Idiopathic Pulmonary Fibrosis

[sorrybushisfromtexas]

Do any members have idiopathic pulmonary fibrosis or have any family members with it? I was just diagnosed with it because of incidental CT scan. I am not having problems with oxygen levels yet. My brother died because it about 5 years ago and it is genetic related in about 30% of cases. The average life span after diagnosis is 3-5 years. My brother lived 3 years. It is an ugly disease that robs you of keeping your oxygen level at a level that allows you to do anything. I think mine is an early case that will allow me to live longer than the usual case.

[sinkingfeeling]

1. I'm so sorry.

[Irish_Dem]

2. You are doing the right thing to reach out, get support and education.

With many illnesses, getting a dx before a person is symptomatic is good.
You are one step ahead of the situation.

Thinking of you and sending good vibes.

[blm]

3. Sorry to hear.

I had a serious lung issue in 2009 and there was a chance it would result in pulmonary fibrosis. It didn’t. But, for nearly a year, I read all I could find on it. There is just no cure, and the 3-5 year window made me think long and hard how I wanted to spend that time.

The more I planned to fill that time with family and friends across the country I intended to visit and hold in my arms, and laugh with again, the better I dealt with the possibility that it would be my fate.

Some years later a brother-in-law received the diagnosis, and he had a few good years before he declined and then passed.

[sorrybushisfromtexas]

4. Thanks everybody.

I plan to live my life as fully as possible. When you are 73 you already know we have an expiration date, so I plan to keep working part time in education. I have 43 hrs of experience and still enjoy teaching. I want to travel with friends and family and keep a good attitude and continue working in my Optimist club with girl’s softball. I am joining an IPF forum that has lots of members and also try to get in drug trials.

[appalachiablue]

6. Bravo for you, wonderful plans. Enjoy your life all you can, and take care.

[Skittles]

7. that's the right attitude

and people beat doctor estimates all the time

remember that someone is always here on DU, we are here for you

[blm]

8. Great attitude.

I faced the possibility at 54 and found my way towards a peaceful acceptance.
It actually prepared me for however many years or days I have left. Cause….you never know.

🫶🏽
We’re here.

[appalachiablue]

5. Seek top info and care if possible. Keep in touch, too. Very sorry.

[UpInArms]

9. I am so sorry for your diagnosis

I continue to live with one motto …

Live every day as though it is your last … one day it will be.

I hope your days are full of love and joy, my friend.

[nilram]

10. Idiopathic is such a sucky word

I’d think that with a genetic link they would be able to figure out the low level mechanism, at least. IMO, “idiopathic“ means they aren’t trying very hard.

I have that word on a condition that makes my life hellish, but isn’t technically life-threatening. I hope you did catch it early and you can do everything you can to increase your living, decrease discomfort, and prepare to meet the inevitable with calmness and grace.

Sending you grace and strength today.

[WheelWalker]

11. That's a diagnosis you rather not have. My law partner was diagnosed

in 2011. Have you had an open lung biopsy to confirm?

[LindaCollins11]

12. Don't loose hope

I was diagnosed more than 10 years ago. In my case it was from taking drugs to control my RA. I just started a month ago on nighttime oxygen and have been to continue swimming a hour a day. I wish you the best

[flamingdem]

13. I have a friend with it and

she's lived many years beyond the five years and still travels, with a helper.

She inhales medicine a few times a day from a bottle device.

Impressively she's an accomplished artist and keeps producing work.