Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Irene, Yes, I have a central line in my chest. I had the picc line for a couple of months, then they changed it to my chest. We are responsible for changing our own dressings, no nurses. 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.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2008 Report Share Posted June 3, 2008 Irene, There is a plastic stick on shield called "Aqua Guard" that the Flolan people provide. It goes right over the sterile dressing. When I had the picc line in my arm I wrapped the arm up with plastic wrap also. I am just really careful. I use a hand held shower and just turn it on when I am rinsing. Real honest to goodness showers are a thing of the past. Ask your home health nurse about the shield. 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 > > > > m aybe > > > > > 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 d eath 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.> > >> >> > > > > > > ________________________________________________________________________> Meet the new AOL.ca. Free radio, music, videos, news & entertainment ? with a Canadian perspective.> Quote Link to comment Share on other sites More sharing options...
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