My name is Gary Swain and I'm 52 years old from Marblehead, Massachusetts. I have Dilated Cardiomyopathy. In simple terms, I have an enlarged heart. At some point, when is not clear, a virus attacked the muscle tissue of my heart. Over time the heart became enlarged and started to function poorly. My symptoms really became noticeable in 1999. I had symptoms prior to 1999, but were mainly for irregular heart beats. PVC's. I had a periodic episode of fainting which has been attributed to Ventricular Tachycardia. The way I fainted could also have been an arrhythmia called Ventricular Fibrillation, a potentially fatal form of arrhythmia in which the heart races at over 350 beats per minute inhibiting its ability to pump blood. This was induced in me in the hospital which led to the implantation of an Automatic Implantable Cardioverter Defibrillator.
This device can restore normal heart rhythm through detecting and then shocking the heart back into a normal rhythm. My defibrillator is made by Guidant Corporation. What a wonderful group of people to have watching over you day and night, 365 days a year. I have had my defibrillator go off and it is no fun! Had my episode been Ventricular Fibrillation, without the AICD, I might not be writing this. Thank You Guidant!
The dilated Cardiomyopathy itself present another whole set of problems. My heart acts like an over stretched balloon that has had half the air let out. It's basically a big loose floppy bag that doesn't pump very well. A normal heart, each time it pumps, on average, give or take, pumps up to 75 % of the blood that is in it out into your arteries. Mine has such weak pumping action, that it only pumps between 18 and 30 % of its volume on average. This varies due to whether I am tired, eating well and sleeping well and exercising regularly. Think of it this way. Each time your exercise, you breathe in where your lungs take in oxygen which is then pumped to all your muscles by your heart. What happens if all of a sudden, your muscles which are used to getting all this oxygen rich blood only get a fraction of what they are used to getting? You get the point. All of a sudden you are starved for oxygen and you become short of breath. Imagine having this happen to you by just walking a one flight of stairs. Walking to your car. Putting out the trash. You life changes dramatically. Those things that you used to be able to do at least for most, can no longer be enjoyed. The simple things become tasks and life changes in a way that you never thought it could. There is no real operation for Dilated Cardiomyopathy. No arteries that need clearing or replacing. As the heart continues to enlarge, the valves stretch out and no longer function properly making to problem even worse speeding up the degeneration of the heart. The only option in most cases is the use of drug therapy. This can slow or with luck, stop the progression of the disease.
In my case, drug therapy did not slow the progression. From 1999 when my symptoms really started affecting my lifestyle to now, there has been a decline in overall heart function. Early on, I had a much more rapid decline compared with today. That in part is due to a combination of drug therapy and exercise and eating properly. Exercise is key for me. People have two ways of producing energy. Aerobic and Anaerobic energy.
Aerobic means 'with oxygen'. During aerobic work the body is working at a level that the demands for oxygen and fuel can be meet by the body's intake. The only waste products formed are carbon dioxide and water. These are removed as sweat and by breathing out. Anaerobic means 'without oxygen'. During anaerobic work, involving maximum effort, the body is working so hard that the demands for oxygen and fuel exceed the rate of supply and the muscles have to rely on the stored reserves of fuel. Obviously, with such a decreased heart function, my Aerobic threshold is extremely low. I become winded easily if I don't pace myself properly. This is where my anaerobic threshold comes into play. My threshold is off the scales which compensates for lack of Aerobic threshold. There are many people who have the same heart measurements as I do, but are bed ridden due to a low anaerobic threshold. I am so blessed for years of exercise which has allowed me to live with my disease. My heart function has declined to a point where I have been evaluated for Cardiac Transplantation at Massachusetts General Hospital in Boston, Ma. I was admitted for pre-transplant evaluation in May of 2004. Chest cavity measurements. Tissue typing, ultrasounds of all major arteries and veins. Every blood test know to man!
You are probably wondering what in the world I am doing after reading all of the above! Those who know me know that I do not give in to my challenges! I turn things around and challenge my challenges so to speak. Many look at me and do not believe I am sick. I don't feel sick for the most part. I have come to deal with illness and work within its limitations and try to expand those limitations.
I have always been extremely athletic and have a very active life and adventurous life. I do a tremendous amount of sailing, hiking and travel when I can. While I was laying in my bed at Massachusetts General Hospital, I looked up at my Doctor, Dr. William Dec, head of Cardiac Transplantation at MGH and asked him if I could race on a friends boat and sail in the Newport to Bermuda Ocean Race. He looked at me with some disbelief, and said he would think about it. In June, I found myself aboard Nirvana, an 80 foot MAXI belonging to a friend of mine from my hometown racing from Newport, RI to Bermuda. Some of this story, you can read below.
I am about to attempt a climb with my cousins, Michael and Gordon Brown. Michael has been documenting my story and will be filming this climb. He is President of Serac Adventure Films. He is an amazing human being and has accomplished almost the impossible when it comes to film. He has been recognized for his achievements in film with 5 Emmy awards. You can visit his website, Seracfilms.com and see for yourself. My other cousin Gordon is no less a cinematographer and also an amazing human being. He was one of two to complete the first full descent of the Nile River from source to sea. He also has 5 Emmy awards for cinematography. We plan on climbing Torreys' and Gray Peak here in Colorado. Torrey's is 14,267 feet and Gray is 14,278 feet. This is considered an advanced climb and will take everything I have to make the summit. Check Torrey and Gray
I will carry oxygen should I need it and I'll be wearing my heart monitor as well. We do not want my defibrillator going off at altitude. For someone like me with such a low heart function, it will be almost as hard for me to make summit as it would be for a healthy person to make the summit of Everest. I am doing this for several reasons.
First is the fact that in this country there is a tremendous lack of transplantable organs. There are just not enough organ donors. If you are reading this, please consider signing an organ donor card. Be a hero and save a life! The New England Organ Donor Bank is a great place to sign up! www.neob.org There is a link which allows you to order a donor card. If you do not have one, place sign one today! Save a life and become a hero!
I am also showing heart patients and others with disabilities that you CAN live life with a disability. Those with AICD's like me, life can almost be normal save for the hunk of metal under your skin. I really want to thank all the people at Guidant for all their support. They are helping by providing the oxygen that I need to climb with and supporting me in all my adventures so those living with Pace Makers and AICD's can see that there is a life after having an implant. Guidant.com
Also I want to thank Tom and Tina at the Explorersweb for putting this site together for me and for providing the Contact 3.0 that I will be using to post live updates to this site and for just being great friends! Thank you guys! I Love you two! Explorersweb.com
I want to thank the support I am getting from The North Face. All you people have been so kind and supportive. How can I say Thanks! The North Face
Lastly, I want to thank my family for being so supportive in all my adventures and going through this whole medical process with me. Kelly Perkins for being my mentor and friend as she has already gone through what I am going through. My Doctors at Salem Hospital, Dr. Mike Katcher and Dr. Mark Anderson. Dr. Michael Orlov at St. Elizabeth's Hospital in Boston for being my friend and advisor and My Cardiologist at Massachusetts General Hospital, Dr. William Dec, my transplant Cardiologist. Thank you all for your patience and advice while run off on my adventures. Lastly, Allie, for accepting me as I am and allowing me to be part of your life.
Check out video here!