She walks! Actually, it’s more like lurching. But the point is, I am up and ambulating under my own power. In fact, yesterday during my first physical therapy session, I made two laps down the hall and around the living room — about 200 feet.
My joy at getting vertical is tempered only by the realization that breathing and moving seem to be mutually exclusive at the moment. Each lap required a couple of rest stops when my sats dropped to 76. I think a good part of my increased breathlessness is attributable to my sloth-like existence during the past nine weeks. My muscles have gotten lazy and, as a result, much less efficient in using the precious oxygen doled out by my cheapskate lungs. My hope is that as I get more accustomed to moving, my breathing will improve. In the meantime, walking to the bathroom is a workout, which means more calories burned and that’s a win in the weight-loss column.
One other development that is already helping with my SOB is a medicine change recommended by the good doctors at Barnes. A blood test showed that I have developed methemoglobinemia, a blood disorder that results when an abnormal amount of methemoglobin is produced. Hemoglobin is the molecule that transports oxygen in the blood, and methemoglobin is a form of hemoglobin that can’t release oxygen. Methemoglobin made up 17% of my hemoglobin — which meant about one-sixth of my blood couldn’t carry oxygen. No wonder my sats rarely rose above 88! I stopped taking the errant medicine (dapsone) and my resting sats have climbed nicely to a consistent 91. I even see the occasional 94! We’ve replaced dapsone with Mepron to prevent a recurrence of PCP (fungal pneumonia). It’s a liquid, which is inconvenient but it’s way better than having oxygen-resistant blood.
I think my family may actually be more excited about my mobility than I am. They no longer have to wheel me to bathroom. In fact, anything within my room is now my responsibility — filling my portables, straightening up, putting away clothes. Soon I will be responsible for getting my own water, and will probably develop a new understanding for why my beverage requests so often elicited groans. It’s okay, though. The more I do, the more I can do — and the longer I can do it.
Reality Gasps 
Hi Lori,
I was diagnosed with IPF in Jan 2012, so about 3 months after you. My daughter found your blog and sent me the link yesterday and I already read through the whole thing and found it very encouraging. I can learn a lot from your determination and strength. It has been a while since your last post, how are you doing now?
Deb H.
Hi Deb, welcome and thank you for joining our little community here. I hope you find my experiences helpful in some way — that’s really my whole purpose for doing the blog. Please feel free to ask questions, leave comments, share opinions, vent, whatever helps!
Hi Lori, stick with determination you’re showing! I came across your site today and have a quick question. Email me if you have a moment, thanks!
Lori, If you continue to improve you may be called upon to reassume your motherly tasks and duties. Glad to hear that something has helped. As is so often the case, a medicine for one malady often makes another worse. Keep pushing Lori, that is the only way her strength will return. May God bless you.
Uncle David
Thank you Uncle David!
What great news! It’s encouraging to hear how things are progressing.
“Lord, continue to give Lori increased strength, and continue to give the physicians wisdom as she continues on this road.”
Thank you George. Thank you so very much! Blessings to you.
Praying that you can get new lungs soon! Way to keep up the good work Lori! You are amazing!
Thanks, Joyce! I figure a half a dozen trips to the bathroom and a couple of laps around the living room each day should burn enough calories to keep me on my losing streak. Miss you!