Re: Lung Transplant

[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 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 & ?NCID=aolfod00030000000002)

[Guest guest]

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 & ?NCID=aolfod00030000000002)

[Guest guest]

>

>

>

> 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]

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