Introduction: Mike will be the first COPD Patient to participate in the prestigious B.A.A. Boston Marathon, the world's oldest annual marathon. His story is proof of the value of exercise as well as his dedication to the philosophy that the shame and blame image is wrong. As he says ----- COPD is a disease that carries plenty of shame. People, me included, somehow have come to believe that COPD is penance or punishment for having been a smoker. That is pure BS. I refuse to stay indoors or hide because I have to take oxygen with me wherever I go. My life experience says "that I would rather you feel awkward because you find my appearance distasteful, than me hide indoors and miss the great and wonderful things God intended for me to be a part of."

I have always been an active person, working and playing a lot. I was one of those strange animals who would workout three or four times a week, and then smoke on the way home. My more formal workout schedule began in 1992 when my spouse  went back to college and needed a quiet house for studying. That really helped me years later when I was diagnosed with COPD, because I already knew about exercise discipline.

In late February 2005, I was admitted to the hospital with an unknown lung ailment. It took a week and half to make the diagnoses of emphysema/COPD combined with bacterial pneumonia. They treated the pneumonia with antibiotics. Then I developed BOOP (Bronchiolitis Obliterans with Organizing Pneumonia). The BOOP did considerable lung damage before the correct diagnosis was made and I was finally treated with steroids.  About 2 weeks later I was told that when they admitted me, they were not sure if I was going to be alive by morning -  that's how serious the pneumonia was.
 

Unfortunately I have not had a respiratory therapist involved in my care. I have good health insurance, but for some reason it doesn't extend to respiratory care. The insurance company didn't seem to mind paying $95,000.00 for a 10 day stay in a private, isolation room, while administering a bunch of tests, but they would not pay for pulmonary rehab so I could learn to stay out of the hospital.

Thankfully, the respiratory care profession makes a great deal of information available over the Internet. I was able to take much of that information with me to my local YMCA, where I enlisted several of their trainers in helping me to build and maintain a workout/exercise plan.

My first "event" was the Bolder Boulder, an annual 10k event in Boulder CO, that attracts over 55,000 people. I completed the 10k in 1 hour 42 minutes and 2 seconds (the winner completed it in 28 minutes). That was May 2005.

Originally my goal was to keep my saturations above 90%. Mine can jump all over the place some days, but lately I have been trying to keep them at 94% or above which is requiring me to use O2 24/7.

In December of 2008 I had a SCOPE Transtracheal oxygen catheter installed. My hope is that the device will reduce my high flow oxygen needs when exercising. My current prescription is 4-6 liters at rest and 7-18 liters when I'm active or exercising.

I am currently working with Nancy Lamberston, the wellness leader at the "Y" who helped me train for the Climb Chicago event, sponsored by the American Lung Association of Illinois-Greater Chicago, which was held on March 8th, 2009.  She is now helping me prepare for the Boston Marathon.

The Climb Chicago event consists of climbing 360 flights of stairs (180 floors in 4 different building -- a total of 2,340 steps).  I was very excited about completing that event, since it is so close to the time of year I received my original diagnoses. Presidential Towers, Chicago photo credit  - Cameron Garland

I use supplemental oxygen 24/7. When I do stair events I carry a LOX portable in a backpack.  I have a custom made cart that I use when I walk.

I have walked 2 full marathons; about 22 10K and half marathons, many 5k walks and several stair climb events. In 2007 I participated in the Hustle up the Hancock (all 90+ floors). I have "Run the Republic" in Denver (53 stories) a couple of times and will do it again soon. The competitive events such as 10k's and half marathons, as well as the full marathon are something I started after being diagnosed and beginning oxygen therapy. Those events give me something to target my training toward. They all require conditioning different body parts. Two of the marathons were down hill. The Slacker half marathon is done in Georgetown Colorado. You begin this race at an elevation of 10,500 feet and come down to 8, 000. It is without question the most difficult race of all that I do. Downhill, is not easier and adding to the challenge, 5 of the 13.1 miles are on unpaved National Park Service fire break roads.

Completing the Chicago Climb gave me feelings of amazement - First that I wanted to even do it, and second , that I completed it. Mostly what I felt was gratitude.  There is pride in my accomplishment, mostly of the humbling variety.  But there is some bravado that says “I’m a tough guy……ok world, what’s my next thing I am not supposed to be able to do?……..Bring it on!!!”

That next goal is to compete in the Boston Marathon on April 20, 2009. I am the first athlete with COPD to gain entry. I will be in the mobility-impaired group of athletes. This is really an honor and I fully expect to be the first COPD athlete across the finish line.

Notes:

3/14/2009
We got back from Chicago late Sunday evening. I was all fired up after having completed the Climb Chicago event. This week has been hard to back in the swing of things. I haven’t wanted to workout. I had to force myself to meeting with my trainer Nancy at the YMCA on Wednesday.

Nancy had me do a bunch of new exercises, using the SOBU. (It’s like half of one of the big exercise balls, with a solid bottom) I was doing the balance lunges. They are so hard, and I was so uncoordinated. Then she had me on the rowing machine. Row slow pace (2O strokes per minute) for 1 minute then faster (30 strokes per minute) for 2 minutes. I was having trouble doing that. I could only speed up for 30/45 seconds.

Then I would be so SOB that I would have to stop completely. I don’t respond well to sudden burst of energy that require fast breathing. I can work my way up to where my heart rate is between 150 and 155 bpm. I can maintain that for long periods of time, but to go from 125 to 150 quickly is more than I can handle and it frustrates me.

I got lots of nice kudos for my stair climb efforts and that felt good. I am still not entirely comfortable in the limelight. They also filmed an interview. I’m told it will be accessible from the Climb Chicago website.

The granddaughter was over this weekend. She is growing up way too fast.

3/29/2009
The past two weeks have been a blur. My firm sent me to a small town in eastern Colorado to do research. I work for an oil and gas law firm that specializes in energy issue. So I do the fieldwork. I have missed a lot of training the past 2 weeks. The weather has been totally awful and the wind was something else. Gust up to 65 miles an hour, and then it snowed. The storm dumped up to 17 inches of snow in the Denver area Thursday before pushing east, where 20 mph winds created drifts up to 5 feet deep.

This lack of training time is make me nervous. I have been staying in shape with trainer session on Monday and Wednesday and Pilates on Tuesdays and Thursdays. The walking I’ve done as been mostly on a treadmill. I vary it a lot but its still not like walking on the street.

I have been really short tempered and I know its stress. I have just not sure what to do about it. Well that’s it for now. My thoughts are more than a little bit scattered.

April 12, 2009

These past 2 weeks have been frantic, or at least they feel that way. I have this whole list of things that need to be finished before I leave this coming Friday. It's hard for me to imagine that the Boston Marathon is a week away.

It was snowing today in Denver, and the YMCA was closed because of Easter, so I have lost another day of training. I am going to trust the race gods are in my corner and hope for the best. I will finish, I just want to do it with an official time, and to do that, I have to come in within 7 hours 45 minutes.

I don't normally have to deal with all the things that are going on. Usually my support crew is able to meet me every 6-7 miles with fresh O2 tanks, we swap those out and then they leapfrog ahead of me to the next 6-7 mile stop. I don't have to worry about a lot of traffic, usually the biggest hassle is closed streets. I don't have to worry about trains not running or whether or not my equipment is a terrorist threat.

I am excited and bit scared at the same time. Kind of like my first kiss. Only difference is I only get one shot to get it right.

We had Easter with the family and that was a pleasant distraction. And as if I didn't already have enough on my mind I received a job offer last week. I already have a job I like but it was great to get the offer anyway. A year and a half ago I was out of work because the company was sold and I wasn't part of the deal. (Which is just as well because I would have not worked for the new owners.) Back at that time I couldn't get people to even return an email, and now they are seeking me out. Strange life I lead.

My start time is 9:00 with the other Mobility Impaired athletes, and I am shooting for a 7 hour finish. There are so many things that way into that time, but I'll give it my best. I consider myself lucky and grateful to have so many people supporting my efforts, not the least of which is my partner. For that I thank the power greater than myself. I have an interview on race morning with VB Goudie on Fox TV at 6:45. And Tuesday 4/14 Doctor Radio, Sirius 114 and XM 119 from 7:30 to 8 Eastern Time.

I also want to thank Ron Kadrlik from Caire, Inc., and Kimberly Snyder from Resprionics. They have been great support and the good folks from Caire, are actually going to be helping me during the race.

My mother died of COPD in 2005. I wish she were still around to see that you don't have to live with a cannula and inhaler in one hand and a killerette (cigarette) in the other.

Closing notes and thoughts:

Well I hardly know where to begin. I did finish the Boston Marathon in 7:31:36, which for me was 50 minutes faster than my previous marathons, and that was VERY exciting to me.

Maybe I should continue on from my April 12th posting. As many of you know it’s was a challenge to actually be allowed to participate in the Boston Marathon. Then came the challenge of working out the logistics for getting my equipment there. Using a national home healthcare company, I had made arrangements to have Caire High Flow strollers in Boston so I would not have to ship all of my own liquid oxygen tanks. It costs $321.00 just to send my cart and I didn’t want the additional cost of shipping the tanks if it was not necessary. On March 8th, the week after I got back from the stair climb in Chicago, I began talking with their Boston branch that would be handling my oxygen needs. Every 10 days or so I would call and ask if they had everything. According to them, high flow users are sort of rare at sea level. I figured that if they were having problems supplying them, I would see what I could do to help out. I was told everything was under control and all the people concerned were on the same page and everything was fine.

On April 1, I had dinner with Ron Kadrlik, the national sales manager for Caire, Inc. He volunteered that Caire would help out if the healthcare company could not find the necessary equipment. On April 2nd, I called the local branch relaying what Ron had said, and was told that everything was fine. I hate surprises so I double checked again on April 7 to make sure everything was a-ok. Their logistics person told me they had not received the units in their weekly delivery, but was sure they would get them. He also said he would find out where they were and would call me back. Well, I didn’t get a call back until Tuesday April 14, 2009 at 1:15 Denver time. With just 6 days to race day, I was told that they didn’t have my equipment, that they were not going to get it, and more or less said  ”tough stuff, you’re on your own”. Needless to say I have never been angrier in my life. It really upset me that I had tried to cross all the “T”s and dot all the “I”s and still this essential element to my venture got screwed up. Even more unbelievable was the “I don’t give a damn” attitude from that healthcare company.

I immediately got on the phone to the folks at Caire, Inc. and together with Tom Corey of Corey Medical, Ron Kadrlik and Brett Townsend of Caire they were able to track down and overnight enough equipment to do the race. In the mean time my friend Roxlyn Cole enlisted the help of Vlady Rozenbaum, the founder of COPD-Alert, who was able to contact folks pretty high up at the healthcare company and like magic everything was ready for me in Boston. I am just happy it worked out.

Well, my tale of woe wasn’t over yet. I specifically fly with airlines at allow portable oxygen concentrators. When I booked by flight to Boston I had selected US Airways, because they allow the use of all the POC’s that have been approved for air travel. I did notice a notation on the itinerary that said they “code share” with United Airlines. I immediately called US Airways and asked what that meant, and was told that I had nothing to worry about, I would be on an US Airways plane and their rules regarding POC’s would be in use.

On Friday the 19th, we arrived at Denver International Airport, waited in line at US Airways to check in and are told that we had to check in at United and that we would be on a United plane. This meant I would have to use their rules for supplemental oxygen. Since they did not yet allow POC’s to be used on their planes, I would have to purchase oxygen at $125.00 for each leg of my trip. Not only that, they were not even sure they could even get me on my flight, because, in their view “I had not taken care of things like I was supposed to.” You can only guess what my reaction was.  I was able to avoid jail, only because my beloved partner is a saner person than I am when the last straw has broken the camel’s back.
 
We paid the money, and were able to board the plane to Boston.

By now, I am really starting to get suspicious because, since September of 2008, this whole experience has been one thing after another. When the hotel arrangements were ready and had no problems, I about fainted. Then we were able to navigate the mass transit system in Boston, with no problems. We went sight seeing and took a water taxi back to the hotel, and again no issues. That was on Sunday, and it was at that point I finally realized that I was in Boston to participate in the Boston Marathon and nothing was going to prevent that. I was only mildly concerned about not finishing under 7 hours 45 minutes. My worries and fears evaporated and I began to get excited.
 
I don’t think I really slept the night before. We got up at 4:30 am to get to the start line.  We met up with Steve Gaudet for the ride from Boston to the start in Hopkington.  Steve is an amazing guy from San Francisco who has been diagnosed with “severe persistent asthma.” You can read more about Steve at http://breathinstephen.com/

Since we were doing the race with the mobility impaired athletes our pre-race “village” was the gymnasium of the local school. There we hung out with the wheelchair folks, the blind runners, and the paraplegic groups with specialized prosthetic limbs. You talk about inspiration, WOW! These men and women had me in awe. 

The Boston Athletic Association also assigned me a spotter to help keep me out of the way of the serious racers (like I wasn’t serious). This man named Chuck was a heaven send. He was able to provide guidance for both me and my support crew. It made the exchanging of oxygen tanks along the race route so very smooth and easy.

The day was dark and over cast. The mobility impaired athletes go first at 9 am, followed by the wheelchair racers at 9:22; 10:00 for the elite runners, and 10:30 for the remaining thousands. It was a perfect day for racewalking, but it was a little chilly for the spectators. Due to the coolness, I thought most spectators would not show up. Boy was I wrong!! It seems people were shoulder to shoulder the whole 26.2 miles, cheering everybody on like crazy. I think some of the many college students might have had a little extra cheer in their glasses, for they were having a really good time.

I cannot tell you the number of racers that passed me and encouraged me along all the way to the end. It was truly amazing, and it kept my spirits high. The route is pretty and seems more like a trip through the countryside rather than a heavily traveled road. The trees were starting to leaf out, and they have these things called Tulip Trees and they are just plain beautiful. We don’t see them in Colorado, probably because we are too dry.

Between the mile marker 20 and 21 is Heartbreak Hill.  It was everything I was told it would be. It’s not so steep but there are 3 hills before it that are also pretty long. Combined, they rise almost half a mile. Many of the runners were walking up the hills so I didn’t feel too bad. The cart I use weights about 80 pounds when loaded with 2 full liquid oxygen tanks. It works great on level ground and downhill because of the special suspension. But it is like pulling a trailer with 80 pounds of weight uphill.  It would be an understatement to say I was tired after that - and I still had 5 miles to go. That was the only point I even entertained the idea that I would stop. Then I got my second wind, spurred on by the spectators and my fellow racers.

Steve and I stayed pretty close together the whole race, and when we were 2 blocks from the finish line he said he wanted to run. My answer was “I can barely walk, are you smoking crack?” We didn’t run. Steve also told me that when we crossed the finish line he was going to need to do a nebulizer treatment, because he felt an asthma attack coming on. I knew from past experience with him that it usually means a trip to the hospital. When we crossed the line I grabbed the very first first-aid person I found and told them to help Steve, and yes he did end up in the Hospital. Thank God he was back home by Saturday the 25th.

Bottom line - it was worth every single frustration, setback and hassle along the way to getting to the Marathon. I walked away at the end feeling like I had accomplished something significant, but even today, I am not totally sure what that is.

I owe a huge thanks to the people at Caire, Inc. They really understand the COPD community and without the help of Ron Kadrlik, Brett Townsend and Tom Corey I would not have had a workable plan B. Tom “Mongo” Chromy was the wheelman for my support team. His driving skills rival those of any NASCAR driver.

I owe Vlady Rozenbaum (COPD-Alert), Holly Lockwood (Everything Respiratory magazine), Chip Gatchell (COPD International) and my friend Roxlyn Cole, my appreciation for moving mountains when they needed to be.

I cannot tell you how the emails to the Boston Athletic Association and the emails of encouragement from the COPD Community meant to me, especially when I was feeling a bit blue when things were not going smoothly. The people on COPD International, COPD-Alert and EFFORTS are the best, and thank you all.

I had asked awhile back about POC’s and if it would be possible to have a “normal” life using one. Well, I am happy to say that I used a Respironics Evergo, and it worked great. I had tried one of the earlier versions and the new ones are much quieter. I was able to stay titrated at sea level with a pulse level of 4. We walked all over Boston and my oxygen levels stayed perfectly fine. I wasn’t able to exercise with it, because of my oxygen needs, but I was really impressed with the unit. I actually liked it better than the SeQual Eclipse because it so much lighter, and the batteries are much easier to change. Thanks to Kimberly Snyder at Phillips-Respironics for arranging that.

The last person to thank is the most important person to thank, and that’s my partner Cameron. The love and support I am freely given is amazing and after 17 years, it still surprises and comforts me.

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