[Kristine Miller-Pinti]

Everyone’s experience is different, as noted previously.  It is important to stay as healthy as possible, including exercise, maintaining normal weight, good nutrition and correction of any metabolic illnesses including abnormal cholesterol and diabetes.  It is helpful to have a pulse oximeter to check blood oxygen saturation (they are available at any pharmacy or on amazon and are inexpensive).   It is hard not to look ahead and worry, but try to live your life now and if there are places you want to go or things you want to do, plan for them now while you’re able to do them.  It is worth looking into what is involved with lung transplant in case that becomes an option if it becomes difficult to function even with oxygen.  I wish you all the best.  I was diagnosed 5 yrs ago and did well for 3+years.  I could not tolerate the meds.  I had a single lung transplant 1+ yrs ago and had a rough 6-8 months after, but am now able to do what I want, though at a slower pace.  A supportive family makes a big difference.

[Kristine Miller-Pinti]

The pulmonologist told me that I was expending an additional 400-600 calories a day just from the work of breathing harder.  Also when breathing harder one also gulps in more air which make stomach and bowel feel fuller and can further increase work of breathing.  Oxygen obviously helps and also pacing one’s activity and rest.  Weight loss was my first sx, and starting on OFEV didn’t help because of GI sxs and loss of appetite.  The loss of appetite is hard to deal with.  After my transplant I ended up with a feeding tube for 6 mos because I could not get the calories I needed.  Eventually my appetite returned.  I drank a lot of milkshakes then.  Prior to surgery my wt was 100# (down from 125#), after surgery went to about 88# and continued tube feedings and multiple small feedings until I reached 110#.  I have been able to maintain that wt for 9 mos, and would like to gain a few more because it is still easy to lose and not so easy to gain it back. Talking to a nutritionist helps.  Good luck!

[Kristine Miller-Pinti]

I was diagnosed with IPF in 2017 and did well for two years. I couldn’t tolerate OFEV or esbriet. Late 2020 I started going down hill rapidly, so at age 68 was evaluated for transplant. I had a single lung transplant and a complicated 45 day hospital course and was discharged with a feeding tube and bipap machine. The feeding tube was removed at 5 mo and just stopped bipap at one year. At 13 mo’s I hiked up Seneca Rock trail and while I was moving slowly I was able to make it. I feel good and definitely am glad I had the transplant. I just move slower and rest more than I used to. I wanted to have the time with family and friends. I’m careful, but am going out more – just continue to wear a mask. I take one day at a time and try not to worry exsesivly about cancer and rejection. I think everyone has to decide what is best in their situation. In mine my family wasn’t willing to let go yet.