Thom

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

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

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]

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]

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]

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]

Have your liver checked I’ve never been a drinker but now I have cirrhosis

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]

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]

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]

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