Jim
Forum Replies Created
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- 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 . Definitely over priced! I liked the small tanks best using them in a small backpack, but I couldn’t fly with them.
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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 far. The meds have to be closely monitored and can be a lot to manage, but it is definitely worth it. Recovery is a slow process and I have some restrictions as to some things I can no longer do. Surgery is a huge decision and each person is different. I would do it again in a heartbeat. I still have to many things I want to see and do !
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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. -
Yes, I have been on OFEV almost 5 years.
150 mg twice a day
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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.
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<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>