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Thom replied to the topic Vast Majority of Americans Are Unfamiliar With PF Symptoms in the forum Flash Briefings & Podcasts 3 years, 2 months ago
Post Script.
Years before i was diagnosed my GP wondered aloud why I was always short of breath. He even sent me for CT scan and ultra sound. No one said a word
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Thom replied to the topic Vast Majority of Americans Are Unfamiliar With PF Symptoms in the forum Flash Briefings & Podcasts 3 years, 2 months ago
If i had to guess, I’d say the vast majority of the population worldwide knows little about the disease. Its important to keep it out front.
Thom
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Thom started the topic Laser Treatment. Whats going on? in the forum Using Our Forums 3 years, 2 months ago
I try to read all that is posted on this. Please pardon me if i skipped by this. But ive not read anything lately about those that have been getting laser treatments. Are there any updates on treatments and how are those of you doing?
Thanks…..Thom
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Thom replied to the topic I Did Everything Right, So Why Did I End Up With Pulmonary Fibrosis? in the forum Flash Briefings & Podcasts 3 years, 3 months ago
Hello Charlene. It’s always nice to hear from you.
As for my cousin passing from IPF, I’m convinced hes the genetic link for me. Unfortunately as most everyone, families become scattered. I still have several relatives on the west coast but I can find them.
Just do what you know to take care of yourself, there in nothing that any of us can.…[Read more]
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Thom replied to the topic I Did Everything Right, So Why Did I End Up With Pulmonary Fibrosis? in the forum Flash Briefings & Podcasts 3 years, 3 months ago
I was a self employed ornamental iron worker for over 54 years. I worked with my dad, my dad worked for his dad, and my son, 44 worked with me. My son shows no sign of IPF, my father died of pancreatic cancer, his father heart failure. At a very old age. The closed indoor environment was terrible. I never gave it a second thought. Weld…[Read more]
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Thom posted a new activity comment 3 years, 4 months ago
Hi Jim, its bern a rough ride, but i personally think im past most of the bumps. Im 71 waa diagnosed a bit over a year ago. The Ovev is terrible, but it does work, at least for me.
Keep a good attitude is the best i can say. I was pretty miserable for many months, im beyond that now. Truth is if i didnt have to see dr so often o wouldn’t…[Read more] -
Thom posted an update 3 years, 4 months ago
@kit-snider
Hello and welcome. Lots of good info here.
Thom -
Thom posted an update 3 years, 4 months ago
@janis-henry-gorsline. welcome aboard !
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janis gorsline and
Thom are now friends 3 years, 4 months ago
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Thom replied to the topic Side effects of OFEV in the forum Ofev (Nintedanib) 3 years, 4 months ago
Happy new year to all. Its been some time since I’ve posted here.
The liver (minus onions) caught my eye.
Ive been on ofev close to a year. Its a brutal drug to deal with. Ive still not figured out what to expect each time i swallow a pill. Im on 100 mg, 150 was too strong.
After the first several months a liver doctor at Yale sent me for…[Read more] -
Thom replied to the topic Overheating as a Patient with Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 3 years, 9 months ago
I too have a terrible problem sweating. I worked outdoors for 53 years and never broke out in sweats as I do now. I awake some mornings in the bed sheets look as though water was poured over me. The first time it occurred I freaked out thinking I wet the bed!
The other day I felt a bit tipsy as I was sweating. I checked my ox level and I…[Read more]
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Thom replied to the topic Ofev and hangovers. in the forum Ofev (Nintedanib) 3 years, 9 months ago
Have your liver checked I’ve never been a drinker but now I have cirrhosis
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Thom and
Cynthia are now friends 3 years, 10 months ago
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Thom replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 3 years, 10 months ago
I’ve been on ofev for several months now.. I had no reaction for the first two weeks than all hell broke loose. I was told to stop for a while. My dr suggested 100 mg instead of the 150. For about 2 weeks I was vomiting and diarrhea. It slowed down, but stomach problems. Dr increased omeprazole to 40 mg. It helped but not a lot.
Th…[Read more]
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Thom and
Tony Buxton are now friends 4 years, 1 month ago
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Thom and
Lorraine are now friends 4 years, 1 month ago
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Thom replied to the topic Chronic Sorrow as a Patient with Pulmonary Fibrosis. in the forum Young Adults Living with Pulmonary Fibrosis (40 & Under) 4 years, 1 month ago
Hello Charlene,
Although it’s difficult for me to identify what you feel with your IPF, I do understand. 30 years ago I had a TBI the result of a car accident. Following the injury and 2 brain ops, I became a different person. One that I did not know or recognize. I was scared of leaving my wife and kids behind. My parents and siblings I’m…[Read more]
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Thom replied to the topic Laser Therapy Part III in the forum Pulmonary Fibrosis Awareness & Advocacy 4 years, 1 month ago
I’m curious to know what the pulmonologist are saying about cold laser therapy. So far I have not read anything. When I mentioned it to my doctor he actually seemed annoyed that I would even bring it up, his reply was if it’s not FDA-approved I’m not interested. Has anyone’s pulmonologist seeing the results so far of the use of the cold laser.…[Read more]
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Thom and
Malcolm Mann are now friends 4 years, 2 months ago
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Thom replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 4 years, 2 months ago
After almost 2 weeks on ofev with zero symptoms, all hell broke loose yesterday. I skipped it today because I’m still at it, will try again tomorrow hopefully it takes a turn for the best. Thom
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