Everyday Challenges of Living with Pulmonary Fibrosis

[rthorntonbresnan-net]

Hello everybody. How does IPF effect your everyday….let me count the ways. Not only the fact I have lost one lung already, that really slows me down and limits what I can and cannot do. I had an experience yesterday that put the heat of the day into perspective. When it gets to be around 78, I stay in because I know the heat effects me. Well, it was around 9:30 and I had to run to Walmart to get a couple of things and it was already starting to get hot. Time I got of the store, back home, it was in the 80’s. I opened my truck door and reached to the items I purchased, started to walk up the step and about passed out. I saw my lung doctor this morning and told her. She said the Inogen just isn’t doing it anymore and need to get back on the cylinder. The Inogen is fine for just riding or driving my truck, but that’s it.

Another thing IPF dictates is where you can go. The altitude stops me from pretty much going anyplace. Where I live is under 5k altitude and much higher then that I cannot breath, so here I set.

Unlike some of you can qualify for a lung transfer, I cannot. I also have a bad heart. I have had 4 heart attaches. I have been told no surgeries at all, I would die on the table.

Try to pickup off the floor, mop, clean, forget it. I start getting to short of breath, I chock. And the chemicals you use to clean will get you.  I have had sever nose bleeds and blew out blood clots.

So, I wish everyone a good life and keep up your courage to fight. One day there will be a cure that doesn’t have side effects. There are some coming down the pipeline now, just waiting for approval.

 

 

 

 

 

 

[john-styles]

I have made lots of changes, I try to remember to bend my legs and not bend over.  This disease is so slow moving that 5 years ago I almost drown, did not realize that I had deteriorated. Scary.  Elevation effect me, I am at sea level but when I go to 3000 feet my oxygen saturation dropped 3 points.  I believe we have faith and take care of ourselves and live our lives to the best of our ability.  If someone asks you to do something that can effect your breathing you have to let them know you have issues.

 

[karen-rachal]

My pulmonologist tells me my progression is minimal so I try to keep up my routine.  Unfortunately my routine is now walking 1 1/2 miles a day followed my a pulmonary rehab video, followed by a two hour nap.  Two other days it is a workout at the gym on resistance machines, followed by the rehab video, followed by a two hour nap.  I still cook dinner and do laundry, but that is about it.  I wish they would let us try some of the drugs they use for other diseases that they are testing pulmonary fibrosis.  I would rather die trying than die waiting.  I have been turned down for transplant and all the clinical trials that I have tried to get into.

[phil-ryan]

I’ve been diagnosed for 2-3 years, and am 76. I’ve moved from not needing supplemental oxygen to using it 24/7, now at level 3 or 4. Overall, I’m coping fairly well, and use a portable generator (Inogen) if I have to go out. I go to a pulmonary therapy session at a local hospital twice a week, for a hour apiece that I find of great help.

The biggest daily hassle is the tubing for the oxygen, which seems to get in the way of everything. Lately, I’ve started using a walker, and it’s always seeming to get tangled in the wheels. Maybe that will improve with practice.

I live at sea level (San Francisco) and would like to visit my sister who lives in Nevada, but the elevation of her
town (5,000′) all but prevents that. This was not so much of an issue when Covid restrictions were in place, but now it’s more noticeable.

[kathleen-ryan]

Hi everyone.  One part of this disease that’s so hard to accept is the physical limitations.  I often start the day with, what used to be, normal plans, and find I can’t complete them.  One activity a day – grocery shopping, or cooking. is all I can comfortably do.  The frustration of this is one of the worst symptoms of this disease.

[bdgaier]

I seem to be able to do less and less each day. I still clean, wash my clothes and do most of my grocery shopping. I  can take my time and take breaks. My biggest issue is all the appointments.  I do have people that take me to many appointments but I hate asking people so often. It’s gotten hard because parking seems to always be far away. Once inside I still have so far to go to see the doctor. I need someone to push me in a wheelchair another difficult thing to accept. I  become so breathless that I end up with a coughing fit that is taking longer to recover from. Quick question….why do those that try for a transplant get turned down? My doctor thinks I should try. I would have to lose weight and I have chronic kidney disease. I also have other issues that my doctor thinks aren’t a problem. Thanks for any information. Everyone take care. Sending prayers. ????

[michael-hurwitz]

Hello, IPFer’s,

I am 72 years old and was diagnosed with IPF about 13 years ago.  For the first ten years it was mild; then in January 2019, the disease suddenly became worse.

Now I am on oxygen 24/7 at 4-5 liters.  Walking is definitely my biggest limitation.  Recently, I attempted to do a 6-minute walk test but after about 3 minutes of walking, my oxygen saturation dropped into the 80’s.  It just is too difficult for me to walk very far any more.

When going to a hospital for a doctor’s visit, sometimes someone will wheel me back to the hospital entrance, which I greatly appreciate.

I now have handicap license plates so, at least, I can park close to the door of a store.

This is my experience with this disease so far.

[tony-hernandez]

Hello Amigos:   I have been diagnosed approx. five years and prescribed Nintedanib (OFEV) four years at 150mg.  I experience the reported gastro irregularities daily, but much relieved by noon time, for some reason.

IPF affects me with some breathing mild difficulty when engaging sloping terrain or lots of stairs.  I do have other medical conditions:  aortic valve does not close completely, my arterial pressure is under control with small dosave Rx, my blood oxygen plummets to 83 during the six-minute walking test, and I utilize a CPAP machine at night.  Otherwise, I climb to the roof and clean with a high pressure water machine, do some electrical and carpentry chores, etc.  I was 78, just yesterday.

It is actually a worry for me that I am not in the advance stages I see reported by members of the forum.  I have a “Palliative” appointment at Veterans Affairs next month.  I don’t really get the real scoop on what I will be facing.   Other than making my Will & Testament, paying in advance for my cremation, giving away some of my books and electric tools, and installing hand rails in the baths, I can only imagine “my last days.”   I hope they do not stretch to “last months.”  I have many questions for the staff at that May meeting.

I dirve myself to VA appointments- 112 miles round trip- without difficulty.  I love to cuss out the knuckleheads on the road.  I still have a sharp sense of humor and can still entertain my family and friends with my stinging comments and jokes.

I have written my Memoirs: 189-pages, and printed to gift to friends and kin whom I cherish.

Perhaps some members can direct me to some online videos of more “terminal” cases.  I hate that term as you probably do also.  Never give up.