I’ve found that if your concentrator is on a rug insteade of bare wood it helps. I’ve also located mine about 25t feet away in the bathroom, which is midway through the house. That way I can use the same concentrator as I walk throughout the house.

I’m 77 and have been taking Esbriet (801mg 3Xday) for several years now and have no noticeable side effects.  (I also use Tyvaso for Pulmonary Hypertension.)

I always make a point of taking it with meals, although my breakfasts are not particularly heavy (a couple of croissants and a cup of fruit and OJ).  I do take a couple of prunes each… Read more

I’m 77 and was diagnosed with IPS (as well as Pulmonary Hypertension) over 11 years ago, and like most others was given the potential lifespan of 3-5 years.  I’m still going strong, possibly as a result of medications (Esbriet and Tyvaso).  I’m on supplementary oxygen, but am leading a lifestyle that is pretty active, and going to pulmonary… Read more

It’s disturbing to heara that you were notified of your condition over the phone by a PA with no more support than that. It’s not clear the level of care your hospital or physcian network provides, but it does like a bit short. Both OFev and Esbriet have proven clinical effectiveness, their main drawback is side effects in some people (it… Read more

I have had pulmonary fibrosis and IPF for over 10 years now and am using Esbriet and Tyvaso with good results. However, about 6 months ago I found I absolutely could not sleep. I’d just lay wide awake, looking at the ceiling all night despite trying everything (sitting up, sleeping pills, etc.). Finally, I was sent to the hospital and… Read more

I am 76 and have been taking Esbriet for over 2 years. I never had severe side effects, but now am experience very little. I sleep well, have good appetite, and have had no liver deterioration. Likewise, no coughing, or sputum. I do feel a bit fatigued for about 30 minutes after first taking it, but this is minor. I am also taking Tyvaso… Read more

I’m 76 and have had both IPF and pulmonary fibrosis for over 2 years. I live in San Francisco and have an excellent medical team. I do not belong to any support group, but I do participate in group therapy twice a week at a local hospital, with significant positive results. I believe that therapy is more important that any support group if… Read more

this thread was posted on 11/14. Wesley’s post says the Zoom meeting “will be tomorrow at GMT 5:00 PM,” but does not give a date. Can you please clarify the date of the meeting?

I’ve had IPF and Pulmonary Hypertension for over 2 years, and am on Esbriet and Tyvaso with minimal side effects. Diet is important, but I think emphasis on keeeping it well balanced, minimizing rad or processed meats, and keeping alcohol at a minimum is most essential. Lose weight, if you are overweight (i’m 76). I just quite… Read more

I’ve been diagnosed for 2-3 years, and am 76. I’ve moved from not needing supplemental oxygen to using it 24/7, now at level 3 or 4. Overall, I’m coping fairly well, and use a portable generator (Inogen) if I have to go out. I go to a pulmonary therapy session at a local hospital twice a week, for a hour apiece that I find of great… Read more

When I was first diagnosed with IPF I volunteered to participate in a study that was being conducted out of Colorado. However, I was disqualified after my sister (my only close relative still living) declined to participate. Turns out, they were studying the genetic link for IPF.

To tell the truth, I don’t remember her reasoning.  I will send here another post

, asking why.

I’ve had IPF for about 2 years now.  It seems to have progressed fairly rapidly in the last month, with my having to use higher doses of supplemental oxygen.  Also, in the last week I have not been able to sleep.  Just lying awake at night.  Has anyone else experienced sleeplessness?

 

I checked with my pulmonologist and she advised me not to start taking zinc supplements.

I sent a message asking about it to my pulmonary physician severaladays ago and have yet to hear back from her? Frustrating…

I note that Noah’s new book seems to have no problem discussing yoga and meditation.  So why the concern about religion is still beyond me.  On another note, I missed any discussion on healthful procedures on supplemental oxygen.  When I received by first concentrator, the delivery person made no mention that (1) the intake areas should be… Read more

Surprisingly, I have never had any mental health issues as a result of IPF.  Since I’m in the last years of my life at 76, I may have had more difficulty with it if I were younger.  We’re all mortal, even though some don’t seem willing to accept that.  IPF just gave me more clarity about how much longer I have.  That means, get your affairs in… Read more

I’m 76 and have been diagnosed with IPF and pulmonary hypertension at least two years ago.  I live in San Francisco and have participated in a pulmonary therapy session twice a week for an hour at St Francis hospital.  It was the best thing I could have done at the time.  It was run by two trained pulmonary nurses, although one was pretty much… Read more

I just ordered a now monthly supply and the pharmacist of the UCSF specialty pharmacy mentioned that the generic will be out very shortly.

I’ve been diagnosed with IPF and Pulmonary Hypertension for at least the last two years.  I also have a thick mucus cough, with usually must pronounced after my doses of Esbriet and Tyvaso.  Never did have a dry cough.

 

It’s interesting to hear from the folks in Reno area.  I live in San Francisco and have been on supplemental oxygen for over a year.  My sister lives in Carson City (elevation about 5,000′) and when I last visited her (pre-Covid) and drove over the Sierras I really felt the difference in breathing.   A couple days in Carson City and I was more… Read more

I’m fortunate to be under the care of Drs at UCSF, the major medical provider in San Francisco, with a national A+ reputation.  I have three doctors: my PCP who specialized in Geriatrics (I’m 76), one for IPF and one for Pulmonary Hypertension.  I will have to say that my PCP is perhaps the best I’ve had in my life.   During my initial meeting… Read more

When I first got my non-portable concentrator, I was also bothered by the noise (it was on a wood floor).  Since then I have moved to a carpeted apartment and the noise is not now an issue.  I still hear it, but it’s more “white noise.”  So, as someone previously suggested to me, buy a small carpet to put your concentrator on, and the noise may… Read more

I have UnitedHealthcare and Medicare coverage, and my Dr had no problem getting approval (his staff highly recommended Esbriet).  I did have monthly liver checks since my liver was already somewhat compromised because of my drinking, but there was no side effects noted because of my taking of Esbriet.  I get it through the UCSF specialty… Read more

I have both PAH and IPF and am on Esbriet and Tyvaso.  Both for a little over 2 years. I have no material side affects, and both seem to be slowing the deterioration; however, my supplemental oxygen needs seem to be climbing steadily.  I take 12 puffs of Tyvaso per session.  I will underline that Tyvaso is extremely expensive although luckily… Read more