[Phil Ryan]

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 morning and 35 mg of senna at bedtime to help with constipation, but that’s about it.

On the plus side, I’ve been living with IPF for over 10 years now and am still feeling pretty healthy and able to go about my daily business.  That prediction of 3-5 years to live surely has to be amended.

[Phil Ryan]

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 therapy sessions twice a week, which I find quite helpful.   I’m surprised that they’re still using that 3-5 years timespan because from what I’ve read it doesn’t appear to be valid with current medications.

[Phil Ryan]

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 veries greatly).
I also have pulmonary hypertension, and am taking Tyvaso which is an inhalant, 4 times a day.

10 years ago when I was diagnosed they said I had about 3 – 5 years to live, which is the standard. So with the medications I’m on, I’ve lived far longer than predicted and am not slowing down. I’ve heard the same from others on this forum, so I can only highly recdommend that you get on a medication that works for you that your Dr is comfortable with.

[Phil Ryan]

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 diagnosed with atrial fibrillation of my heart. After getting my fluid levels/weight down, I went into surgery and my heart was shocked to get it back to normal. This was successful, and I’ve had absolutely no problems since. You might pursue potential heart issues with you dr.

[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 Pulmonary Hypertension, also with minimal side effects.

[Phil Ryan]

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 available.

Given our existing technology, I don’t see any reason that a support group has to be “local.” It’s easy enough to organize a Zoom meeting that could include members with like attributes or interests (i.e., over a certain age, male or female, those with certain underlying conditions, or just a mix). all it takes is someone to organize it…You?

[Phil Ryan]

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?

[Phil Ryan]

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 altogether and lost 20 pounds and feel 100% better.

Just as important is exercise. I’m lucky enough to be able to use a local hospital’s pulmonary therapy group which I attend twice/week for an hour apiece. Includes breathing and stretching exercises, upper and lower body strength training, and about a 1/2 hour on a treadmill/
step machine, etc. It really helps, and I highly recommend that or something similar if it’s available to you.

[Phil Ryan]

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 biggest daily hassle is the tubing for the oxygen, which seems to get in the way of everything. Lately, I’ve started using a walker, and it’s always seeming to get tangled in the wheels. Maybe that will improve with practice.

I live at sea level (San Francisco) and would like to visit my sister who lives in Nevada, but the elevation of her
town (5,000′) all but prevents that. This was not so much of an issue when Covid restrictions were in place, but now it’s more noticeable.

[Phil Ryan]

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.

[Phil Ryan]

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?

 

[Phil Ryan]

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

[Phil Ryan]

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 order, clean out the clutter to save someone else from doing it, buy something nice if you can afford it since you don’t have a lot more years to support yourself, etc.  Finally, look to your religion for solace and support.  (I was quite surprised that Noah Greenspan’s recent book does not once mention religion.)

[Phil Ryan]

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 pulled off the program because she was needed in the hospital’s Covid care.  I can only echo Greenspan’s comments.  I always felt 100% better after the therapy.  It involved breathing exercises, aerobics, stretching, some upper body strength training, and most important for me, a treadmill, since I was noting some weakening in my leg muscles.  I highly recommend such a program if one is available in your area.

[Phil Ryan]

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

[Phil Ryan]

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.

 

[Phil Ryan]

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 than ready to head back to sea level.   Also, if you’re thinking about a Europe trip don’t forget that there are cruise liners that regularly make the round trip; I think it’s about 5 days from NY to London, and it could be quite enjoyable.  We get too used to flying, and forget there are other ways of getting around.

[Phil Ryan]

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 insurance covers except for $2,000 annual copay.

There are reportedly ways to get assistance for payments, but have no info on that.

[Phil Ryan]

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

, asking why.

[Phil Ryan]

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

[Phil Ryan]

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 cleaned periodically and kept free of dust, dog hairs, etc.  If not, you’re just breathing that into your lungs.  Also the cannulas should be replaced regularly.

[Phil Ryan]

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 with him, he listened for almost 2 hours, something I’d never encountered.  Most recently, when I thought my IPF was seriously deteriorating, and I thought my end was near, he did blood work that showed I actually had anemia, causing my hospitalization for a week with blood transfusions, etc.  I had a full recovery and am going stronger than ever.  My pulmonary Drs are also good, and I can’t complain.  Sometimes I’m a bit irked by support staff, but I guess that comes with the territory, or I blame myself for getting grouchy in my old age.

[Phil Ryan]

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 more acceptable.

[Phil Ryan]

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 pharmacy here in San Francisco.  Likewise I take Tyvaso for Pulmonary Hypertension, and had no problem getting approval, notwithstanding that this is an incredibly expensive drug (over $30,000 a month charged to my insurance company, with a $2,000 annual copay by me).