Cynthia

I haven’t even started meds yet, but I do see my interest in food dying. Like Robert, I used to love to eat, cook and go out to all kinds of restaurants. Funny that you mention a lobster roll, Robert. That’s the one thing I was thinking might appeal to me right now. I guess we’re true New Englanders.

Thanks, Robert. I will talk with my pulmonologist about the statin. It looks like Esbriet is the IPF drug he wants to put me on, but I think the team working on my case, which includes a rheumatologist,  is still debating whether I have IPF or an autoimmune issue. The good news is that Esbriet has been shown to help even if it’s an autoimmune disorder.

I’m going to start the pre-evaluation process at Mass General in Boston soon. I’m pretty sure the Cleveland Clinic does transplants on patients in their 70s. That’s not too far from you, is it?

@mark-koziol How do you feel after after you recover from the operation? Is it the way we felt before the onset of the disease? Do you have the energy you once had? What are the chances of the underlying causes of the IPF/PF scarring the new lung?

Did you have to stop taking the drugs you had been taking, such as Esbriet or Ofev?

It’s heartbreaking to think of a child dealing with this disease. Do they think he’ll be a good candidate for a lung transplant? I do hope he finds ways he can enjoy the summer.

My doctor says the efficacy of Ofev and Esbriet are the same. He’s starting me on Esbriet. I’m glad to hear you tolerated that well.

Hi Charlene. Thanks so much for that information. I worried about the weight of the Simply Go model you have but the smaller unit doesn’t have continuous flow for sleeping, and until I get much worse I’d like to rely on my POC for that when I’m traveling. But that’s good to know about bringing my prescription with me and renting tanks if I’m…[Read more]

Thanks, Steve. I’ve been reading what you’ve said about supplements, herbs and laser therapies on other threads. It’s something I do want to investigate. When the doctors first suspected an autoimmune issue I put myself on the Autoimmune Protocol Diet and felt better almost immediately. I can tell that my doctors think it’s probably all in my…[Read more]

Wow, that’s a lot of money. I have a good insurance plan for my prescriptions (and my secondary insurance) — it’s the Federal Blue Cross/Blue Shield. I’m hoping they’ll cover most of it,  but you never know. Thanks.

Thanks, Jan.

Charlene, I’ve been looking at the Simply Go unit you have because it has both continuous and pulse. When you travel, is that what you use for sleeping? When you’re flying for six or more hours do you have to bring lots of extra batteries. Is that unit sufficient for all your oxygen needs when you travel?

Thanks for the information, Robert. And good luck to you, too.

Is the Inogen FAA approved so you can take it on a plane?

The cold dry air is definitely tough for me. That’s when I had an incessant cough, and first noticed the shortness of breath. I’ve never liked air conditioning, but now that I’ve been officially diagnosed with PF I did get one for my bedroom last week. We get hot and humid here in RI and I think I might need a room to retreat to. Lots of folks on…[Read more]

Yes, Keith, I think you’re right about the five years FOLLOWING the five years with IPF/PF. That response would concern me. I’m definitely going to investigate a lung transplant, and if my current doctors discourage me from that, I’ll switch doctors.

I live in Rhode Island, just outside of Providence. I was diagnosed just recently and have been seeing doctors (pulmonologist, rheumatologist) that are part of Brown University/Lifespan. This week they’ve arranged for me to see a pulmonologist who specializes in ILD. They are working as a team to determine what kind of autoimmune disorder might…[Read more]