The Rickster...

Here is Rickie. He is the guy we are all fired up about for this swim. He is a normal, very active boy - he just turned 9 a week ago. He likes Pokemon, military games and playing soccer. He has been very healthy lately - his last PFT's (pulminary tests) came back almost normal. But this normalcy comes at a cost - each day he takes close to a dozen pills and endures two separate half hour breathing treatments, which include the ingestion of four different medicines through a nebulizer. In addition, he is checked over by a visiting nurse once a month and goes back to the hospital to be prodded and poked 2-3 times a year. And, in the first two years of his diagnosis, he also spent at least 10 days a year in the hospital. He was fitted with a port that allows him to receive IV fluids, etc directly into his chest as opposed to trying to find veins in his arms all the time. Five months ago he spent 3 weeks getting intensive doses of antibiotics, but thanks to his port, he was able to avoid the hospital and stay home much of this time.

A reporter for the Detroit News asked me recently why we had set up a Medical Trust Fund for Rickie. "Is it really necessary?". "Will he need a lung transplant?". How many people actually get them? How many people in Michigan have gotten them?

It is hard to explain to someone who has no idea what it is like to wake up one day and find out that your child is diagnosed with something as severe as Cystic Fibrosis. The decision to set up a fund was not a casual decision. It was as deliberate as the desire to make it across the lake every year. For those who are lucky enough to go through life without living with issues like this - that's great. But for people who have lived the uncertainty and worry that we have come to expect, things like this are easy answers. You do what you can. It may not be the best answer, but it sure beats the pain and frustration of doing nothing.

And next year, we will be setting up a 501 c(3), so we can help the University of Michigan's Mott's Children's Hospital and the Cystic Fibrosis Foundation do what they do best - which is to make life better for kids like Rickie. More on that later. Right now we need to focus on the swim - and figure out where the article is that the Detroit News promised to print.

Exacerbation...

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 - www.thedac.com). 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 (www.cff.org) to help find a cure, that's great too. It's all good.

We Made It Again!!!!

First, I need to say that this is one man’s version of the events. I just wanted to put some thoughts down to herald our effort. And I want to thank our team - they are great friends, great swimmers, and a heck of a lot of fun to be around. And I am happy to say that I made it the entire length – again… At 54, hey, I’ll take it.




7:30am – The Boat…

Mike Hutchinson, Derek Weaver, Greg McDuffee and Greg Erne and I met Mike Stevens on his boat at the dock at the Grosse Pointe Yacht Club. We were joined by Richard Mishler, one of my partners at 4731 Consulting who came by to wish us luck. As fate would have it, we had an extra spot on the boat, so Richard joined us on the trip. We got all our gear on board and left the harbor at 8:00am headed for Harsen’s Island. The sky is overcast, the waves are pretty quiet and obviously there isn’t much wind at all. The weather report had called thunderstorms all morning… Seriously, weather forecasters must not get out much – they weren’t even close… The trip is 25 minutes, and we arrived without incident. The only hard part is watching the shoreline completely disappear in the distance. It makes you feel pretty insignificant – and brings into mind the idea that Lake St Clair really should be considered one of the Great Lakes. It also makes you question your judgment about swimming all the way back…



Mike Stevens recommends that we start at the southern tip of Harsen’s Island, and swim to the South Channel Lighthouses. Then from there, we’ll head southwest directly towards the Nine Mile Tower, located off Jefferson about a mile or so north of the Grosse Pointe Yacht Club. The idea was that this year we would swim across the lake currents near the top of the lake and then use the shore currents to help us slide down the shoreline, staying no more than a mile or so offshore.



8:48am

Four of us get in the water: Greg Erne, Mike Hutchinson, Derek Weaver and me. We toast Rickie and our own bravado, say goodbye and start swimming. The sun is threatening to come out for good, the clouds are receding, and the water feels great. It was probably 73 degrees at the start, and ranged from 69 to about 76 on our trip. The water is smooth, there are few if any waves, and we’re swimming with the current. About 40 minutes later we’ve reached the second of the South Channel lighthouses and take a photo break for a couple of minutes. Personally, these little breaks are tough for me, because it is far easier (for me) to swim than to tread water, especially with a steady pace.



As we get ready to go we look back and see how far away the Harsen’s Island shore appears. It would not change for the next 2 hours or so… One of the frustrations to overcome in a long swim like this is the notion that you can swim for an hour or two, and your landmarks sometimes appear not to have changed at all. This is especially true of the shoreline itself, or of large landmarks like the 9 mile Tower that would later appear almost never to get closer during the middle 3-4 hours of the swim.



10:20am

Our first official break – we all get out to rest and to replace a couple of the swimmers with fresh bodies. I always feel best right after one of these breaks – the other swimmers speed me up a bit, and I feel a sense of their energy. I rest for 5 minutes, gulp down an energy packet (“GU”), drink some Gatorade and dive back in. Hitting the water is always a shock… And the temperature can change immediately. Frequently you’ll be lulled by some really warm water, and just as you’re getting comfortable you’ll hit a pocket of what feels like ice-cold water that nearly takes your breath. It’ll wake you up fast…



11:45 – second break. I can’t really explain what happens between breaks. My mind is thinking about everything and nothing at once. Most of the time I am trying to make sure I swim relatively straight to get maximum efficiency out of my effort. I am still feeling pretty good at this point. I am focused mostly on keeping the boat in sight (to my right) and making sure I don’t run into whoever is swimming next to me. We don’t look up much – there really is no reason. At water level, you can’t see anything but water anyway. I think about Rickie, about the guys I am swimming with, about my wife and family, about the economy, etc. Occasionally I look over and see Derek - he’s doing the butterfly, for crying out loud…



12:50 – Suddenly, Mike Stevens calls us into the boat. North of us, a pocket storm is passing through. It is small circle of dark clouds, which would probably be OK by themselves, but they are dropping lightning onto the lake. It is hard to tell which direction the clouds are moving, “severe weather” warnings have been issued and the National Weather Service is calling for potentially dangerous weather. We mark our coordinates and immediately head for shore. On the trip in we never did get wet or even any serious wind, but the Weather Service is right often enough to always listen to their advisories. We’ve been swimming 4 hours and have probably 6 miles left. It is hard to stop…



1:45 – We wait for a half hour at the GPYC, and suddenly the weather passes us or dissipates or disappears, and we get an all clear from the Weather Service. Mike Stevens declares we are going back out… Derek has just finished a huge hamburger and French fries from the GPYC concession and head back out. The rest of us went the fruit and liquids route. At his age (24?) the food doesn’t even affect him, and he is a pretty decent swimmer. The night before he had just returned from the US Masters Swimming Long Course Championships, where he placed 3rd in the 400 freestyle competition. At 2pm we’re back in the water.



3:00 – The times get a little more fluid here, but it’s always the same - fresh swimmers, quick break for nutrition, then back in the water.

We change swimmers roughly every hour. At each stop, we all get out. I always get back in, along with at least a couple of other guys. Some of them have put in serious mileage as well. We decide not to have more than three in the water at any one time – we get spread out too far and it is too hard to watch all of us. More GU, more Gatorade. I am getting pretty tired. And apparently I am turning to the left a lot. My left shoulder seems a little sore – I can’t quite find the stroke anymore that keeps it from hurting. But, the weather is decent, and I enjoy looking up and watching the sun and the clouds each time I take a breath. At one point the boat takes off – to go collect some trash on the water.



4:00pm - It is getting harder to get “clean air” – I keep taking in water because the waves are kicking up and shifting direction, but things are generally manageable. McDuffee frequently swims on my right side, and is as steady as a rock. When he is in the water, I mostly just keep an eye on him. He seems to watch the boat and somehow also stays with me, in spite of my frequent left turns. It’s the same thing with Hutch, who swims on my left, except for the fact that I find myself nearly running into him all the time.



5:30 – It has suddenly gotten very difficult to breathe. The waves are now coming out of the southwest directly into our path. Clearly the wind appears to have clocked 180 degrees in a very short time. I am aware of the different direction of the waves for only about 20 minutes until suddenly I hear the guys on the boat screaming at us to get out of the water. Greg McDuffee, Derek Weaver and I all swim hard to get to the boat, but have not completely gotten on board when the rain hits. It is pelting us, and the wind has suddenly and unexpectedly elevated to about 40 mph. But what is most interesting is the hail. I have been caught in a hailstorm before, but never while swimming in a lake. We all manage to make it on board just in time to hear Mike Stevens yell, “That’s all she wrote, boys. We’re done!!! At this point we’re about ½ a mile away from the mouth of the harbor. Mike is the self-appointed President of the Lake St Clair Swimming for Rickie Sanctioning Board. We all cheer and shake hands. It is really a great moment. Then we all come forward, and huddle together near the wheelhouse as we make our way to the harbor.



By the way, I must say that I feel partly responsible for the hail. At about a mile out, I realized I was having some difficulty. With the waves, I couldn’t get any power in my stroke, and I was working so hard to get air on each breath I was losing what energy I had left. So, I figured that I’d say a little prayer, get the winds to die down, or the waves to settle down a bit, and we’d be all set. But hail? Never even thought of that one…



I am the luckiest guy in the world. Rickie continues to be healthy and we have been blessed with great medical care at the University of Michigan’s Mott Children’s Hospital. We have had great support for our little swim – including this group of seven guys on the boat who have offered their time and resources (and energy) to train for and swim in this effort two years in a row!! And we’ve already had several people offer to help us next year. We all made it, we have a great story to tell, and some really great people have supported us. Now – if you happen to know any others with cf who want someone to talk to – please send them to us. It’s always easier when you’ve got friends…