Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 Hi , I'm also in line for a lung transplant here in Chicago. I'm not listed quite yet - probably this summer sometime. I still need to lose poundage. When I was first diagnosed 3 years ago, I saw a lung transplant doctor. My pulmo said that PF patients should at least be on the lung transplant doctor's radar. So, I have been seeing the same guy for three years now. I meet with him quarterly. Since my quality of life is still ok (I can work, etc.) we've been kind of waiting and seeing. Personally, if it's something that could work for you (not all people are able to get transplants, unfortunately) I think it's important to have it as an option. A very good friend of mine passed away from this disease waiting for a lung and he told me not to wait. It still doesn't make the decision any easier. But, we can always say "no" if we want to. Good luck with your appt at the Univ. of Minnesota and please keep us posted. Leannedianadlarson wrote: I've already sent this message once and didn't see it come through, so if it ends up being a duplicate - so sorry -- chalk it up to being technologically challeneged. At any rate, I have come to really appreciate this group and all of your comments. At first I found it very depressing, but then I began to focus on what I could learn rather than on the mere progression of the disease in each of you. I don't hear anyone talk about transplants. Has anyone explored this? I'm being referred to the U of Minnesota to meet with the lung transplant people there and I'm anxious to see what my options are. Hang in there everyone. We have a very big God and if we keep our eyes on Him and not on our circumstances I know things can go smoother. Love to you all. in South Dakota Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 Hi Randy; Let me welcome you to the group. I've only been a "member" for a short time but I can tell you, you will get all the support that you need from these Angels from God. This is the way I feel about them.They have given me so much. I hope you get as much as I do.I was diagnosed with IPF July 05 it has been a very scary road ever since, but Faith,Love and the Joy of life will help you thru these times IPF 7/05art_smmns wrote: 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 How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 Randy, I have Lupus, which is a half brother to RA. Both can affect the lungs. They determined in biopsy that my PF was due to Lupus. By treating the Lupus with immunosuppressants they have slowed the progression of fibrosis. I wonder if you already had RA and it had started the fibrosis. Read posts on RA and Pulmonary >> > > 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> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 Randy, Here goes again. I hit the wrong button and off it went! Read this: http://www.lung.ca/diseases-maladies/a-z/pfibrosis-fibrosep/index_e.php So many times autoimmune diseases can be present in our bodies and we are not aware of it until the big damage is done. Try to find out all you can by searching the internet. You SHOULD go for the evaluation, it will provide good feedback to your docs where you are being treated now. I am going in June and believe me I am hesitant about transplant. You are so young...fight this beast .... do whatever it takes. Stay with us so that you might learn from us and we can learn from you. You are right about having no one to talk to. No one gets it!!!! WE DO! Hugs to you! Joyce PF 1997> >> >> >> > 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> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 RAndy, I have not, nor do I qualify for a lung transplant...I'm 67 and I guess 65 is the limit. I know what it is to afraid!! I was diagnosed just this month with PF and didn't know what it was so I went online. It was there I read "fatal". I nearly fell off my chair. I took in such a huge gasp that my husband came running. I've never been so afraid as facing my own mortality. It's always been "out there somewhere". My nature is usually positive so I latched on to a familiar prayer: The Serenity Prayer....God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference. I have a strong faith and I try daily to dump myself on God. I will include you in my prayers! Sher ipf 5-06 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 Sher, I'm 63. I'll be 64 in Oct. My transplant Dr. said it's not the age as much as the shape your in. You must be able to walk to exercise your new lung, that starts the day after surgery. I think different hospitals have different criteria. I'll be praying for you and Randy too. Remember God is our Father turn to him and he will give you rest and peace dealing with this monster. Who knows we may be here on these computers until the Lord comes again. I'm ready.. God Bless and Keep you.. Peggy 9/04 IPF on 5/10/06 11:00 AM, Sher K Bauman at bofus@... wrote: RAndy, I have not, nor do I qualify for a lung transplant...I'm 67 and I guess 65 is the limit. I know what it is to afraid!! I was diagnosed just this month with PF and didn't know what it was so I went online. It was there I read " fatal " . I nearly fell off my chair. I took in such a huge gasp that my husband came running. I've never been so afraid as facing my own mortality. It's always been " out there somewhere " . My nature is usually positive so I latched on to a familiar prayer: The Serenity Prayer....God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference. I have a strong faith and I try daily to dump myself on God. I will include you in my prayers! Sher ipf 5-06 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 Quote Link to comment Share on other sites More sharing options...
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