[Carl Stidsen]

Define “High Altitude”. I’m a flatlander , living on the East Coast . My Home is 500 feet above sea level . . My O2 levels start dropping at 3500 feet above ground level (AGL) , and lately airline flights (Cabin Altitude – 8,000 feet) have become difficult , even with the setting on 3 or 4 LPM. Count yourself lucky . When your numbers start to fall , you can move to progressively lower altitudes and put off the effects of IPF that much longer.

[Carl Stidsen]

I was diagnosed in 2017 . I’m 81 . A lung transplant is not in my future – way too old . OK – move on with the rest of your life , however long that is . Accept that you’ll go when God decides . Meanwhile , you have a life to live. As Red said in “Shawshank Redemption” : “Get busy living or get busy dying . ”

[Carl Stidsen]

Yes . I’ve been diagnosed for 7 years now , and often have to loudly cough ( into my sleeve) . People often think its a sneeze and say “Bless you” . Usually it’s a series of three coughs . Just another way of Nature saying “you’re still alive – accept the Blessing”

[Carl Stidsen]

I think an official diagnosis – for good or bad – is the way to go. I was short of breath for 30 years , then coughed, hacked and wheezed for a couple more years ( maybe more) before a CT scan showed opacities building and “crackles” in my lungs . So, I got the diagnosis , (IPF) and the standard 5 year “death /life sentence”, and a recommendation for “Palliative Care” ( i.e. keep the old coot comfortable) for my declining years.. That was 5 years ago . I’m 80 now – beyond the lung transplant window. . IPF is incurable , but maybe meds will help you feel better . For awhile. At the least they will drain your bank account so you will die poor or live poorer. Find out what you have and how good or bad it is so you have a base starting point. Ducking the diagnosis because you don’t want to know the truth is just sticking your head in the sand. (Don’t do that – very hard to breathe sand….). Look at the bright side – most people don’t know what will kill them . We do. Lucky us. At the 5 yr point , I’m not using any meds , and use my Inogen POC at the 2 or 3 setting . It will get worse , but so far it is not painful . I don’t dwell on it , being more interested in Quality of life rather than quantity. For however long I have.

[Carl Stidsen]

Acupuncture by phone ? Must be long needles …

[Carl Stidsen]

I’ve been diagnosed with IPF for 7 years now , and I’ve found Oxygen to be the one thing you cannot do without , I don’t know why folks are afraid to start using supplementary O2 to bring their Blood O2 levels up to somewhere near normal ( mid-90s). I had two Air Force reunions in Colorado Springs (elev. 6,000) and Cheyenne ( elv 7,000) and was barely able to get around. That’s when I saw a Pulmonologist. When first diagnosed I fought the notion of taking a Concentrator along .on a flight to Europe, so I didn’t . BAD choice. At the cabin altitude of 8,000 feet , I couldn’t expand my diaphragm enough while sitting down , so I had to STAND in the back of the plane for most of the flight to breathe deeply enough . The Cabin crew (Aer Lingus) understood and let me stand there for 5 hours, not bothering them and staying out of their way.. Other Airlines may not let you do that. The “Suitcase” concentrator with a plug another person mentioned is designed for IN-Home use . Medicare wanted to send me Oxygen bottles to drag around . I said to hell with that , and bought a portable concentrator and a couple of ( expensive) batteries with my own nickel . I researched the field (and you should too ) and bought an Inogen One G5 . It’s not cheap ( around $2700 with batteries and a carrying case) , but relatively small and lightweight ( 5-9 lbs , depending on the size of the battery). but your husband can BREATHE and get around . Some people fight the idea of wearing a Cannula , because they think it makes them look sick or funny . NO – it brings LIFE to hubby’s lungs , and is a lot better than a CPAP mask . Ask your pulmonologist for a determination of how much flow settings work for him because it is a Prescription item. There is paperwork required to get the TSA clearance for him to get the concentrator aboard the Airline fight. that your AAA Travel Agent can help you with . Bring copies , because EVERY TSA guy will want a copy. . My last flight to Salt Lake City (elev. 4500 feet) , I lived on my concentrator – without it , my O2 level was in the mid 70’s. I decided to skip the chemicals (and their side effects) and just live the Quality (not the Quantity) of my remaining years. IPF is terminal Horrible to say out loud but a fact. Accept it and get on with your life . For me , Oxygen is life . Chemicals just make me sick and do not add to the quality of life , just the quantity. But that is just me. And tell your husband to knock off the cigarettes . He is just killing himself faster – and you too , from his second hand smoke ( my wife smoked for 30 years before she died from a series of strokes brought on by cigarettes). OR – take a (sea-Level) cruise to Hawaii. Takes longer but enjoyable if you like cruising ( I do). And most important – TAKE CARE OF YOURSELF. so you can take care of your Husband . Good Luck .

[Carl Stidsen]

I was diagnosed in 2018. and was given the standard five year sentence. I’ve noticed a progressive slide as my lungs get scarred. Now , my lungs sound like cellophane being crumpled . The only thing I’m doing now is sleeping with my Concentrator on at a low setting , and using the concentrator whenever I do anything strenuous , including walking , climbing stairs and driving. . No drugs , no nebulizer. I used to wake up coughing every morning , but now I get a couple hours sleep before my Bladder wakes me up. ( if not one thing it’s another . I’m just glad to wake up !). Then back to my recliner ( can’t sleep horizontal any more) until the next Bladder wake up . ( I’m 80 ). Look into getting ( buying ) a concentrator. Yeah , Medicare will get you one and pick up the tab (maybe) , but your equipment provider will rip off the Govt for the rental ( about 10% of the cost new every month). Insofar as your PF Death Sentence….- Yup . We all have one . Accept it . God will call you on his schedule , not yours . Enjoy the time you have left with your loved ones , hobbies , travel, etc. , however long or short that is. But try a concentrator on a setting recommended by your MD – I’m still on a 2 (of 6) flow setting setting. It lets me sleep . The Docs recommend a full flow CPAP, hoses , tanks , etc. Good for them, but not yet. . So far I don’t need all that . Someday maybe . Meanwhile , don’t forget to live and enjoy your life.

[Carl Stidsen]

I’ve found bright lighting in the house , staying mentally active ( even if it;s on the computer) and when I’m really bummed , taking a long hot shower

[Carl Stidsen]

I was diagnosed late in life at 75, – 5 years ago and given the standard 5 year death sentence . My Pulmonologist put me on oxygen immediately and on Palliative treatment ( read : check in every six months or so and do a Breathing test every 12 months to chart my downward progress. ) Rather than take whatever breathing machine Medicare would graciously allow me , I researched Concentrators , found one I liked and bought it on my own nickel. ($2200 or so) Insofar as Ofev and the other major drug, the price quoted for those two drugs was in excess of $70,000 annually with no guarantee of anything, except side effects. (Thanks a lot) . I prefer quality of life to quantity so have skipped all the drugs and plan to just use the Concentrator for as long as I have left. I sing in my Church Choir , drive , walk and get involved in my hobby passions and in community and social activities .That all seems to help in lieu of breathing exercises. We are all going to die from this condition – so accept your fate and live the rest of your life ( whatever time God grants you) as best you can. . Yes I cough at night and occasionally during the day and now sleep in a recliner with my concentrator on all night at 2 LPM, which helps. The condition is getting worse . No kidding…..

[Carl Stidsen]

I’m sorry to hear of your husband’s situation .IPF is a strange Autoimmune condition that can strike anyone , any time,  at any age , and neither Patients nor Doctors have any real idea when it will build enough to cause termination since Progress varies by individual. I suspect the “Five Year Rule” is simply a handy check point , maybe even an average . But how fast or how slow ? Varies. . I think I’ve had it for many years , but it is slow acting for me. (Diagnosed officially four years ago). Is it possible that your husband had the condition for many years before diagnosis like I did ?  It sounds trite , but all we can really do is medicate (if you want – I’m old so I don’t ) monitor the progress , and keep a positive outlook on life itself  Every Day is precious . Quality , not quantity of life is what counts  .

[Carl Stidsen]

I’d been having breathing problems for several years , and often ran out of breath trying to walk as fast as everyone else and keep up with tour groups . (I don’t exercise, so I figured I was just out of shape ). About 7 years ago, I went to two Veteran’s Reunions in Wyoming ( 6,000 feet above Sea level ) and CO (5,000 feet ) in sequence, I was really dragging – thought I had pneumonia . I cut the last meeting short and drove back east (and to sea level). I felt a lot better . A few months later, I took a flight to Europe ( cabin altitude 8,000 feet) and back and had a very difficult time breathing both ways . So – after returning to Sea Level USA,  I finally  called my PCP. He had me get an X-Ray , then immediately sent me to a pulmonologist (walk test , breathing test, etc.) . He diagnosed / confirmed and he advised me I had IPF and probably had had it for several years. And gave me a five year Lifetime estimate.  My Permanent Handicapped parking hanging tag arrived shortly thereafter. And my Concentrator shortly thereafter , too. That was five years ago. Moral – Ignoring all the warnings did not make the problem go away .