Pulmonary Fibrosis Support Group

Wow that is very quick and massive, they missed my first onset for a few months diagnosising as pneumonia. But steroids and the lung rehab center really helped hold it in check for a few months. I am taking predisone and azathioprine both help keep the imune system suppressed and worked quite well for a while ask your doctor about azathioprine and if there is a lung rehab center where you live, they will help keep what good tissue Mike has left working well and healthy and with coping really helped me

Thanks for that info. will ask about the azathioprine. We do have a physio already who has been very helpful with lung rehab. and Mike tries to keep going with the excersise/lung function regime.
It has been rather frightening though as we dont seem to have had chance to come to terms with it before it became life threatening :(

As hard as it may sound to do positive thinking is a must. Remember this saying its 90% attitude and 10% medical. Try to concentrate on what is going well and both you and Mike need to take some me time each day even if it is just a 1/2 hour to read or sit quietly and try to relax. It has helped me get this far.

my husband was diagnosed in February and now (7 mos later) he in ICU and has been for 2 weeks...his pneumonia is gone but somehow it damaged his lungs or something, anyway, he's on the highest oxygen they have and he can't seem to get off of it. Duke will not take him as a lung transplant with a high oxygen rate. I have yet to tell him that he's not a candidate, it will really upset him.

My husband was diagnosed with PF 4-1/2 years ago, his twin brother 10 yrs ago, and his older brother 2 yrs ago. He is now awaiting a transplant. No matter what any doctor tells you they do NOT have it under control. PF can change in a moment. The only option is a lung transplant.

Lynda, each person is different...my husband had rapid onset but his brother also has it and doesn't seem very bad at this point. But I will say, if you go on Imuran or any immunosuppressant...wear a mask...that's how my husband got pneumonia and passed away. We can NEVER be too careful. God Bless

My father had a bad cough since 2007.He continued to work although he was no longer able to perform his duties in supervision. They placed him in the toolroom as the Toolroom Attendant. He sought medical attention he went to several Dr.'s before he found out he had Pulmonary Fibrosis November, 2008 He started him on some medication and he continued to work although short of breath and coughing. In April 2009 he became so ill that he could no longer work he could only walk a short distance before he had to sit and rest. The Dr. ask him to do a biopsy, he first had a bronchical biopsy In April 2009, the biopsy didn't give them anything specific that they could go on. He was then treated with steroids Predisone 80mg for 6 weeks, it helped his coughing but CT scan showed there was little to no change. In June he had an episode of chills, he could not get warm, he had a fever, and shaking uncontrollably. We called 911 when they arrived his Oxygen was 57 they put him on oxygen and air flighted him to the hospital. They placed him in a private room overnight where his oxygen was at 95-98 on nasal oxygen he did fairly well they diagnosed him with pneumonia and the next day he seemed to be better he went in the bathroom where we placed a chair in the shower so he could bath and then put the chair in front of the sink so he could shave. My dad was a very independent man and wouldn't let anyone do anything for him, he even tried to put the chair in the bath. It was very difficult for him to breath but he hid it from us for a long time. After he got back in the bed that morning they could never get his oxygen up they placed it as high as it would go and it still would not come up. They sent him to CCU where he was placed on high flow oxygen at 3 liters. Before night he was 100% oxygen the highest you can go without being ventalated. He was on this for 2 days and they began to ween him off, they got him down low enough that the Dr. ask to do an Open Lung Biopsy which may or may not give us an answer on how to treat him. The Dr. told us without Open Lung Biopsy that he had 2 weeks and the chanses of him coming out of the biopsy were 50/50. He also had said that he did not want to be put on Life support(Ventalater) but the Dr. explained to him to have the biopsy he would be put on the ventalater maybe for several days. We left it up to my dad and he chose to do the Open Lung Biopsy because the Dr. had told us that it could give him as long as 2 years if they could find out how he needed to be treated. The next day they did the Open Lung Biopsy and he came out of it remarkably well and was taken off the ventalater within a hour after surgery. They left the drainage tube in for 1 day on suction and 2 days on non- suction. But after they took it out he had a hole that was not healing in the lung and they had to put the tube back in they removed the tube the day before we went home. He spent 1 day in a private room 8 days in CCU and 11 days back in a private room. At this time he was walking, he started walking before he left CCU even though it was a short distances and with the use of a walker. He was released on oxygen nasal can set on 2. He did O.K. for the first few days but it went downhill from there. We purchased an oxymeter which was great because his oxygen fluctuated so. The 5th day he could not even walk 2 feet. He refused to use a bed pan we had a bedside potty for him. We could sit him on the side of the bed and his oxygen would fall into the 60's the Dr. had told us not to turn his oxygen above 3 his home health nurse then called the Dr. and he advised us to put the oxygen on 5 for all activities except eating it was to be put on 4, and 2 to 3 at rest whatever he could tolerate. We would put his oxygen on 5 for him to get up on the side of the bed and he would have to wait 15 to 20 minutes for his oxygen to get into the 90's so we could stand him up, and turn him for the potty. Where he would have to sit 15 to 20 minutes after he finished to get his oxygen up again before we could put him back in bed. He had a follow up Dr.'s visit on Monday with the surgeon which he was not really able to go but insisted because he needed to be released from him so he could start another medicine called Imaran (I think that was the name of it). Then he had another apointment Thursday with his Pulmonary DR. to get started on the new medicine. Saturday we called 911 around 5:00 a.m. they had to put him on the ventalater on the way to the hospital. This was a August 1st, he was home 3 weeks and 1 day. He was sent to MICU, they took him off the ventalater on Monday he was doing O.K. but that night he got worse they had to keep raising his oxygen on the Aquanox until they got it back to the highest setting without venting him again. The next day (Tuesday) they started weening him off again but didn't make it far. Wednesday he wanted to be moved to a room so we could be with him all the time he hated being alone. They tried to move him but his oxygen fell too much. The next evening (Thursday) they moved him to a room, We were happy to be able to stay with him all the time. But that night he had no rest, we had to put him on and off the bed pan 9 times within 14 hours. My father died that evening at 7:00 I said all this to tell you that no one can prepare you for what you are going to face. We just knew that there would be something they could do to stop it. Don't give up I hope that he has caught it in time that they can slow it enough for a lung transplant or maybe a new medicine can be discovered in time for him. The Dr. told us in April 2009, that he had 6 weeks to 2 years. I still see his eyes looking at me for help and there was nothing I could do. My mother and I never left the hospital either time he was there, And we are so glad we didn't, my brother had to work but was there every evening to visit. I stayed at my mom and dad's house after his hospital stay the first time, I slept in the room with him and he had very little sleep, could not eat, his nerves were bad and he could not talk very much, he kept his faith in God which I know is what gave him his strength. Cause of death Respitory Failure due to Idiopathic Pulmonary Fibrosis. He lived 16 weeks after he had to quit his job in April 2009. He was not physically able to work for along time but he just kept going, I think it took his mind off his condition. He told us he wasn't afraid of dying, but he just didn't want to leave us. The comment on possitive thinking is right. Hope all goes well for him.

I'm so sorry on the loss of your Dad and espeically for your Mom. I just lost my husband 3 weeks ago, same story with oxygen but he had only been diagnosed 6 months. A lung transplant is the only ":cure", if there is anything. They need to do research and get the drugs approved.

YOUR RIGHT ABOUT THE LUNG TRANSPLANT, IT IS THE ONLY CURE ALTHOUGH IT ONLY LAST FOR 2 TO 3 YEARS. IT'S BETTER THAN THE TIME THEY HAVE WITHOUT DOING IT AND THE MISERY THEY GO THROUGH, IF MY DAD HAD KNOWN THIS BACK IN NOVEMBER 2008 I'M SURE HE WOULD HAVE TRIED TO GET A LUNG TRANSPLANT BUT HIS DR. DIDN'T MAKE IT SEEM AS THOUGH THIS WAS URGENT OR THE BEST OPTION AT THE TIME. BUT NOW WE KNOW IT WAS. WHY CAN'T THEY JUST COME OUT AND TELL YOU THIS IS THE ONLY THING TO DO, I DON'T UNDERSTAND. I THINK DR.'S NEED TO LET YOU KNOW ALL THE OPTIONS AND TELL YOU BY THE TIME YOU FINISH ALL THESE OTHER OPTIONS IT MAY BE TOO LATE TO GO FOR THE LUNG TRANSPLANT. BY THE TIME MY DAD WASTED ALL THE TIME TO SEE IF THE PREDISONE WAS GOING TO WORK AND ALL THE OTHER MEDICINES IT WAS TOO LATE FOR HIM TO GET ON A LUNG TRANSPLANT LIST. HE DIDN'T EVEN HAVE THIS OPTION BECAUSE WHEN HE STARTED GOING DOWNHILL IN APRIL IT WAS JUST TOO FAST. I CAN'T AND WOUDN'T TELL ANYONE WHAT TO DO! BUT I WOULD DEFINITLY MAKE SURE MY DR. TOLD ME EVERYTHING ABOUT THE OPTIONS AND TIME. YOU HAVE TO BE IN GOOD ENOUGH CONDITION TO BE PUT ON THE TRANSPLANT LIST AND IT MAY TAKE AWHILE FOR YOU TO GET A MATCH. THE LAST TIME MY DAD WAS PUT IN THE HOSPITAL WE ASK HIS DR. ABOUT A LUNG TRANSPLANT AND HE TOLD US THAT WE HAD TO GET HIM WELL ENOUGH FIRST, THEN HE WOULD HAVE TO BE EXCEPTED, THEN WOULD HAVE TO FIND A MATCH. I OFFERED A LUNG AND ONE OF MY DAD'S SISTERS OFFERED A LUNG IF EITHER WOULD MATCH BUT THEY DO NOT LIKE TO TAKE LIVE DONORS AND MY MOM SAID MY DAD WOULDN'T WANT ME TO DO THAT BUT I WOULD HAVE GIVEN HIM ANYTHING TO HAVE KEPT HIM ALIVE. BUT THE NEXT DAY THE DR. CAME BACK AND TOLD US THAT WE HAD GOTTEN AHEAD OF OURSELVES AND THAT WE WOULD HAVE TO GET HIM BETTER THEN DISCUSS LUNG TRANSPLANT. MY DAD ASK THE DR. 2 DAYS BEFORE HE DIED ABOUT A LUNG TRANSPLANT AND HE TOLD HIM AT THAT TIME HE DIDN'T HAVE THAT OPTION. HE DID NOT GIVE UP HOPE UNTIL THE DAY HE DIED.

Nanalu, doctors are the LAST place I would look for advice. My husband died and I never saw the pulmonoligst? and HE NEVER EVER contacted me. He gave us no hope and that's exactly what we got....I am soooo frustrated by this disease...his brother also has it. Wow, the govt needs to do something. I have you in my prayrs.