COPD & Emphysema Support Group
COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...
this is a whole new world for me....
had a CT and some other tests done recently. as soon as my doctor saw the results, he had his nurse make an appt with a pulmonary specialist and had her call me. saw the specialist and he hemmed and hawed and asked what my doctor said. then he hemmed and hawed and said i would need to get an echocardiogram done and that he needed to see the CT DVD. he told me that it appeared like i have IPF. had to google that. hmmm....maybe this isn't the group that i am looking for.....i get the impression that COPD is an affliction that someone can live for a number of years.....from what i am able to determine....people with IPF last a couple of years once they have been diagnosed....anyone here can tell me otherwise, i would appreciate it......i don't go back to see the pulmonary specialist for a couple of months.
had a CT and some other tests done recently. as soon as my doctor saw the results, he had his nurse make an appt with a pulmonary specialist and had her call me. saw the specialist and he hemmed and hawed and asked what my doctor said. then he hemmed and hawed and said i would need to get an echocardiogram done and that he needed to see the CT DVD. he told me that it appeared like i have IPF. had to google that. hmmm....maybe this isn't the group that i am looking for.....i get the impression that COPD is an affliction that someone can live for a number of years.....from what i am able to determine....people with IPF last a couple of years once they have been diagnosed....anyone here can tell me otherwise, i would appreciate it......i don't go back to see the pulmonary specialist for a couple of months.
I did see the following links for some groups that might have more specific info too for you if you haven't already discovered them.. Hugs and again, welcome
Pulmonary Fibrosis Foundation: www.pulmonaryfibrosis.org/
Coalition for Pulmonary Fibrosis: www.coalitionforpf.org/
and this link for checking clinical trials and research facilities for IPF
https://www.ipfnet.org/
So sorry for your recent diagnosis, Idiopathic Pulmonary Fibrosis IPF.
There is a Support Group on DS for Pulmonary Fibrosis:
http://www.dailystrength.org/c/Pulmonary-Fibrosis/support-group
Cardiac checks seems to be a routine thing with most lung problems.
About the IPF, you may find this link helpful also:
http://www.nhlbi.nih.gov/health/health-topics/topics/ipf/
Good wishes for excellent treatment for you.
ironically, a person who used to work in the same department that i do, was diagnosed a year ago with IPF. he is at the end stage and is not expected to live much longer. he is currently being assessed for a heart surgery in combination with lung transplant. if, and i repeat IF, he gets approval, they expect a full recovery. i hope for his sake it happens and even more for my sake. i hopefully can gain from him what i need in order to do the same...
" IPF is typically progressive and leads to significant disability. The median survival is 2 to 5 years from the time of diagnosis. Medical therapy is ineffective in the treatment of IPF...."
an excerpt from the Orphanet Journal of Rare Diseases. thank you all once again....
I do hope all goes well for you and your colleague / friend, IPF is not nice, hopefully when you see the pulmonary specialist things will be explained and you will be able to see a way forward.
Do keep in touch and let us know how you and your friend get on. Sending thoughts for you both.
Peta