Regina Bolyard

Hi Virginia,

I’m so sorry for you not having support at work. In addition to having your livelihood threatened, it must feel like you are being devalued. I want you to know how much I appreciate nurses. You are the backbone of patient care and the comforting attention you give is critical to our well being and recovery.

Like Bengt, I also w…[Read more]

I think that a second opinion might give you peace of mind, if nothing else. Knowing that you have explored all options might also give you added sense of control of your disease.

I am often surprised at the diagnoses made without a biopsy. I am assuming that your radiological pattern was so obvious that it shows unmistakable UIP pattern. Also…[Read more]

I have the same problem sometimes. I tried to post on the thread about the time lag in getting diagnosed several times with no success. But I posted in a different thread using the same device. I just had to wait for a moderator to approve.

Mark and Charlene,

This topic bought to mind something I read a little while back.

https://www.fda.gov/news-events/press-announcements/fda-approves-first-treatment-group-progressive-interstitial-lung-diseases

I had a telemedicine appointment with my primary care doctor recently. I’m no stranger to video conferencing, but I wasn’t entirely comfortable about using it to replace an office visit. However, it was preferable to making a non essential trip and I just needed med refills.

I lost my doctors visual feed a minute into the appointment, so the…[Read more]

Hi Charlene,

Thanks for responding to my post. Having PF has been a very isolating experience, even before I knew what was wrong. I feel like people just can’t handle hearing about my issues, so I withdraw. It’s important to have an outlet like this forum in which to express my thoughts.

Since November I have scoured the PFF YouTube cha…[Read more]

The article referenced in this thread reminds me of another I recently read. But the latter was pertaining to SARS-CoV-2.

It theorized that the novel coronavirus is causing damage to the iron transport system. It speculated that unliganded iron (which is toxic) when dumped from Ferritin is instigating inflammation and cell damage in organs. A…[Read more]

That’s a great idea, Mark! Hopefully I can find some recipes that don’t require a lot of ingredients.

One outstanding benefit for me has been connecting with friends using Zoom. Prior to this pandemic, even my very dear friends did not seem to grasp the pain and loneliness of being isolated. Now I see that many of them are feeling the stress, and their concerns for each other is almost tangible. The love and happiness that I see in their faces and…[Read more]

Resisting the urge to eat out of boredom is a challenge right now. Oddly, anxiety about having enough food to last messes with my head too. And it’s not as though I’m ill prepared….. so that’s weird. Fortunately I don’t keep many snack foods around. If I want to eat, I usually have to cook. The upside is that I am enjoying myself by prepari…[Read more]

Thanks for sharing , Mark. I’ll definitely have the discussion with the doctor about diet when and if Ofev is prescribed. I was merely curious to know if anyone else has experience with this way of eating while taking the antifibrotic.

I’ve been eating a ketogenic diet for a couple of years now and my kidney function is actually better and mor…[Read more]

Thanks for your input, Dan.

Did you discover that high protein meals helped with side effects after trial and error? I’m wondering if a ketogenic meal would have the same benefit. Extremely low carb, moderate protein, but high fat. I do not tolerate large meals well so I eat very calorie dense portions a couple of times a day. It also sometimes t…[Read more]

I wonder what criteria will be used to determine which patients of chronic fibrosing ILD qualify for treatment with OFEV. It seems to me that the sooner therapy is started, the better. If declining lung function is the determining factor, it seems a bit arbitrary. Who decides, the clinician, or the insurance companies?

Both my GP and my pulmonologist endorse getting the flu vaccine. I did so this year for the first time in many years. With surgical biopsy and hospitalization in the near future, I want to have every protection possible.

I am reminded of the value of vaccination as I lost a friend to the flu this week who was compromised by a chronic,…[Read more]

Mark, that’s good to know! Thank you.

The same thing just happened to me. The request came from “Johnson” but the name link sent me to an error page. I searched through the member registry and no such person was listed.

Terry Moriarty,

Thank you so much for sharing your experience. I advocate abstinence from all sources of sugar. That includes all but the lowest glycemic fruit. It seems crushingly restrictive at times but the benefits, for me, are obvious. Deviating from it is equally telling.

I look at sugar….. I gain weight! Same with grains and rice. Sometimes it’s torture to resist, and sometimes I fail. But I feel so much better when I avoid all sources of sugar and starch. I also try to avoid all processed seed oils as these promote inflammation.

I lost 60 lbs over the course of a year and it helped my breathing tremendously. T…[Read more]