[Mike]

My 2 cents:  Like many words in our new woke world, many are not used correctly.  Pride is one of them.  Pride has been adopted by the gay, and now the LGBMQ communities.  This is, in my opinion, a correct usage of the term, as for most of recorded history, these groups were treated inhumanly.  By expressing their pride, it showed a sense of solidarity with others, and a statement that discrimination against these individuals is no longer acceptable. Most of us in the US don’t really put these individuals into these categories, and they enjoy full inclusion and equality in our society.

Having said that, I disagree that ‘pride’ should be used to highlight a disability.  It would be more compassionate and inclusive to use the words, ‘Acceptance’ or ‘Understanding’.  One can’t really be proud to have a broken leg, cancer, or IPF.  (Maybe one can be proud to have lost a limb in service to their country,)

[Mike]

I too have been unable to take Ofev.  It made me feel crummy and not just the diarrhea.  It gave me an unwell feeling all over, so I gave it up after realizing that it does slow the progression of the fibrosis, but one’s life is not appreciably lengthened.  I thought that quality of life is more important than length of days.  I don’t recommend this to anyone.  It was my own choice for many reasons.  My lungs are quietly closing and the end will not be too far off.

The reason for my post in this thread is to pass along my method of keeping a healthy appetite.  It is legal in my state, so I started taking an occasional low dose edible THC candy. My diet is not particularly healthy (Ice cream, cookies, chili, burgers, etc) but my weight is slightly increasing and I’m happier all around.

[Mike]

Dear Rumana, Don’t be apologetic about your long post.  I read it all, and I could really feel your concern and love for your Mom.  I wish for you that she will remain comfortable.  I’m the same age, 74, and my PF came crashing into my life in April of this year.  I guess that I have a fast growing fibrosis as my condition is worsening quite rapidly, and I’ve come to find peace with myself, just knowing that there is no cure, and in my case, the end is not far away.  I’ve made my peace with everyone. I have 3 children and 5 grandchildren, so it’s not easy to face the future.  But I’ve found great peace in my relationship to God, and I don’t fear death any more.  I hope my post doesn’t upset you.  I wish and hope for the best for you and your Mom.  Nobody want to leave this earth (except maybe Elon Musk) but we all must leave.  So that’s my story and maybe not so helpful to you.

But in your post, you neglected to say if your Mon is on oxygen therapy.  If she has an O2 saturation of  34%, she must get supplemental O2 or she will develop serious problems with other organs like her heart, brain, kidneys, etc. I hope that you can get help in paying for this, because it’s very important.

Good luck and God bless.

[Mike]

My 2 Cents:  Regarding the end days, I have thought and talked a lot about what happens. I have been referred for hospice, and that care should start soon.  As many of us are concerned about the fish out of water scenario, the answers that I received is that when the time comes when our lungs finally crash, one is usually given drugs like morphine, and something for relaxation.  If one is relaxed, then breathing comes easier.  I’ve wondered about morphine, as I was told that there isn’t any pain.  It must put one in an “euphoria”, where we aren’t very aware of what’s going on with our lungs, and then one peacefully passes.  Like myself, many of us don’t want any extra push to go to the end for religious or moral reasons.  Morphine does not make death come sooner.

Another thought that I’d like to share about our final time on earth is the use of ventilators.  If one is intubated, there is no coming out of that alive.  One may be extubated, but the lung function is greatly decreased from the function that put one in the terminal situation in the first place.  Maybe if one wished to stay alive until some loved one arrives, then it may be considered, but the patient will never know the person’s presence.

[Mike]

My 2 Cents:  Regarding the end days, I have thought and talked a lot about what happens. I have been referred for hospice, and that care should start soon.  As many of us are concerned about the fish out of water scenario, the answers that I received is that when the time comes when our lungs finally crash, one is usually given drugs like morphine, and something for relaxation.  If one is relaxed, then breathing comes easier.  I’ve wondered about morphine, as I was told that there isn’t any pain.  It must put one in an “euphoria”, where we aren’t very aware of what’s going on with our lungs, and then one peacefully passes.  Like myself, many of us don’t want any extra push to go to the end for religious or moral reasons.  Morphine does not make death come sooner.

Another thought that I’d like to share about our final time on earth is the use of ventilators.  If one is intubated, there is no coming out of that alive.  One may be extubated, but the lung function is greatly decreased from the function that put one in the terminal situation in the first place.  Maybe if one wished to stay alive until some loved one arrives, then it may be considered, but the patient will never know the person’s presence.

[Mike]

I found new culinary freedom with my IPF onset.  I have a fast developing lung scarring and I don’t like it, but I accept it.

So I’ve learned to cook recently, and here’s my response to my diagnosis: calzones, pizza, chocolate chip cookies, banana bread with vanilla frosting, various cakes and muffins, chili con carne, and a large bowl of ice cream every night.  Home made chicken soup with homemade bread, an occasional salad, and fruit keeps my plumbing moving.

[Mike]

I’ve joined the forum and have scanned a bit of the info here, and I don’t seem to be able to find anyone with similar symptoms and/or disease progression as myself.  I was told by a doctor a few years ago that I had IPF.  As the Xray that discovered the IPF was taken because I had colon cancer, the IPF was put on the back burner.  I beat the cancer, but my lungs are now quickly shutting down.  I experienced an exacerbation in Mar this year, and a CT scan showed advanced scarring, and was started on O2 therapy.  I started on occasional use at 2 LPM.  Since then, (7 months) I now need about 6 LPM for maintenance.  Any small exertion sends my O2 saturation into the 70s.  A moderate exertion, like going up a few stairs, and my O2 goes to the 60s and my pulse is 100+.  Now I need 10 LPM for a few minutes to get the O2 back to 90. I took Ofev for a couple of months, but stopped because it was making me feel sick, and I read some studies done with patients on Ofev.  A cost/benefit analysis made me choose to not be sick in my last months.  A long story.

So my reason for joining the forum is to get some insight into end of life issues.  My doctors won’t answer me, just give me a sad eyed shrug.  Barring a heart attack or stroke, I imagine my end will be like drowning slowly.  Like a fish out of water.  I hate being so negative, as so many forum posters are doing very well.  But I accept my mortality, and I am not sad or worried as I have a deep faith in God, and his Son Jesus.  I’d just like for someone to describe to me what to expect if they’ve had someone go through this.

[Mike]

Hey Randy,  I read this thread thoroughly and until I saw your post, I thought that I was alone.  Around one year ago, I was treated for colon cancer.  The surgeon did a great job, but the radiologist who read my CT scan, while looking for traces of cancer, saw my IPF.  That diagnosis didn’t concern me. I was thrilled that I beat the cancer, and was working on getting back my energy.  After 2 months, I suddenly couldn’t walk 500 yards without being very winded. I then had an exacerbation in April, and I thought I was dying.  I didn’t, and so I saw a pulmonologist, an expert at a prestigious Boston hospital.  I started on Efov, and oxygen. My lung capacity is decreasing rapidly.  My sister had IPF, and died in 2 years.  And she was a health nut.  I was casual about my healthcare, and was a smoker.  I worked as a roofer and never used a mask.  I worked with asbestos, benzine vapors and many hazardous materials.  And when I came home at night, I relaxed by working in my wood shop in my basement, causing clouds of dust.  My luck ran out this year, and now 7-8 months since diagnosis, my O2 requirements are rapidly increasing.  I don’t want to discourage any fellow IPF travelers, but my prognosis was 3-9 months.  I’m sure that my lifestyle made my IPF inevitable.  But I think of my younger sister.  24 months.  And I’ve read some studies that put life expectancy after diagnosis as 3-9 months.  The point of my post is only to say  that IPF is different with every person.  I too have heard of people living 20 plus years after diagnosis. I wish the best for all my fellow IPF travelers.  But for many of us, we should accept that it can move fast. I was always a believer, but my recent travails have increased my belief in the promises of Jesus, and I am happier and more contented than ever in my life.  Trust in Him.

[Mike]

I’ve felt rotten from Ofev also.  Imodium stops the runs, but the medicine just made me feel sick.  I did a lot of reading on the studies done on Ofev and it’s effectiveness.  I read some trial studies that Ofev does slow the progression of IPF, but does not extend survival times.  I asked my Dr., and he said that he also saw the study, and doesn’t have an idea as to why survival times were not extended.  So I stopped taking it.  My lungs are crumbling and my endurance is non existent, but I feel otherwise fine.  After a good rest, I forget that I am dying.  The author, Jack london said once, and I’m paraphrasing it:  ‘I would rather live now than to work to extend my days”.