Someone asked if anyone has gotten Jascady from the VA. I was just approved for it. The last time I looked there are over 125,000 Vet’s with IPF. Hopefully all that need it will be approved. My local VA center was a great help.

Good luck and God Bless

does anyone have a up or down sex drive because of IPF or the Meds. I know this is a very personal subject. It’s all part of this nasty disease. my best to all

My Dr. thinks My IPF may have been caused by wood dust. I have done a lot of wood working in the past. Not only as a hobby but for a living. I would love to hear from wood workers that suffer from a lung disease.

I installed a pass threw tube in the wall and keep the concentrator in another room. zero noise

I don’t know why, sense My heart meds. were changed to extended release I have no side effects from Ofev. Before I had plenty. Anyone with an answer or even a guess I would Love to hear from You

Thank You

David

I had one comment that just floored Me, I still am not over it. My own Bro. said “what going on, You have had this lung thing for 3 years I thought You would be dead by now. I am on ox most of the time, I don’t look sickly. What are We to do, hang a sign around our neck ?

david

I have been using o2 for over a year at night 3lt. I change tubing around 2 wks. I change cannula every wk. I get My supplies from the VA There are great. I also use o2 when active I use the small pony bottle. That can be a pain in ### .I hate this disease not just for what it is doing to Me, what it does to My wife and family They see Me…

Read more

I am close to 4yrs.with IPF. I haven’t had a good nights sleep in a long time. I use ox. at night, the biggest problem is dry mouth, I use spray, water, hard candy nothing helps. If someone could share a helpful tip it would be gratefully welcome.

DJR

HI

I started out the same way 4 yrs ago. At 3 yrs. I started o2 at night. now I need it for longer walks, stairs, can still go without for around the house stuff. OFEV is ongoing battle, I can do 100mg2x a day for about 10 days then switch 1x a day for 3or 4 days. Then start all over again. The diarrhea gets bad for about 2 days. I get…

Read more

Is anyone using the Inogen? How well does work, is it worth the money? I would love to hear from You. I am in 3rd. yr. of IPF. Getting close to needing ox.

Thanks

Can someone tell about their use of a wearable oxey meter. What one to buy not to buy. this info would great.

Thank You

David

Has anyone used AirPhysio breather? Looks like it may help strenghen lungs. Please tell about other devices that may help. I can’t walk much so it is hard to exercise. I”m 3rd year IPF and doing so so.

Thank You

David

I’m in My 3rd year with IPF. Have days I don’t want to do anything because of the pain, all I can say is work it out and keep MOVING even if it’s just a little at a time many times a day. Best wishes’

David

Believe it or not, 1 jelly donut a day does wonders for Me. If I miss it’s to the bathroom.

Hi I had to cancel Our trip Pikes Peek this summer. Hope the move helps.

Deep sea diving, sign Me up.

David I have battled with do I or don’t I. For now I have been taking the lower 100mg OFEV, doing o-k with it. If the 150 mg was all that I could get I most likely would not take it. I tried it for awhile it was not fun. I am 71 about 3 years with IPF.  I feel the same as You. And when it comes right down to it, it is the best way. There are… Read more

I f helps I am in My 3rd year with IPF if things go as they have been I should get 3 or four more years. My wife’s Bro. has the same. He is starting his 9th year. We both take OFEV 100 mg. 2xday.No supplemental OX. yet. I will say My IPF is moving faster then His. Keep in mind that there are over 150 types PF. I wish You well.

DJR0

I had a lung biopsy not sure what it was called. 3 small cuts a chest tube and 3 days in the hospital all to tell what we already knew. I was led to believe it would tell what type of PF I had, it did not.If given the choice to do it again I would not.Not alot of help sorry. I wish You well.
David

Hi Richard, I guess You don’t know 100%. When the Surgeon that did My lung biopsy was looking at My CAT scan He said “sure looks like radiation scaring” after the surgery He very sure that rad. was the cause of My PF. Two other Drs. agreed. All We can is trust the Doc’s know what they are doing. Have a good day.

DJR

I have been told My IPF is rad.& chemo. related. I am 69, I was 22 when treated for Hodgkin’s. When I asked how that was posable I didn’t get much of a answer, so not sure how true it may be. If it is true, I have no complaints, that treatment gave Me a lot of years.

DJR

Hi Dennis , I also sweet a lot and have pimples on My chest and back. I guess it’s just another thing to deal with trying to stay alive. Have a good day.

DJR

Does anyone have an increase of oil on the skin or hair from OFEV. I have been on it for 18 mo. I take 100mg 2x a day. I do have all the common side effects of OFEV . Any feed back will be helpful.

DJR