[CHVR]

My question would be…How serious does one’s lung issues have to be, for a hospital to justify doing a lung transplant for someone? I was diagnosed in November 2017 with IPF, and my pulmonologist says that in that time, I have lost about 15% of my breathing capacity. I doubt I would be considered a serious enough case to warrant a transplant. I am also 78 years old…will be 79 in October…and so my age would most likely disqualify me, I would think.

[CHVR]

Hello to All: This is my first time to post a message. I was diagnosed six years ago with IPF…late November 2017. I have been on OFEV since mid-December 2017. I took about 9 months before the full effect of the side effects kicked in for me. My big issue is going to the bathroom frequently. I probably spend 4 to 5 hours, out of every 24 hour period on the toilet. This includes a trip to the toilet around 3:00 AM, in the middle of the night. Everything moves very slowly, so I might be on the toilet for 45 to 60 minutes for one, two, or three of those bathroom trips.

This has made traveling away from the house difficult, if I go off for more than 60 to 90 minutes. So, I try to do several errands at a time, such as two doctor appointments, a trip to the drug store, the grocery store, the bank, etc. My goal is to avoid having to use a rest room when I am away from home. To be able to do all those errands in one afternoon, I start taking imodium the night before, so that before I leave the house, I will have 3 to 4 imodiums in my system.

I too do a lot of coughing, especially in the mid-mornings for about an hour. My ENT doctor says it is post-nasal drip and my hyatel hernia. I take nexium to avoid heart burn, but I have to sleep propped up at night to avoid acid reflux.

I do think that OFEV has extended my life! It is supposed to slow the progression of the disease by 50%, and I think it is doing every bit of that. I feel blessed, because I could have something much worse…ALS, pancreatic cancer, dementia, etc. After 6 years, I am thankful that I am still here. I am on oxygen, with a stationary concentrator at home with a 50-foot cord, and a portable device to run errands.

Does anyone have a suggestion as to how I could reduce these frequent bathroom trips??? Thank you, Charles Van Rysselberge in Gainesville, GA