Because of my blog, I have been lucky enough to connect and make friends with lots of valve surgery patients, many of whom are preparing for their valve surgery. Meet Candy, also a teacher, rock climber, cyclist, workout nut… also needed valve surgery. She wanted to stay in shape before her surgery, and documented one of her workouts, less than a week prior to open heart surgery. I’m sure there will be recovery workout videos once you get moving again. For now, like most people recovering from heart surgery, Candy is walking and gently riding the stationary bike. Thanks for the inspiration Candy!
You are 6 years old and a heart patient. You need heart surgery soon, or else you will die…
…You live in a major city in a country that is in the middle of a civil war. You live in Aleppo, Syria. There has been a battle waged in your city since 2012. Maybe you evacuated and now you are a refugee. Maybe you remained in the city alongside hundreds of thousands of other civilians. If you don’t get killed from the bombings (which is very likely), you may die because medical facilities are rare and you need surgery. Hospitals have been destroyed (bombed directly) by the fighting. Over 31,000 people have been killed in this battle.
In this study, researchers at a Jordanian hospital collect data and analyze the prevalence of heart disease in Syrian refugee children. The study found that mortality was at 14%.
“Of 73 surgical procedures recommended, only 28 were funded and performed; others have been waiting for a median of 223 days (35-534 days). Funding for procedures came from multiple sources; including the United Nations, governmental and nongovernmental organizations, and individual donations.”
Did you just read that?! EVEN WHEN these children with heart disease flee their war torn country, most are unable to receive life saving medical treatment DUE TO LACK OF FUNDING.
PLEASE HELP. YOU. HELP.
The Syrian people arguably need the most assistance from the rest of the world. During this holiday season, please think about that. Please consider helping these people. I often donate to heart related causes, but right now there are people who desperately need medical assistance. There are a few medical groups on the ground in Aleppo right now. Please consider donating. I donated to the Syrian American Medical Society.
If you are unaware of this crisis, please do your research.
Please read this article on how you can help:
Time article: The Boy in the Ambulance
Since last summer, I have been volunteering for the American Heart Association as a Heart Valve Ambassador, alongside 8 other valve patients. We come in different shapes, sizes, ages, genders, and from all over the country. The AHA originally found me through my blog. Since becoming a volunteer, the AHA has featured me in their own blog, and connected me with the Wall Street Journal for an article about on heart surgery recovery.
The role of the Heart Valve Ambassadors is to tell their story and to support new heart valve patients, especially through the American Heart Association’s Support Network; a social media platform in their website that allows patients to communicate and support each other. The Ambassadors are responsible for facilitating conversations on the Support Network.
When people go through something like heart surgery, they often look for others who are similar to them who have already been through it. I get lots of emails from people, especially those that are my age. If you are a heart valve patient, please check out the AHA Support Network (create an account) and also feel free to message any of the Heart Valve Ambassadors directly. Read their stories and if they seem like they may be able to help you, please message them. That is our job as ambassadors.
Click on any of the Ambassador’s names to read their full story.
Or click here to meet the Ambassadors on the AHA Support Network
Dennis, 69, from Orange County, CA, was diagnosed with a heart murmur in 2012. Over time, Dennis’s symptoms progressed, and his cardiologist decided he needed an aortic valve replacement. Dennis had open heart surgery in January 2015 at St. Joseph’s Hospital in Orange County, where his wife Ann worked as a nurse. Ann was Dennis’s primary caregiver and support system during his heart valve replacement experience. Ann’s healthcare background helped him through surgery, cardiac rehab and recovery.
A hiker and healthy eater, Susan Strong was surprised to hear she needed heart surgery last year at age 49. But radiation therapy she had received more than three decades earlier to treat Hodgkin’s lymphoma had taken its toll: Strong had developed severe aortic stenosis and regurgitation. As an ambassador, Strong is sharing her story online and in person to support fellow patients — and even to inspire her students to dream up inventions like the one she credits with saving her life. “I want to take what I’ve been through and encourage people and give them hope that they can live a full life.”
Mark’s journey with heart valve disease began in high school, when a heart murmur was detected in a routine physical exam. Later in life he was diagnosed with aortic valve stenosis, which ultimately turned severe enough to require valve replacement surgery. He’s thankful for the care and treatment he received during and after his surgery, completing a 12-week cardiac rehab program and building back up to jogging 4 miles regularly. Mark maintains a passionate interest in researching the use of nutrition, exercise and lifestyle choices to reduce the risk of developing heart disease. Understanding the power of a community that can truly empathize, he decided to mentor others as an AHA Heart Valve Ambassador.
Jen, 31, from Brooklyn, NY, was born with a congenital heart condition called Tetralogy of Fallot and had her first heart surgery at age 3. While traveling through China before beginning her first semester of a creative writing graduate program at New York University, Jen began to experience symptoms associated with heart valve disease. She had her second open heart surgery to replace her pulmonary valve in 2010.
Bernie, 87, from Traverse City, MI, has experienced heart valve disease firsthand. Bernie was diagnosed with high blood pressure in his 20s, and had triple bypass open heart surgery in 2005. In March 2014, Bernie began to experience symptoms that indicated he had a problem with his aortic valve. Bernie underwent a minimally invasive surgical procedure called transcatheter aortic valve replacement (TAVR), which uses a catheter to replace the heart valve instead of opening up the chest and completely removing the old, damaged valve.
At a routine physical, Christine’s physician detected a heart murmur. Upon being referred to a specialist, she was told she had mitral valve prolapse. Upon close monitoring and a watchful eye of her cardiologist through routine testing, she developed a leaking mitral valve. The conditioned had worsened, causing her heart to become enlarged as it worked harder to pump blood between the chambers. She had her mitral valve repaired through traditional open heart surgery and later developed post surgical complications. Christine has made it her mission to “pay it forward” and provide comfort, encouragement and inspiration to others facing heart surgery. She shares her tips and tricks in how she is “kicking” out heart disease on beat a time in the hopes of making someone else’s journey a little easier.
Kimberly, 48, from Atlanta, GA has experienced heart valve disease firsthand. Kimberly was born with an abnormal valve, but didn’t begin to develop symptoms until her 40s. She learned she needed an aortic valve replacement in 2009 and underwent open heart surgery, receiving a mechanical valve to replace her damaged aortic valve. Four days after her surgery, she developed a blockage and during a second surgery, she received a pacemaker.
The list describing Anthony DiLemme is long but life-changing. He’s a 32-year-old New Jersey-to-Southern California transplant, a rock climber, a cyclist, a blogger, an avid volunteer and an enthusiastic high school science teacher. He also is a two-time veteran of open heart valve replacement surgery. He says his life — his active lifestyle, growing up with a congenital heart defect, and even his summers working as a camp counselor — has been leading up to his newfound mission. “I feel as if I have been mentally preparing my whole life for this.”
I’ve been on an Alan Watts kick lately. There are endless YouTube videos of his lectures in which he imparts his wisdom and gift of words upon us. Here is a short (3 minutes) clip of one of his talks where he discusses the importance of living fully now, in this moment.
As heart surgery patients, the reality of our own mortality is thrust upon us. This becomes clear in the days leading up to the surgery. The fear can be crippling. After a successful surgery & recovery, that fear lingers. We are afraid so we worry about potentially dying one day. No amount of worry will prolong the arrival of death! In fact, the stress could possibly make it happen sooner.
I’ve made one mistake over and over, especially after my heart surgeries. Because of this near death experience, I have it in my mind that I need to do something greater with my life. There really isn’t anything wrong with that, except that it has become a desperate and flailing search. By constantly planning or deciding things that I should do to improve my life, I am forgetting to enjoy my life, now. There is no future, only now.
Watch The video below.
I thought it would be cool to share my final echocardiogram results from my recent hospital stay. I took some video of the echo screen. My cardiologist points out the clot, which is small enough here to allow me to be discharged.
Also, notice my mechanical aortic valve shape. My doctor points to it in the 2nd video. It is near the middle of the screen. It is a circle, with a straight line that goes from its 12 o’clock to its 6 o’clock. That line will appear and disappear, which are the bi-leaflets closing. Use the picture of a St. Jude’s mechanical valve below to help identify it in the echo.
In screen shot below, I have circled the clot. It appears as a little white smudge. It was larger when it was first detected last Friday. Try to look for that little smudge in the videos above.
I’m being discharged! The events of today went as follows:
1. Blood work, including INR test. Result: 2.4
2. Cardiologist came in and discussed Coumadin and issues involving it.
3. My primary cardiologist performed an echocardiogram, discovered that the clot is much smaller than Friday, and discharged me. He felt that even though I’m having trouble getting my INR up to 3.0, that I’m on the right track and I can finish getting to my new range at home. My new INR range is 3.0-3.5
This is my third night after being admitted for non-obstructive prosthetic valve thrombosis. It has been emotional and frankly pretty scary. Each day I wait as my INR is being raised. While that is happening, heparin, a different anticoagulant is constantly dripping intravenously.
My girlfriend Michelle has been by my side, and I truly would be lost without her. We are of course looking forward to my INR raising soon, and keeping it above 3.0 consistently.
The next step, is hoping that the clot is naturally absorbed by the bloodstream. I’m not sure whether or not my Doctor will be checking via echocardiogram for the presence of these clots in the near future. I’ll be asking that question tomorrow.
If you are reading this, and also find yourself in a similar situation, or you’re concerned about it because you also have a prosthetic valve, I found the following study to be very informative: