hi @mark-koziol ,
Don’t be sad for me as I have a positive attitude because it is what it is.
I just take one day at a time and work through those things that need attention to have the best quality of life I can without dwelling on the disease. But thank you for your concern. I have a great support group in my family and friends.
I too am experiencing a rise in my pulse rate. It has always been 72 and is now steady at 85 resting. We won’t talk about how it goes crazy when I move around. I am thinking it is the natural progression of the disease. I will be going off of esbriet at the end of the month as in my final stage there is little point in taking it, so I will see…[Read more]
Hi Jan ( @janriche )
It is amazing how our symptoms and thought processes are so much alike. From the liters required to do daily routines and the closeness of our age (79.,80 on July 4th if I make it). I also do not dwell on my IPF. For instance, my day consist of crossword puzzles, crytoquotes and jumbles. I watch some TV but most are nor w…[Read more]
Gary, ( @gary-kitahara )
wow! I will definitely Check all this out.What liquid were you talking about? I did try putting water with the concentrator but it cut the flow by 2 liters.
I will get back to you and let you known what I found out. If you talking about liquid oxygen there is no one in our area that services it. I know you can get more…[Read more]
Thank you Mark.
My wife tried to use eucalyptus and peppermint treatment and I didn’t use it but once and then not not much so I will try again with a little more gusto to see if it works better than my current treatments.
Yes I do struggle with my nose being dry. I use a tube of gel that has aloe in it. It is calle AYR saline and nasal…[Read more]
Thank you Katie for your kind words.
I seem to be stable right now and the only problem I have controlling is my nose clogging up. If I cough and have nose problems I turn to Dayquill. If I do not have the cough I have been using Sudafed, My cough has subsided substantially since I turned my oxygen up a notch which is high as I can go at 9 liters.…[Read more]
I am continually encouraged that so many studies are being done on the behalf of IPF.
I am truly happy for those that will be able to benefit from them.
Unfortunately it is too late for me as the studies last for years and I only have months.
But it puts a smile on my face knowing that one day there will b a cure.
My PFT tests show a decline every time .I am now at 8 plus liters of o2. I reach a plateau and stay for awhile then I decline some more. So it doesn’t stop it for sure but slowing it, maybe.
As far as my activities, I do crosswords and crytoquotes and jumbles daily and work on putting puzzles together. The puzzles are the most helpful because I am…[Read more]
I wish you the very best in getting the transplant. I wasn’t given that option although I am in good health otherwise. It is because of my age.
You are doing the right thing as far as exercise goes but here is what happened to me.
I weighed 165 which was a good weight for me even though my height was 5′ 11.”
They told me that since I r…[Read more]
Okay, here is a morbid thought.
If my breathing is such that I am unable to walk across a room when my oxygen drops off into the 70’s and I am basically home bound, should I really be taking a pill to slow down the progression?
This is a new unexpected experience of end of life processes. I am 79 years old and have little doubt that I am close to the end as my oxygen requirements are reaching more than the oxygenators can handle.
I was diagnosed with ipf with a biopsy in 2010. I joined a study group for a year for the use of perfinidone(esbriet). I have been taking it…[Read more]
I wanted to get back to you on my Canada trip and my coughing problem so that others may benefit or not.
First of all the only time I got through Ontario, Canada was on a trip to Texas from Quebec across the Queens Highway. My favorite places in Canada was Halifax and Prince Edward Island. On the west coast I liked traveling t…[Read more]
I am curious as to where you are in Canada.
I have been up both coasts while full timing in an RV and loved Canada.
Update on my coughing. The morphine is working but causing constipation so I am experimenting with doses and laxatives. I cut back on the dose amount from 1 teaspoon to half just twice a day. The prescription is for 1 …[Read more]
Megan you have made my day.
Because of your input to this forum I decided to try the morphine regime.
It is a low dose of which I take 1 tsp every 4 hours.
This has reduced my coughing by 90 per cent (An educated guess) and when I do it is of shorter duration and not as severe. Even though my shortness of breath has not changed as it seems…[Read more]
Thank you for the in-depth report. It was extremely helpful to me as I have ipf with very similar conditions as your dad had. When one has a terminal disease it seems we wonder what the end will be like. The progress your dad had is what I am going through right now. It I move my lips I breath hard. Okay a little exaggeration but I do find it h…[Read more]
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