I want to add to my original response. Temple in Philadelphia accepts riskier patients for transplant. They actually state this on their website. They have the highest volume of transplants in the US and greater than average survival rates at 1, 3, and 5 years. I appreciate the above information about location and temporary relocation. …

Read more

Yes. My cough is worse in the late afternoon.

A pulmonologist at the Mayo Clinic prescribed pregabalin (Lyrica), which is commonly used for nerve-related pain. I take 75 mg twice a day. It has done wonders for me. I still cough when physically active and often when I talk, but the constant, untriggered cough is much better.

Best wishes to…

Read more

Hello,

My physicians encouraged me to get a transplant evaluation. I was evaluated at the University of Maryland in the summer of 2023. I was 76 at the time. I had lost 35 pounds since my diagnosis in September 2020. The outcome of the evaluation was that because of my weight (100 lbs. 5’6″) and also my age, I was ineligible – at least at…

Read more

Sorry – I meant to say that they said that I do NOT have IPF. Judy

I was diagnosed in 2020 and went to the Mayo Clinic in 2021 for a second opinion. I am very glad that I did because they determined that I do have IPF although I have another ILD. There was minimal testing ( PFTs, CT, echocardiogram) which was completed in one day. I live in Maryland and they appreciated that I could not stay in Rochester…

Read more

I have a hiatal hernia diagnosed from a CT scan. My symptoms are a sensitive gag reflex with frequent vomiting especially after drinking a large amount of liquid or taking multiple pills at once. I fill full after eating a small amount. I have nausea and lack of appetite but that may be due to OFEV. I do not have chest tightness or pain…

Read more

Try The Assistance Fund (TAF)

Home

Phone: (855) 845-3663
Monday – Friday, 8 a.m. – 7 p.m. ET

My hiatal hernia was found by CT during my work-up for PF. I started OFEV in September 2020. Within weeks I developed the usual side effects. About 3 months after starting OFEV, I developed abdominal pain. Liver function tests, gallbladder studies, EGD, and upper GI series were negative. I thought the pain might be due to the hiatal hernia… Read more

Hello everyone,
Have any of you who have taken prednisone (for any duration, dose or method) shown improvement on your PFTs in any of the measures? Thank you for sharing your experiences. I have so much regard for all of you!

I have IPF and received the Pfizer vaccine in May and the booster in August. My husband, who does not have IPF and is not immunocompromised, received the vaccine in May and the booster in October. About nine days ago, he developed a dry persistent cough which lasted one day. Three days later I developed the cough, fever, aches, and fatigue. … Read more

I feel badly for you, Mark.  I am not a physician and cannot even suggest a diagnosis, but these are my thoughts. Have you been worked-up for auto-immune disorders (lupus, RA, etc)?  Does the NHS cover genetic testing?  As you know, you need to get the GERD under control.  Elevate the head of your bed with a wedge or blocks under the bed’s… Read more