Jerry Genesio

I was diagnosed with IPF two years ago at age 81. My mother had the very same symptoms but her disease was never named. She was diagnosed with “lung problems – possibly lupus” at age 82 and lived to be 90. I am absolutely convinced IPF can be genetic.

My weight dropped quite rapidly from 205 pre-diagnosis to 180 today, 2.5 years after my diagnosis. I had dropped to 176 but for the past few weeks, I’ve been drinking an 8 oz container of Ensure with lunch. I like the taste and Ensure has several flavors including butter pecan, my favorite, and of course, chocolate (dark & milk), strawberry,…[Read more]

Sharon: I, too, have very painful cramps in my legs and feet, usually at night. They wake me up and force me to my feet for relief. Rubbing and standing on the cramped leg or foot helps a lot.

I hadn’t considered restless legs medication as a possible answer as Karen suggests, but for me, it definitely is not. I take 1.5 mg of Ropinirole by…[Read more]

LIMITING – BURDENSOME – CHALLENGING – COMPROMISING

My oximeter is usually at 91-92 but I don’t feel a lot of anxiety, probably because I’m 83 and have several other serious problems including heart disease and severe spinal stenosis.  My VA pulmonologist said oxygen isn’t an option until my lung capacity drops to 88%. Right now it’s at 90%.

I do hear chest rales but not all the time. And of…[Read more]

I was diagnosed with IPF 2 years ago and a month or 2 later I was taken to our local medical center with very high blood pressure. When they finally got my BP down, they determined that I had atrial fibrillation and that has been constant ever since. I was immediately put on Xarelto to protect me from clots, and haven’t had any emergencies since…[Read more]

If you’re a US military vet, you can get it through the nearest VA Hospital pharmacy. If it’s not military-service-connected, there’s an $8.00 co-pay.

I was diagnosed with IPF two years ago (Jan 2020) and was informed about both Esbriet and Ofev during my first visit with a pulmonologist. I was told Ofev was not an option because I’m on a blood thinner (Xarelto) but Esbriet was recommended. I was given literature and after reading about the side effects I informed my pulmonologist on my next…[Read more]

Dear Wendy, I have just returned from the X-ray department of our local military veterans’ medical clinic. This X-ray is to determine if the antibiotics I was given last week for pneumonia in my left lung have cleared the infection. I also have Familial Pulmonary Fibrosis diagnosed 2 years ago.

As fate would have it, an X-ray I had 2 weeks ago…[Read more]

Charlene, You’ve opened a topic that I’m finding difficult to deal with right now. My wife and I are both 83 and have shared household duties. However, the past few months have taken a toll on my physical strength and I see her gradually doing more as I do less, and I think that’s harder on me psychologically than it is on her physically. I am…[Read more]

Addie: I was diagnosed with IPF two years ago and I’m also wondering about the end stages. I have requested an appointment with a pulmonologist and will update this if I learn much new that might be helpful.
Jerry

Hello All: I’ve been reading everything on this page and I’m astonished by the similarities between my symptoms and those of others here. I’m 83 and was diagnosed with IPF in January 2020. As my mother had exactly the same symptoms between age 80 and her death at age 90 of other causes, I’m quite certain my PF is genetic; a cause now recognized by…[Read more]

Judy, I can relate to your situation. My wife and I are both 83. We were high school sweethearts in the 1950s but went separate ways. We both married others and raised families, and nearly eight years ago we reconnected. Our former spouses had died and we spent 18 months getting reacquainted, though clearly, we had held each other in our…[Read more]

I’m with you, Lawrence, 110%. I was diagnosed 2 years ago and I declined the Esbriet option due to potential side effects. I have another condition that requires several meds and I didn’t want to cause compatibility complications. I’m not eligible for Ofev. But, like you, I’ve enjoyed a full and very active life. I am now 83 and living very…[Read more]

I was diagnosed with IPF 2 years ago but have had shortness of breath for at least 5 or more years. I’ve also had PND for years which I believe to be primarily an allergy to a silver willow tree outside my front door. I first noticed the allergy very shortly after buying and moving into a single-family home in a retirement community. I had all the…[Read more]

Thanks! I said “at least 91”. How far beyond will depend on a few variables. Actually, a lot of variables. 😉

Yes, Sylvio, I have read those diagnosed with IPF have 3 to 5 years as well. But my mother was diagnosed at 80 and lived to be 90. I was diagnosed at 81 so I plan to live to at least 91. I’ll let you know. 😉

No physician in the U.S. is likely to prescribe this before trials warrant an FDA approval.

Charlene – I also use a prescription nasal spray (Ipratropium .06%) that dries my throat as well as my sinuses, but I have noticed more throat clearing lately. I was on a .03% formula but it stopped working and my VA physician increased it to .06%. I was diagnosed with IPF in January 2020.

Charlene: I often have a glass of red wine with dinner. Also, every weekend since the pandemic confined us to quarters just about one year ago,  my wife and I play Scrabble to entertain ourselves and usually have a vodka tonic or highball, but never more than one. I was diagnosed with IPF in January 2020, but I have never been on a prescribed…[Read more]