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.

 

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… Read more

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.

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… 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… Read more

Thank you Mark.
Katie,
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… 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… Read more

Thank you Charlene.|You do good work.

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… Read more

The oldest that I found for transplants  is 75. As I am 79 I am past the age of optimism. 🙂

Hi Paula,
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… 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?

Just saying.

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… Read more

Sorry Charlene. Chocolate makes me cough. (I eat it anyway).

Hi Charlene,
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… Read more

Hi Charlene,
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… Read more

Wow!
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… 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… Read more

Oh I forgot to mention that UCD in Sacramento Ca is having two studies. One for hypertension and the other for Bacterial.
Also they have a new device on the market that gives a blast of oxygen when it is needed. I am researching these things as of now. I just found out Wednesday.

 

Hey Charlene,
It’s Bill again with an update.
I am in pulmonary rehab. I am half way through and although it hasn’t helped my breathing much it has taught me to slow down more. I found it difficult to slow down but with the constant checking of my oxygen levels and my work out I was able to determined how much to slow down as I have always… Read more

It sounds close to your banana ice cream recipe. So are you a banana addict? 🙂
I will try it.

 

Cooper,
There is no direct connection to ipf because of Agent Orange. (dioxin)

There was a veterans that had their compensation granted anyway because it is a chemical and there is data that says chemicals can cause IPF. Weak I know but a letter from your doctor stating there may be a connection helps. Anyway I should know October or November… Read more

As you know that is why it is called ideopathic. 🙂 There was two cases approved for F105 pilots because of the 7808 engine oils that gave out a mist. I also was in contact with the same oils by working on the same jet engines but it looks like they are looking the other way on this one.
You would think with all of the people with ipf they… Read more

Yes I am in a city named Citrus Heights 20 miles North of Sacramento.

Thanks Charlene,
I pressed the wrong reply button. But I copied and pasted the same info I sent to you.

BTW the banana ice cream recipe was awesome. ( I used a little too much milk but will compensate next time).

Please see response on Charlene’s reply as I pushed the wrong reply button. (it won’t happen again).

here is what I wrote: 

I have ipf and have been working with VA on getting compensation. I have several documents that do not directly tie dioxins to agent orange but do say that it may cause lung diseases being as it is a chemical.. If… Read more

I have ipf and have been working with VA on getting compensation. I have several documents that do not directly tie dioxins to agent orange but do say that it may cause lung diseases being as it is a chemical.. If your husband was in Vietnam it is a very good chance he was affected. I also found a VA claim that has  approved compensation for… Read more

being as the hypothalmus in the brain controls body heat ( I just looked it up)what does your pulmonologist say?

 

 

Yes to all of the above.
The problem is, I am trying different medications to stifle the incessant cough which may be a contributor. I really get foggy with gabapentin but it seems to help a little. I quit it because of the fogginess. I am and present trying Tessalon but again it doesn’t seem to be very effective although I still get fogginess… Read more

Okay thanks. Sounds good. I will pass it on to my cook. (wife)

Okay,I would like to see what the banana recipe entails as I would just mix a banana in with vanilla ice cream. Just lazy I guess. 🙂

That is weird because I am opposite. I do not tolerate cold well. I have to wear a jacket to any functions I go to if the room is air conditioned even in my house. I even have to drink warm water to keep from coughing. I do have a hot flash ( I know I am a guy) when I get into a coughing spell that only last a minute. I do although suffer… Read more