First transplant education meeting

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.

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.

NYRR Front Runners Gay Pride 30th anniversary run

On the heels of an historic vote by the New York state legislature, passing a bill that will legalize gay marriage 30 days after the governor signs the bill (with exemptions for churches), the 30th Front Runners Gay Pride run took place in Central Park at 9 a.m. on a very warm and extremely humid Saturday morning.

The route was changed to be the top 5-mile loop, which includes the Harlem Hills and was run counter-clockwise (regular direction) and so was the harder direction, as runners went UP Cat Hill instead of down. And despite internet predictions that the run would be more celebratory party than a run, such was not the case. The bill passage was mentioned during the opening speeches, but that was it. Other than that, I personally found the run to be blessedly run-of-the-mill in execution.

I ran my IVs while on the trains up to the race, changing from meropenem to vanco on a runner-packed 4 train, which drew several curious glances. I continued to draw those looks as I picked up my bib and cap before the race. I guess someone walking aroiund with a strange-looking bottle in their back pocket and a coil of tubing snaking up under his shirt is not the norm. The Vanco ran out just before the race started - great timing. I have yet to run while actually doing an IV and didn't want to try it today. It's bad enough I kept my shirt on to keep the line extension from bouncing around. (I would have loved to have run shirtless today.)

NYRR has their corral system down pat. Excellent. I didn't bother traipsing all the way back to my purple corral - I just waited until most of the pack had passed before joining the crowd. I crossed the starting line 7 minutes and change after the horn. Now, this is important to note because I think I got too close to the chip readers before the race and so my start time was not recorded and my official net time reflects gun time, not net. RunKeeper backs me up on this. So my real time is 1:04:something, good for just under 13 minutes/mile. Water stops were well-placed after the first one, which didn't come soon enough - no water in the first mile. Also, some Gatorade would have been nice.

I wish I had done better, but my lungs are really not in good shape right now. Despite improved PFTs at the doctor's office two days ago, I still feel tight almost constantly and the humidity really didn't help this morning. I was walking more than my legs would have needed and downright gasping for breath at times. Several full stops in addition to walk breaks. In fact, two of those came in the final stretch, where I was in a steady, slow jog I thought I could keep up, but found myself so short on breath I had to pause for a few seconds to bend over and try to suck in an actual deep breath. Didn't exactly work, but did help me keep going.

My "people to beat" targets all beat me, except one. These are the people you notice you keep passing and who keep passing you. I'd have beaten the fat girl in red, I think, except I had to stop in a porta-john on the crossover. I admired her slow-but-steady technique, even if her breathing was so loud and so fast, even on downhills, that I was worried she was going to collapse on the spot. I probably could have beaten the very tall, very overweight black gentlemen I chatted with before the race, but he got the best of me in the last half mile, dammit. I did, however, come in ahead of a girl who, for some reason, thought that a lace top makes good race gear. No one, of any shape or level of fitness, at any time, should wear lace as running clothes. Ever. OK?

This was, in short, a miserable run for me. I couldn't get my mind off my lungs and I couldn't get them to work for me. I am giving very serious consideration to getting a decent road bike fitted to me and switching over. At least on the bike once I get going, I can keep going at a pretty good clip without breaks in the rhythm. Are there bike races in the city? Would I have to become a clown-colored-spandex-wearing, pedestrian-cursing douchebag? I hope not.

IVs started

I was able to postpone starting IVs until last Friday evening, because I knew what was going to happen: fatigue, irritability, sleepiness from the Benadryl, etc. And it has. In short: I knew I'd have to put a big rec x through this Saturday and Sunday. So be it.

I am going to try to get a few things done around the house today, but am putting off exercise. I know a run would probably make me feel better, but I just don't have a lot of energy. I'm planning on doing an after-run work tomorrow of about 4 miles.

So the IVs consist of Meropenim 3x day, Vancomycin 2x day, and tobramycin 1x day, along with 2x day Bactrim orally and a typical Prednisone bump, which by the end of the weekend will be 40% over.

Another one breathes easy

"Breathe easy."

"Breathe easy."

"Breathe easy."

This is the most common comment left in Youtube, facebook, and online memorial guestbooks when someone with CF passes away. It is simple to understand why. After a lifetime spent trying to breathe with less difficulty, losing ground little by little, and ultimately losing the war, death frees us. Whether there is life after breath, who knows? But if there is, we hope our friends are, indeed, breathing easy.

Alyssa Marie Crank -- breathe easy.