I had a series of tests and meetings at NY Presbyterian today. The full battery of PFTs was the bulk of it. And they ran two parts over and over and over... Then a blood gas, of course. I hate those, but the nurse there is really good at it.
My PFTs came back much improved! By 5 percentage points. That may not sound like much when the margin of error is almost that much, but I think this is a real improvement, especially since my last PFTs, just after IVs, were 31% FEV1 done post-albuterol and this series done pre-albuterol. I am at 36% FEV1! I'm thrilled and wonder if returning to cycling has contributed to that, or if I'm just lucky.
The day wrapped up with a transplant patient education meeting in the Millstein building. I was late because the PFTs ran long, but that's OK - the education meeting ran long too!
I'll admit right now my eyes were opened to many things. Some of which are heartening and others dismaying. I knew grapefruit is verboten post-tx, but I had no idea sushi is too. :( And pets. Pets owned before tx can be kept, but somebody else has to deal with the litterbox. And no new pets. But, all in all, given what I'll be able to do versus what I won't; it's still a great deal.
Perhaps what shocked me most was the wide demographic spread of the people in the audience. Black and white, old and young. More white than black, admittedly, and lots more old than young, but still. Quite a cross-section. The patients speaking were all over 50.
I walked in and went into instant germophobe mode and I don't think I'll be able to overcome that. Consciously, I realize that this one group - pre and post tx patients - is probably the *cleanest* group of people, but given the low-volume chorus of coughing, the scattering of masks in the crowd, and the large amount and variety of oxygen tanks like buoys in a grey-haired, wheezing sea - I just about turned and fled.
But reason got the upper hand and I stayed, standing, at the back of the room. I found myself about five feet from someone who I believe had CF. Not unusual as the patients are chiefly a mix of people with COPD, IPF, and CF. The CF crowd was decidedly younger than the rest. There may have been people with other conditions there, too; I don't know. But we're all in the same boat, I suppose.
My dad could have been in that boat. He needed one. And there were post-tx patients there who had been transplanted in their late 60s. I wonder if Dad missed his chance; or if he was even offered that chance. Standing there, I flashed back to that hospital room and was again filled with the frustration I felt then: powerless to do anything and even if I could, it was too late.
I noticed on the sign in sheet that most of the patients were there with their caregivers; but most of them are far more advanced cases than I, too. I will need to go to a meeting or two with Mom, I think, but not a pressing deal. I have a lot to learn at these meetings. But next time, I'm not taking any chances and will wear a mask.
July 28, 2011
July 9, 2011
Live to run, run to breathe? 1st annual Boomer's Run To Breathe
Beside my computer, sitting askew atop my bin of lancets and needles, is a photo. It isn't very large, not even 3x5, and is unframed, awkwardly cut from a larger sheet of photos. It's a picture of my family. It's from that period of time before our family went through the upheavals 2010 wrought upon us. Dad, Mom, myself, all my siblings, my nephew, my sister's now-ex. A happier family in a happier time.
But in that photo, two people are dealing with separate lung diseases, ones which will ultimately be terminal for them both. I didn't know then that the end would come so soon for Dad. As for me, there have been no real surprises since that photo, though the progression of my disease is disappointing.
And lately this disease is getting to me - at long last - mentally. It could never get into my head before; but with the combination transplant testing and watching Dad's rather sudden passing from respiratory failure, I am... well, beginning to be afraid. And what I'm afraid of isn't death itself, so much as a growing suspicion I'm not as in control of my journey as I thought.
But I am still in control of my legs and where they take me.
So today, my legs took me to Central Park for the first annual Boomer's Run To Breathe, sponsored by NYRR and the Boomer Esiason Foundation. (I have run for Team Boomer in the past and will do so again.) It was important to me to attend this not just because of the obvious recognition that cystic fibrosis is something worth running to beat (in a couple of ways), but also because it is about *breath*. Dad may be gone, but he is with me, in my very genes and all the expressions of them. In the mirror, my eyes are my dad's, in my struggling grunts for air, the soundwave is my dad's. So I breathe as he did now; I have to keep on keeping on.
The humidity was high, and I won't kid you: that really didn't help. But my legs were willing, my energy was good, and I arrived at Central Park optimistic for a nice stroll, if not a quick one. Fortunately, I arrived at almost the last minute and, after bidding good luck to a doctor I rode in with on the train, hung around near the start, not wanting to march all the way back to the purple corral. Just let the crowd pass and join in toward the end.
But then a familiar face called out my name; and there was Marci! Now, Marci is a wonderful Fred's Team athlete, dedicated and capable. She's training for her first triathlon and had thus put in seven miles in the park already that morning. Here she was beckoning me into the stream of runners with her, so I hopped the low wooden rail and walked with her. She decided to run with me at my pace, which I was flattered by. It's nice to have understanding company now and then and perhaps I would perform better if I were with a friend. For her part, Marci was nursing a blister, probably caused by her new Vibrams, so was fine with taking it easy (for her).
I won't give a blow-by-blow account of the run. It was pretty typical for me, especially with the high humidity. Lots of walking. Ran into Jerry Cahill at the halfway point. He'd been just ahead of us and had stopped to change oxygen tanks. (Yep, he runs with oxygen tanks!) Spent a few minutes watching him do that, said hi, then got going. He managed to keep up almost the same pace Marci and I were running and finished just a few minutes behind us. Not bad for a 55 year old cystic who needs new lungs!
Anyhow, after that couple minutes break, my legs actually felt GREAT. Like real runners legs, like they haven't felt for a long time. Also, the humidity started to drop, my lungs opened up a little, and the last mile or two were actually pretty pleasant. I would like to know, however, who thought it would be a good idea to have an uphill finish. Still, I picked up to a real running pace for the last 100 yards and found a reserve there that's also been absent for a long time.
After the race, Marci and I walked and talked then grabbed a cab outside the park. She dropped me off at the Boat Basin before heading to a Fred's Team practice. I finished up my day by having lunch and a couple beers with Jerry Cahill, Moni Hendrix, some Boomer staff members, and a couple dozens of Team Boomer runners, which included at least four of us with CF (though I heard there were 14 runners today with CF). For the first time, I met Gunnar Esiason, who is in the "goofy college kid" stage. I wrapped things up by walking down the park to 60th street, breathing in the Hudson river air as I went, and then headed home.
Today I was in control. Yes, my lungs dictated my pace, for the most part, but I'm off IVs, I'm up to 6 miles again, and tomorrow I'm going for a long bike ride. Marci is coming out to Brooklyn and hopefully she can show me *how* to ride a bike properly. Because...well, I think I have a lot to learn yet.
But in that photo, two people are dealing with separate lung diseases, ones which will ultimately be terminal for them both. I didn't know then that the end would come so soon for Dad. As for me, there have been no real surprises since that photo, though the progression of my disease is disappointing.
And lately this disease is getting to me - at long last - mentally. It could never get into my head before; but with the combination transplant testing and watching Dad's rather sudden passing from respiratory failure, I am... well, beginning to be afraid. And what I'm afraid of isn't death itself, so much as a growing suspicion I'm not as in control of my journey as I thought.
But I am still in control of my legs and where they take me.
So today, my legs took me to Central Park for the first annual Boomer's Run To Breathe, sponsored by NYRR and the Boomer Esiason Foundation. (I have run for Team Boomer in the past and will do so again.) It was important to me to attend this not just because of the obvious recognition that cystic fibrosis is something worth running to beat (in a couple of ways), but also because it is about *breath*. Dad may be gone, but he is with me, in my very genes and all the expressions of them. In the mirror, my eyes are my dad's, in my struggling grunts for air, the soundwave is my dad's. So I breathe as he did now; I have to keep on keeping on.
The humidity was high, and I won't kid you: that really didn't help. But my legs were willing, my energy was good, and I arrived at Central Park optimistic for a nice stroll, if not a quick one. Fortunately, I arrived at almost the last minute and, after bidding good luck to a doctor I rode in with on the train, hung around near the start, not wanting to march all the way back to the purple corral. Just let the crowd pass and join in toward the end.
But then a familiar face called out my name; and there was Marci! Now, Marci is a wonderful Fred's Team athlete, dedicated and capable. She's training for her first triathlon and had thus put in seven miles in the park already that morning. Here she was beckoning me into the stream of runners with her, so I hopped the low wooden rail and walked with her. She decided to run with me at my pace, which I was flattered by. It's nice to have understanding company now and then and perhaps I would perform better if I were with a friend. For her part, Marci was nursing a blister, probably caused by her new Vibrams, so was fine with taking it easy (for her).
I won't give a blow-by-blow account of the run. It was pretty typical for me, especially with the high humidity. Lots of walking. Ran into Jerry Cahill at the halfway point. He'd been just ahead of us and had stopped to change oxygen tanks. (Yep, he runs with oxygen tanks!) Spent a few minutes watching him do that, said hi, then got going. He managed to keep up almost the same pace Marci and I were running and finished just a few minutes behind us. Not bad for a 55 year old cystic who needs new lungs!
Anyhow, after that couple minutes break, my legs actually felt GREAT. Like real runners legs, like they haven't felt for a long time. Also, the humidity started to drop, my lungs opened up a little, and the last mile or two were actually pretty pleasant. I would like to know, however, who thought it would be a good idea to have an uphill finish. Still, I picked up to a real running pace for the last 100 yards and found a reserve there that's also been absent for a long time.
After the race, Marci and I walked and talked then grabbed a cab outside the park. She dropped me off at the Boat Basin before heading to a Fred's Team practice. I finished up my day by having lunch and a couple beers with Jerry Cahill, Moni Hendrix, some Boomer staff members, and a couple dozens of Team Boomer runners, which included at least four of us with CF (though I heard there were 14 runners today with CF). For the first time, I met Gunnar Esiason, who is in the "goofy college kid" stage. I wrapped things up by walking down the park to 60th street, breathing in the Hudson river air as I went, and then headed home.
Today I was in control. Yes, my lungs dictated my pace, for the most part, but I'm off IVs, I'm up to 6 miles again, and tomorrow I'm going for a long bike ride. Marci is coming out to Brooklyn and hopefully she can show me *how* to ride a bike properly. Because...well, I think I have a lot to learn yet.
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