New Member

[Guest guest]

In a message dated 10/31/99 2:29:10 PM Pacific Standard Time,

NF2_Crewonelist writes:

<< Subject: Re: New Member June Hogan

>>

Subject: Re: New Member June Hogan

Welcome June!! nice to have you with us

Jim in FL

[Guest guest]

Hi Jim,

Nice to finally be here. I found out about the Crew when I was at the

ALDAcon in Virginia. It's more than I expected! Hope to talk with you

again!!

June

[Guest guest]

Welcome Tim! =D

Since you're an 80s child also, can you tell me what TV show and the

character this quote is from: " Watchu tawkin','bout Willis!? "

Thanks....

Mark@...

skies.NET

----Original Message Follows----

Reply-To: NF2_Crewonelist

To: NF2_Crewonelist

Subject: Re: new member

Date: Fri, 03 Dec 1999 10:08:33 -0600

Hiya Tim...Told ya this place was great!!! Welcome!

------------------------------------------------------------------------

See what's happening for NF2Con 2000!

http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

[Guest guest]

Hiya Tim...Told ya this place was great!!! Welcome!

[Guest guest]

Welcome to the group Tim. Need to clarify your comment, your son has a

50/50 chance of having NF2. There is always genetic testing to rule it out

or you can wait and watch for anything out of the ordinary. I had testing

done on all 3 of my kids, only one has NF2. After that we had MRI's done

and found she had 3 tumors on her spine. She is 19 and doing ok except for

the chronic PMS.

Mike A in Pittsburgh

At 01:28 PM 12/2/1999 -0000, you wrote:

>From: tlstafford@...

>

>Hello! I hope I'm doing this right

>

>I think I was told to post a brief profile of myself. I guess, this

>mean, above & beyond the basic facts in my ONElist profile.

>

>I was diagnosised with NF2 way back in Feb. '88 at the age of 23. I

>had a tumor in the base of my spinal canal. That tumor caused pressure

>in the spinal fluid and that pressure damaged my optic nerves. This

>left me legally blind. I have only recently developed a curiosity/

>interest in my condition and in helping others in some small way.

>I'm still kind of new to the on-line NF community but I'm finding it

>very friendly & helpfull.

>

>On a personal note: I married a wonderfull woman about 7 1/2 years

>ago and we have a rambunctios little 5 (soon to be 6) year old son.

>We were told by someone, that we didn't have to worry about our son

>developing the same tumor I had. When we were told that, I hadn't

>heard the term MF and knew little about it (except what I remember

>seeing on a talk show many years ago). I'm finding out now that it

>IS something that might be possible. I had gotten over all the fear

>a long time ago but now this aspect brings some of it back.

>

>Anyway, I'll shut up now and read. Thanks for being here and I look

>forward to contribution to the Crew

>

>Tim S

>------------------------------------------------------------------------

>See what's happening for NF2Con 2000!

>http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

>

>

[Guest guest]

did you say " batch " ?Since we're talking about cookies,does anyone have a

favorite x-mas cookie recipe they want to share?I'm always in the mood for

cookies.

Jimmy

Re: new member

> From: WURSJEFF@... (Jeff Wurst)

>

> Welcome to the crew Tim!! Your part of a new batch of members who have

> just joined.

>

> Jeff W.

> ------------------------------------------------------------------------

> See what's happening for NF2Con 2000!

> http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

[Guest guest]

Welcome to the crew Tim!! Your part of a new batch of members who have

just joined.

Jeff W.

[Guest guest]

Hi Mark,

Did Tim give a stab at your quote question? If not, I'll give it a try. Let

me know.

June

I KNOW I KNOW I KNOW!!! ) Well.... I'm 100% sure on half of the answer

and 50% on the other (

[Guest guest]

Hi June,

Tim or anyone else haven't taken a stab at my question so 'stab' all you

want =P

Mark

----Original Message Follows----

From: ManelyCat@...

Reply-To: NF2_Crewonelist

To: NF2_Crewonelist

Subject: Re: new member

Date: Sat, 4 Dec 1999 12:05:58 EST

From: ManelyCat@...

Hi Mark,

Did Tim give a stab at your quote question? If not, I'll give it a try.

Let

me know.

June

I KNOW I KNOW I KNOW!!! ) Well.... I'm 100% sure on half of the answer

and 50% on the other (

------------------------------------------------------------------------

See what's happening for NF2Con 2000!

http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

[Guest guest]

June,

You're correct!! As for a prize you get a nice pat in the back from me =).

Thanks for playing....

Mark

----Original Message Follows----

From: ManelyCat@...

Reply-To: NF2_Crewonelist

To: NF2_Crewonelist

Subject: Re: new member

Date: Sat, 4 Dec 1999 18:50:54 EST

From: ManelyCat@...

HAHA...OH GOODY!!! I FEEL LIKE I'M A JEOPARDY CONTESTANT!

YOUR QUESTION WAS TO NAME THE PERSON THAT SAID " WHATCHA TALKIN ABOUT

WILLIS " :

That would be Arnold, ( )

YOU ALSO ASKED WHAT THE NAME OF THE SHOW WAS: " DIFFERENT STROKES "

WHAT ELSE?

IF I REMEMBER RIGHT, THE FATHER WAS CONRAD BAINES (But I can't remember his

screen name) and the daughter was, I think, le Brisbois (but I'm not

sure about this one). I HAVE NO IDEA WHAT WILLIS'S NAME IS/WAS. I think I

remember from the news that all the kids have/had problems:o(.

I DO KNOW, THOUGH, THAT THE SHOW WAS ABOUT A FATHER WITH A " NATURAL "

DAUGHTER

WHO ADOPTED TWO BOYS, WILLIS AND ARNOLD. AND I THINK THEY LIVED IN A

PENTHOUSE IN MANHATTAN.

DO I PASS? WHAT DO I WIN????

THANKS FOR THE NOSTALGIA TRIP!!!

JUNE

------------------------------------------------------------------------

See what's happening for NF2Con 2000!

http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

[Guest guest]

HAHA...OH GOODY!!! I FEEL LIKE I'M A JEOPARDY CONTESTANT!

YOUR QUESTION WAS TO NAME THE PERSON THAT SAID " WHATCHA TALKIN ABOUT WILLIS " :

That would be Arnold, ( )

YOU ALSO ASKED WHAT THE NAME OF THE SHOW WAS: " DIFFERENT STROKES "

WHAT ELSE?

IF I REMEMBER RIGHT, THE FATHER WAS CONRAD BAINES (But I can't remember his

screen name) and the daughter was, I think, le Brisbois (but I'm not

sure about this one). I HAVE NO IDEA WHAT WILLIS'S NAME IS/WAS. I think I

remember from the news that all the kids have/had problems:o(.

I DO KNOW, THOUGH, THAT THE SHOW WAS ABOUT A FATHER WITH A " NATURAL " DAUGHTER

WHO ADOPTED TWO BOYS, WILLIS AND ARNOLD. AND I THINK THEY LIVED IN A

PENTHOUSE IN MANHATTAN.

DO I PASS? WHAT DO I WIN????

THANKS FOR THE NOSTALGIA TRIP!!!

JUNE

[Guest guest]

----Original Message Follows----

WHO WAS THE 6 MILLION DOLLAR MAN?<====Lee Majors aka " The Fallguy "

WHO WAS THE BIONIC WOMAN?<==== Summers

WHO WAS WONDER WOMAN?<=====Lynda

Mark@...

------------------------------------------------------------------------

See what's happening for NF2Con 2000!

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[Guest guest]

HI MARK,

CAN I ASK YOU A QUESTION NOW (OR ANYONE ELSE!)?

THERE ARE ACTUALLY 3 OF THEM:

WHO WAS THE 6 MILLION DOLLAR MAN?

WHO WAS THE BIONIC WOMAN?

WHO WAS WONDER WOMAN?

GIVE ME THE REAL NAMES OF THE PEOPLE, NOT THE NAMES THEY USED ON THE SHOW.

JUNE

[Guest guest]

----Original Message Follows----

What were the names of the A- Team

members?(their character names not real names)<====B.A. Barracus, Hannibal

, Temptelton " Face " Peck, and " Howling Mad " Murdock

--

See what's happening for NF2Con 2000!

http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

[Guest guest]

Thank you !

[Guest guest]

#1 - Jaclyn

#2 - Farrah Fawcett

#3 - Kate

______________________

Charlie's Angels

[Guest guest]

All this trivia.I have a question.What were the names of the A- Team

members?(their character names not real names)

Jimmy

Re: new member

> Date: Sat, 4 Dec 1999 12:05:58 EST

>

> From: ManelyCat@...

>

> Hi Mark,

>

> Did Tim give a stab at your quote question? If not, I'll give it a try.

> Let

> me know.

>

> June

>

> I KNOW I KNOW I KNOW!!! ) Well.... I'm 100% sure on half of the answer

> and 50% on the other (

> ------------------------------------------------------------------------

> See what's happening for NF2Con 2000!

> http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

> ------------------------------------------------------------------------

> See what's happening for NF2Con 2000!

> http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

[Guest guest]

The only one I remember is B A Baracus played by Mr. T. The B.A. stood

for bad attitude

Jeff W.

[Guest guest]

I want to Welcome all the New Members to the Crew! )

Sara

[Guest guest]

Hi Sara,

I am a newbie and I am from Minnesota and right now I am 42 but was diagnosed

with this disease in my early 30's.I am deaf because of it and visually

impaired.I am so HAPPY to be a part of this group.

Lana in Minnesota

[Guest guest]

My name is Judy and I am a 67 yr old divorced grandmother living alone

in Danville, IL and diagnosed by an Indianapolis pulmonary doctor with

IPF 9 Nov 06 after a long time of coughing and shortness of breath

that previous doctors kept blaming on my Asthma, viruses, etc. Still

employed but starting sick leave on Mon. Have 3 sons, 1 in IN, 1 in

OH and 1 in HI. On my Christmas trip to HI I had a severe nose bleed

and was hospitalized 4 hours after my arrival after using oxygen (1st

time) from Chicago to Honolulu. Started Pulmonary Rehab in Jan back

here in IL but when they had me do the 6 min. walk & monitored my O2

they stopped me after 2 min because my Sats dropped too low & I was

put on oxygen 24/7 that evening. Although my job is doing cost

reporting and analysis & I've gone to work 3 days since 26 Jan, the

logistics are too hard on me. Prepared the project report this past

Thur. from home (telecomute) but by the end of the day was exhausted

and breathless and realized I need to focus on breathing and my health

not cost reporting. Had to reschedule my follow up with my pulmonary

doctor to 23 Feb due to snow and cold air here this week, but he has

also referred me to a lung transplant team in Indy. Because of the

severity of my condition I had to cancel a trip back to HI to see my

new grand daughter born 28 Jan. Also need thyroid surgery.

Determined to get better but sometimes get depressed. Whomever it was

that first called IPF a monster sure was right.

[Guest guest]

Joyce - Thanks for you email. Current meds are

Xopenex 1.25 ml 3X day-Nebulizer

Prednisone 10 mg 1X day

Fexofenadine(generic Allegra) 180 mg 1X day

Acipex 20 mg 2X day (for REFLUX)

Altoprev 20 mg (cholesterol statin)

Ambien 10 mg (use 1/2 of one would like to get off this)

Benzonate 100 mg (2 at bedtime) for cough

CVS tessalon cough pills(non drowsy)2 in a.m. & 2 afternoon

Hydrocholothyazide 50 mg 1X day(swelling & BP)

Albuterol Inhaler as needed if wheezing

Actonel 35 mg 1x week

Doctor had me on Advair for a while but had me stop due to voice

problems. Then they had me on Spiriva inhaler but after a week on

that my throat really started bothering me so I stopped it.

Pulmonary doctor had started me on 20 mg Prednisone in Nov and then

had me cut back to 10. He also had me taking Hydroxycholroquine

(anti inflammatory)but had to stop it first because of the nose

bleed then he said stop it because of the voice and cough problems.

Also taking 400 IU Vit E, 1000 Vit C, Centrim Silver Multi Vitamin,

COQ10 - 200

Also using some Herbal supplements which doctor said was fine to try

Using Breathe Easy Herbal Tea- find it soothing

Have had voice problems ever since the nasal hemmhorage at Christmas

time plus I have a Adenoma on my thyroid that the ENT has

recommended removing surgically. I want a 2nd opinion on that but

think he is right and it has been contributing to the voice problems

as well as sore throat and pain in my neck.

I know this site does not prescribe medical treatment, but I would

be interested in what meds are working for other people so I can ask

my pulmonary doctor about them when I see him on Fri.

I pray this will be a better week for all of us.

Bless you all.

Judy

> >

> > My name is Judy and I am a 67 yr old divorced grandmother living

alone

> > in Danville, IL and diagnosed by an Indianapolis pulmonary

doctor with

> > IPF 9 Nov 06 after a long time of coughing and shortness of

breath

> > that previous doctors kept blaming on my Asthma, viruses, etc.

Still

> > employed but starting sick leave on Mon. Have 3 sons, 1 in IN, 1

in

> > OH and 1 in HI. On my Christmas trip to HI I had a severe nose

bleed

> > and was hospitalized 4 hours after my arrival after using oxygen

(1st

> > time) from Chicago to Honolulu. Started Pulmonary Rehab in Jan

back

> > here in IL but when they had me do the 6 min. walk & monitored

my O2

> > they stopped me after 2 min because my Sats dropped too low & I

was

> > put on oxygen 24/7 that evening. Although my job is doing cost

> > reporting and analysis & I've gone to work 3 days since 26 Jan,

the

> > logistics are too hard on me. Prepared the project report this

past

> > Thur. from home (telecomute) but by the end of the day was

exhausted

> > and breathless and realized I need to focus on breathing and my

health

> > not cost reporting. Had to reschedule my follow up with my

pulmonary

> > doctor to 23 Feb due to snow and cold air here this week, but he

has

> > also referred me to a lung transplant team in Indy. Because of

the

> > severity of my condition I had to cancel a trip back to HI to

see my

> > new grand daughter born 28 Jan. Also need thyroid surgery.

> > Determined to get better but sometimes get depressed. Whomever

it was

> > that first called IPF a monster sure was right.

> >

>

[Guest guest]

Hi Judy,

You listed these drugs that you take:

> > >> > > My name is Judy and I am a 67 yr old divorced grandmother living > alone> > > in Danville, IL and diagnosed by an Indianapolis pulmonary > doctor with> > > IPF 9 Nov 06 after a long time of coughing and shortness of > breath> > > that previous doctors kept blaming on my Asthma, viruses, etc. > Still> > > employed but starting sick leave on Mon. Have 3 sons, 1 in IN, 1 > in> > > OH and 1 in HI. On my Christmas trip to HI I had a severe nose > bleed> > > and was hospitalized 4 hours after my arrival after using oxygen > (1st> > > time) from Chicago to Honolulu. Started Pulmonary Rehab in Jan > back> > > here in IL but when they had me do the 6 min. walk & monitored > my O2> > > they stopped me after 2 min because my Sats dropped too low & I > was> > > put on oxygen 24/7 that evening. Although my job is doing cost> > > reporting and analysis & I've gone to work 3 days since 26 Jan, > the> > > logistics are too hard on me. Prepared the project report this > past> > > Thur. from home (telecomute) but by the end of the day was > exhausted> > > and breathless and realized I need to focus on breathing and my > health> > > not cost reporting. Had to reschedule my follow up with my > pulmonary> > > doctor to 23 Feb due to snow and cold air here this week, but he > has> > > also referred me to a lung transplant team in Indy. Because of > the> > > severity of my condition I had to cancel a trip back to HI to > see my> > > new grand daughter born 28 Jan. Also need thyroid surgery.> > > Determined to get better but sometimes get depressed. Whomever > it was> > > that first called IPF a monster sure was right.> > >> >>

[Guest guest]

Hi Judy from Sher.... I'm 68, diagnosed a year ago and stable for that year. I'm in Oregon.

Welcome to our board. Every question will find someone who knows an answer and help you.

Hope you are having a good evening.

Sher ipf 3-06

"Don't worry about tomorrow, God is already there"

New Member

My name is Judy and I am a 67 yr old divorced grandmother living alone in Danville, IL and diagnosed by an Indianapolis pulmonary doctor with IPF 9 Nov 06 after a long time of coughing and shortness of breath that previous doctors kept blaming on my Asthma, viruses, etc. Still employed but starting sick leave on Mon. Have 3 sons, 1 in IN, 1 in OH and 1 in HI. On my Christmas trip to HI I had a severe nose bleed and was hospitalized 4 hours after my arrival after using oxygen (1st time) from Chicago to Honolulu. Started Pulmonary Rehab in Jan back here in IL but when they had me do the 6 min. walk & monitored my O2 they stopped me after 2 min because my Sats dropped too low & I was put on oxygen 24/7 that evening. Although my job is doing cost reporting and analysis & I've gone to work 3 days since 26 Jan, the logistics are too hard on me. Prepared the project report this past Thur. from home (telecomute) but by the end of the day was exhausted and breathless and realized I need to focus on breathing and my health not cost reporting. Had to reschedule my follow up with my pulmonary doctor to 23 Feb due to snow and cold air here this week, but he has also referred me to a lung transplant team in Indy. Because of the severity of my condition I had to cancel a trip back to HI to see my new grand daughter born 28 Jan. Also need thyroid surgery. Determined to get better but sometimes get depressed. Whomever it was that first called IPF a monster sure was right.

[Guest guest]

Judy,

Welcome, though I'm sorry you have reason to have to join us. I've been posting with this group since last summer and I don't think you'll find a better bunch of folks anywhere!

I'm 47, live in NY (but not for long!) and was diagnosed with fibrotic NSIP ( a specific form of pulmonary fibrosis) last June. I am no longer able to work and my social security disability was recently approved.

It sounds like you've been through a really hard time. I'm sorry you haven't been able to get to see your granddaughter in HI yet. I have not flown since I was diagnosed and am very reluctant to do so with the amount of O2 I would have to use. I'm not even sure my doctor would let me. You'll find I'm a bit of a road warrior though. I have taken a couple of road trips to visit family since my diagnosis and have done fine!

There are alot of determined people in this group. You're among friends!

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

New Member

My name is Judy and I am a 67 yr old divorced grandmother living alone in Danville, IL and diagnosed by an Indianapolis pulmonary doctor with IPF 9 Nov 06 after a long time of coughing and shortness of breath that previous doctors kept blaming on my Asthma, viruses, etc. Still employed but starting sick leave on Mon. Have 3 sons, 1 in IN, 1 in OH and 1 in HI. On my Christmas trip to HI I had a severe nose bleed and was hospitalized 4 hours after my arrival after using oxygen (1st time) from Chicago to Honolulu. Started Pulmonary Rehab in Jan back here in IL but when they had me do the 6 min. walk & monitored my O2 they stopped me after 2 min because my Sats dropped too low & I was put on oxygen 24/7 that evening. Although my job is doing cost reporting and analysis & I've gone to work 3 days since 26 Jan, the logistics are too hard on me. Prepared the project report this past Thur. from home (telecomute) but

by the end of the day was exhausted and breathless and realized I need to focus on breathing and my health not cost reporting. Had to reschedule my follow up with my pulmonary doctor to 23 Feb due to snow and cold air here this week, but he has also referred me to a lung transplant team in Indy. Because of the severity of my condition I had to cancel a trip back to HI to see my new grand daughter born 28 Jan. Also need thyroid surgery. Determined to get better but sometimes get depressed. Whomever it was that first called IPF a monster sure was right.