[Scott]

John, ( @caneelbay1 )

Last year we went to the California coast twice to get a feel for the lower altitude.  Yes, I could breath easier but otherwise, I really did not feel all that much better.  We have talked about moving to a lower altitude.  There are a couple of reasons why we rejected the idea.  First, we have lived here for twelve years and have established a network of friends and activities we (particularly my wife) really enjoy.  Second, we have family living near by.  And, for me, a strong reason centers on my love of the mountains of Colorado.  We have lived in a variety of places in the US and overseas.  I worked in Manhattan for seven years.  We have always come back to this wonderful area.

Beyond the obvious hassle factor of relocating, I would just be delaying the inevitable; and given the random/sudden nature of IPF, it would probably not change the outcome or its arrival timing.  Another consideration is the effort of maintaining two residences as you are.  We did that for the twenty years of summering in the high mountains.  I am just not up to doing that any longer.  That said, we plan on taking several trips to lower altitude during the winters, while I still can, to ‘give it a rest’.  Thanks for your thoughts.

Side note:

I wanted to mention to the group that I have been using a new rechargeable wireless pulse oximeter made iheathlabs.com.  It allows me to upload my readings to my iphone and on to my computer to allow me to track them, over time.

 

[Scott]

@mark-koziol,

 

I was diagnosed with IPF two years ago but have had shortness of breath for probably five years.  I have also had PND, it seems, forever.  The primary symptom is at night trying to sleep.  I go to bed with clear sinuses.  After several hours of sleep, I awake and after several minutes, my sinus membranes expand making it difficult to breath through my nose.  There is little mucus.  It makes getting O2 via a nose cannula difficult.  I have tried various allergy meds in the past and nothing has really helped.  Some years ago I starting using Afrin.  Unknowingly I developed rebound congestion and was using it all the time.  BIG PROBLEM.  Finally was redirected to Flonase and Alegra D.  Fixed it quickly.

As it turns out, to stop this problem of nighttime stuffiness, I was told to use Flonase every night, religiously.  I have been doing this for six months and have had very little problem with PND.

Footnote.  I just read that sleeping on your abdomen can be an additional cause.  Unfortunately, this is the only way I can sleep comfortably.  So, Flonase seems to be my solution.

 

[Scott]

Greetings.  I am new to this forum.  A little background.  I am 73 yrs old and was formally diagnosed with IPF two years ago.  However, the symptoms of shortness of breath had been going on for some time.  I retired twenty years ago and my wife and I have spent the last twenty summers living at 10,000 ft in the central Colorado mountains.  We had been very active doing all the things you do there including camping, 4-wheeling etc.  About five years ago I noticed that I would become short of breath more and more frequently, as time when on.  I finally bought an oximeter and realized I was in trouble. After various tests, including a biopsy, it was determined that I have IPF. It was clear that I could no longer be at that altitude.  We now spend all of our time in western Colorado at about 5,000 ft.

Living with IPF is and up and down process.   I can’t do the things I used to enjoy doing.  I am now reading a lot more.  And for those folks who love to read but are faced with the effort of physically acquiring reading materials, I urge you to try ebooks.  Never have to leave your chair!  Other than reading, keeping mentally active and engaged in things that interest me, is really important.  Hobbies are essential in my mind.  The other important factor is a supportive wife and family.  After fifty-one years of marriage, I now realize how truly fortunate I am.  My wife is very healthy and loves to hike and fish, and still does.  She is sympathetic to my condition but pushes me to stay as active as possible.

Treatment wise, I started taking Ofev after the biopsy.  After a year and a half of unpleasant side effects, I just started taking Esbriet.  I am hoping it does, what it is supposed to do, without the side effects.  I recently came down with a bad bronchial infection.  It is the second one that I have had in a year.  In both cases, after a week or so of serious coughing (no temperature), I started on a Azithomycin 5 day dose pack.  The condition gradually faded after about three weeks.  I sense that my breathing is slightly worse now however.  A PFT will probably confirm this.

The reality of this condition was shocking to me at first.  I gradually came to grips with the fact that the end is not that far away.  I have moments of darkness, but they pass.  There is a kind of relief that I now have some sense of my eventual passing.  Many of the above posts have mentioned this sense.  Again, having a supportive wife and family is the most important contribution to making this ‘trip’ endurable.  It is all about taking life, as it comes, day at a time.