Jim replied to the topic Comparing portable oxygen concentrators in the forum Living with Pulmonary Fibrosis: 50+ 2 months ago
- I want to comment on POC’s
- i have used the respironics simpli go. —it was heavy with short battery life.
- I also used the Inogenone g5. It works ok if you you only on 2-3 liters. My pulmonologist said 6 liter on the Inogen is only equivalent to 3 liters on a tank, because of being a pulse machine. It works ok if you’re using 2-3 . Defi…
Jim replied to the topic The Harsh Realities of Lung Transplantation in the forum Pre/Post Lung Transplant 6 months ago
Hi, I wanted to comment on lung transplant. I was diagnosed in 2017 with IPF. I took OFEV for 5 years, I was listed this year for transplant. I am now 4 months post double lung transplant it was well worth it for me, I was on up to 8 liters oxygen before surgery. I came home with no need of supplemental oxygen. I have not had any problems so fa…[Read more]
Jim replied to the topic How are long-term (4+ years) OFEV users doing? in the forum Ofev (Nintedanib) 1 year, 2 months ago
I was diagnosed with IPF May of 2017.
I started 150 mg of OFEV June of 2017. My numbers have declined slightly, but no where near transplant ready numbers. My next Cleveland Clinic follow up is in June and this will be 5 years on OFEV.
Jim replied to the topic Do you take OFEV? Take our poll! in the forum Polls & Quizzes 1 year, 3 months ago
Yes, I have been on OFEV almost 5 years.
150 mg twice a day
Jim replied to the topic Respiratory Therapy Programs in the forum Pulmonary Fibrosis Awareness & Advocacy 1 year, 3 months ago
I was diagnosed with IPF almost 5 years ago.
I went through pulmonary rehab, it helped me tremendously.
I exercise at least 1 hr every day, exercise and staying active helps. I have been on oxygen for couple years now. Hope this helps, good luck.
Jim replied to the topic WEI Institute Natural Care of Chronic Lung Diseases in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 7 months ago
<p style=”text-align: center;”>I tried WEI for a 3 month trial. It is very expensive and my pulmonary numbers continued to decline while taking it. Hope this helps.</p>
Jim became a registered member 1 year, 7 months ago
Welcome to the PF forums Jim, thanks for joining us!