kathleen-kaufman
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This may not be helpful, but I am the wife of a man who has IPF, & I had 60 hours of treatments over 30 days in a hyperbaric chamber in Los Angeles. The reason I had it is because of problems with skin healing after bilateral mastectomies, so it didn’t have anything to do with lungs. But what I can say is that it did nothing for me- it didn’t help at all with skin healing. As for any kind of a general feeling of “well-being” during or after the treatments, I had none. Really, it was a waste of time for me, but of course that doesn’t mean it would be a waste for someone with IPF.
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I spent 60 hours over 30 days in a hyperbaric chamber after the surgeon who did my mastectomies (after breast cancer) cut the skin too thinly, & there wasn’t enough blood supply to keep the skin alive & suture it back together. I can tell you it wouldn’t be something I’d look forward to again! You have to only wear their garments, no make-up or hair products, no jewelry, & you cannot take anything in the chamber. Not even a hard copy book. It’s high pressure, high oxygen (very flammable), & they’re concerned about any spark that would blow the whole place up. The only thing you could do is watch a TV that was outside the chamber, & only the technologist could change the channel or volume. For me, it did nothing. It didn’t fix the skin not healing problem, nor did it make me feel any smarter (some say it’s good for the brain)! I ended up having to have a L-D flap of skin from my back brought under my arm to cover that “breast.” So that’s my experience, although it obviously didn’t have anything to do with PF. I just thought you might be interested in hearing what the experience is like.
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My husband, who has IPF, & I both got Covid in December 2020, before vaccinations were available. We were very sick, & got monoclonal antibodies, which is why I think he didn’t end up in the hospital. Unfortunately, my husband also got a rare pneumonia called Organizing Pneumonia. His lung disease doctor said this was considered an exacerbation. He took 40 mg Prednisone for about 6 weeks, & did get better. His last pulmonary function test showed he’s stable, & that’s the best we can hope for we’re told. He gets another CT scan in Sept. But my point here is that one can survive Covid with IPF.
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I’m fairly certain Esbriet is Medicare approved, and some insurance companies have a policy that they’ll approve what Medicare approves. I’d certainly use that as an argument.
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My husband was diagnosed with IPF in Sept 2020, & was started on Esbriet. In late Dec 2020 he was positive for Covid-19, & got monoclonal antibodies, which I suspect kept him out of the hospital. But as a result of the Covid, he got another very rare disease, Organizing Pneumonia. The pneumonia was so bad they couldn’t even see the IPF on a CT scan- they only saw the pneumonia. He was on a high dose of Prednisone for about 6 weeks. The last HRCT scan a few weeks ago showed the pneumonia was gone, but it did leave some additional scarring (obviously just what he doesn’t need!). While the IPF looks about the same on the CT scan, his pulmonary function tests continue to go a little down every time he has them- a bit depressing.
Question for the group- he has an unpleasant metal/coppery taste in his mouth, and nothing tastes good to him. Foods that he used to really enjoy now taste bad to him, & there’s just nothing he eats that tastes good. Has anyone else had that happen? -
You asked about those having IPF & COVID. My husband was diagnosed with IPF about a year ago. He got COVID at the end of December, & got monoclonal antibodies. But alas, he also got Organizing Pneumonia from COVID. The lung inflammation on the CT scan was so bad that they couldn’t even see the fibrosis to see whether it’s gotten any worse. He’s taking a large dose of Prednisone, & in 3 weeks will have another CT scan. His pulmonary function tests aren’t looking good- down 10-15% compared to pre-COVID. We had been scared about him getting COVID, & had been very careful, but he still got it. He takes Esbriet, & got his first Pfizer vaccination dose about a week ago. So far, he’s not on oxygen.
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Just a comment re lung transplant. My husband had renal cancer in 1978. They removed the kidney, & he’s had no problems since then. We met with a lung transplant physician, & he said that the drugs one has to take after having a transplant are very hard on the kidneys, & he could guarantee that within a year he’d be on dialysis. So that eliminated a lung transplant as an option for us.