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Turning Back the Clock

Turning back the clockYesterday was my hospitalization follow-up from my blockage at the beginning of March. We’ve been really looking forward to it to see how much impact Spiriva and my exercising has made on my PFTs.

If you’ve been following some of my posts on Facebook, I’ve walked and ran 60.9 miles in 60 days. I started by just walking 1/2 mile. Then I upped it to 1 mile and soon added running 100′ or so for a week. Then I upped to 200′ for a week. I’m now able to run (a good 8-minute mile pace) for 1/4 mile and several shorter jogs on my 1.5 mile route. Some days are just for walking and taking photos at an easy pace, just to get out and clear my mind.

I love my new routine, but how much does it like me?

I was really pumped to get my PFT results, so we made our guesses ahead of time. I said I felt like a 46% and Beautiful said 40%. She was saving 42% for me because those who know me know I’m a Hitchhiker’s Guide to the Galaxy fan, so 42 is my favorite number, so she changed her guess to 42% when I didn’t claim it.

I took my first blow somewhat relaxed so I didn’t tighten up and constrict my flow.

39% – my number twice in 2011 and my second to last result. Not bad, up from 35%.

Then I decided to give it a huge effort and blow as hard as I could.

40%

For my last blow, I concentrated on keeping everything wide and open and gave more of a “huff!” blow to get as much out in the first second that way. It worked!

42%

It was the highest number on the sheet’s history, going back to Feb. 2010, which was my lowest (maybe second lowest) at 27%. I asked Sue how far back she could see in the system and she found a note from 2005 when I was still below that. Seven years ago! I’m almost certain that this is my highest number since 9/11 over a decade ago. You can look at my increase two ways: my number is 7% higher than last time OR 42% is  120% of 35% – a 20% relative increase. In 60 days.

I’ve got my life back

I feel like I did in high school and my first couple of years of college again. It’s like I turned back the clock and am discovering things that I can do again that I either had difficulty doing or suffered with shortness of breath if I attempted them. This Thursday I noticed that I carried in 3 loads of groceries, including 4 gallons of tea in one trip, and wasn’t at all winded – even after I went back upstairs to continue working. Two months ago, I’d have to stop after a trip or two to cough or rest and would be winded for several minutes once I got back to my desk.

No more! I’m taking no prisoners. I’m not waiting for Vertex. I’m not going to settle for doing my treatments and letting nature take its course, watching my PFTs stay the same or decrease. I got tired of the doctors and RT telling me to exercise. I couldn’t exercise, so that’s where the Spiriva came in.

I got off the couch and changed my life myself. No one was going to do it for me. No one is going to do it for you, either.

Now that I’ve seen the results, I know why they were a broken record at clinic. “Just do what we’re telling you to do,” really carries weight now. It’s changed our relationship because I’m no longer not putting in the effort that they wanted to see as an answer to my quality of life complaints. My quality of life hasn’t been this good since I was 21.

What about your weight, Fatboy?

Sue was there when I weighed in at 116. “But you’re running! Who cares if you’re down? You’re running.” The weight will come back. I did spend 4 days in the hospital not eating anything. Some weight loss was inevitable. Yeah, it’ll come back. I’ve also been lifting weights on Mondays and I generally feel better about my image when I can feel the perimeter of the space my body occupies. Guys, you get it, right?

Stay tuned for what the next 60 days brings? Running 1/2 mile? A mile?

Comments

  1. Yay! I like when I guess your PFT score correctly. 🙂

  2. It’s pretty amazing what our bodies are capable of if our mind doesn’t get in the way. Great job man, keep up the good work!!

  3. Jessica Link says:

    So happy for you! And so thrilled that the Spiriva has helped so much. 

    As you know, I get frustrated when some folks just say *only* “mind over matter! get out there and do it!” when there really are other physiological factors at play that make it harder than just the general, “it’s hard and hurts and stinks to start doing at first” difficulties we all face getting back in the swing of things.

     I’ve had similar luck adding meds when needed, or changing when I do them, with regard to exercise and such, and it can be almost embarrassing to realize what a huge difference they make – but also kind of validating when you get to say, “see, Doc? I wasn’t bucking you or being lazy – I was trying to do something my body was wisely saying ‘NO, not like THIS’ about. I’m just as thrilled you are that we’ve found something that works!” (if only in your head, hahaha). 

    Seriously, just stoked for you Jesse. 

  4. Jessica Link says:

    hahaha, Kristin, I love to do that too. I feel all hippy-dippy and awesome and “I am in tune with my body to the nth degree” – especially when I guess the volume, too 🙂

  5. I read this with SUCH a smile on my face. Congrats! Way to kick CF’s butt!

  6. Joe Sleeper says:

    That’s so great. Monday I have an appt with my cf doc, gonna ask about Spiriva. I’ve been doing great after starting HS on the Trio a few months ago, but sometimes my lungs just feel tight, yet clear. I do take albuterol and symbicort, from what I’ve read on your blog and elsewhere Spiriva might help me further.

    BTW I’m right at my 160 goal weight I set for myself on my 33rd birthday May 25 – a bit early! 🙂

  7. I know a young CF’er that is on the trial for Spiriva and doing amazing!!!! Also, Did you know that one of the head guys at Vertex now was the one on Sprivia back in the days???? 🙂