Tuesday, January 26, 2010


Exacerbation is a term which is applied to cystic fibrosis (cf) patients when they are going though a "problem period". It is not out of the ordinary, but they are also to be avoided if at all possible.

Rickie is sleeping just across the room at Mott's Children's Hospital at the University of Michigan. He has been doing very well of late - partly because of the luck of the draw with his particular strain of cf and partly because my wife and I together are extremely vigilant about his treatments, his medicines, and his health in general.

Three days ago we began to notice the cough. Two days ago it became persistent, and we called the doctor. The first nurse suggested we put him on antibiotics and if he didn't get better in a week to take him to our primary care physician. After about 12 hours of listening to the cough get steadily worse, my wife called again, this time insisting on talking to Sue, the nurse we have worked with in the past. The difference is that Sue listens to my wife and uses her information in an intelligent, purposeful way. She said to bring Rickie in - and have him tested immediately. His breathing tests were very low and his x-ray shows material in his lungs. Even in a world class facility, you must continually be your own medical advocate.

Had we listened to the first nurse, Rickie would have sunk far lower in the next 6 days. Instead, he's going to be getting better starting soon, instead of waiting for the disease to take its toll.

So, we should be out of here in no time - like 10 days to 2 weeks and then Rickie will be fine again. We love this Hospital and Dr. Nasr, the woman that runs the pulminary section (and Sue, as I mentioned).

As for swimming, I swam earlier today - 3 miles at a 28:30 pace. It went very quickly. For the record, we have a great swimming clock at the DAC (Detroit Athletic Club - It is a wall-mounted scoring clock with large red numbers. I can see it clearly during my first breath after my flip turns. It has clearly spoiled me (as has the DAC in general)...

I thought a lot about Rickie when I was in the water today. It sometimes doesn't seem fair to me that he has to go through this. But then I realize that it is what it is and that the best we can do is to keep loving him, and keep working with the national cf organization to find a cure, which is where this blog comes in. We will be running our fundraiser again this year, in the first or second week of August. Our goal is to have 2 chase boats and perhaps 10 people swimming. With the exception of the carpal tunnel brace on my right arm and numbness every morning in both arms, I am absolutely ready to go right now. It is funny - the older I get, the more hurt I play.

And as long as I am on that topic, there are a number of people who know what I mean. There is a woman who is a fabulous glassblower near Detroit who suffered a horrific accident and who just keeps pounding away, regardless. She is an inspiration to me and to others. Another guy I just met in his late 50's at the DAC, has broken or torn everything you can break or tear and he just keeps going. He climbed Kilimanjaro last year, expects to climb more this year and is competing in triathalons until his achilles gives out - again. But he doesn't stop. I tell my kids that when you get older, you learn how to get around the injuries you have. "Don't you hate the fact you can't run like you used to, Dad?". "Yeah, but that's why I swim distance now. I found something I can still do."

We joke about wheelchair races when we're 90. I can see laying incapacitated in a bed at 100 - looking over at my roommate and competing with him by seeing who can lift their head more times. I can't imagine ever giving up. Slowing down? Maybe. But stopping? NEVER.

If any of you Masters swimmers have gotten this far, please consider joining us next year. As swims go, this is pretty easy, actually. Both these first two years, we have all gotten out of the water every 3 miles or so for a 5 minute break. "This ain't the English Channel, boys", says our captain, Mike Stevens. I may try to do it non-stop this time - we'll see. But typically, the other swimmers do anywhere from 4 to 8 miles along with me, in 1.5-3 mile shifts, though I expect at least two others to do the entire distance this time around. The hardest part is the flies, I am told, which is the real reason I do the entire distance.

Seriously, I do it because it helps me prove something to myself, it gives me something to keep my mind focused on, and it makes me think I am doing something to help my son and those afflicted with cystic fibrosis. I don't like feeling helpless, and this makes sure that doesn't happen.

So, to Mike Stevens, Greg McDuffee, Mike Hutchinson, Derek Weaver and Greg Erne, I say thanks again for helping me feel like I am making a difference. And thanks to everyone else for your moral and economic support. If you'd like to help build the medical fund for Rickie's health care costs - that's great. If you'd like to donate to the national cf organization ( to help find a cure, that's great too. It's all good.

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