[Regina Bolyard]

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 channel and the internet for information that might be relevant to my diagnosis. Because of the lung issues related to Covid-19 there is suddenly a lot of information being disseminated  that seems credible but is not peer reviewed. It is particularly enticing to delve in because I have a lot of free time with “stay in place” measures. But I think a “wait and see” attitude is prudent. And taking as deep a breath as possible to calm down.

 

[Regina Bolyard]

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 friend shared the article on Facebook and it has since been flagged as questionable. But I wonder if there is something to it. I suppose time may tell.

The takeaway for me is that much remains to be understood. The body is a tightly balanced chemical system. Finding the root cause for dysfunction in this system can be very difficult. It would be fabulous if supplements easily patched up “holes”, but they can sometimes confound instead. I’m concerned about possible negative consequences of taking any supplements lately.

 

The more I learn, the dumber I feel.

[Regina Bolyard]

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

[Regina Bolyard]

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 hear in their voices is very touching and encouraging.

 

[Regina Bolyard]

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 preparing meals that I haven’t made in a very long time. Making sure not to waste is stimulating creativity. So is my low tolerance for repetition.

I ventured out to the grocery store on Sunday to pick up a couple of things to ensure variety. But I’m still going to need to figure out how to best use what I have to suit my preferences. Cooking for one can be challenging in that way.

I generally avoid sugar and starches and grains, and while I love beans, they do not love me! So I have little in the way of dry staples and canned foods. That said, if current lock-down measures are prolonged and food supplies become scarce, I’ll be all up in the big bag of rice I stashed!

[Regina Bolyard]

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 more stable than it was previously. It has helped to radically reduce inflammation for me. Nevertheless, I agree that part of due diligence includes talking to your doctor about diet and weight management. At the very least, to apprise them of your choices. It would not do at all to have your physician panic over slightly elevated ketone levels and assume that you are headed toward diabetic ketoacidosis. That condition is very, very different from nutritional ketosis and is extremely serious.

 

All the best to you.

[Regina Bolyard]

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 takes hours for my stomach to empty, so frequent meals are not good for me. I want to be have a plan in case I am prescribed OFEV. I appreciate the wisdom shared here on this forum.

[Regina Bolyard]

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?

[Regina Bolyard]

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, degenerative illness. Getting the flu may not tragically affect your health, but you never know who you may be infecting if you get it. Herd immunity. It’s a thing.

[Regina Bolyard]

Mark, that’s good to know! Thank you.

[Regina Bolyard]

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.

[Regina Bolyard]

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.

 

[Regina Bolyard]

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. That was partly due to loss of fat that was further restricting my breathing, but I have no doubt that reducing inflammation also helped. I have no GERD when avoiding these foods either. Since gaining back a significant amount, I definitely feel the burden. I cough and wheeze a lot more when I repeatedly make poor food choices. Reflux also becomes an issue again. Now that I know why I was ill, I have greater incentive to straighten myself out. Especially with upcoming surgery.

Best wishes for all of you to succeed in your fitness goals!

[Regina Bolyard]

Awkward…yes. But I was heartened to see a young cashier wearing both mask and gloves at a supermarket yesterday although she did not appear to be ill. I usually wear a scarf I can cover my face with, at least since getting diagnosed with PF a few weeks ago. I have gotten some quizzical looks while shopping, and even in doctor’s offices. But since having a protracted respiratory infection recently, I’ll do what it takes to protect myself.

My Vogmask should arrive today and I intend to wear it whenever in crowds. I don’t really care so much what strangers think, but I will speak up to put their minds at ease if they seem unsettled by sitting next to me in public places. It is actually among friends where I will feel uncomfortable wearing a mask. I have been telling them for years that I cannot tolerate most fragrance. I didn’t know what was wrong with me and I’m sure some of them who haven’t known me very long thought I was attention seeking. It doesn’t help that a brassy, sassy mutual friend with chemical sensitivities at times seemed combatant about defending personal space. I am much more meek and I suspect people don’t take me seriously. I’m not planning on sharing my medical information with everyone I know, so It’s going to be interesting.

[Regina Bolyard]

I just picked up the last necessary ingredient to make liposomal vitamin C. I used to make it on a regular basis, before being diagnosed with PF. Now I have compelling reason to resume this practice. I got my flu and pneumonia shots today also. I want to be as strong as possible before biopsy surgery.

I’m thinking I might add some glutathione to this batch.

[Regina Bolyard]

I have taken generic gabapentin on and off for years to treat pain. It definitely helps me with cough reflex. I still feel the burning sensation in my lungs, but I can resist the urge easier on this medication.