Every year, my family prepares Christmas list so we don’t waste our time in stores trying to figure out the perfect gift. So this year, my family knew I was interested in gifts like: charms for a charm bracelet; a cross necklace; exercise clothes; cotton sweaters; a calendar; etc. There would be some surprise because there would be discretion in the colors and designs of the requested items. But at least I led them to the ballpark where they would have a good chance of scoring a home run.
But it dawned on me that while there were a lot of beautiful, distinctive things on my list – things that were colorful, or tributes to my faith or my fashion sense, I really did not have anything for my heart. Sure maybe the exercise clothes could be in the heart category because I exercise to strengthen my heart, but my sense is this is more in line with my fashion sense.
Then it dawned on me. Even though I have the misfortune to have heart failure, I have received many gifts for my heart in the last 7 years. So this post describes what gifts my heart has received, and who I owe thanks to this Christmas and hopefully for many more Christmases.
When I first blacked out in December 2012, all I could think of was that I needed to get out of the hospital because I had to get back to my job. It didn’t matter that I was bone tired – as my sister reminded me at the hospital – I just felt an obligation to pour all my energy into work. But I forgot that even though work forms an integral part of our lives, and is something that we can take pride in, it should never skew our life balance to the extent that we ruin our health.
I spent the next four months at various doctors’ appointments trying to figure out what the problem was. You are of course trying to figure out what the gift was that I received during an increasingly uncertain time Well during this period of time, I was tested for problems related to the brain and the carotid artery and the thyroid. At one point, there was a theory that I might have suffered a seizure (I didn’t).
It eventually dawned on me that I wasn’t getting any better, and none of the options that could have caused the blackout were pleasant. They all had chronic issues and serious lifelong consequences. That is when it dawned on me that it was time to take back the control of my life and restore some balance – before lifelong became end of life. So the gift was that I saw the solution of retirement, and had the gift of being at the age and years of service where I could retire and focus on my health.
Of course, the gift of deciding on retirement did not resolve my health issue, and there was still about a month left after I made the decision to retire. We still did not know what had caused the two blackouts I had and the very real and increasing sense of fatigue and shortness of breath. I was frustrated because not only was there no answer to my health issues, there seemed to be no doctors who could help me. Up to that point, my doctors seemed would diagnose by exclusion and act as though my legitimate frustration was instead depression.
Then I finally reached the end of the tunnel and found an electrophysiologist who was sympathetic, who showed me the evidence of my heart problem of bradycardia, and who offered me the common sense solution of a pacemaker. He also was the one who conducted additional testing to determine that somehow, at some time, my heart had been damaged. But in addition to the pacemaker, I could begin seeing a cardiologist at the same practice to help me treat the heart damage issues. Both doctors understood that price that the heart condition was inflicting on my emotional well being and treated me as someone who had valid reasons for anxiety. Their competence is a huge reason why these doctors are still on my medical team – but so is their compassion. To find doctors who get that you are an entire package – emotional health and heart health and total body health – is a gift.
The next gift appears to be a penalty at first glance. It occurred in the summer of 2014 when I had another echocardiogram. The technician provided me a number to call to get the results. But when you get a phone call from the doctor before the results are due, you might think this is not a good sign. In my case, you would be right. The cardiologist was calling to tell me that my ejection fraction, the measure of how well your heart pumps, had plummeted even further.
But it was what he said next that sounds incredibly terrifying, but really did turn out to be a gift. He told me he wanted me to get an appointment with the advance heart failure/heart transplant program of a nearby hospital. Of course, there is only one way you can respond when your chronic condition has the term “advanced” paired with it, and it is also spoken in conjunction with the term “heart transplant”. That logical response is abject fear. But I now realize he was giving me the gift of knowledge, which when you have a chronic illness is also important. I needed someone who was an expert in this field who could look at the facts of my case – and also look at me – and let me know how serious my issue was. He could tell me if I was in the need anytime soon of a heart transplant. It wasn’t necessarily a conversation I wanted to have, but it was definitely a conversation I needed to have.
The next gift was a sister who accompanied me to doctors’ appointments and procedures over the next few months. The first appointment was with the cardiologist to learn that it would be to my benefit to upgrade my pacemaker to a cardiac device that would provide both a pacemaker and a defibrillator function. They she was at the hospital for the implantation procedure. She went to the next appointment with the heart failure doctor, and was at the hospital when the next cardiac catherization was performed. Since that time, she has been at other cath procedures as well. She asks good questions and keeps me in good spirits and lightens my load. That is more than a gift – it is a talent that promotes my healing and something I can never repay.
The next thing I need to highlight is how blessed I am each time I see the heart failure doctor. He is incredibly busy – I mean he leads the advanced heart failure and heart transplant program, and has been responsible for saving numerous lives. I suspect that his practice entails a lot of long hours, patience and skill. I know that he is popular with his patients, and I doubt he has any such thing as “spare time”. But you would never know that by the approach he takes with his patients. He is calming and spends however much time you need to keep you informed on your condition. That is more than a gift – it is a calling.
In addition to the world class treatment I receive from each member of my medical team, there is also a gift in being wired into some of the most compassionate, progressive heart care programs. I get to know first hand about the newest drugs and devices that can enhance and maybe even save my life. Plus, I have access to critical research studies that are responsible for cutting edge medications. This is exactly how I got wired into the DCM (dilated cardiomyopathy study). This will show if my DCM has a genetic link. Of course, I’ve already got DCM and I’ve already been diagnosed with heart failure. But if I do have the gene, then it will be important for my relatives to get screened to see if they have the gene as well. This would give them a fighting chance to prevent heart failure. I live in hope that I can also participate in other studies. Having a role in your own treatment – and trying out treatment innovations – is also a great gift.
The best gift is the support I have received from family, friends and the members of my church. They always ask how I am doing and are interested in how my treatment is proceeding. They have listened without complaint to all my medical issues, they have given me countless rides places, they have accompanied me to doctor appointments, they have read this blog, they have encouraged me as I started a support group. I don’t know what I would do without these people, and their unselfish assistance and empathy is indeed a treasure.
The most important gift I have is the one that my faith is based on. I am fortunate to have a God that placed me on this earth with talents and with energy to do amazing things. Whenever doubts set in about my ability to surmount obstacles, I remind myself that like Jesus, I am a child of God blessed with the promise of eternity. It would be sinful to doubt myself because that means I am also doubting the God who made me in his image. This insight now strengthens me, soothes my fear and anxiety, and allows me to live the life God is calling me to live. At this point, heart failure just makes living that life a little more interesting – but I can still do amazing things.
Turning back to my Christmas list, the things I asked for this year help me to live the life God has planned for me. The charms for the charm bracelet remind me of how charmed my life has been for 62 years. The cross necklace reminds me of God’s son and the gift of eternity that he gave to us. The exercise clothes help me and my heart to stay in shape so that I can live a purposeful life – and the cotton sweaters keep me warm as I am out and about faithfully interacting with others on this earth. Finally, the calendar is to help me plan and look forward to the many other days I will enjoy on this earth doing the work of God.
My heart and I are thankful for all the gifts we have received over the years. We hope we can return equal treasures of peace, hope, joy, compassion and friendship to all those we meet.
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.