Suzanne R Brennan

I am so very sorry for your loss. Hold your memories close so that you have them when you need them the most. IPF is an insidious disease and one that many family members and friends struggle to understand. As a fellow IPF sufferer, I do understand the heartbreak that comes along with it.

Take care of yourself.

I was also informed of this news.I am hoping we will get more details as to why in the coming days.

I had been in this trial since May 2019. Yesterday trial participants were notified that the trial has been cancelled effective immediately. Not much yet in the way of details but hopefully we will get some explanation in the coming days as to why.

After about 6 months on OFEV, I started experiencing some gum line redness, swelling and pain. My regular dentist recommended I see a periodontist, which I did. His office did a very “deep” cleaning and then recommended that I see my regular dentist every six months and the periodontist every six months, so having my teeth cleaned every three…[Read more]

One additional thing is that I do a series of stretches before I even get out of bed each morning. I am still on my nighttime O2 while doing it. I do eight leg raises on each side, I do an exercise where I lift my knees, cross them over each other and rock from side to side, which loosens up my hips. I do a cross over leg exercise where I stay…[Read more]

Charlene, I do know what you are saying. Can be so hard to exercise but I always think back to when my pulmonologist told me that if he had to choose (and he didn’t say he wanted to), he would choose me continuing to exercise over taking Esbriet as he felt it was that important.

I work out with a personal trainer twice a week, using FaceTime. I…[Read more]

John, if you are dropping to 77, you really need to stop exercising until you have supplemental oxygen to use to do it safely. It’s way too hard on your heart and other internal organs to go that low and stopping to “let your O2 catch up” is not good enough.

Please contact your pulmonologist and let him/her know that this is happening so they can…[Read more]

I had the same concerns and discussed them with my doctor. He said that I should use a green O2 tank if I have to be outside around people as he expressed the same concerns. My husband tried to figure out if he could add a carbon filter to the intake areas beneath the mesh but he quickly realized that it would restrict the air to be concentrated…[Read more]

Charlene, one thing I found is that smaller meat markets/butchers still have a pretty good supply and some are delivering here in the states. Perhaps you can find one in your part of Canada who could deliver as well or at least allow someone to pick up products on your behalf. Yes, some meat processing plants have had to close as so many workers…[Read more]

I am so very lucky that my husband is an excellent caregiver. Not only is he helping by receiving all deliveries and doing a lot of the cleaning, he helps me mentally so much! He also set up a six minute walk test in our condo building underground garage so that I could complete one that was scheduled for last week. I sent the results to my doctor…[Read more]

A few months back, my  husband and I tried Silver Palate, which I believe was touted by AARP in the US. The meals were interesting and creative but one size definitely doesn’t fit all! I was satiated but my husband was not. We didn’t order again as we would’ve needed three for one meal for the two of us and it just wasn’t cost effective. I went…[Read more]

My doctor asked initially about alcohol use and I said I usually drank a glass of wine with dinner – not every night but maybe five of seven. He didn’t seem concerned but did say I needed to have regular liver enzyme blood tests once on (first) OFEV and then (second Esbriet). One time, I was high in two of the enzymes so we discussed use of…[Read more]

I could not do this on my own. I have a wonderful husband and our marriage is 44 years strong! He is thoughtful and knows when he needs to step in to help me and when to let me do things on my own. Believe me, this is not a universal trait! But I love it about him. While he has some health issues of his own which I try to help him with, he puts me…[Read more]

Sorry – meant health!

I get a flu shot every year and did so even before I was diagnosed with IPF as my Mom had COPD. I always ask my family members to get flu shots so I can be around them.

Recently, my nephew came down with Influenza type A even though he had a flu shot. They put him on Tamiflu right away and he is getting better. He lives in a different state but…[Read more]

I finished the survey but skipped a couple of questions. The first question regarding the number of hospitalizations didn’t have “none” as a choice. I can’t remember the second one but that one also did not have an option I could choose for it.

I wanted to let you know.

The same thing happened to me.

I have an Apple watch and downloaded an app that measures the altitude. Living in Colorado means that I am almost always at 5280 ft (mile high city!) but I have used it in other locations as well as I sometimes need to bump up my POC if I am at higher altitudes and often don’t even have to use it at sea level or close to it.

I do use the…[Read more]

Charlene, I know this post is about gabapentin but I want to also throw out that my pulmonologist at National Jewish Health prescribed Baclofen (10mg twice a day), which is an off-label drug used primarily for people with MS. I had a dry cough in 2015 which prompted me to go to the doctor and that set off a whirlwind of tests and appointments…[Read more]

When I read about their work and having received the Nobel prize, I was really hoping it would do something for our community!