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Dying from IPF
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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.
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Hello Scott, thank you for honest experience with this horrible disease. Writing about our eventual outcome is never easy. Please stay as active as you can. Sounds like you have a wonderful partner for the past 50+ years. Congrats on this accomplishment. Take care and check in with us. Mark
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HI Scott, you may want to try going to sea level, I live in Florida and and when I go to our home in North Carolina at 3000 feet I have to use oxygen almost all the time. When I sleep in Florida at about 100 feet elevation my stats stay at 90 but at 3000 feet they go down to 86 so I sleep with oxygen at night in the mountains. When I sit in a chair in Florida I am at 90 to 92 but at 3000 feet I am 90 eventually decreasing to 86. Then we can say to ourselves whats the point, this is a disease where we slowly deteriorate. I am still trying although I admit sometimes I get discouraged. Do not give up. I have been trying and doing laser for 9 months and that is a whole story unto itself.
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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.
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@megan-zetter
Hi Magan,
It’s really enlightening how patiently you dealt with your late dad’s illness during his last five months. I have read the thread partially though but seem to have gained a lot. I am 81 and my wife is in late 77 yrs and is suffering from this life threatening IPF. I admire your courage too to have gone through the pain of losing your dad so dear to you. I am passing through a similar phase. My wife has been suffering for the last about 8 long yrs but lately her condition has deteriorated a lot. She had been very active throughout her life but this slow declined seems to have made her very slow, silent and despondent. There is a lot to learn from you. I must thank you for your very explicit account of your dad. Stay blessed. -
Thank You Thank You Thank You
Megan, ( @megan-zetter ) for sharing your father’s story, for stepping up as a care giver and so eloquently writing of something so personal. When I was 1st diagnosed with IPF in 2010 or so, I searched for anything on what the end looked like. There was nothing available, and the unknown is quite a scary abyss to peer into.
Bill, ( @ramblingolfer ) for sharing your adventure, one of many I’m sure. For going out fighting. I was diagnosed around the same time and could not get on the pirfenidone study (too healthy) but did make the OFEV study. I lost my fight with IPF in 2016, but I did get to poke it in the eye on the way out with a new set of lungs.
Mark, for sharing your story and for moderating this forum.
Charlene, for being you.
I am Humbled and in Awe of you all.
Again thank you for sharing, I guarantee your time and effort are not wasted writing your thoughts and experiences.
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Hello David, thank you for your kind words. Moderating this forum is easy because our members well informed. What a wonderful experience it is to hear everyone’s story. We are all almost the same but yet we are experience this awful disease differently. Take care and stay safe! Mark
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@davidota
Thank you so much for your kind words – they really mean a lot to all of us! We consider ourselves (Mark and I) to lucky to be able to interact with such a special community on this platform. Hearing that people are benefitting from it means the world to us. We so appreciate you and your contributions, thank you for brightening my day with your words. Be well! Charlene.
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