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…[Read more]

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.

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. I…[Read more]

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…[Read more]

I find that if I have a glass of water right after some wine and just consistently stay hydrated, I don’t get the headache/hangover you have been getting. On occasion I have noticed a headache after having wine the night before but rarely if I drink enough water or other liquids.

I have significantly cut back though as I used to have wine every n…[Read more]

Fran, I echo what Mark said about using whey protein to make smoothies. I use almond milk and frozen blueberries in mine – I use a blender and it becomes like a milk shake but healthier. It helps me to get enough protein (I think the Whole Foods brand I buy gives you 20 grams in each serving) as I don’t always get enough each day. Eating small…[Read more]

Charlene, thanks for sharing this link. Dr. Swigris is my pulmonologist at National Jewish Health and I feel so fortunate as he is really, really good at his job!

What I found funny was the diagramming in the video as he does this kind of drawing whenever I ask questions about different lung related things. I often go home with his drawings on…[Read more]

I live in Denver CO, am not a veteran and use National Jewish Health for my lung care. They are great so the person from Denver should make an appointment with them, if they haven’t already tried to do that.

I was diagnosed in January 2016 based on a dry cough that wasn’t going away. My primary doctor listened to my lungs, mentioned “Velcro…[Read more]

Mark, my pulmonologist prescribes Baclofen (10mg each; twice a day) for me. It has really helped my cough but I have never seen anyone else who takes it. It was initially for MS but my doc prescribed it for my IPF cough and it works well.  My doc is at National Jewish Health and presumably has prescribed it for others as well.

Denny, I am in the Galapagos trial at National Jewish Health, Denver, CO. I have been taking the meds for about two weeks now. And, you are right: one third take  the full dose, one third take a half dose, and one third takes a placebo. With no real side effects, I don’t know which dose I am getting.

Charlene, I am on Esbriet; started with OFEV.

I have taken both of the anti-fibrotics and have had a couple of nose bleeds but am also on a blood thinner since a pulmonary embolism in August last year.  None of the medications seem to have caused the nosebleeds. I live in Denver, which is very dry and I attribute the ones I have had to that.

Since they tend to build as you read each one, I would start with the first and then, if you like it, you can go on to the next. I ran across her when looking on Kindle for a particular genre and since I loved the first one, I continued on.

I have read all the available books by Tana French. She is an American-Irish writer of murder mysteries (The Dublin Murder Squad) which are very good. I regularly scan Kindle to see if she has written anything else and recently downloaded her most recent book. She now has seven out:

1) In the Woods

2) The Likeness

3) Faithful Place

4) Broken…[Read more]

I don’t take OFEV anymore as I switched to Esbriet in September last year. However, while I took it for a year, my doctor told me that eight hours between doses was perfectly fine. I would often eat a half of a protein bar with either dose and it helped with the gastrointestinal side effects. So did taking a half dose of liquid Immodium every other day.

My heart rate has increased, both at rest and while exercising. I am around mid-70’s at rest and it can go as high as 145-150 during a vigorous walk or weight lifting. My pulmonologist said that Esbriet can do that.

I have seen a lot of posts regarding how to control the IPF cough. I am pretty lucky that I don’t cough much – at least right now. But a cough is what led me to a doctor and my diagnosis of IPF. My pulmonologist prescribed Bacflofen for me (10 mg each morning and night) and I hardly ever cough anymore. That is an “off-label” use for that drug -…[Read more]

I was diagnosed with IPF over three years ago now but I can still remember going home stunned by the news I had received. Especially after doing some research on the Internet  about it. My doctor told me not to do that but of course, I did. My second visit with my pulmonologist was filled with tons of questions and thankfully, he was very…[Read more]

With respect to the marijuana designations. There are two strains: Indica and Sativa. There is CBD and THC in each but very little THC in the Indica strain and more CBD and I believe the opposite is true for the Sativa, hence the head high with Sativa. Many years ago, I don’t think there was general knowledge of the distinction but as it became…[Read more]