Heather

I am so grateful for this forum and all of these posts. We learned yesterday that my husband’s (48, diagnosed in March 2020) IPF has gotten worse and his pulmonologist has suggested he start the process of getting on the transplant list. While I knew this would happen eventually, I honestly thought there would be more time. I had it in my head…[Read more]

Hi Terry – What jumped out to me was that your doctor doesn’t seem to be giving you the information you want/need to feel informed about your condition. I would encourage you to have a conversation with your doctor about that. Tell him/her you want to learn more and what level of information you need. If nothing changes perhaps you could find…[Read more]

My husband is the patient and his cough started a year before his PF diagnosis. It was more of a tickle ana alight throat clearing but it was constant. Now, 2 years later it’s a constant cough. Gaba didn’t help him but he is now taking an off-label anti-depressant (A tri-cyclide but I can’t recall the name.) While it helps, he still coughs all day…[Read more]

Hi James – I’m on the forum here as a spouse of an IPF patient. I have found this to be immensely helpful. As for getting a second opinion, I am on the east coast so can’t really help with anything in-person, but Dr. Cheilonda Johnson at UPenn is amazing and maybe she will do a remote…[Read more]

Hello Vishal – Thank you for sharing this with us. I’m wishing you, your dad, and entire family well during this difficult time.

Chiming in on the use of gabapentin. My husband was diagnosed a year ago (at 45), and several months ago he tried gaba to control his cough which has gotten progressively worse. He didn’t feel it was helping, and because he’s not big on taking medications (he takes a lot of pills now- Esbriet, the GERD one, etc.), he tapered off. Now that he’s…[Read more]

This is timely as my husband – diagnosed in March 2020 – and I haven’t told anyone yet about his diagnosis. We need to though. For one thing, he was diagnosed with a genetic condition called short telomere syndrome which is likely the root cause of his PF (though the docs still call it IPF). We need to tell his sister (who has children) about the…[Read more]

Thanks for this information. I am looking into it for my husband. His cough has gotten so bad that he has rib pain. Thank you all for sharing.

I’d like to help my husband manage his “dry cough” — it was the first indicator that something was wrong. It’s gotten so bad that his co-workers ask/comment on it and he’s not comfortable telling them that he has IPF. I want him to be able to have meetings and phone calls without the persistent cough. I really appreciate all the tips and will be…[Read more]

Hi All,

I’m here because my husband was diagnosed with IPF in March 2020, at the age of 45. I’m learning from everyone here. He went on Ofev in March, and it made it him so ill he had to stop taking it (dropped 10 pounds off his already lean frame.)  During that time he had no appetite and developed an aversion to eggs. We used to eat eggs at…[Read more]