Pulmonary Fibrosis Support Group
Diffuse parenchymal lung disease (DPLD), also known as interstitial lung disease, refers to a group of lung diseases, affecting the alveolar epithelium, pulmonary capillary endothelium, basement membrane, perivascular and perilymphatic tissues. The term DPLD is used to distinguish these diseases from obstructive airways diseases. Most types of DPLD involve fibrosis, but...
i have IPF. when diagnosed, the doctor first told me that i had IPF. then he told me there was nothing that could be done. then he told me that i probably had less than two years left. great bedside manner.
i went home and spent a lot of time on the internet. first searching about IPF. then treatments. then went on to research everything i could find. i found out that there were and are a lot of drug trials ongoing to find something that can either halt the progress of IPF, or at least stablize, or to ease the symptoms, especially towards the end.
i tried to get into perfinedone trials mainly because this drug has been studied for over 14 years in America, and is approved in almost every country except here. it has shown good results in improving quality of life for PF patients. unfortunately, i was rejected for the last trial.
then i came across Fibrogen. it is showing early results in not only halting the progress, but improving quality of life. it is early on in the trials. this is the second stage. if it helps me, it will be sometime before noticing. but the more important thing at this point is that i did not show any signs of reaction or side effects at time of infusion or the following days.
i am hopeful. i write this in hopes that it may give ideas or hope for others who are either going through this or have family members who have been diagnosed. the point being is to not give up. do research. some doctors and clinics will be helpful, and other won't. but don't take no for an answer. keep looking....
i went home and spent a lot of time on the internet. first searching about IPF. then treatments. then went on to research everything i could find. i found out that there were and are a lot of drug trials ongoing to find something that can either halt the progress of IPF, or at least stablize, or to ease the symptoms, especially towards the end.
i tried to get into perfinedone trials mainly because this drug has been studied for over 14 years in America, and is approved in almost every country except here. it has shown good results in improving quality of life for PF patients. unfortunately, i was rejected for the last trial.
then i came across Fibrogen. it is showing early results in not only halting the progress, but improving quality of life. it is early on in the trials. this is the second stage. if it helps me, it will be sometime before noticing. but the more important thing at this point is that i did not show any signs of reaction or side effects at time of infusion or the following days.
i am hopeful. i write this in hopes that it may give ideas or hope for others who are either going through this or have family members who have been diagnosed. the point being is to not give up. do research. some doctors and clinics will be helpful, and other won't. but don't take no for an answer. keep looking....
my point in the topic was to encourage everyone to not give up, but to search out for answers.....that there is a large amount of resources and no one doctor has the copyright on all the information....keep looking....keep hoping....keep planning.....