Joyce Douglas

I was not given any instructions on drinking a glass of wine or a rum and coke either.  My Dr. asked how much I drank and I said about 3 drinks a week and he wasn’t concerned about that.  However, I developed a bad hip and have been taking Extra Strength Tylenol 2 or 3 times a day to keep the pain at bay. I visited Physio to get help with it and s…[Read more]

Thank you Martha for the suggestions.  I know they are affective as I did use some of them last winter.  We live in Manitoba, Canada where it gets to be -30C or -35F and the tubing and cannula can actually harden to the state of being stiff and almost solid – unbendable.  I asked one tubing wearer what would happen if I caught the tubing in the ca…[Read more]

Hi Steve. I was also hospitalized for 4.5 days with AFib (finally diagnosed) and the Dr. have had quite a time deciding which medication to put me on that won’t affect my Esbriet or other meds. However, they do have me on one that seems to be working. When I first get up I find my rate is anywhere from 135 down to 68 or near there and it jumps up…[Read more]

Hi. My husband and I have become flu shot customers for the past almost 22 yrs. We began when my mother was a patient in the hospital because we didn’t want to bring anything in from the outside world to make her more ill. We have rarely not taken the flu shot and it is not a big deal for us. We also had the pneumonia shot, about 12+ years ago.…[Read more]

Hi Charlene. It has been a while since I was in touch. Well, I made it to our 60th wedding Anniversary and had a very nice visit with family and a few friends. It wasn’t a big party, just a celebration of life together over the past 60 years. One of my goals has been reached and I am so happy.
Regarding the brain fog. Oh yes, I can…[Read more]

Hello Charlene.  In response to your questions on today’s posting,  I was diagnosed on one day and immediately my Dr.

who is in charge of my IPF, told me he was putting me on the Esbriet.  He also said that I had severe IPF and wouldn’t be able to have a lung transplant.  I received my first box of Esbriet about a month later, and 16 months lat…[Read more]

Hi Charlene,   I told you I would respond and let you know what my Dr. said when  I asked him if I could change to the ‘super pill’ as he called it – one pill containing the same power/potency as the 3 pills of Esbriet.  He said he did not know if it was available in Canada yet, so I suppose I’ll have to wait until he finds out and gets me on to…[Read more]

Hello Charlene and Sandra. I know of what you are speaking about. It seems so hard to just feel normal never mind having to explain it to others. I too feel good when alone, especially when I need to cough some or just veg out. I
do enjoy reading the posts from other IPF survivors (I call us ALL survivors, because we are surviving in spite of…[Read more]

Hi Charlene. I definitely will let you know his feelings on the subject. He is well known in the area as the Dr who gets good results so I believe he is a revolutionary inIPF treatments.

Thanks Rick. Appreciate the clarificTion.

Hi Charlene. I was referring to the ‘new’ Super Pill. I am on lasix daily and so far it has been keeping the fluid down in my lungs. I may have had a medication problem due to not understanding the Dr.s orders. Now it appears to be straightened out. I see my reg. Dr. On Monday so won’t find out about the Super Pill till I see my Respiratory…[Read more]

Donald really sounds very positive of the new Esbriet!! I am going to talk it over with my Respiratory Physician for sure. Sounds very positive. Thanks, Donald. My latest stint in hospital gives me the urge to keep on trying harder.

Hi Charlene. My Dr. Has spoken of the new ‘Super Pill’ he had information on. He hasn’t suggested I go on it yet, but unless there were worse side effects I think I would give it a try for sure. I just was released from a hospital stay of 4 1/2 day stay – fluid on my lungs. It was thought I had pneumonia but there was no raised white cell count,…[Read more]

Hello again Charlene. When I was diagnosed a year ago the Dr. stated that my IPF was advanced. I haven’t been told if he will be doing another lung function test soon. Will ask him at my next visit. Don’t really know where I am at in the stages.

Ok Charlene will keep you posted. My body isn’t doing great. I am having A Fib problems now. Don’t have High blood pressure but was put on the pills. The rate still fluctuates a lot but recovers more quickly. Takes 2 wks I am t8ld for themnto really work well…so far its only been 4 days.

I know George. Thanks for the info. Even my Dr. wanted me to cut back on my depression and anti-anxiety meds. I did cut back, but it didn’t help my breathing any, also my anxiety became worse. Think I’ll give the CBD oil another try and see if it helps, or I’ll go back to the former med dose. I know my lungs are working hard now anyway.

You are saying it has helped your IPF? I was told my kungs would relaxed and they needed to be ready to fight the PF. Was that not really correct? If not I’ll go back on it.

Yes Charlene. That was exactly how it came about. My disappearing muscle tone and strength had me asking my Dr. for the reasons why this was happening when I was already attending Curves 2 or 3 times some weeks.  He had no answer except to put me on another puffer, which didn’t do anything to help the muscles.  They would just throb and ache w…[Read more]

Hi Charlene.  Thank you for your ideas.  I have been turning up my O2 from 2l to 3l when I am out of the Apt. and also have found if I am walking then I need 4l.  Of course the O2 on the POL depletes more rapidly, but I can charge the POL in my car and am able to take along an electrical cord to plug it into any electrical plugin, which I have do…[Read more]

Hi Charlene.  This post is in response to your question as to how I found out about the Inspiration Program from Ottawa.

My Dr. (B. Bookatz) in Brandon MB, registered me to begin the medication – Esbriet starting in June of 2017.  Just shortly after I got back home from the initial hospital stay where and when I was diagnosed with IPF on May 6…[Read more]