Weight Loss / Gain

[Michelle]

For those of you that wrote about end-stage well… when I was diagnosed in 2014 SEVERAL different medical facilities said I was at end-stage pulmonary fibrosis, interstitial lung disease have 1.5 yrs left to start preparing. Well I’m still here my pulse ox is 10 points higher I attribute to exercise, diet green tea extract capsules.   Drs do not know  & they should not be giving you end-of-life dates that messed me up so bad.

I’m still not on oxygen. mind you, I can’t run a marathon but never could lol.

God bless. Live everyday stop thinking about dying I lost 2 great yrs w my daughter being scared of hoping out etc… that I’d get worse & die on her but how did locking myself in my home help her???

[Michelle]

<li style=”text-align: left;”>InFor those of you that wrote about end stage well… when I was diagnosed 2014 SEVERAL different medical facilities sId I was T end stage pulmonary fibrosis, interstitial lung disease & have 1.5 yrs left & to start preparing . Well I’m still here my pulse ox is q0 points higher I attribute to exercise, diet & green tea extract capsules

Drs do not know  & they should not be giving you end of life dates thatessed me up so bad.

I’m still not on oxygen mind you I can’t run a marathon but never could lol.

God bless. Live everyday stop thinking about dying I lost 2 great yrs w my daughter being scared of hoping out etc… that I’d get worse & die on her but how did locking myself in my home help her???

[Russell Jalbert]

I too lost over 40 pounds, but it wasn’t (and isn’t) easy. I truth, part of my success wasn’t because of my new dietary plans…it was due to OFEV. That drug was, for me, a GI catastrophe. After a year and a half, I had to give it up and went to Esbriet and stomach returned to normal, and I got my appetite back. Which means I am dieting again to hit the transplants team target BMI. The irony of this isn’t lost on me 🙂

[tonybishop]

I have to have the odd day free of Ofef when the stomach and daiareah gets bad. I also find that  a loperimide capsule helps greatly at onset.

Tony Bishop.  Canterbury, New Zealand.

[DocHollywood]

I am 67 years old, diagnosed when 62. I initially resolved myself to not have transplant, and just let the inevitable outcome take it’s course.

Idecided a year and a half ago to pursue transplant. Since first diagnosedc5 years ago I have taken ofev and done pulmonary rehab. I don’t typically use 02 at rest or just when puttering around the house. But when active, like exercising at rehab going to appointments and shopping I use 02, and am up to 5 L/M nc.

I was pretty obese, at one point 330#(5’10”) before diagnosed. Lost 30# with diet and exercise. Once diagnosed and beginning ofev I lost another 30# from frequent diarrhea and intermittent vomiting. I became more accustomed to the ofev an plateaued at 270-275#. Last August I began tirzepatide, an injectable GLP-1 drug for weight loss and am now weighing 193-198#. In addition to the meds, I followed a very strict low carbohydrate diet and doubled down on my exercise regimen.

I’ve met the doctors goals of a BMI < 30 to qualify for transplant. I’ve had a years worth of testing and I’m waiting to hear back from the transplant folks. The VA is managing my transplant efforts, but the surgery will be at a civilian hospital. I’ve always had exceptional, compassionate and professional health care from the VA and the civilian doctors they send me to, but there doesn’t seem to be any sense of urgency at this point to get back to me. While my PF is obviously progressive, and I am much more limited in my activity compared to 5 years ago, when diagnosed, I have been blessed to have never been ill enough to be hospitalized because of it. I survived a 5 day bout of covid caring for myself at home and was again blessed wit not being severely ill.