Phil Ryan

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 for…[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 it’s…[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 alcohol…[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 help.

The…[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 cl…[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 ord…[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 pu…[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 tha…[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 wit…[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 be…[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 p…[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 my…[Read more]