Thomas Johnson
Forum Replies Created
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I was diagnosed with CPFE about three years ago. For the past year I’ve been on 6-7L. of O2. I thought I was ready to die last fall, but I’m still here at 77. I was on both therapies for about a year each, but my test numbers kept falling so I quit on doctor’s advice. My last O2 test was a year ago and my DLCO was 31%. I was put in home hospice but released when I hadn’t died after six months! I’m basically homebound these days.
Blessings to all.
Tom
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I was diagnosed almost three years ago, but had some symptoms for years before. I tried OFEV for almost a year, but the side effects (BM) became too much, so I switched to Esbriet, and had no significant side effects. Unfortunately, my IPF progression continued unabated. My pulmonologist said I should consider stopping the meds because they were obviously not helping me. That was about ten months ago, and my symptoms go up and down almost daily, but generally down. I am under palliative care and have doubts I’ll see another Christmas. But at 76, I’m prepared for that outcome.
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Hi Charlene,
I have had similar experiences as you. My BMI hovers around 30 and I think the lack of exercise has something to do with it. Besides the dyspnea I have, I need a complete knee replacement, which severely limits my exercise. Unfortunately, I am past the age for safe major surgery.
I really have not noticed any lack of appetite.
Good luck!
Best, Tom
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End of life is absolutely a legitimate topic here. What is IPF other than a terminal disease?
I am “lucky” to have contracted IPF (and emphysema) in my 70s. I can say I have lived a long and fulfilling life and the “end” is inevitable for us all. We just happen to know, roughly, when it will happen. That knowledge gives us the opportunity to plan for the end, financially, spiritually, with family, and perhaps engaging in unfinished bucket list activities. I don’t worry about it because worrying will only depress me and not change anything. I would rather accept the situation and make the best of my time remaining. P.S., it helps to believe there is light on the other side!
Tom
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I have suffered from a hiatal hernia for 30 years. A daily dose of Prilosec/Omeprazole has controlled it very well.
Tom
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Hi Marj,
I wouldn’t be concerned with the increases in this latest PFT. So many factors can cause this. Better to monitor changes over many test dates to determine the trends. I use an Excel spreadsheet to chart all my PFT results over time…really helpful! I have found my pulse oximeters to be generally unreliable in accurately reporting HR. I’ve seen it jump from 30 to 120 to 80 in a 10 second span. Best of luck.
Tom
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For the sake if my four kids I hope IPF is not genetic. I was diagnosed less than 24 months ago and despite taking OFEV and Esbriet over the past 19 months, my pulmonologist just yesterday referred me a palliative care doc, saying “we’re at a dead end.” Although there has been no IPF in my family that I know of, my mother died at 93 of emphysema. I believe my IPF is more a result of smoking >80 pack-years of cigarettes by age 46 than any other factors.
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I’ve missed a few midday doses, but that’s all. I have no side effects from the full dose (unlike OFEV).
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I’m 74 and was diagnosed two years ago. My BMI is a bit over 30 and I have been waiting for the reduced appetite to befriend me! No such luck. I did lose some weight last year when I was on OFEV (diarrhea), but since I switched to Esbriet I have no diarrhea but also no weight loss, though my legs are thinner than pre-IPF.
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Hi Allan,
I’m in about the same condition as you (I think). We went to London, Paris, Venice, and Rome for two weeks. Flying wasn’t a problem for me, although I requested wheelchair assistance both ways through airports. We’re going to Hawaii in a few months and I have no concerns unless I suffer a significant decline. I use an Inogen G4.
Good luck and have fun!
Tom
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Thank you all for your responses. I’ll do some more digging!
Tom
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Hi Christie,
Yes, I had all the heart tests including ECG (EKG), Echo, treadmill, and CT. All checked out fine.
Tom
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Hang in there, Annette…you just might have MANY good years ahead. If the OFEV bothers you (like it did me), try switching to Esbriet. I’ve had zero side effects after three months and my condition has improved.
Enjoy your ski trip!
Tom
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Hi Wendy,
So happy that you’re recovering so fast. I was on the downhill until about 6-8 weeks ago when my switch from OFEV to Esbriet took effect. No more nasty side effects and feeling much more like myself.
I hope you continue improving!
Tom
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No – Esbriet
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I was on Ofev for 12 months. My IPF got worse, so my doctor agreed to switch me to Esbriet six weeks ago. No more diarrhea (thank God), and no side effects from the Esbriet, including no nausea. I’m hoping this trend continues, and that it proves more effective than Ofev. Good luck to you all!
Tom
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Got my booster ten days ago…Pfizer. Zero side effects. Feeling indestructible (well, almost, except for the IPF!).
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@dwhetton13
Hello Di,
I started 150 mg/day OFEV 4 or 5 months ago. My only notable side effect is diarrhea, which is “usually” controlled by Loperamide (Imodium). I’m 73.
Good luck!
Tom
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Can’t blame yourself, Kathryn. It was HIS decision to make, and you already gave him your advice. Sh#t happens…sometimes you are powerless to affect it. Very sorry you lost him.
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Hi Deb,
I am 2.5 years from my diagnosis and have tried both OFEV and Esbriet. Neither one seemed to slow down my IPF, and OFEV gave me frequent and sudden diarrhea at inopportune times…not much fun! My pulmonologist recommended I discontinue those drugs as the “benefits” were not offsetting the side effects. Neither drug affected my weight one way or another.
I hope your experience will be much more beneficial.
Best, Tom
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Hey Alex,
At 74 I tend to bruise pretty easily, but since I started OFEV in January, it’s been ridiculous! Plus, my skin seems thinner and breaks open frequently…and more bleeding, too. Not sure if it’s the OFEV or one of my many other medications.
Tom
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Hey Alex,
At 74 I tend to bruise pretty easily, but since I started OFEV in January, it’s been ridiculous! Plus, my skin seems thinner and breaks open frequently…and more bleeding, too. Not sure if it’s the OFEV or one of my many other medications.
UPDATE: I copied this from the OFEV web site:
“OFEV may increase your chances of having bleeding problems. Tell your doctor if you have unusual bleeding, bruising, or wounds that do not heal. Tell your doctor if you are taking a blood thinner, including prescription blood thinners and over-the-counter aspirin.”
Tom