-
Phil Ryan replied to the topic Starting out with Esbriet in the forum Esbriet (Pirfenidone) 3 months, 1 week ago
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]
-
Phil Ryan replied to the topic Where do you live, receive care, and are you in a local support group? in the forum Polls & Quizzes 4 months, 1 week ago
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]
-
Phil Ryan replied to the topic New Zoom meeting – taking the bull by the horn in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 months, 1 week ago
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 replied to the topic Diet, alternative treatments/ healing in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 3 weeks ago
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]
-
Phil Ryan replied to the topic Everyday Challenges of Living with Pulmonary Fibrosis in the forum Living with Pulmonary Fibrosis: 50+ 6 months, 3 weeks ago
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]
-
Phil Ryan replied to the topic Is ipf genetic? in the forum Join the Discussion: Welcome to all PF/IPF Patients 8 months, 1 week ago
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 replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 8 months, 2 weeks ago
To tell the truth, I don’t remember her reasoning. I will send here another post
, asking why.
-
Phil Ryan replied to the topic Is My Disease Worsening? in the forum Living with Pulmonary Fibrosis: 50+ 8 months, 3 weeks ago
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 replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 9 months ago
I checked with my pulmonologist and she advised me not to start taking zinc supplements.
-
Phil Ryan replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 9 months ago
I sent a message asking about it to my pulmonary physician severaladays ago and have yet to hear back from her? Frustrating…
-
Phil Ryan replied to the topic Mental Health & Chronic Illness Advice in the forum Living with Pulmonary Fibrosis: 50+ 9 months, 2 weeks ago
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]
-
Phil Ryan replied to the topic Mental Health & Chronic Illness Advice in the forum Living with Pulmonary Fibrosis: 50+ 9 months, 3 weeks ago
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]
-
Phil Ryan replied to the topic Respiratory Therapy Programs in the forum Pulmonary Fibrosis Awareness & Advocacy 10 months, 1 week ago
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]
-
Phil Ryan replied to the topic Need to start all over in the forum Esbriet (Pirfenidone) 10 months, 1 week ago
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 replied to the topic IPF patient symptoms in the forum Join the Discussion: Welcome to all PF/IPF Patients 10 months, 2 weeks ago
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 replied to the topic Traveling long distances in the forum Join the Discussion: Welcome to all PF/IPF Patients 10 months, 2 weeks ago
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]
-
Phil Ryan replied to the topic Bridging the Emotional Gap Between Patients and Doctors in the forum Join the Discussion: Welcome to all PF/IPF Patients 11 months ago
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]
-
Phil Ryan replied to the topic Buying an Oxygen concentrator in the forum Diagnosis Information and General Questions 11 months, 2 weeks ago
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]
-
Phil Ryan replied to the topic Esbriet – Insurance approval in the forum Esbriet (Pirfenidone) 11 months, 2 weeks ago
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]
-
Phil Ryan replied to the topic Tyvaso for IPF in the forum Clinical Trials 1 year ago
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]
- Load More