Cynthia

That IS exciting. Thanks for sharing that.

Also, I live in RI too, and go to a support group the the third Thursday of the month in East Providence. Let me know if you’re interested in that. There are people there who are also pursuing transplants.

Hi Pamela. I assume you’ve looked into Brigham and Women’s in Boston. I’ll be 72 next month and am considering starting the process at either B&W or Mass General. Did they put you through a lot of tests before telling you you weren’t eligible? That’s what I’m dreading. Can I ask what they decided made you ineligible? Only if you’re comfortable…[Read more]

It looks gorgeous. Have a wonderful trip.

Have a wonderful trip, Charlene. I look forward to hearing how you handle any challenges you encounter. I haven’t traveled since getting my diagnosis and supplementary oxygen, so I’m particularly interested in how others do it.

I share your ambivalence about transplantation at my age. I’m going to see how I am after the holidays and make a decision then whether to pursue that option. I’m not sure I’d even be eligible. Right now I’m hoping the drugs I’m on will stabilize this disease. Mine is autoimmune-related and my doctor says sometimes the CellCept is able to put it…[Read more]

Thanks for sharing that, Annette. The unpredictability of this disease scares me to death too. Did you ever look into transplantation? Can you tell me a little more about your current condition. Are you on a lot of oxygen? Are you able to care for yourself and do some socializing? I’m curious why your doctor thought you were ready for palliative…[Read more]

It’s possible you might feel better after starting the immune suppressive drugs if you have inflammation. I just started prednisone and CellCept two weeks ago and my pulmonologist is hopeful that some of what he sees in my lungs is in fact inflammation, which can be eradicated. The scarring, of course, is irreversible, but hopefully the drugs will…[Read more]

Mark, thanks so much for letting us know about this webinar series. I just listened to the June “Ask a Doc.” It’s excellent.

@peter

I’m surprised your doctor waited so long to put you on oxygen. It sounds like you might have needed it earlier. I was put on oxygen (2L) for exertion and sleep right after the diagnosis in May. I can definitely feel the difference. Even walking around a supermarket makes me dizzy and tired if I don’t use it.

I’m on 1000 mg 2x  a day of Cellcept and 40 mg of Prednisone. One or both of them are giving me terrible insomnia. I do feel tired during the day.

I find I freak out a little when I have bad days. I’m scared to death the disease is progressing. I’m still relatively new to this (I was just diagnosed in May) so I’m not quite sure how I’m supposed to feel. My doctor just doubled my Cellcept on Friday so maybe the fact that I’m not feeling great today is due to that. I don’t know how to describe…[Read more]

What appealed to me with the large Simply Go (not the mini) is that it has continuous flow, which I need for sleep. It would make it so much easier to travel without arranging for a concentrator. And sometimes I just want to go for an overnight trip.

It won’t be a magic bullet, but he seemed hopeful that I’d see some improvement. I definitely have some scarring that can’t be reversed, but there were areas on the CT scan where he said it was hard to determine whether it was inflammation or scarring. Given the autoimmune issue, he’s now thinking some of it is inflammation and that the drugs will…[Read more]

Has it halted the progression of your PF?

I consider it a good day when I go for more than an hour without thinking about this disease. Usually there are physical and mental reminders that make forgetting about it impossible. On a good day my chest doesn’t feel tight or heavy, breathing isn’t a struggle, and I have some energy. I get errands done, finish some work, go to pulmonary rehab,…[Read more]

I was first diagnosed with interstitial lung disease in May 2019. Because my blood tests were inconclusive, my pulmonologist decided to call it IPF rather than an autoimmune issue. I went on Ofev. When I had a flare-up of a skin problem on my hands, and the rheumatologist saw it, he ordered a skin biopsy, which proved positive for “mechanic’s…[Read more]

Hi Charlene. Thanks for responding. Yes, the smog could be an issue, but on those days I’d just stay in my air-conditioned apartment. And probably during the hottest part of the day in the summer. But I’ve stayed with my daughter when the temps were in the 90s and it didn’t feel hot to me at all. So different without the humidity.

Yes, that would…[Read more]