gregory,

I'm the wife of a transplant person...double-lung at U. of Maryland -
June 9 & 10th of 1997. In fact, we just celebrated his 4th year and
yes, I can speak for him and say it was worth it...esp. for me!!

He will respond to you and be happy to answer all of the specific
questions you have with regard to post-transplant life. I'm sure
you'd rather hear it directly from him...and he can tell it better
anyway as he is the one experiencing life before and after.

I just wanted to say that you sound really good and upbeat despite
the fears you mentioned you have. Just keep things moving forward
like you're already doing.

I'll be looking forward to news from/of you when you get the call.
All the best,
Judy
----------------------------------------------------------
Copyright 2000 by Judith A. Stevens, Norristown, PA
email: jstevens@...
URL: http://www.voicenet.com/~jstevens
Be an organ donor and inform your family of your decision.
Please don't take your organs to Heaven.
Heaven knows we need them here.
----------------------------------------------------------

Hey there folks,

I just was pointed over to this list by someone on the IPF list.  So
I thought I'd introduce myself.  My name's Gregory, I'm 32, and am on
the lung transplant list at Brigham & Women's Hospital in Boston.  I
live in Cambridge, MA, and have been dealing with IPF for around 2
years (Well, that I know of.  In hindsight I can see evidence of it
going back further then that).

I've been on the list since beginning of this year, though I
inactivated myself for around a month because I'm doing some
travelling and I'm also taking some time just to make sure I've got
everything all set for when I have to go into the hospital (little
things like making sure my parents know where everything important in
my apartment is so that they can handle things like paying my rent,
bills, and such).

To be honest, I'm still a bit freaked out about all this, since in
some ways it feels like it's all happened so rapidly.  I'd love to
hear from anyone out there who has had a tranplant about life
afterwards.  I know there is a period of recovery, but hearing about
people's experiences is something that would be most helpful to me.
For instance, I know that the antirejection medications reduce your
immune system.  How much of an issue of this for people.  Does this
mean you have to be careful about going out whenever?  Do you find
you have to avoid large groups of people?  Are there other things
that were issues for you?

The one thing that really drives me on with all this is the hope that
someday I'll be able to walk up a flight of stairs without gasping
for breath by the time I get to the 10th step :).

peace
gregory

--
Gregory J. Blake -- gblake@... -- AOL:ImSnooze -- ICQ: 1367921
Web: http://www.ezoons.com/~gblake/
"I'm pretty sure 'Baka' means 'No More Beer'" - Largo

On another note, congrats to Roger who's now 4 yrs post tx!  & thanks, Rog, for this site!

Sandi
'when lung disease strikes, there's  no air to go !'
 
 
 
 

Greetings From SE PA,

As initiator and moderator of the Lung Transplant eGroup, I have been
notified by Yahoo!--that just recently bought eGroups--that there is
so little traffic on this group that they will permanently delete it
unless it generates enough traffic in the next 90 days to keep it up
and running.  Jackasses.

They're right, though, there has been precious little traffic.  But to
blame it on the patient community is heartless and misses the point.
You'd think that now that it's in the Yahoo! world and all that that
means in terms of increased visibility (right), they'd give it more of
a chance.  But noooooooooo...

So here's the challenge:

Talk.

Just open a discussion.  We can start with how Yahoo! has never been
an active participant in the transplant community in terms of support,
  especially with respect to Lung Transplantation, my own
particular area of interest.  We can point out how little they have
provided in terms of listing consideration to non-commercial websites
that offer perhaps more information than commercial ones that are here
today and gone tomorrow.  We can point to their preference for
"commercial sounding" sites, or worse, fake "Foundations" that more
often than not prey on grieving families at their most vulnerable time
and bilk them out of money that goes who-knows-where?, etc., etc.

I've explained the situation, now you must do your part.  If you like
the fact that there is a forum for discussion on transplants SOMEWHERE
on Yahoo!, then talk it up on the group.  Or not.  It's presently on
an as-needed basis, I guess.

I wish you good health.

See my Lung Transplantation website at:

http://www.newlungs.com

See my IPF website at:

http://home.netcarrier.com/~rstevens

Take care.

Roger Stevens (RogWA3FLE)
Norristown, PA

Greetings,

I hope this message finds you in good health.

I am, in concert with Dick Wyatt, the moderator of the IPFers list
located on LSoft's for-pay service, considering migrating that service
over here to eGroups, and while this group would remain dedicated to
lung transplantation regardless of the cause, an IPFers eGroup would
be more oriented towards patients with IPF, including their
transplantation issues.

I just thought I'd throw this information out there.  This list
generates so little traffic, which is the problem over at IPFers as
well, that it may actually make sense to combine the two lists, but at
this point there are no plans to do so.

I would encourage people receiving this message to remember that this
list still exists and is only as helpful as the activity it supports.
  I've long since opened up membership so that owner approval is no
longer required, so tell your friends and family that they may find
answers to some of their questions here.

Take care and stay tuned.

Roger Stevens
Norristown, PA

Greetings,

As "owner" of the lung transpant eGroup, I am somewhat dismayed at
the level of inactivity, if you can call it that.  Therefore, unless
there are serious objections, I propose that the list be more
inclusive--specifically, I want to open up the list so that new
members can register, read and post messages right away without my
approval.

If I don't hear any arguments to the contrary, I will make this
change in the near future.

I don't believe that the profile of the list is so high as to make it
a security risk, although when I started it, I felt that members
would want their identity protected from any person that would stroll
in and read their messages.  I thought that approving membership
would
give me some basic control over who gets in, but I now feel that
perhaps it has stifled activity.  I mean, what difference does it
make
if there are no messages to read?

And so it goes.  I hope all are well and if you have any questions,
please email me at rstevens@....

Thanks.

Roger Stevens
Double-lung transplant,
UMMC, June 10, 1997

Dear Barb,

Hi.  I have approved your membership.  Sorry for the inconvenience.  If
people want this to be an open forum, I will certainly consider it.  I
just don't want random insurance industry plants strolling around is, I
guess, my main concern.

Take care.

Roger

rbfra196-@... wrote:
original article:http://www.egroups.com/group/lungtransplant/?start=4
>      I have IPF & wish access to your web site     Thank  you  Barb

I have IPF & wish access to your web site     Thank  you  Barb

agiust-@... (giusti alessandro) wrote:
original article:http://www.egroups.com/group/lungtransplant/?start=2
> My name is Alessandro (from Italy) and i have UIP (Usual Interstitial
> Pneumonia).
> Now, i'm taking 80 mg of prednisone for day, but my doctor said me
that
> the only hope for me is a lung transplant.
> I'm very terrified, specially if i think to my two little children.
> I don't know the really chances of survival and the kind of survival
> after a lung transplant. Statistics on Internet are not good, because
> the danger are Obliterantis Bronchiolitis.
>
> Sorry for my English
>
> Thank you and best regards
>
> (E-mail:   agiusti@...)

Dear Allessandro,

Hi.  I sent you an email under separate cover, but thought I'd reply to
the group as well.  I'm sorry to hear about your diagnosis.

The first thing you should do is get a second opinion from the best
Pulmonologist you can find--either a head of a Pulmonology Department
at a teaching hospital or a recognized expert that actively treats such
patients on a regular basis.  UIP, while often a precursor to IPF, is
in some instances, somewhat slower acting, which is to your advantage,
because many transplant waiting lists are over a year or two long.

However, a lung transplant is not all such bad news, providing that you
get it done at the best lung transplant facility you can find, which
may even require that you relocate for the two months or so that you
are recovering, as I did.  Other than that, it is generally about as
successful as other solid organ transplants, such as a heart or kidney
transplant, which is well over 75% in most cases.  The pain is not
great, and most of the problems with recovery are related to your
physical condition from your disease by the time you get done.

Generally after your recovery you can usually return to work, and
continue the life you used to know before you became short of breath,
except for the fact that you have to take a lot of pills, but you get
used to it.

Bronchiolitis Obliterans occurs in--as I understand it--43% of lung
transplant recipients within approximately 7-10 years, but new
medications are improving this number, so it is not a given under all
circumstances.  I was extremely concerned about such things myself
until I got so sick that I prayed for a transplant, and since the
operation I have not worried about them at all.  Most of the concerns
you have are, in my mind, acceptable risks considering the alternative.

You can read all about my transplant and recovery on my website:

http://www.voicenet.com/~rstevens

I hope things go well for you.  How old are you, and where you
are located?

Roger Stevens
Norristown, PA

My name is Alessandro (from Italy) and i have UIP (Usual Interstitial
Pneumonia).
Now, i'm taking 80 mg of prednisone for day, but my doctor said me that
the only hope for me is a lung transplant.
I'm very terrified, specially if i think to my two little children.
I don't know the really chances of survival and the kind of survival
after a lung transplant. Statistics on Internet are not good, because
the danger are Obliterantis Bronchiolitis.

Sorry for my English

Thank you and best regards

(E-mail:   agiusti@...)

Hi.

I was bombing around eGroup.com and decided to try creating an eGroup
for Idiopathic Pulmonary Fibrosis (IPF), but apparently all the IPF
group names are taken for some ISP in France--go figure.  So having
missed that opportunity, I decided maybe a lung transplant group might
even be better.

So you may have received an invitation to join (I sent out three from
my ICQ list of members of the Tuesday Night IPF Chat Room up on Spark's
website), or perhaps you heard of this from a friend.  Or maybe you
searched the eGroups list and found it.  Regardless, you're here, and
welcome!

Be advised that privacy is respected and no member directory exists for
this group, and that I must approve all member subscriptions.

Apart from that, anyone on the web can read the messages, so if you are
going to reveal personal details, be aware of the potential audience
out there.  On the other hand, we must be somewhat open to attract
members and dispense help, so it's a fine line.

I hope that this group can assist those up for or considering or
interested in lung transplantation.  I myself received a double-lung
transplant in June, 1997 from the University of Maryland, which I
discuss in detail on my website:

http://www.voicenet.com/~rstevens

Good luck, God speed, and Good health.

Roger