Forum Replies Created
February 11, 2020 at 2:19 pm #22930
I have ipf and in my 11th year. I am 80 years old with no transplant. So, I guess it’s anybody’s guess as far as prognosis goes. I am on 8 liters of oxygen. Pretty much close to the end of the line.
April 19, 2019 at 2:29 pm #18613
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.
- This reply was modified 1 year, 9 months ago by Charlene Marshall. Reason: tagging
April 18, 2019 at 1:41 pm #18591
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 what the difference is then. Weight loss is definitely an effect of the disease as I lost 37 pounds during the process. although surprisingly I gained 4 ponds back. I didn’t know I could do that. I drink an ensure daily to combat brittle bones. My hospice nurse said the top right of my lung sounds fine so I guess that is what is sustaining me for now.
April 13, 2019 at 1:33 pm #18374
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 worth it. I spend my days trying to adjust medications to get consistent with the results. From clogging nose to digestive problems. I am slowly figuring it out.
I smiled when you said you were not afraid of death but all of those things that come before it. That is me to a tee. I also am to a point where any exertion results in no energy and lower o2. I also loved to cook and adjust recipes to taste better. I became famous for my chili and creamed beef on toast. ( the military nicked named it SOS,Stuff? on a shingle).
My wife and care taker is learning my recipes. She waits on me hand and foot.
You might want download the universal puzzle from the internet. I believe my mind has been kept sharp because of the brain exercises.
When you wrote that talking about giving up Esbriet I again smiled as in another response I said the same thing. What’s the point. Well, since then my hospice doctor recommended I quit them so I talked to my primary care doctor and he said that they symptomatically don’t do much. So quit them. I have a call in to my pulmonary doctor but I am sure he will say the same thing. I will finish my last bottle and then won’t order anymore. I teased my doctor by saying, “isn’t that a form of giving up”?
Thanks for the response. Maybe the man upstairs will introduce us. 🙂
April 13, 2019 at 1:41 pm #18375
It looks like I cannot use any of your suggestions as there is no medical liquid oxygen for miles and miles and the dual concentrators to still only gives me 10 liters.
Thanks for your input.