[Mike Coleman]

I suffered from IPF for 3 years prior to receiving a double lung transplant.  I was down to ‘weeks’ to live.

Regarding activity: I was on 10L oxygen.  My oxygen saturation (sats) would drop to the low 80’s% when I would walk across the room,   My biggest struggle was to take a shower, the activity would completely drain my energy.  I would need a good 20 -30 minutes of doing nothing for my sats to climb back up.  I would best describe the feeling of when my O2 sats were in the low 80’s as a panicky feeling – like you just did a 100 yard dash and had someone in your face….I am not claustrophobic individual – but I would be in those moments trying to catch my breath.

Sleep, weight & fatigue: I slept a ton during the day.  I could not maintain any weight.  I ended up losing 70 pounds.  My pulmonologist said I was burning so much energy just to breathe.  He said my metabolic rate, just from breathing, was like running a marathon every single day.  My muscle was just wasting away.  The best advice I got was to keep active (get into Pulmonary rehab prior to surgery).  Pulmonary rehab will have you exercising while on high levels of 02 to keep as much strength as you can.   Also drink high protein shakes.  The last few months were hard to get to sleep….for me it was a combination of a couple things.  My lungs sounded like velcro with each breath so you could hear and feel each breath when in a quiet bedroom.  Also if I woke up during the night, my mind would start spinning, worrying about everything from family to potential surgery.  I needed prescription meds to help me sleep at night.

Depression:  I really tried to keep a positive outlook the entire time.  I would thank God each day for the things I could still do and not focus on the things I couldn’t.  Additionally, I would also thank God that I had a path out (transplant) vs. being diagnosed with something like pancreatic cancer.  This kept me focused on how blessed I was and how blessed I was to have family, friends, doctors and nurses taking great care of me.

Get evaluated for transplant early and stay positive!   I am alive and well, exercising every day and I feel tremendous post transplant.  God bless you on your journey.

 

[Mike Coleman]

Totally agree!  My biggest fear is that my lungs would fail because of something I did or didn’t do.  Respect your gift of life.