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...
Hello, I am new to the Pulmonary Fibrosis discussion, but not to DS. My Dad was diagnosed with Ideopathic Pulmonary Fibrosis in 2005, but didn't really have any symptoms. Within the past year he has show progression. He has difficulty going up and down stairs. It isn't that he can't do them, he just has to stop to catch his breath. As of right now that is his only symptom. I have been reading all about this disease online and it is making me very nervous. It seems that it varies greatly from person tp person. Some progress quickly, some slowly. I just don't know what to do. I feel overwhelmed with the thought of losing him. He's only 61.
Reading the posts in this section brings me back to how I suffered with IPF. My first symptoms were in 1998. My Dr originally diagnosed me with seasonal asthma. My symptoms, which were mostly a severe cough, were only present in the winter. My Dr put me on prednisone for a couple of weeks and I seemed to get better. When the warmer weather rolled around, I was normal. He never took a chest film or HRCT which he should have. This went on for years but the symptoms ceased in the period of 2006-2009. Following that, it got worse. I went to an new pulmonologist who hinted "many people do well with lung transplants." I had it in my mind that it was going to go away as always. I really had no idea how serious my condition was until it REALLY started going downhill in Aug 2010.
What I learned is that IPF can plateau, some time for years, but when it get's bad, it can do so quickly. Hopefully your dad has followed up with a transplant physician and has been evaluated. Many eligible IPF patients die because they are not referred to a transplant program in a timely manner. I received my gift of life Jan, 2011. This coming weekend is my lung transplant program's annual beach picnic. I was very lucky to meet a great bunch of people in my community who had gone through what I was about to and supported me through a trying time. It would be great if your dad were able contact recipients in your area through a support group. Sounds like he is hooked up with a good Dr. Listen to him. Good luck and God Bless!