[Cynthia]

@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?

[Cynthia]

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.

[Cynthia]

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 have triggered my PF. I’ve been impressed with their care and thoroughness. I believe there’s a support group that meets in their building, which I’m going to ask about this week.

[Cynthia]

In clinical trials, do half the participants get a placebo?

[Cynthia]

I was diagnosed with gerd about a year ago, but only took Zantac when needed — after fried or spicy foods or an unusually large and/or late dinner. There does seem to be some connection between gerd and PF/IPF but I’m not sure what it is.

And, yes, I started noticing I was clearing my throat a lot long before my PF diagnosis.

[Cynthia]

Linda, I believe you and I are in a similar state of initial anger, confusion, anxiety, etc. about this disease– and what lies ahead. I see that you were just diagnosed last month. I was diagnosed last week. I’m a little older than you — 71 — but I’ve been very active and still work part-time.  Finding this site and these forums has been a big source of comfort and information for me. Thank you, Charlene and Mark, for the time you put into supporting it.

[Cynthia]

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

[Cynthia]

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.

[Cynthia]

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 staying somewhere for a week or more. I can’t remember where in Canada you live; how long will your flight to Hawaii be? How many batteries will you have to bring? I hope you have a fabulous time there. We’ve had a cold wet spring here in Rhode Island, but we’ve got the perfect weekend right now. Clear air and temps in the low 70s. I even did a little weeding this morning — wearing a face mask.

[Cynthia]

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 head, but I’ve stuck with it pretty religiously, eating very few grains (no wheat), very little dairy and no sugar. I don’t have the dizziness I was suffering before or the tightness in my chest. The only alternative medicine I’m taking now is tumeric and pepper, which is supposed to be an anti-inflammatory. I’m really looking forward to the pulmonary rehab because I think getting some exercise will make me feel better as well. I didn’t do very well on my 6-minute walk, so I’ve been waiting to get some oxygen before doing much of anything.

[Cynthia]

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.

[Cynthia]

Thanks, Jan.

[Cynthia]

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?

[Cynthia]

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

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

[Cynthia]

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.

[Cynthia]

Thank you so much, Robert, for that information. I’ll certainly be requesting an evaluation there at some point. I loved hearing about that 74-year-old who is back on the golf course.

[Cynthia]

I wish you could join us too, Charlene. I had a nice conversation with Paula this morning on the phone and we were both saying how important this forum has become to us. Thank you so much for all you do to keep it going. It’s been an incredible source of comfort and information for me since learning about this disease just two weeks ago.

[Cynthia]

Hi @paula. I live in East Providence so I’m just 20 minutes away from you. I go to Briggs Nursery all the time. Perhaps we can meet for coffee sometime. I’d love to talk with someone who is going through this. When were you diagnosed? I was just diagnosed a few weeks ago so I’m still trying to digest what this all means.

[Cynthia]

Hi Paula. I live in Rhode Island and will be investigating lung transplants at some time in the future. Does Mass General have a bigger program than Brigham and Women’s? Do they do transplants on people over 70 (I’m 71)? I know that some places do and others don’t.

[Cynthia]

Thanks, Tom. I’ll try that.

[Cynthia]

It sure seems like there’s some relationship between IPF/PF and sinus issues, post-nasal drip, runny nose, etc. Have there been any studies linking them? Acid-reflux also seems to be in the mix.

[Cynthia]

Thanks, Glenda. I’ll ask my doctor about that at my next appointment. It’s really annoying when I’m trying to fall asleep.

[Cynthia]

Mark, yes, I have post-nasal drip too. In fact that’s what they blamed my chronic cough on for over a year before I got the ILD diagnosis.

[Cynthia]

Hi Linda. Yes, I suppose if I’m eligible for a lung transplant I’ll consider it at some point. I’m eager now for my doctors (a pulmonologist and a rheumatologist) to identify a cause and start some treatment. I know that takes time, and sometimes a cause is never learned, but I’ll feel better once we start treating this. I also think I might need to start some oxygen fairly soon. I’d like to start an exercise program but I think my oxygen levels get low pretty quickly. Because they suspect autoimmune issues in my disease I put myself on an autoimmune diet–mostly to feel like I was doing something, but I have to say it seems to be making me feel better physically. I don’t feel so dizzy for one thing. Like you I’ve beat myself up about all the environmental toxins I’ve exposed myself to over the years, including asbestos in every house I ever lived in, but so has most everyone else my age and this is a relatively rare disease. Right now I’m accepting that I won’t live to old age, but I really want to do everything I can to keep the quality of my life as high as possible for the years I do have.