I thought it might be helpful to share our story with you. This journey began in 2011 when our second child was born and big sister was 6 years old although for many years prior my husband Steve felt that something wasn’t ‘right’ health wise. At that time, he had been having symptoms of seasonal allergies and decided to see an allergist. He had also started to experience episodes of shortness of breath and lightheadedness. Little did we realize at that time that a seemingly routine appointment would set the course for the rest of our lives.
During the visit he mentioned having symptoms of seasonal allergies such as sneezing, stuffy nose, and watery eyes. He also explained how tired he had been feeling and that he was short of breath at times. She performed her routine check up and while she was listening to his heart she heard a heart murmur. She brought it to his attention and along with prescribing an allergy medication she recommended that Steve follow up with his primary care physician for further evaluation. Steve followed up with his doctor and an echocardiogram was ordered. At first I thought that it might be a harmless murmur.
However, I had a ‘feeling’ it might be more since his family history with heart disease was rather significant.
While we waited for the results we tried to remain calm although we both knew there was a possibility that there might be something. About a week later his doctor called and said…’Steve, your heart’s mitral valves are prolapsed and you have moderate regurgitation’. He continued to tell Steve that he was being referred to cardiology. I think we both went numb as we heard the heart disease diagnosis.
We then proceeded to see a cardiologist who confirmed the Mitral Valve Prolapse with regurgitation diagnosis. In essence, this meant that due to the valves not closing properly blood was flowing backwards which created the heart to work harder and created the possibility of further complications. She continued to say that due to the regurgitation that his heart was enlarged and would someday be in heart failure…but that he could undergo open heart surgery to correct the problem at the right time. I still remember hearing her say those words in complete shock…How could this be happening to my husband? Did she really say ‘heart failure’? Did she really say ‘open heart surgery’? How could this be happening to us now? We just had had a baby! I was sad, shocked and to a certain extent angry.
At that time we did not fully understand his condition or comprehend why she was recommending surgery at a later time. We thought, ‘If there is a problem, fix it!’ We later understood that surgery is oftentimes recommended when the patient’s regurgitation is severe. Moreover, the American College of Cardiology sets forth guidelines and recommendations for heart patients and their treatments. For instance, in Mitral Valve Prolapse with regurgitation they take into consideration many important factors. For example, is the patient having symptoms? Is the regurgitation mild, moderate or severe? What is the ejection fraction? You can read more about their guidelines at the American College of Cardiology website. It is medical literature mostly for health care professionals but serves as an excellent resource if you want to learn more the recommended guidelines. In addition, it can be used as a tool to clarify any questions you may have with your cardiologist.
Steve continued to struggle with symptoms of shortness of breath, exhaustion and began having palpitations. We made an appointment to see her again and she ordered a ‘TEE’ or Transesophageal Echocardiogram, a much more invasive procedure in order to get a clearer picture of the heart and valves. The results confirmed that Steve had Barlow’s-a condition in which the mitral valves have extra tissue and are very long and floppy. She once again stated that Steve was not an ideal candidate for surgery since his regurgitation was moderate. She did however remind us that his condition could worsen either slowly or very quickly. She also expressed her concerns about Steve being so young if a repair was not possible. This would mean that he would have a mechanical valve replacement and be on permanent blood thinners. We later learned that he would not be a candidate for a tissue valve as their lifespan is about 8-10 years on a young patient which would mean re-operation around that timeframe.
By this time we had a better grasp of his diagnosis and what it was doing to him physically. As a result, in the fall of 2011 we sold our home and relocated back to Orange County where Steve works. We knew we needed a new cardiologist and one of our customers who was aware of Steve’s condition highly recommended a cardiologist in the area. In the spring of 2012 we met the new cardiologist and immediately sensed a connection. He listened attentively to Steve’s symptoms, reviewed past tests, and took an immediate interest in helping Steve. He ordered an echocardiogram and the results were about the same, therefore we continued to wait. Steve continued to work but over the next 6 months or so his symptoms started to escalate. In December of 2012 a final echocardiogram was done and within a week we were informed that Steve’s condition had in fact changed. His cardiologist explained that the regurgitation had increased and that the heart function had decreased. He explained that if we waited for surgery any longer that there was a possibility that his heart function could decrease significantly and undergoing surgery would further compromise his heart and quality of life. He was very straightforward and explained why it was important to proceed with surgery. He also recommended us to a highly skilled cardiothoracic surgeon who had experience with Steve’s type of valve disorder with the hopes that Steve would have a valve repair. We thought he would say a few months but were very surprised when he said within 6 weeks. We knew this day would ‘someday’ come but we were not prepared to have surgery within 6 weeks.
Needless to say, this was a very challenging period. We never expected this at this stage in our lives. We were scared and all we could do was face another day with the knowledge that something was wrong . During this time we relied heavily on our faith and our loved ones to keep us in their thoughts and prayers. The pressures and challenges were very overwhelming and we needed our loved ones more than ever.
If you or your loved one has been recently diagnosed with heart disease I first want to say that I understand what you are feeling. My thoughts and prayers will be with you and your loved one for strength, wisdom and healing. Please also know that you are not alone on this journey. I am available to offer my support in anyway that I can. This period is also challenging as you might be experiencing high levels of stress, anxiety, shock and anger. Please know that these feelings and thoughts are perfectly normal. It will take time to process all these emotions. It is therefore important to share your feelings with ones that could offer their support and encouragement. In some cases you might also consider speaking to a health care professional if you need counseling to help you cope with the diagnosis.
I appreciate you taking the time to read our story. My hope is that you were encouraged to some measure in knowing you are not alone on this journey. As you reach out to your loved ones, please know that we are here for you as well. You and your loved one’s well being are at the heart of our mission.