Re: Lung Transplant

[Guest guest]

Have you asked Gwynne? She has one. She may be willing to talk with

you.

S, Lubbock, TX

NSIP w/PF 12/2006

>

> Dear All,

>

> This is my second try.

>

> Is there anyone out there on our group who has had a lung transplant

> (or is waiting for one) and would be willing to share experiences?

>

> I have just finished intake and am awaiting the 3 days of testing to

> determine my status.

>

> Best,

>

> Wayne Hening

> 63/IPF 5/06

>

[Guest guest]

Have you asked Gwynne? She has one. She may be willing to talk with

you.

S, Lubbock, TX

NSIP w/PF 12/2006

>

> Dear All,

>

> This is my second try.

>

> Is there anyone out there on our group who has had a lung transplant

> (or is waiting for one) and would be willing to share experiences?

>

> I have just finished intake and am awaiting the 3 days of testing to

> determine my status.

>

> Best,

>

> Wayne Hening

> 63/IPF 5/06

>

[Guest guest]

Wayne,

We have had two active members to have transplant in the last couple of years. Gwynne, just weeks ago. This is her Caring Bridge site where she recounts the procedure and the days following. http://caringbridge.org/cb/viewHome.do If you have problems, it may be that you will have to sign in. She has done really well.

We have several who are on the list and waiting. We have one member who is #2 on the list in her state. Should be soon.

Welcome to our group. Let us know how your evaluation and status placement turns out. God's blessings.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Dear All,> > This is my second try.> > Is there anyone out there on our group who has had a lung transplant> (or is waiting for one) and would be willing to share experiences?> > I have just finished intake and am awaiting the 3 days of testing to> determine my status.> > Best,> > Wayne Hening> 63/IPF 5/06>

[Guest guest]

Hi Wayne,

my mom is currently being evaluated for a transplant. a few tests are pending.

she was

diagnosed with IPF in june '04. a series of infections after july '07 made her

condition

worse, and the last couple of months she has been on o2 24/7. we have been

reading a

lot about the transplant process - pre and post. i found the website

www.2ndwind.org

particularly resourceful.

regards,

vrinda

>

> Dear All,

>

> This is my second try.

>

> Is there anyone out there on our group who has had a lung transplant

> (or is waiting for one) and would be willing to share experiences?

>

> I have just finished intake and am awaiting the 3 days of testing to

> determine my status.

>

> Best,

>

> Wayne Hening

> 63/IPF 5/06

>

[Guest guest]

Dear ,

Thank you for your reply.

I have heard from Gwynne and hope to learn quite a lot from her. I am glad to hear that there are some real success stories here. I understand that it is not an easy life after transplant, but worth it when you come to the end of the line.

Best,

Wayne Hening

NY/63/IPF 5/06

Re: Lung Transplant

Posted by: "lsmith7892006" lbsmith789@...   lsmith7892006

Sun Jun 1, 2008 2:07 pm (PDT)

Have you asked Gwynne? She has one. She may be willing to talk with

you.

S, Lubbock, TX

NSIP w/PF 12/2006

**************Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

[Guest guest]

Dear ,

Thank you for your reply.

I have heard from Gwynne and hope to learn quite a lot from her. I am glad to hear that there are some real success stories here. I understand that it is not an easy life after transplant, but worth it when you come to the end of the line.

Best,

Wayne Hening

NY/63/IPF 5/06

Re: Lung Transplant

Posted by: "lsmith7892006" lbsmith789@...   lsmith7892006

Sun Jun 1, 2008 2:07 pm (PDT)

Have you asked Gwynne? She has one. She may be willing to talk with

you.

S, Lubbock, TX

NSIP w/PF 12/2006

**************Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

[Guest guest]

Dear ,

Thank you for your reply.

I have heard from Gwynne and hope to learn quite a lot from her. I am glad to hear that there are some real success stories here. I understand that it is not an easy life after transplant, but worth it when you come to the end of the line.

Best,

Wayne Hening

NY/63/IPF 5/06

Re: Lung Transplant

Posted by: "lsmith7892006" lbsmith789@...   lsmith7892006

Sun Jun 1, 2008 2:07 pm (PDT)

Have you asked Gwynne? She has one. She may be willing to talk with

you.

S, Lubbock, TX

NSIP w/PF 12/2006

**************Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

[Guest guest]

Dear Wayne: I am one of the many who are awaiting lung transplant

listing candidacy. My story began more than one year ago when I

underwent an open lung biopsy which revealed IPF. I was referred to

the Cleveland Clinic for transplant evaluation. I then self-referred

myself to UPMC in Pittsburgh to undergo their evaluation for

transplant. I completed all of the evaluation in September, 2007.

The results were that I qualify for transplant in every aspect except

for my weight. The transplant team requires that my body mass index

(BMI) be under 35 before transplant. My weight had increased some

50+ pounds after many rounds of steroid (Prednisone) treatment. So,

here I am eight months since evaluation, and I have lost

approximately 33 pounds so far. It's not easy to lose weight when

you can't exercise and you love food! I am coping with being sick as

well as I can. I am on oxygen 24/7 at 4 lpm; I attend Pulm Rehab at

least two times per week; I moved from my home in West Virginia to

Ohio to be close to my mother who I rely on to help me take care of

my 6 yr. old son and she helps me do chores that I can no longer do

by myself; I pop in and out of this Board frequently, but I am a

lurker most of the time - just trying to keep up with everyone here

that I care so deeply for; and I pray. I am 41 years old, going

through a divorce because my husband can't handle my illness, I have

two daughters who are 22 and 18 ( [22] just got married in

April and graduated from college in May with her bachelor's degree

and is now applying to grad school; and Devynn [18] graduated from

high school yesterday and has been accepted to the University of

land in College Park, land, to begin in the Spring '09 in an

Engineering program).

Following the lung transplant evaluation, I learned I also had

Pulmonary Arterial Hypertension (high blood pressure in my lungs).

For that reason, I will have to be listed for a double lung

transplant. The Transplant Team has explained that I will not be

able to undergo a single lung transplant. Also, my evaluation

revealed that I have an unusually high antibody count. The

antibodies must be matched as closely as possible to the donor

lungs. What this means is that there is less than 1% of the

population that has a compatible set of donor lungs that will match

my high antibody count. Some of the information I learned following

the transplant evaluation was less than encouraging, as you can see,

but I refuse to give up. My children are very supportive and have

attended many of my doctor's appointments to become as educated as

possible. Even my young son knows my doctors and transplant

coordinator by name. It is a long, tough road. I have to be re-

evaluated every three months to remain pre-transplant " active " . My

next appointment is June 17th and I am hoping this time I will get

the green light for listing candidacy!

Good luck to you in your evaluation and I hope my information has

been helpful.

God Bless,

Tina

IPF 04/07 PAH 11/07

Ohio

>

> Dear All,

>

> This is my second try.

>

> Is there anyone out there on our group who has had a lung transplant

> (or is waiting for one) and would be willing to share experiences?

>

> I have just finished intake and am awaiting the 3 days of testing to

> determine my status.

>

> Best,

>

> Wayne Hening

> 63/IPF 5/06

>

[Guest guest]

Dear Wayne: I am one of the many who are awaiting lung transplant

listing candidacy. My story began more than one year ago when I

underwent an open lung biopsy which revealed IPF. I was referred to

the Cleveland Clinic for transplant evaluation. I then self-referred

myself to UPMC in Pittsburgh to undergo their evaluation for

transplant. I completed all of the evaluation in September, 2007.

The results were that I qualify for transplant in every aspect except

for my weight. The transplant team requires that my body mass index

(BMI) be under 35 before transplant. My weight had increased some

50+ pounds after many rounds of steroid (Prednisone) treatment. So,

here I am eight months since evaluation, and I have lost

approximately 33 pounds so far. It's not easy to lose weight when

you can't exercise and you love food! I am coping with being sick as

well as I can. I am on oxygen 24/7 at 4 lpm; I attend Pulm Rehab at

least two times per week; I moved from my home in West Virginia to

Ohio to be close to my mother who I rely on to help me take care of

my 6 yr. old son and she helps me do chores that I can no longer do

by myself; I pop in and out of this Board frequently, but I am a

lurker most of the time - just trying to keep up with everyone here

that I care so deeply for; and I pray. I am 41 years old, going

through a divorce because my husband can't handle my illness, I have

two daughters who are 22 and 18 ( [22] just got married in

April and graduated from college in May with her bachelor's degree

and is now applying to grad school; and Devynn [18] graduated from

high school yesterday and has been accepted to the University of

land in College Park, land, to begin in the Spring '09 in an

Engineering program).

Following the lung transplant evaluation, I learned I also had

Pulmonary Arterial Hypertension (high blood pressure in my lungs).

For that reason, I will have to be listed for a double lung

transplant. The Transplant Team has explained that I will not be

able to undergo a single lung transplant. Also, my evaluation

revealed that I have an unusually high antibody count. The

antibodies must be matched as closely as possible to the donor

lungs. What this means is that there is less than 1% of the

population that has a compatible set of donor lungs that will match

my high antibody count. Some of the information I learned following

the transplant evaluation was less than encouraging, as you can see,

but I refuse to give up. My children are very supportive and have

attended many of my doctor's appointments to become as educated as

possible. Even my young son knows my doctors and transplant

coordinator by name. It is a long, tough road. I have to be re-

evaluated every three months to remain pre-transplant " active " . My

next appointment is June 17th and I am hoping this time I will get

the green light for listing candidacy!

Good luck to you in your evaluation and I hope my information has

been helpful.

God Bless,

Tina

IPF 04/07 PAH 11/07

Ohio

>

> Dear All,

>

> This is my second try.

>

> Is there anyone out there on our group who has had a lung transplant

> (or is waiting for one) and would be willing to share experiences?

>

> I have just finished intake and am awaiting the 3 days of testing to

> determine my status.

>

> Best,

>

> Wayne Hening

> 63/IPF 5/06

>

[Guest guest]

Dear Wayne: I am one of the many who are awaiting lung transplant

listing candidacy. My story began more than one year ago when I

underwent an open lung biopsy which revealed IPF. I was referred to

the Cleveland Clinic for transplant evaluation. I then self-referred

myself to UPMC in Pittsburgh to undergo their evaluation for

transplant. I completed all of the evaluation in September, 2007.

The results were that I qualify for transplant in every aspect except

for my weight. The transplant team requires that my body mass index

(BMI) be under 35 before transplant. My weight had increased some

50+ pounds after many rounds of steroid (Prednisone) treatment. So,

here I am eight months since evaluation, and I have lost

approximately 33 pounds so far. It's not easy to lose weight when

you can't exercise and you love food! I am coping with being sick as

well as I can. I am on oxygen 24/7 at 4 lpm; I attend Pulm Rehab at

least two times per week; I moved from my home in West Virginia to

Ohio to be close to my mother who I rely on to help me take care of

my 6 yr. old son and she helps me do chores that I can no longer do

by myself; I pop in and out of this Board frequently, but I am a

lurker most of the time - just trying to keep up with everyone here

that I care so deeply for; and I pray. I am 41 years old, going

through a divorce because my husband can't handle my illness, I have

two daughters who are 22 and 18 ( [22] just got married in

April and graduated from college in May with her bachelor's degree

and is now applying to grad school; and Devynn [18] graduated from

high school yesterday and has been accepted to the University of

land in College Park, land, to begin in the Spring '09 in an

Engineering program).

Following the lung transplant evaluation, I learned I also had

Pulmonary Arterial Hypertension (high blood pressure in my lungs).

For that reason, I will have to be listed for a double lung

transplant. The Transplant Team has explained that I will not be

able to undergo a single lung transplant. Also, my evaluation

revealed that I have an unusually high antibody count. The

antibodies must be matched as closely as possible to the donor

lungs. What this means is that there is less than 1% of the

population that has a compatible set of donor lungs that will match

my high antibody count. Some of the information I learned following

the transplant evaluation was less than encouraging, as you can see,

but I refuse to give up. My children are very supportive and have

attended many of my doctor's appointments to become as educated as

possible. Even my young son knows my doctors and transplant

coordinator by name. It is a long, tough road. I have to be re-

evaluated every three months to remain pre-transplant " active " . My

next appointment is June 17th and I am hoping this time I will get

the green light for listing candidacy!

Good luck to you in your evaluation and I hope my information has

been helpful.

God Bless,

Tina

IPF 04/07 PAH 11/07

Ohio

>

> Dear All,

>

> This is my second try.

>

> Is there anyone out there on our group who has had a lung transplant

> (or is waiting for one) and would be willing to share experiences?

>

> I have just finished intake and am awaiting the 3 days of testing to

> determine my status.

>

> Best,

>

> Wayne Hening

> 63/IPF 5/06

>

[Guest guest]

Lung transplant.

Ok. I've had this lovely disease for over five years now. I've gone

through two lung transplant workups. One at Loyola in 2004 and they

determined it was too early for transplant and one at University of

Chicago in 2007 where they determined I'd be a good candidate after

a lot of testing. Was actually put on the list 10/2007. Was put on

list as " inactive " in 1/2008 because my pulmonary function tests had

actually improved and I continue to stay stable. Praise the Lord.

I'm back to being monitored every 3-4 months. I continue with an

active schedule - I work full time, walk one hour a day - use the

treadmill and do Yoga. Also as most of you know I LOVE to travel

and have been able to do a litte of that as well.

Lung transplant is not an easy solution to this problem. But if

it's an option available to you, my personal feeling is that you owe

it to yourself to at least explore it. What makes me so angry is

that it isn't an option for everyone and the surgery comes with its

share of trouble. Of course, we at the Pulmonary Fibrosis Foundation

are working at hard at trying to raise awareness and much needed

funds for research that will one day find a cure for this disease.

If anyone has more specific questions about the lung transplant

workup process or the emotional side of this equation, you can

always email me at ls_pulmonaryfibrosis@.... I can be reached

at work at - M-F generally from 9a-5p.

Leanne Storch dxd with uip 1/2003

Executive Assistant and Patient Advocate

Pulmonary Fibrosis Foundation

1332 N. Halsted, Suite 201

Chicago, IL 60622-2691

> >

> >

> >

> > Hello Everyone:

> >

> > I've had IPF going on for about 13 months now, I'am on O2 at 6

> > Liters 24/7, and it really stinks, and really getting tired of

the

> > tube.

> > My wife and I was at the pulmonary Doctor last friday and he

wants

> > me to call a doctor in Phila for a lung transplant he has also

> giving

> > me a package of all my test results to take, and IM scared to

> death,

> > I have been through the ringer, with all the test you can

imagine,

> I

> > have tests coming out of my ears.

> > I had to retire from my government job, after 34 years of

service,

> > because the Dr. said that my working day's are over with, Boy

that

> > was a big bomb for us to cope with, first the Dr's said that I

had

> > UIP, and said that I had only 4 years to live, Well I guess now

> maybe

> > 3 or less, but Im still here. I had a lung parts of my left lung

> > removed for test, and the Dr's in Phila said the I had UIP, so

my

> Dr.

> > here had them send the samples to the Mayo Clinic in Az, and it

> came

> > back as IPF, and my condition is getting worse by the day.

> > I would love to talk to someone that went through a lung

> transplant,

> > before and afterwards, there's no one here where I live the has

IPF

> > or no one to talk to and no support groups, IM just stuck out

there

> > by myself and it does get to be scarey.

> > And when I get real nerves I smoke a cigertte I know thats not

> good,

> > but need something to calm me down.

> > Oh yea I forgot, about 6 months after I got the IPF, I got R/A,

it

> > was so bad they had to rush me to the hospital, I couldn't move

at

> > all, IM on pain killers from my R/A Doctor and just O2 from my

> > pulmonary Doctor, I've known now, that my IPF stages had

advanced

> and

> > everytime, I talk to the Dr. I get the run around, I 53 years

old

> > with a very lovely supported wife and 2 great daughter's, 32 and

27

> > years old and 2 female Jack Russels, I use an electric scooter

and

> > had a electric lift for our van, and I go to P/T twice a week.

> > I always read your wonderful board, and it's looks very

> supportive,

> > and you guy's make everyone feel like family.

> > Well so much for me, love to talk to you guy's more, maybe I

can

> > help out, who knows.

> > But like I said IM really scared to death about this lung

> > transplant, I don't know, If I want to have it done.

> >

> > Thank You And God Bless All:

> >

> > RAndy

> >Hi I am sort of going through the same thing you are . I am still

> going for test's test's and more test . I am not really as scared

as

> you are . I am 61 and just reacently got worse . In March I spent

9

> days in a Hospital in Reno NV and got home in April then spent 8

days

> in the Hospital in Baltimore . I had to stop working also and

apply

> for ssi . In 5 months I might get something may be ? I will have

to

> take everything I have in my IRA or refinance my house I cant do

> because i'm not working . Sort of everything is backwards . I have

> health Insurance but it will not pay for all . I am also wondering

if

> everything you have to go through is worth it ? There are so many

> If's . Rejection how well will you be after and the never ending

> testing . If it were not for my Daughter and my grandson I would

not

> even think about having one . But on ether hand I don't know if I

> want to put my daughter through this . So fare just the 17 days I

> spent in the Hospital is 150.000 Is my l really worth this much ?

> When and If I do this how will I pay for all this ? Everything I

have

> will have to go for this . My family will get nothing . As if

> anything we have now will be worth something in 10 years the way

> stuff is going . I also am in limbo on what to do . Good luck . I

> home 90 miles away from Philadelphia and also live in Baltimore MD

> witch is 4 miles away from one of the best Hospitals in the world

> 's Hopkins I am kind of lucky in that way . Lots of people on

> here have to go miles just to see a Doctor . I might even think of

> renting a room to someone needing to go to one of thees

> hospitals .That is a lot to think about . From Walt God bless us

all

>

[Guest guest]

Lung transplant.

Ok. I've had this lovely disease for over five years now. I've gone

through two lung transplant workups. One at Loyola in 2004 and they

determined it was too early for transplant and one at University of

Chicago in 2007 where they determined I'd be a good candidate after

a lot of testing. Was actually put on the list 10/2007. Was put on

list as " inactive " in 1/2008 because my pulmonary function tests had

actually improved and I continue to stay stable. Praise the Lord.

I'm back to being monitored every 3-4 months. I continue with an

active schedule - I work full time, walk one hour a day - use the

treadmill and do Yoga. Also as most of you know I LOVE to travel

and have been able to do a litte of that as well.

Lung transplant is not an easy solution to this problem. But if

it's an option available to you, my personal feeling is that you owe

it to yourself to at least explore it. What makes me so angry is

that it isn't an option for everyone and the surgery comes with its

share of trouble. Of course, we at the Pulmonary Fibrosis Foundation

are working at hard at trying to raise awareness and much needed

funds for research that will one day find a cure for this disease.

If anyone has more specific questions about the lung transplant

workup process or the emotional side of this equation, you can

always email me at ls_pulmonaryfibrosis@.... I can be reached

at work at - M-F generally from 9a-5p.

Leanne Storch dxd with uip 1/2003

Executive Assistant and Patient Advocate

Pulmonary Fibrosis Foundation

1332 N. Halsted, Suite 201

Chicago, IL 60622-2691

> >

> >

> >

> > Hello Everyone:

> >

> > I've had IPF going on for about 13 months now, I'am on O2 at 6

> > Liters 24/7, and it really stinks, and really getting tired of

the

> > tube.

> > My wife and I was at the pulmonary Doctor last friday and he

wants

> > me to call a doctor in Phila for a lung transplant he has also

> giving

> > me a package of all my test results to take, and IM scared to

> death,

> > I have been through the ringer, with all the test you can

imagine,

> I

> > have tests coming out of my ears.

> > I had to retire from my government job, after 34 years of

service,

> > because the Dr. said that my working day's are over with, Boy

that

> > was a big bomb for us to cope with, first the Dr's said that I

had

> > UIP, and said that I had only 4 years to live, Well I guess now

> maybe

> > 3 or less, but Im still here. I had a lung parts of my left lung

> > removed for test, and the Dr's in Phila said the I had UIP, so

my

> Dr.

> > here had them send the samples to the Mayo Clinic in Az, and it

> came

> > back as IPF, and my condition is getting worse by the day.

> > I would love to talk to someone that went through a lung

> transplant,

> > before and afterwards, there's no one here where I live the has

IPF

> > or no one to talk to and no support groups, IM just stuck out

there

> > by myself and it does get to be scarey.

> > And when I get real nerves I smoke a cigertte I know thats not

> good,

> > but need something to calm me down.

> > Oh yea I forgot, about 6 months after I got the IPF, I got R/A,

it

> > was so bad they had to rush me to the hospital, I couldn't move

at

> > all, IM on pain killers from my R/A Doctor and just O2 from my

> > pulmonary Doctor, I've known now, that my IPF stages had

advanced

> and

> > everytime, I talk to the Dr. I get the run around, I 53 years

old

> > with a very lovely supported wife and 2 great daughter's, 32 and

27

> > years old and 2 female Jack Russels, I use an electric scooter

and

> > had a electric lift for our van, and I go to P/T twice a week.

> > I always read your wonderful board, and it's looks very

> supportive,

> > and you guy's make everyone feel like family.

> > Well so much for me, love to talk to you guy's more, maybe I

can

> > help out, who knows.

> > But like I said IM really scared to death about this lung

> > transplant, I don't know, If I want to have it done.

> >

> > Thank You And God Bless All:

> >

> > RAndy

> >Hi I am sort of going through the same thing you are . I am still

> going for test's test's and more test . I am not really as scared

as

> you are . I am 61 and just reacently got worse . In March I spent

9

> days in a Hospital in Reno NV and got home in April then spent 8

days

> in the Hospital in Baltimore . I had to stop working also and

apply

> for ssi . In 5 months I might get something may be ? I will have

to

> take everything I have in my IRA or refinance my house I cant do

> because i'm not working . Sort of everything is backwards . I have

> health Insurance but it will not pay for all . I am also wondering

if

> everything you have to go through is worth it ? There are so many

> If's . Rejection how well will you be after and the never ending

> testing . If it were not for my Daughter and my grandson I would

not

> even think about having one . But on ether hand I don't know if I

> want to put my daughter through this . So fare just the 17 days I

> spent in the Hospital is 150.000 Is my l really worth this much ?

> When and If I do this how will I pay for all this ? Everything I

have

> will have to go for this . My family will get nothing . As if

> anything we have now will be worth something in 10 years the way

> stuff is going . I also am in limbo on what to do . Good luck . I

> home 90 miles away from Philadelphia and also live in Baltimore MD

> witch is 4 miles away from one of the best Hospitals in the world

> 's Hopkins I am kind of lucky in that way . Lots of people on

> here have to go miles just to see a Doctor . I might even think of

> renting a room to someone needing to go to one of thees

> hospitals .That is a lot to think about . From Walt God bless us

all

>

[Guest guest]

Walt and Art, You are not alone. We all go through these scary times. The think we have to remember knowing what we do, is we still have to live out lives. "There is not an expiration stamp on you anywhere". Only God knows. All the members here are in this fight together. We Get it and understand every emotion you are going through. We all fight everyday to make it a good day. A positive attitude is the best medicine you can give yourself. Anytime your are down just come tell us here on the board. We do our best to comfort you and help you over the hump. Someone is usually on the board so ya never know who will reply. Just don't feel you are alone. God Bless. Peggy, ipf 6/04 Florida  Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. >> > > Hello Everyone:> > I've had IPF going on for about 13 months now, I'am on O2 at 6 > Liters 24/7, and it really stinks, and really getting tired of the > tube.> My wife and I was at the pulmonary Doctor last friday and he wants > me to call a doctor in Phila for a lung transplant he has also giving > me a package of all my test results to take, and IM scared to death, > I have been through the ringer, with all the test you can imagine, I > have tests coming out of my ears.> I had to retire from my government job, after 34 years of service, > because the Dr. said that my working day's are over with, Boy that > was a big bomb for us to cope with, first the Dr's said that I had > UIP, and said that I had only 4 years to live, Well I guess now maybe > 3 or less, but Im still here. I had a lung parts of my left lung > removed for test, and the Dr's in Phila said the I had UIP, so my Dr. > here had them send the samples to the Mayo Clinic in Az, and it came > back as IPF, and my condition is getting worse by the day.> I would love to talk to someone that went through a lung transplant, > before and afterwards, there's no one here where I live the has IPF > or no one to talk to and no support groups, IM just stuck out there > by myself and it does get to be scarey.> And when I get real nerves I smoke a cigertte I know thats not good, > but need something to calm me down.> Oh yea I forgot, about 6 months after I got the IPF, I got R/A, it > was so bad they had to rush me to the hospital, I couldn't move at > all, IM on pain killers from my R/A Doctor and just O2 from my > pulmonary Doctor, I've known now, that my IPF stages had advanced and > everytime, I talk to the Dr. I get the run around, I 53 years old > with a very lovely supported wife and 2 great daughter's, 32 and 27 > years old and 2 female Jack Russels, I use an electric scooter and > had a electric lift for our van, and I go to P/T twice a week.> I always read your wonderful board, and it's looks very supportive, > and you guy's make everyone feel like family.> Well so much for me, love to talk to you guy's more, maybe I can > help out, who knows. > But like I said IM really scared to death about this lung > transplant, I don't know, If I want to have it done.> > Thank You And God Bless All:> > RAndy>Hi I am sort of going through the same thing you are . I am still going for test's test's and more test . I am not really as scared as you are . I am 61 and just reacently got worse . In March I spent 9 days in a Hospital in Reno NV and got home in April then spent 8 days in the Hospital in Baltimore . I had to stop working also and apply for ssi . In 5 months I might get something may be ? I will have to take everything I have in my IRA or refinance my house I cant do because i'm not working . Sort of everything is backwards . I have health Insurance but it will not pay for all . I am also wondering if everything you have to go through is worth it ? There are so many If's . Rejection how well will you be after and the never ending testing . If it were not for my Daughter and my grandson I would not even think about having one . But on ether hand I don't know if I want to put my daughter through this . So fare just the 17 days I spent in the Hospital is 150.000 Is my l really worth this much ? When and If I do this how will I pay for all this ? Everything I have will have to go for this . My family will get nothing . As if anything we have now will be worth something in 10 years the way stuff is going . I also am in limbo on what to do . Good luck . I home 90 miles away from Philadelphia and also live in Baltimore MD witch is 4 miles away from one of the best Hospitals in the world 's Hopkins I am kind of lucky in that way . Lots of people on here have to go miles just to see a Doctor . I might even think of renting a room to someone needing to go to one of thees hospitals .That is a lot to think about . From Walt God bless us all 

[Guest guest]

Walt....what a good idea! Renting a room to someone needing to go to the hospital.

Of course I'm always a little skeptical about a stranger but if it's someone from our board I'm thinking worry would be at a minimum if any....

MamaSher, age 69.IPF 3-06,NSIP 4-08. OR.Don't fret about tomorrow, God is already there!

Re: Lung Transplant

>> > > Hello Everyone:> > I've had IPF going on for about 13 months now, I'am on O2 at 6 > Liters 24/7, and it really stinks, and really getting tired of the > tube.> My wife and I was at the pulmonary Doctor last friday and he wants > me to call a doctor in Phila for a lung transplant he has also giving > me a package of all my test results to take, and IM scared to death, > I have been through the ringer, with all the test you can imagine, I > have tests coming out of my ears.> I had to retire from my government job, after 34 years of service, > because the Dr. said that my working day's are over with, Boy that > was a big bomb for us to cope with, first the Dr's said that I had > UIP, and said that I had only 4 years to live, Well I guess now maybe > 3 or less, but Im still here. I had a lung parts of my left lung > removed for test, and the Dr's in Phila said the I had UIP, so my Dr. > here had them send the samples to the Mayo Clinic in Az, and it came > back as IPF, and my condition is getting worse by the day.> I would love to talk to someone that went through a lung transplant, > before and afterwards, there's no one here where I live the has IPF > or no one to talk to and no support groups, IM just stuck out there > by myself and it does get to be scarey.> And when I get real nerves I smoke a cigertte I know thats not good, > but need something to calm me down.> Oh yea I forgot, about 6 months after I got the IPF, I got R/A, it > was so bad they had to rush me to the hospital, I couldn't move at > all, IM on pain killers from my R/A Doctor and just O2 from my > pulmonary Doctor, I've known now, that my IPF stages had advanced and > everytime, I talk to the Dr. I get the run around, I 53 years old > with a very lovely supported wife and 2 great daughter's, 32 and 27 > years old and 2 female Jack Russels, I use an electric scooter and > had a electric lift for our van, and I go to P/T twice a week.> I always read your wonderful board, and it's looks very supportive, > and you guy's make everyone feel like family.> Well so much for me, love to talk to you guy's more, maybe I can > help out, who knows. > But like I said IM really scared to death about this lung > transplant, I don't know, If I want to have it done.> > Thank You And God Bless All:> > RAndy>Hi I am sort of going through the same thing you are . I am still going for test's test's and more test . I am not really as scared as you are . I am 61 and just reacently got worse . In March I spent 9 days in a Hospital in Reno NV and got home in April then spent 8 days in the Hospital in Baltimore . I had to stop working also and apply for ssi . In 5 months I might get something may be ? I will have to take everything I have in my IRA or refinance my house I cant do because i'm not working . Sort of everything is backwards . I have health Insurance but it will not pay for all . I am also wondering if everything you have to go through is worth it ? There are so many If's . Rejection how well will you be after and the never ending testing . If it were not for my Daughter and my grandson I would not even think about having one . But on ether hand I don't know if I want to put my daughter through this . So fare just the 17 days I spent in the Hospital is 150.000 Is my l really worth this much ? When and If I do this how will I pay for all this ? Everything I have will have to go for this . My family will get nothing . As if anything we have now will be worth something in 10 years the way stuff is going . I also am in limbo on what to do . Good luck . I home 90 miles away from Philadelphia and also live in Baltimore MD witch is 4 miles away from one of the best Hospitals in the world 's Hopkins I am kind of lucky in that way . Lots of people on here have to go miles just to see a Doctor . I might even think of renting a room to someone needing to go to one of thees hospitals .That is a lot to think about . From Walt God bless us all

[Guest guest]

Hi Wayne,

my mom turns 50 later this year. i can understand your irritation about people

asking you

if you are 'OK' and how you are doing? my mom gets that a lot not only from

strangers but

also from acquaintances and relatives, and absolutely detests it.

do you have a oximeter? it would help to keep a check of your saturation levels.

sats going

below 90 is strictly not advised by doctors.

do keep in touch

warm regards,

vrinda

>

> Dear Vrinda,

>

> Thank you for the information about that site.

>

> I wish your mother well. She is somewhat more incapacitated than I am. I

> have not yet obtained oxygen, though I suspect I should have done so. I do a

> lot of huffing and puffing. People keep asking me if I am OK and one rather

> nasty immigration official asked me not to breathe on her when I came back

> from an overseas trip.

>

> Please keep me updated on her course. How old is she? I am at Columbia

> and luckily they seem to accept us old goats (not that your mother is anywhere

> near as old as I am).

>

> Best,

>

> Wayne Hening

> NY/63/IPF 5/06

>

> Re: Lung Transplant

> Posted by: " v_since1982 " v_since1982@...   v_since1982

> Mon Jun 2, 2008 1:14 am (PDT)

>

> Hi Wayne,

>

> my mom is currently being evaluated for a transplant. a few tests are

> pending. she was

> diagnosed with IPF in june '04. a series of infections after july '07 made

> her condition

> worse, and the last couple of months she has been on o2 24/7. we have been

> reading a

> lot about the transplant process - pre and post. i found the website

> www.2ndwind. lot

> particularly resourceful.

>

> regards,

>

> vrinda

>

>

>

> **************

> Get trade secrets for amazing burgers. Watch " Cooking with

> Tyler Florence " on AOL Food.

> (http://food.aol.com/tyler-florence?video=4 & amp;

> ?NCID=aolfod00030000000002)

>

[Guest guest]

Hi Wayne,

my mom turns 50 later this year. i can understand your irritation about people

asking you

if you are 'OK' and how you are doing? my mom gets that a lot not only from

strangers but

also from acquaintances and relatives, and absolutely detests it.

do you have a oximeter? it would help to keep a check of your saturation levels.

sats going

below 90 is strictly not advised by doctors.

do keep in touch

warm regards,

vrinda

>

> Dear Vrinda,

>

> Thank you for the information about that site.

>

> I wish your mother well. She is somewhat more incapacitated than I am. I

> have not yet obtained oxygen, though I suspect I should have done so. I do a

> lot of huffing and puffing. People keep asking me if I am OK and one rather

> nasty immigration official asked me not to breathe on her when I came back

> from an overseas trip.

>

> Please keep me updated on her course. How old is she? I am at Columbia

> and luckily they seem to accept us old goats (not that your mother is anywhere

> near as old as I am).

>

> Best,

>

> Wayne Hening

> NY/63/IPF 5/06

>

> Re: Lung Transplant

> Posted by: " v_since1982 " v_since1982@...   v_since1982

> Mon Jun 2, 2008 1:14 am (PDT)

>

> Hi Wayne,

>

> my mom is currently being evaluated for a transplant. a few tests are

> pending. she was

> diagnosed with IPF in june '04. a series of infections after july '07 made

> her condition

> worse, and the last couple of months she has been on o2 24/7. we have been

> reading a

> lot about the transplant process - pre and post. i found the website

> www.2ndwind. lot

> particularly resourceful.

>

> regards,

>

> vrinda

>

>

>

> **************

> Get trade secrets for amazing burgers. Watch " Cooking with

> Tyler Florence " on AOL Food.

> (http://food.aol.com/tyler-florence?video=4 & amp;

> ?NCID=aolfod00030000000002)

>

[Guest guest]

Randy, just a small bit of Xanax under the tongue quiets a panic attack for me. They taste really really really nasty, so have a sweet to follow it. It melts quickly. I am having a few attacks now, since my husband's death.. they are awful. I don't worry about getting hooked on the Xanax.. they taste too nasty to really want them.. but, when I need one they work great for me. No need to suffer, I say. Praying for you.. Gale in TX 10/06 IPF

Randy,

Oh, please don't resort to those nasty cigerettes when you are feeling panicked. Every one of us has felt that awful cold knot in the gut that is fear! I described these panic attacks to my doc and he prescribed Xanax. When I feel the thing beginning I take one and it levels out. I can take up to three a day, but some days I do o.k.

I think with you being just 53 and being the head of a family, it has to be worse. Dad is supposed to be strong and take care of everyone. Well, it doesn't always turn out like we plan. I certainly did not plan on this. I hate it!!!! I hate this disease!!!

Sounds like you have a good family support. The rest of it, you are welcome to unload here. We will listen and we care.

We all hate the stupid tubing. Now I not only have the 02 tubing, but a tube running out of my chest. So, I live is a spider web. Everytime I move they are getting all knotted up. I have to sit down and unwind them from each other and my legs, from around chair legs and stuck in every knob. Aaaargh.

You know, I would bet that you had RA before you had PF....that it was dormant or working quietly inside to destroy your lungs. You are not the first person that I know who has presented with RA after being diagnosed with lung disease or heart disease. It can be a quiet killer! Everyone equates it with joint pain, etc. when actually it destroys connnective tissue throughout your body. If you do not have a good Rheumatologist....get one. It could save your life!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> >> > > > > > Hello Everyone:> > > > I've had IPF going on for about 13 months now, I'am on O2 at 6 > > Liters 24/7, and it really stinks, and really getting tired of the > > tube.> > My wife and I was at the pulmonary Doctor last friday and he wants > > me to call a doctor in Phila for a lung transplant he has also > giving > > me a package of all my test results to take, and IM scared to > death, > > I have been through the ringer, with all the test you can imagine, > I > > have tests coming out of my ears.> > I had to retire from my government job, after 34 years of service, > > because the Dr. said that my working day's are over with, Boy that > > was a big bomb for us to cope with, first the Dr's said that I had > > UIP, and said that I had only 4 years to live, Well I guess now > maybe > > 3 or less, but Im still here. I had a lung parts of my left lung > > removed for test, and the Dr's in Phila said the I had UIP, so my > Dr. > > here had them send the samples to the Mayo Clinic in Az, and it > came > > back as IPF, and my condition is getting worse by the day.> > I would love to talk to someone that went through a lung > transplant, > > before and afterwards, there's no one here where I live the has IPF > > or no one to talk to and no support groups, IM just stuck out there > > by myself and it does get to be scarey.> > And when I get real nerves I smoke a cigertte I know thats not > good, > > but need something to calm me down.> > Oh yea I forgot, about 6 months after I got the IPF, I got R/A, it > > was so bad they had to rush me to the hospital, I couldn't move at > > all, IM on pain killers from my R/A Doctor and just O2 from my > > pulmonary Doctor, I've known now, that my IPF stages had advanced > and > > everytime, I talk to the Dr. I get the run around, I 53 years old > > with a very lovely supported wife and 2 great daughter's, 32 and 27 > > years old and 2 female Jack Russels, I use an electric scooter and > > had a electric lift for our van, and I go to P/T twice a week.> > I always read your wonderful board, and it's looks very > supportive, > > and you guy's make everyone feel like family.> > Well so much for me, love to talk to you guy's more, maybe I can > > help out, who knows. > > But like I said IM really scared to death about this lung > > transplant, I don't know, If I want to have it done.> > > > Thank You And God Bless All:> > > > RAndy> >Hi I am sort of going through the same thing you are . I am still > going for test's test's and more test . I am not really as scared as > you are . I am 61 and just reacently got worse . In March I spent 9 > days in a Hospital in Reno NV and got home in April then spent 8 days > in the Hospital in Baltimore . I had to stop working also and apply > for ssi . In 5 months I might get something may be ? I will have to > take everything I have in my IRA or refinance my house I cant do > because i'm not working . Sort of everything is backwards . I have > health Insurance but it will not pay for all . I am also wondering if > everything you have to go through is worth it ? There are so many > If's . Rejection how well will you be after and the never ending > testing . If it were not for my Daughter and my grandson I would not > even think about having one . But on ether hand I don't know if I > want to put my daughter through this . So fare just the 17 days I > spent in the Hospital is 150.000 Is my l really worth this much ? > When and If I do this how will I pay for all this ? Everything I have > will have to go for this . My family will get nothing . As if > anything we have now will be worth something in 10 years the way > stuff is going . I also am in limbo on what to do . Good luck . I > home 90 miles away from Philadelphia and also live in Baltimore MD > witch is 4 miles away from one of the best Hospitals in the world > 's Hopkins I am kind of lucky in that way . Lots of people on > here have to go miles just to see a Doctor . I might even think of > renting a room to someone needing to go to one of thees > hospitals .That is a lot to think about . From Walt God bless us all>

Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food.

[Guest guest]

Randy,

Oh, please don't resort to those nasty cigerettes when you are feeling panicked. Every one of us has felt that awful cold knot in the gut that is fear! I described these panic attacks to my doc and he prescribed Xanax. When I feel the thing beginning I take one and it levels out. I can take up to three a day, but some days I do o.k.

I think with you being just 53 and being the head of a family, it has to be worse. Dad is supposed to be strong and take care of everyone. Well, it doesn't always turn out like we plan. I certainly did not plan on this. I hate it!!!! I hate this disease!!!

Sounds like you have a good family support. The rest of it, you are welcome to unload here. We will listen and we care.

We all hate the stupid tubing. Now I not only have the 02 tubing, but a tube running out of my chest. So, I live is a spider web. Everytime I move they are getting all knotted up. I have to sit down and unwind them from each other and my legs, from around chair legs and stuck in every knob. Aaaargh.

You know, I would bet that you had RA before you had PF....that it was dormant or working quietly inside to destroy your lungs. You are not the first person that I know who has presented with RA after being diagnosed with lung disease or heart disease. It can be a quiet killer! Everyone equates it with joint pain, etc. when actually it destroys connnective tissue throughout your body. If you do not have a good Rheumatologist....get one. It could save your life!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> >> > > > > > Hello Everyone:> > > > I've had IPF going on for about 13 months now, I'am on O2 at 6 > > Liters 24/7, and it really stinks, and really getting tired of the > > tube.> > My wife and I was at the pulmonary Doctor last friday and he wants > > me to call a doctor in Phila for a lung transplant he has also > giving > > me a package of all my test results to take, and IM scared to > death, > > I have been through the ringer, with all the test you can imagine, > I > > have tests coming out of my ears.> > I had to retire from my government job, after 34 years of service, > > because the Dr. said that my working day's are over with, Boy that > > was a big bomb for us to cope with, first the Dr's said that I had > > UIP, and said that I had only 4 years to live, Well I guess now > maybe > > 3 or less, but Im still here. I had a lung parts of my left lung > > removed for test, and the Dr's in Phila said the I had UIP, so my > Dr. > > here had them send the samples to the Mayo Clinic in Az, and it > came > > back as IPF, and my condition is getting worse by the day.> > I would love to talk to someone that went through a lung > transplant, > > before and afterwards, there's no one here where I live the has IPF > > or no one to talk to and no support groups, IM just stuck out there > > by myself and it does get to be scarey.> > And when I get real nerves I smoke a cigertte I know thats not > good, > > but need something to calm me down.> > Oh yea I forgot, about 6 months after I got the IPF, I got R/A, it > > was so bad they had to rush me to the hospital, I couldn't move at > > all, IM on pain killers from my R/A Doctor and just O2 from my > > pulmonary Doctor, I've known now, that my IPF stages had advanced > and > > everytime, I talk to the Dr. I get the run around, I 53 years old > > with a very lovely supported wife and 2 great daughter's, 32 and 27 > > years old and 2 female Jack Russels, I use an electric scooter and > > had a electric lift for our van, and I go to P/T twice a week.> > I always read your wonderful board, and it's looks very > supportive, > > and you guy's make everyone feel like family.> > Well so much for me, love to talk to you guy's more, maybe I can > > help out, who knows. > > But like I said IM really scared to death about this lung > > transplant, I don't know, If I want to have it done.> > > > Thank You And God Bless All:> > > > RAndy> >Hi I am sort of going through the same thing you are . I am still > going for test's test's and more test . I am not really as scared as > you are . I am 61 and just reacently got worse . In March I spent 9 > days in a Hospital in Reno NV and got home in April then spent 8 days > in the Hospital in Baltimore . I had to stop working also and apply > for ssi . In 5 months I might get something may be ? I will have to > take everything I have in my IRA or refinance my house I cant do > because i'm not working . Sort of everything is backwards . I have > health Insurance but it will not pay for all . I am also wondering if > everything you have to go through is worth it ? There are so many > If's . Rejection how well will you be after and the never ending > testing . If it were not for my Daughter and my grandson I would not > even think about having one . But on ether hand I don't know if I > want to put my daughter through this . So fare just the 17 days I > spent in the Hospital is 150.000 Is my l really worth this much ? > When and If I do this how will I pay for all this ? Everything I have > will have to go for this . My family will get nothing . As if > anything we have now will be worth something in 10 years the way > stuff is going . I also am in limbo on what to do . Good luck . I > home 90 miles away from Philadelphia and also live in Baltimore MD > witch is 4 miles away from one of the best Hospitals in the world > 's Hopkins I am kind of lucky in that way . Lots of people on > here have to go miles just to see a Doctor . I might even think of > renting a room to someone needing to go to one of thees > hospitals .That is a lot to think about . From Walt God bless us all>

[Guest guest]

Randy,

Oh, please don't resort to those nasty cigerettes when you are feeling panicked. Every one of us has felt that awful cold knot in the gut that is fear! I described these panic attacks to my doc and he prescribed Xanax. When I feel the thing beginning I take one and it levels out. I can take up to three a day, but some days I do o.k.

I think with you being just 53 and being the head of a family, it has to be worse. Dad is supposed to be strong and take care of everyone. Well, it doesn't always turn out like we plan. I certainly did not plan on this. I hate it!!!! I hate this disease!!!

Sounds like you have a good family support. The rest of it, you are welcome to unload here. We will listen and we care.

We all hate the stupid tubing. Now I not only have the 02 tubing, but a tube running out of my chest. So, I live is a spider web. Everytime I move they are getting all knotted up. I have to sit down and unwind them from each other and my legs, from around chair legs and stuck in every knob. Aaaargh.

You know, I would bet that you had RA before you had PF....that it was dormant or working quietly inside to destroy your lungs. You are not the first person that I know who has presented with RA after being diagnosed with lung disease or heart disease. It can be a quiet killer! Everyone equates it with joint pain, etc. when actually it destroys connnective tissue throughout your body. If you do not have a good Rheumatologist....get one. It could save your life!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> >> > > > > > Hello Everyone:> > > > I've had IPF going on for about 13 months now, I'am on O2 at 6 > > Liters 24/7, and it really stinks, and really getting tired of the > > tube.> > My wife and I was at the pulmonary Doctor last friday and he wants > > me to call a doctor in Phila for a lung transplant he has also > giving > > me a package of all my test results to take, and IM scared to > death, > > I have been through the ringer, with all the test you can imagine, > I > > have tests coming out of my ears.> > I had to retire from my government job, after 34 years of service, > > because the Dr. said that my working day's are over with, Boy that > > was a big bomb for us to cope with, first the Dr's said that I had > > UIP, and said that I had only 4 years to live, Well I guess now > maybe > > 3 or less, but Im still here. I had a lung parts of my left lung > > removed for test, and the Dr's in Phila said the I had UIP, so my > Dr. > > here had them send the samples to the Mayo Clinic in Az, and it > came > > back as IPF, and my condition is getting worse by the day.> > I would love to talk to someone that went through a lung > transplant, > > before and afterwards, there's no one here where I live the has IPF > > or no one to talk to and no support groups, IM just stuck out there > > by myself and it does get to be scarey.> > And when I get real nerves I smoke a cigertte I know thats not > good, > > but need something to calm me down.> > Oh yea I forgot, about 6 months after I got the IPF, I got R/A, it > > was so bad they had to rush me to the hospital, I couldn't move at > > all, IM on pain killers from my R/A Doctor and just O2 from my > > pulmonary Doctor, I've known now, that my IPF stages had advanced > and > > everytime, I talk to the Dr. I get the run around, I 53 years old > > with a very lovely supported wife and 2 great daughter's, 32 and 27 > > years old and 2 female Jack Russels, I use an electric scooter and > > had a electric lift for our van, and I go to P/T twice a week.> > I always read your wonderful board, and it's looks very > supportive, > > and you guy's make everyone feel like family.> > Well so much for me, love to talk to you guy's more, maybe I can > > help out, who knows. > > But like I said IM really scared to death about this lung > > transplant, I don't know, If I want to have it done.> > > > Thank You And God Bless All:> > > > RAndy> >Hi I am sort of going through the same thing you are . I am still > going for test's test's and more test . I am not really as scared as > you are . I am 61 and just reacently got worse . In March I spent 9 > days in a Hospital in Reno NV and got home in April then spent 8 days > in the Hospital in Baltimore . I had to stop working also and apply > for ssi . In 5 months I might get something may be ? I will have to > take everything I have in my IRA or refinance my house I cant do > because i'm not working . Sort of everything is backwards . I have > health Insurance but it will not pay for all . I am also wondering if > everything you have to go through is worth it ? There are so many > If's . Rejection how well will you be after and the never ending > testing . If it were not for my Daughter and my grandson I would not > even think about having one . But on ether hand I don't know if I > want to put my daughter through this . So fare just the 17 days I > spent in the Hospital is 150.000 Is my l really worth this much ? > When and If I do this how will I pay for all this ? Everything I have > will have to go for this . My family will get nothing . As if > anything we have now will be worth something in 10 years the way > stuff is going . I also am in limbo on what to do . Good luck . I > home 90 miles away from Philadelphia and also live in Baltimore MD > witch is 4 miles away from one of the best Hospitals in the world > 's Hopkins I am kind of lucky in that way . Lots of people on > here have to go miles just to see a Doctor . I might even think of > renting a room to someone needing to go to one of thees > hospitals .That is a lot to think about . From Walt God bless us all>

[Guest guest]

Randy,

Oh, please don't resort to those nasty cigerettes when you are feeling panicked. Every one of us has felt that awful cold knot in the gut that is fear! I described these panic attacks to my doc and he prescribed Xanax. When I feel the thing beginning I take one and it levels out. I can take up to three a day, but some days I do o.k.

I think with you being just 53 and being the head of a family, it has to be worse. Dad is supposed to be strong and take care of everyone. Well, it doesn't always turn out like we plan. I certainly did not plan on this. I hate it!!!! I hate this disease!!!

Sounds like you have a good family support. The rest of it, you are welcome to unload here. We will listen and we care.

We all hate the stupid tubing. Now I not only have the 02 tubing, but a tube running out of my chest. So, I live is a spider web. Everytime I move they are getting all knotted up. I have to sit down and unwind them from each other and my legs, from around chair legs and stuck in every knob. Aaaargh.

You know, I would bet that you had RA before you had PF....that it was dormant or working quietly inside to destroy your lungs. You are not the first person that I know who has presented with RA after being diagnosed with lung disease or heart disease. It can be a quiet killer! Everyone equates it with joint pain, etc. when actually it destroys connnective tissue throughout your body. If you do not have a good Rheumatologist....get one. It could save your life!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> >> > > > > > Hello Everyone:> > > > I've had IPF going on for about 13 months now, I'am on O2 at 6 > > Liters 24/7, and it really stinks, and really getting tired of the > > tube.> > My wife and I was at the pulmonary Doctor last friday and he wants > > me to call a doctor in Phila for a lung transplant he has also > giving > > me a package of all my test results to take, and IM scared to > death, > > I have been through the ringer, with all the test you can imagine, > I > > have tests coming out of my ears.> > I had to retire from my government job, after 34 years of service, > > because the Dr. said that my working day's are over with, Boy that > > was a big bomb for us to cope with, first the Dr's said that I had > > UIP, and said that I had only 4 years to live, Well I guess now > maybe > > 3 or less, but Im still here. I had a lung parts of my left lung > > removed for test, and the Dr's in Phila said the I had UIP, so my > Dr. > > here had them send the samples to the Mayo Clinic in Az, and it > came > > back as IPF, and my condition is getting worse by the day.> > I would love to talk to someone that went through a lung > transplant, > > before and afterwards, there's no one here where I live the has IPF > > or no one to talk to and no support groups, IM just stuck out there > > by myself and it does get to be scarey.> > And when I get real nerves I smoke a cigertte I know thats not > good, > > but need something to calm me down.> > Oh yea I forgot, about 6 months after I got the IPF, I got R/A, it > > was so bad they had to rush me to the hospital, I couldn't move at > > all, IM on pain killers from my R/A Doctor and just O2 from my > > pulmonary Doctor, I've known now, that my IPF stages had advanced > and > > everytime, I talk to the Dr. I get the run around, I 53 years old > > with a very lovely supported wife and 2 great daughter's, 32 and 27 > > years old and 2 female Jack Russels, I use an electric scooter and > > had a electric lift for our van, and I go to P/T twice a week.> > I always read your wonderful board, and it's looks very > supportive, > > and you guy's make everyone feel like family.> > Well so much for me, love to talk to you guy's more, maybe I can > > help out, who knows. > > But like I said IM really scared to death about this lung > > transplant, I don't know, If I want to have it done.> > > > Thank You And God Bless All:> > > > RAndy> >Hi I am sort of going through the same thing you are . I am still > going for test's test's and more test . I am not really as scared as > you are . I am 61 and just reacently got worse . In March I spent 9 > days in a Hospital in Reno NV and got home in April then spent 8 days > in the Hospital in Baltimore . I had to stop working also and apply > for ssi . In 5 months I might get something may be ? I will have to > take everything I have in my IRA or refinance my house I cant do > because i'm not working . Sort of everything is backwards . I have > health Insurance but it will not pay for all . I am also wondering if > everything you have to go through is worth it ? There are so many > If's . Rejection how well will you be after and the never ending > testing . If it were not for my Daughter and my grandson I would not > even think about having one . But on ether hand I don't know if I > want to put my daughter through this . So fare just the 17 days I > spent in the Hospital is 150.000 Is my l really worth this much ? > When and If I do this how will I pay for all this ? Everything I have > will have to go for this . My family will get nothing . As if > anything we have now will be worth something in 10 years the way > stuff is going . I also am in limbo on what to do . Good luck . I > home 90 miles away from Philadelphia and also live in Baltimore MD > witch is 4 miles away from one of the best Hospitals in the world > 's Hopkins I am kind of lucky in that way . Lots of people on > here have to go miles just to see a Doctor . I might even think of > renting a room to someone needing to go to one of thees > hospitals .That is a lot to think about . From Walt God bless us all>

[Guest guest]

Joyce,

Do you have a Central Line in your chest?

I have a PICC Line (the tube runs just above my heart and it has to 2 clamps one for blood tests and the 2nd for

IV fluids and medications.

The line is located on my upper arm. The Home Care Nurse comes every week to check for infection and to change

the dressing

Taking a shower, it's getting used to it because I have to wrap it with plastic bags and tape it with the surgical tape

Irene

---- Original Message ----

To: Breathe-Support

Sent: Mon, 2 Jun 2008 3:09 pm

Subject: Re: Lung Transplant

Randy,

Oh, please don't resort to those nasty cigerettes when you are feeling panicked. Every one of us has felt that awful cold knot in the gut that is fear! I described these panic attacks to my doc and he prescribed Xanax. When I feel the thing beginning I take one and it levels out. I can take up to three a day, but some days I do o.k.

I think with you being just 53 and being the head of a family, it has to be worse. Dad is supposed to be strong and take care of everyone. Well, it doesn't always turn out like we plan. I certainly did not plan on this. I hate it!!!! I hate this disease!!!

Sounds like you have a good family support. The rest of it, you are welcome to unload here. We will listen and we care.

We all hate the stupid tubing. Now I not only have the 02 tubing, but a tube running out of my chest. So, I live is a spider web. Everytime I move they are getting all knotted up. I have to sit down and unwind them from each other and my legs, from around chair legs and stuck in every knob. Aaaargh.

You know, I would bet that you had RA before you had PF....that it was dormant or working quietly inside to destroy your lungs. You are not the first person that I know who has presented with RA after being diagnosed with lung disease or heart disease. It can be a quiet killer! Everyone equates it with joint pain, etc. when actually it destroys connnective tissue throughout your body. If you do not have a good Rheumatologist....get one. It could save your life!

Hugs, Joyce D.

Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008

Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006

......I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

> >

> >

> >

> > Hello Everyone:

> >

> > I've had IPF going on for about 13 months now, I'am on O2 at 6

> > Liters 24/7, and it really stinks, and really getting tired of the

> > tube.

> > My wife and I was at the pulmonary Doctor last friday and he wants

> > me to call a doctor in Phila for a lung transplant he has also

> giving

> > me a package of all my test results to take, and IM scared to

> death,

> > I have been through the ringer, with all the test you can imagine,

> I

> > have tests coming out of my ears.

> > I had to retire from my government job, after 34 years of service,

> > because the Dr. said that my working day's are over with, Boy that

> > was a big bomb for us to cope with, first the Dr's said that I had

> > UIP, and said that I had only 4 years to live, Well I guess now

> maybe

> > 3 or less, but Im still here. I had a lung parts of my left lung

> > removed for test, and the Dr's in Phila said the I had UIP, so my

> Dr.

> > here had them send the samples to the Mayo Clinic in Az, and it

> came

> > back as IPF, and my condition is getting worse by the day.

> > I would love to talk to someone that went through a lung

> transplant,

> > before and afterwards, there's no one here where I live the has IPF

> > or no one to talk to and no support groups, IM just stuck out there

> > by myself and it does get to be scarey.

> > And when I get real nerves I smoke a cigertte I know thats not

> good,

> > but need something to calm me down.

> > Oh yea I forgot, about 6 months after I got the IPF, I got R/A, it

> > was so bad they had to rush me to the hospital, I couldn't move at

> > all, IM on pain killers from my R/A Doctor and just O2 from my

> > pulmonary Doctor, I've known now, that my IPF stages had advanced

> and

> > everytime, I talk to the Dr. I get the run around, I 53 years old

> > with a very lovely supported wife and 2 great daughter's, 32 and 27

> > years old and 2 female Jack Russels, I use an electric scooter and

> > had a electric lift for our van, and I go to P/T twice a week.

> > I always read your wonderful board, and it's looks very

> supportive,

> > and you guy's make everyone feel like family.

> > Well so much for me, love to talk to you guy's more, maybe I can

> > help out, who knows.

> > But like I said IM really scared to death about this lung

> > transplant, I don't know, If I want to have it done.

> >

> > Thank You And God Bless All:

> >

> > RAndy

> >Hi I am sort of going through the same thing you are . I am still

> going for test's test's and more test . I am not really as scared as

> you are . I am 61 and just reacently got worse . In March I spent 9

> days in a Hospital in Reno NV and got home in April then spent 8 days

> in the Hospital in Baltimore . I had to stop working also and apply

> for ssi . In 5 months I might get something may be ? I will have to

> take everything I have in my IRA or refinance my house I cant do

> because i'm not working . Sort of everything is backwards . I have

> health Insurance but it will not pay for all . I am also wondering if

> everything you have to go through is worth it ? There are so many

> If's . Rejection how well will you be after and the never ending

> testing . If it were not for my Daughter and my grandson I would not

> even think about having one . But on ether hand I don't know if I

> want to put my daughter through this . So fare just the 17 days I

> spent in the Hospital is 150.000 Is my l really worth this much ?

> When and If I do this how will I pay for all this ? Everything I have

> will have to go for this . My family will get nothing . As if

> anything we have now will be worth something in 10 years the way

> stuff is going . I also am in limbo on what to do . Good luck . I

> home 90 miles away from Philadelphia and also live in Baltimore MD

> witch is 4 miles away from one of the best Hospitals in the world

> 's Hopkins I am kind of lucky in that way . Lots of people on

> here have to go miles just to see a Doctor . I might even think of

> renting a room to someone needing to go to one of thees

> hospitals .That is a lot to think about . From Walt God bless us all

>

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

[Guest guest]

Joyce,

Do you have a Central Line in your chest?

I have a PICC Line (the tube runs just above my heart and it has to 2 clamps one for blood tests and the 2nd for

IV fluids and medications.

The line is located on my upper arm. The Home Care Nurse comes every week to check for infection and to change

the dressing

Taking a shower, it's getting used to it because I have to wrap it with plastic bags and tape it with the surgical tape

Irene

---- Original Message ----

To: Breathe-Support

Sent: Mon, 2 Jun 2008 3:09 pm

Subject: Re: Lung Transplant

Randy,

Oh, please don't resort to those nasty cigerettes when you are feeling panicked. Every one of us has felt that awful cold knot in the gut that is fear! I described these panic attacks to my doc and he prescribed Xanax. When I feel the thing beginning I take one and it levels out. I can take up to three a day, but some days I do o.k.

I think with you being just 53 and being the head of a family, it has to be worse. Dad is supposed to be strong and take care of everyone. Well, it doesn't always turn out like we plan. I certainly did not plan on this. I hate it!!!! I hate this disease!!!

Sounds like you have a good family support. The rest of it, you are welcome to unload here. We will listen and we care.

We all hate the stupid tubing. Now I not only have the 02 tubing, but a tube running out of my chest. So, I live is a spider web. Everytime I move they are getting all knotted up. I have to sit down and unwind them from each other and my legs, from around chair legs and stuck in every knob. Aaaargh.

You know, I would bet that you had RA before you had PF....that it was dormant or working quietly inside to destroy your lungs. You are not the first person that I know who has presented with RA after being diagnosed with lung disease or heart disease. It can be a quiet killer! Everyone equates it with joint pain, etc. when actually it destroys connnective tissue throughout your body. If you do not have a good Rheumatologist....get one. It could save your life!

Hugs, Joyce D.

Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008

Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006

......I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

> >

> >

> >

> > Hello Everyone:

> >

> > I've had IPF going on for about 13 months now, I'am on O2 at 6

> > Liters 24/7, and it really stinks, and really getting tired of the

> > tube.

> > My wife and I was at the pulmonary Doctor last friday and he wants

> > me to call a doctor in Phila for a lung transplant he has also

> giving

> > me a package of all my test results to take, and IM scared to

> death,

> > I have been through the ringer, with all the test you can imagine,

> I

> > have tests coming out of my ears.

> > I had to retire from my government job, after 34 years of service,

> > because the Dr. said that my working day's are over with, Boy that

> > was a big bomb for us to cope with, first the Dr's said that I had

> > UIP, and said that I had only 4 years to live, Well I guess now

> maybe

> > 3 or less, but Im still here. I had a lung parts of my left lung

> > removed for test, and the Dr's in Phila said the I had UIP, so my

> Dr.

> > here had them send the samples to the Mayo Clinic in Az, and it

> came

> > back as IPF, and my condition is getting worse by the day.

> > I would love to talk to someone that went through a lung

> transplant,

> > before and afterwards, there's no one here where I live the has IPF

> > or no one to talk to and no support groups, IM just stuck out there

> > by myself and it does get to be scarey.

> > And when I get real nerves I smoke a cigertte I know thats not

> good,

> > but need something to calm me down.

> > Oh yea I forgot, about 6 months after I got the IPF, I got R/A, it

> > was so bad they had to rush me to the hospital, I couldn't move at

> > all, IM on pain killers from my R/A Doctor and just O2 from my

> > pulmonary Doctor, I've known now, that my IPF stages had advanced

> and

> > everytime, I talk to the Dr. I get the run around, I 53 years old

> > with a very lovely supported wife and 2 great daughter's, 32 and 27

> > years old and 2 female Jack Russels, I use an electric scooter and

> > had a electric lift for our van, and I go to P/T twice a week.

> > I always read your wonderful board, and it's looks very

> supportive,

> > and you guy's make everyone feel like family.

> > Well so much for me, love to talk to you guy's more, maybe I can

> > help out, who knows.

> > But like I said IM really scared to death about this lung

> > transplant, I don't know, If I want to have it done.

> >

> > Thank You And God Bless All:

> >

> > RAndy

> >Hi I am sort of going through the same thing you are . I am still

> going for test's test's and more test . I am not really as scared as

> you are . I am 61 and just reacently got worse . In March I spent 9

> days in a Hospital in Reno NV and got home in April then spent 8 days

> in the Hospital in Baltimore . I had to stop working also and apply

> for ssi . In 5 months I might get something may be ? I will have to

> take everything I have in my IRA or refinance my house I cant do

> because i'm not working . Sort of everything is backwards . I have

> health Insurance but it will not pay for all . I am also wondering if

> everything you have to go through is worth it ? There are so many

> If's . Rejection how well will you be after and the never ending

> testing . If it were not for my Daughter and my grandson I would not

> even think about having one . But on ether hand I don't know if I

> want to put my daughter through this . So fare just the 17 days I

> spent in the Hospital is 150.000 Is my l really worth this much ?

> When and If I do this how will I pay for all this ? Everything I have

> will have to go for this . My family will get nothing . As if

> anything we have now will be worth something in 10 years the way

> stuff is going . I also am in limbo on what to do . Good luck . I

> home 90 miles away from Philadelphia and also live in Baltimore MD

> witch is 4 miles away from one of the best Hospitals in the world

> 's Hopkins I am kind of lucky in that way . Lots of people on

> here have to go miles just to see a Doctor . I might even think of

> renting a room to someone needing to go to one of thees

> hospitals .That is a lot to think about . From Walt God bless us all

>

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

[Guest guest]

Joyce,

Do you have a Central Line in your chest?

I have a PICC Line (the tube runs just above my heart and it has to 2 clamps one for blood tests and the 2nd for

IV fluids and medications.

The line is located on my upper arm. The Home Care Nurse comes every week to check for infection and to change

the dressing

Taking a shower, it's getting used to it because I have to wrap it with plastic bags and tape it with the surgical tape

Irene

---- Original Message ----

To: Breathe-Support

Sent: Mon, 2 Jun 2008 3:09 pm

Subject: Re: Lung Transplant

Randy,

Oh, please don't resort to those nasty cigerettes when you are feeling panicked. Every one of us has felt that awful cold knot in the gut that is fear! I described these panic attacks to my doc and he prescribed Xanax. When I feel the thing beginning I take one and it levels out. I can take up to three a day, but some days I do o.k.

I think with you being just 53 and being the head of a family, it has to be worse. Dad is supposed to be strong and take care of everyone. Well, it doesn't always turn out like we plan. I certainly did not plan on this. I hate it!!!! I hate this disease!!!

Sounds like you have a good family support. The rest of it, you are welcome to unload here. We will listen and we care.

We all hate the stupid tubing. Now I not only have the 02 tubing, but a tube running out of my chest. So, I live is a spider web. Everytime I move they are getting all knotted up. I have to sit down and unwind them from each other and my legs, from around chair legs and stuck in every knob. Aaaargh.

You know, I would bet that you had RA before you had PF....that it was dormant or working quietly inside to destroy your lungs. You are not the first person that I know who has presented with RA after being diagnosed with lung disease or heart disease. It can be a quiet killer! Everyone equates it with joint pain, etc. when actually it destroys connnective tissue throughout your body. If you do not have a good Rheumatologist....get one. It could save your life!

Hugs, Joyce D.

Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008

Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006

......I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

> >

> >

> >

> > Hello Everyone:

> >

> > I've had IPF going on for about 13 months now, I'am on O2 at 6

> > Liters 24/7, and it really stinks, and really getting tired of the

> > tube.

> > My wife and I was at the pulmonary Doctor last friday and he wants

> > me to call a doctor in Phila for a lung transplant he has also

> giving

> > me a package of all my test results to take, and IM scared to

> death,

> > I have been through the ringer, with all the test you can imagine,

> I

> > have tests coming out of my ears.

> > I had to retire from my government job, after 34 years of service,

> > because the Dr. said that my working day's are over with, Boy that

> > was a big bomb for us to cope with, first the Dr's said that I had

> > UIP, and said that I had only 4 years to live, Well I guess now

> maybe

> > 3 or less, but Im still here. I had a lung parts of my left lung

> > removed for test, and the Dr's in Phila said the I had UIP, so my

> Dr.

> > here had them send the samples to the Mayo Clinic in Az, and it

> came

> > back as IPF, and my condition is getting worse by the day.

> > I would love to talk to someone that went through a lung

> transplant,

> > before and afterwards, there's no one here where I live the has IPF

> > or no one to talk to and no support groups, IM just stuck out there

> > by myself and it does get to be scarey.

> > And when I get real nerves I smoke a cigertte I know thats not

> good,

> > but need something to calm me down.

> > Oh yea I forgot, about 6 months after I got the IPF, I got R/A, it

> > was so bad they had to rush me to the hospital, I couldn't move at

> > all, IM on pain killers from my R/A Doctor and just O2 from my

> > pulmonary Doctor, I've known now, that my IPF stages had advanced

> and

> > everytime, I talk to the Dr. I get the run around, I 53 years old

> > with a very lovely supported wife and 2 great daughter's, 32 and 27

> > years old and 2 female Jack Russels, I use an electric scooter and

> > had a electric lift for our van, and I go to P/T twice a week.

> > I always read your wonderful board, and it's looks very

> supportive,

> > and you guy's make everyone feel like family.

> > Well so much for me, love to talk to you guy's more, maybe I can

> > help out, who knows.

> > But like I said IM really scared to death about this lung

> > transplant, I don't know, If I want to have it done.

> >

> > Thank You And God Bless All:

> >

> > RAndy

> >Hi I am sort of going through the same thing you are . I am still

> going for test's test's and more test . I am not really as scared as

> you are . I am 61 and just reacently got worse . In March I spent 9

> days in a Hospital in Reno NV and got home in April then spent 8 days

> in the Hospital in Baltimore . I had to stop working also and apply

> for ssi . In 5 months I might get something may be ? I will have to

> take everything I have in my IRA or refinance my house I cant do

> because i'm not working . Sort of everything is backwards . I have

> health Insurance but it will not pay for all . I am also wondering if

> everything you have to go through is worth it ? There are so many

> If's . Rejection how well will you be after and the never ending

> testing . If it were not for my Daughter and my grandson I would not

> even think about having one . But on ether hand I don't know if I

> want to put my daughter through this . So fare just the 17 days I

> spent in the Hospital is 150.000 Is my l really worth this much ?

> When and If I do this how will I pay for all this ? Everything I have

> will have to go for this . My family will get nothing . As if

> anything we have now will be worth something in 10 years the way

> stuff is going . I also am in limbo on what to do . Good luck . I

> home 90 miles away from Philadelphia and also live in Baltimore MD

> witch is 4 miles away from one of the best Hospitals in the world

> 's Hopkins I am kind of lucky in that way . Lots of people on

> here have to go miles just to see a Doctor . I might even think of

> renting a room to someone needing to go to one of thees

> hospitals .That is a lot to think about . From Walt God bless us all

>

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