[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.

[Suzanne R Brennan]

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

[Suzanne R Brennan]

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.

[Suzanne R Brennan]

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 months. While the listed side effects for OFEV didn’t mention gum issues, my pulmonologist suggested that between that and the constant GI issues, I switch to Esbriet. I did that over two years ago and while I get an occasional flare up of redness and/or swelling, the pain has gone away.

Also, the periodontist prescribed a mouthwash they called “magic mouthwash” to rinse with twice a day. It had an antibiotic, an anti-fungal, lidocaine and one other ingredient that I can’t recall now. It had to be made up at a compounding pharmacy and refrigerated. I used it for about nine months or so and it helped quite a lot. I also started taking a probiotic during that time, which I still take.

I’m not sure which of the above helped or if I needed all of them but I rarely have problems now. I hope this is helpful.

[Suzanne R Brennan]

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 flat on my back but take first one leg and cross it over may body as low as I can for ten or so seconds and then the other. I do clam shells for eight on each side which also helps open the hips, and I stretch out as fully as I can with arms overhead and legs out straight, also for about ten seconds.

Then, I get out of bed, reach down towards my toes to let my back and hamstrings stretch, again for about ten seconds. I do eight arm circles, as wide as I can, eight forward shoulder rolls and finally eight neck rolls.

This all helps me to get out of bed and walk without being too sore and face the day! I have been doing this for well over a year after some physical therapy on my shoulders as the therapist said one reason for my shoulder issues was that my muscles were all so tight. She helped me to devise this program. While it sounds long, it really only takes about 5-7 minutes and is so well worth it!

[Suzanne R Brennan]

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 do some warm up exercises first and then he joins me and we lift weights but with frequent checking of O2 levels as well as heart rate so I rest quite a bit but still try to get in an hour. I use O2 at a high enough level to maintain mid-90’s even through the hardest sets. Also we don’t do another set until my heart rate comes down under 100. I tend to have higher heart rates than I used to so it’s important to rest enough between sets to ensure I am not taxing my heart too much.

I am always struck by how much better I feel and how much better I sleep afterwards. So even though hard, it is very rewarding and I will keep it up as long as I possibly can.

I also try to get in some recumbent indoor biking at least once per week as well as walking. I am so much slower at walking than I was before but still try to do it.  It’s good prep for my six minute walk tests too.

[Suzanne R Brennan]

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 prescribe supplemental O2 for you.

[Suzanne R Brennan]

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 for breathing too much so it would be better to just plan on using a green tank.

[Suzanne R Brennan]

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 have tested positive. I live in Colorado and one of the big ones (JBS in Greeley CO is one of them) has had to close for a minimum  of two weeks. These closures also mean the farmers have to continue to feed their livestock until rendering plants open back up so not only can they not bring their animals to a plant, they have to continue to feed them. Beef and pork are probably fine but lambs are a huge thing in CO in the spring and if they get too big, they are less desirable.

Not trying to be a downer but just wanted to point out that there are probably other places to get meat besides grocery stores. Hope that helps!

[Suzanne R Brennan]

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 yesterday!

Since I am on Esbriet, I need to have regular blood draws to check liver enzyme levels so he found an at-home testing company, sent away for a test kit which I used this morning, so that I didn’t have to go to a lab here.

For my part, I do some of the cleaning – such as the kitchen and bathrooms and can dust with  a mask on. But my main contribution is figuring out healthy and tasty meals, even if some of them are a bit unorthodox. I am trying to cram in as many veggies as possible into our favorite recipes! We also both continue to work out at home as we have a few free weights, some bands, a TRX strap and a recumbent bike. I do that with O2 and he does it as well.

I couldn’t do all this without him and I know that I am privileged in that way.

[Suzanne R Brennan]

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 back to cooking.

You are right, though, getting the right ingredients when you are home isolating, can be very difficult. Heartbreaking to see crops being plowed under due to a lack of distribution means once institutional buyers (schools, restaurants, etc.) were no longer purchasing. Sure hope farmers and their distribution partners solve this issue before the spring and summer crops are in the same dire straits.

[Suzanne R Brennan]

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 NSAIDs. He said he would prefer I cut back on use of any of those, which I did, and I cut back on use of alcohol as well – now have one glass a week and sometimes less.

That’s personal preference though, not a doctor requirement. I find that drinking a glass of wine interferes with sleep – I fall asleep great but wake up 2-3 hours later and have trouble falling back to sleep so I cut down on the wine.  I miss it though…

[Suzanne R Brennan]

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 ahead of himself.

I adore him!

[Suzanne R Brennan]

Sorry – meant health!

[Suzanne R Brennan]

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 I’ll be going there in three weeks so I’ve asked him and his parents (my brother and his wife) to stay away if they come down with what my nephew got.

Scares the heck out of me to think I could get it! I also got the two pneumonia shots last year and I think they are good for two years so won’t get another until next year.

We all have to do what we can to keep ourselves in as good heath as we can!

[Suzanne R Brennan]

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.

[Suzanne R Brennan]

The same thing happened to me.

[Suzanne R Brennan]

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 “breathe” function several times throughout the day. While I try to always breathe deeply, people with IPF tend to be more shallow breathers so it’s a good reminder to breathe deeply!

I knew about the the medical ability but hadn’t thought about it in connection with my IPF but it would be most helpful in that situation so thanks for reminding me of that!

[Suzanne R Brennan]

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 which led to a diagnosis of IPF. He prescribed this drug after my diagnosis and I have not had a dry cough since.

So I wanted to share that there are other alternatives out there.

[Suzanne R Brennan]

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

[Suzanne R Brennan]

Charlene, I don’t consider myself disabled and yet I did request the right paperwork from my doctor to get a placard. I don’t use it unless I am feeling particularly tired or if it’s really cold, which can affect my breathing. Since I carry my POC with me to the grocery store or other shopping, I can pass up the handicapped spot most of the time but sometimes I am so glad I have it!

[Suzanne R Brennan]

John, I saw my pulmonologist yesterday and asked him about this. He’s at National Jewish Health and is very active in various research activities. He had never heard of it. He went to the link you gave us and said he will look into it but from his brief reading suggested it sounds more like an emphysema process rather than something for IPFers. If/when he gets back to me, I can post his remarks. He also checked another site where studies are listed and he didn’t see it there either.

I would not do anything quite yet if I were you. Of course you can do whatever you want but I trust my doctor more than what I read on the internet. Just be cautious. I wouldn’t want you to cause yourself harm while trying something new but unproven.

[Suzanne R Brennan]

I met with my pulmonologist yesterday and asked him again about this. His reading showed him that obstructive lung diseases, e.g. COPD may benefit but he does not recommend it for restrictive diseases, e.g. IPF.

[Suzanne R Brennan]

Personally I think being dehydrated is linked to O2 use. It dries out my nasal passages a lot. I use it at night and with exertion but not while sitting at rest. In the morning, I try to drink about 14-16 ounces before I have coffee to ensure I am hydrated before the caffeine causes more dehydration.

I am doing well with Esbriet and now I am in the Galapagos trial as well. Of course I could be taking the placebo but I am seeing ever so slightly higher sats than before. Like at rest, I am now 95-96 where before I was 93-94. While exerting, I still use about the same level of O2 but again have 2-3 additional points when I measure my O2.

My next PFTs aren’t for a few weeks so that should help me see whether I have sustained or even improved results.

I hope you are well and that the heat and humidity has now decreased where you live. Take care.