I use a Bench in the shower. Before you get in the shower turn your oxygen up. Get in shower and wet yourself then shampoo hair with cannula in giving you air. Soap up body and finally face with cannula out. Rinse face first then put cannula in and rinse your hair and body while seated . Stand with grab bar and rinse the rest. Dry while…

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I’m 78 and diagnosed April 2020 with IPF. No symptoms til about 18 months ago and now weight loss and low energy. I went to Respiratory Rehab 2 yrs ago and enjoyed all 18 sessions lasting 90-120 min. The only point that I want to make is that it’s all about how you feel physically. It was easy when I went but now it’d be tougher. I’m lazy…

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I am a Veteran, served in the USAF 1965-69 with a year in Vietnam 1966-67. I was a Crew Chief on Fighter Jets. I have IPF and the VA linked it to Jet Engine exhaust. The Pact Act was part of the Inflation Reduction Act which gave benefits to those exposed to burn pits and other toxins . I am also enrolled in the Agent Orange Registry at the…

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Sam thank you for your diligent and thorough replies . My civilian Pulmonologist recommended me for Jascayd and I’m waiting to hear about availability and cost . I tried OFEV but couldn’t tolerate it. I’m 78 and was diagnosed in April 2020. I’m a Vietnam Vet with my IPF perhaps linked to Jet Engine exhaust and or Agent Orange while in…

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Hi Rob, I am 78 and was diagnosed with IPF April 2020. I was symptom free until last year. I tried Perfenidone and OFEV but both gave me terrible diarrhea and nausea. I gave up the meds after a month of trying. I also went to 2 different Respiratory Rehab programs, one with the VA and one with my health insurance (18 sessions of 90 min). I’ve…

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Hi David, I was diagnosed a little over 5 yrs ago. I don’t take meds and don’t use O2 much . My IPF kicked in bad since last December. I’ve lost 40 lbs and have no energy and simple tasks like taking a shower kills me with low blood oxygen and high heart rate on the oximeter. I use the VA and a civilian pulmonologist. No complaints on…

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John, I was exactly like you not wanting to be on oxygen. I was diagnosed 6 yrs ago and I’m 78. Since Christmas (12/24) I noticed I had felt more SOB. I have an Oxygenator next to my recliner where I watch TV or read . I put the cannula on and relax giving my lungs and heart a break. I also have a portable which I took on my flight from Ca. to …

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I am a 78 yr old diagnosed 5 yrs ago with IPF. I enrolled in Pulmonary Rehab in August 2024. It consisted of 2 sessions weekly for 9 weeks (90 – 120 min each) . At first I thought it was unnecessary since I was fairly active even bowling . However one year later I am in bad shape and can hardly stand long. I believe my Dr will recommend…

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Well Buck, kudos to you for sharing . I was diagnosed with IPF in early 2020 and had no symptoms till last year .Ive lost 40 lbs off my normal 160 lbs frame. I eat a 10 mg gummy around noon most days . It does help me feel a lot more relaxed and even somewhat cheery. I live in California where it’s legal so I go on line, order it and a driver…

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I brought a portable oxygenator but didn’t use it it .

Thomas, I’m in your boat . I’ll be 78 tomorrow and was diagnosed with IPF in April 2020. I tried OFEV and Perfenidone with varying dosages but side effects were terrible. My attitude is to “go out” comfortably. I’m on no meds and use an oxygenator for an hour or so while watching TV. I’ve lost 30 lbs recently and am trying to stave off this…

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I fought giving in to IPF . I’m 78 and was diagnosed 5 yrs ago. I was “normal” till this past Christmas. So to spare you the bed chart, I’ve had to adjust . What I mean by adjust is, adjust your head, your “new normal”. An example is, I traveled recently to Ct. with connections in Chicago. I checked my one rollaway which I never did. I rode…

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Ric, the VA sent me to several 3rd party Drs. to assess my IPF I don’t know exactly how they determined my disability but being a Crew Chief certainly was enough . The PACT Act which passed as part of the Inflation Reduction Act allowed Veterans exposed to toxic chemicals to apply. See ur Veterans Service Officer, mine helped me

I’m with you Fred. I’m 78 and was diagnosed in April 2020. I tried OFEV but couldn’t tolerate the side effects . My sons know what I’m dealing with when I said that I’m in the fight of my life . However one son said “Dad, we know who the eventual winner is…the only question is …how long is the fight?” Truer words were never spoken. Telling…

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So, if I’ve noticed one recurring theme in reading these stories and it is that the journey is different of course but the storyline is similar…how we live with IPF. I replied earlier that I will be 78 next month and was diagnosed 5 yrs ago. I’m a Vietnam Veteran and the VA links it to Jet Engine exhaust from my 4 yrs (65-69) as a Crew…

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Well folks, thx for sharing. I’ll be 78 next month and was diagnosed with IPF in April 2020. I am a Vietnam Veteran and the VA has said that it’s due to exposure to Jet Engine exhaust from 4yrs in the USAF as a Crew Chief on a Fighter Jet. It also can be traced to Agent Orange exposure in Vietnam during my year there 1966-67. I’ve tried…

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Elijah, sounds like you are making great progress in handling IPF. I’m 78 next month and was diagnosed in April 2020. I have difficulty going up stairs and not much energy. I tried OFEV last fall at various doses but it made me very nauseous so I stopped after a few weeks. How old are you when were you diagnosed? I’m interested in your…

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I was diagnosed with IPF in April 2020. I will be 78 next month. I am on no meds having tried both Perfinedone and Ofev including lower dosages which still had bad side effects. I know that I don’t have a firewall to slow the spread but have chosen to have a better quality of life than being on the toilet or in bed. This is an individual…

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I recently finished Respiratory Rehab (RR) which was both comprehensive and enjoyable. It was 18 classes lasting 90 minutes each over 9 weeks . The enjoyable part was everyone talked frankly about their issues . The comprehensive parts were on breathing better and living better. Yes go to this RR and learn .

VA offered Pirfenidone for my IPF. My civilian Pulmonologist says don’t take it due to its adverse reaction to sun exposure . I live in Southern California and easily sunburn anyway. It seems everywhere I turn it’s either, bad side effects, road blocks, high co pay (OFEV through United Healthcare had a $2980 co pay) or conflicting treatments.…

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Hello All, with so much unknown about IPF and everyone reacting differently it’s difficult to determine how to proceed with treatment. I agree that too much energy or emphasis on the cause isn’t helpful for those of us fighting IPF. I worked in a dry cleaner after school as a teenager. I also smoked for 20 years. I was in the Air Force for 4…

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How old are you and what was the process to get a lung transplant ? I’m a 77 yr old man and live in Southern California with my wife and with our grown sons and grandkids in town. I was diagnosed with IPF in April 2020 . Pulmonologist wants me to take OFEV. My IPF is service connected so no expense . Please share your journey to a lung…

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