Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Wayne....I'm sorry no one responded to your first try...that is unusual. Try emailing subject line to Gwynne. She has recently returned home from an exceptionally successful transplant. Her mother recently died so she hasn't been on the board lately. There are others here who have more knowledge/experience of the transplant process...I have neither except what I read from others. Hopefully you will get some replies this time. MamaSher, age 69.IPF 3-06,NSIP 4-08. OR.Don't fret about tomorrow, God is already there! Lung Transplant 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 todetermine my status.Best,Wayne Hening63/IPF 5/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Wayne, We do have a few waiting. Some closer that others. There are success stories. I am sure they will be posting if they haven't gone on vacation.. Welcome Here.I am 65 and have opted not to transplant. But for the ones that are making that choice God's Speed, Grace and Mercy. 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. 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 todetermine my status.Best,Wayne Hening63/IPF 5/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Randy We have not had experience with biopsy, (hubby has the disease---I'm the talker) but there are a lot on here who have. i'm sure they will answer you. Welcome to the board and I understand "scared" Drs. aren't a little bit mum about all of this, some of have found lots of experiences with a lot of doctors not telling the whole story. Hang around here and you will be enlightened. We are all family, even though I'm an outlaw. lol I think this Thursday there will be a chat and it's a toll free number from US. We would love to have you there. We learn so much from each other. Welcome aboard. K IllinoisSher Bauman wrote: 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 K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Art.... I almost missed your post, saw it below 's. We all here on the board know what you are feeling. We all have had the same feelings and tests and more tests and some with transplant. There are others here on the board who can give info about transplant. I only know what I read. I'm too old for transplant (69) and would opt out at any rate. I have other health issues too and don't want to go through a transplant. Watch for posts from Gwynne. Her mother died recently so she isn't posting lately. She is just 52 days out from transplant and doing very well! Put her name in the subject line or even just wanting info about transplant. You will get answers from those who know. I don't. I'm so sorry you had to leave your job. I'm hoping 34 years will give you a good retirement check! I do understand what it's like to be date-stamped for mortality. But remember, as we say here, there is no date-stamp on our butt so keep on keepin' on one day at a time and stay close to the board with people who can give good support and info. Now you know we're going to advise, "Don't smoke!"...I was a smoker many years ago and I know it's hard to quit, especially under stress. However, you know your lungs need all the clear air they can pull in. You do know to be careful smoking around O2 don't you???? Gather all the information you can Art, about a transplant. Good and not so good. That will help making a decision easier. Are you already cleared for transplant or yet to have the evaluations? Don't jump too far ahead or you'll scare the hell out of yourself! Hang on. MamaSher, age 69. IPF 3-06, 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 K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
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