It was December 24, 2014 when I first heard the words “heart failure.” I wasn’t feeling great but by no means did I think it was anything serious. I prided myself on healthy living and eating.
January, 2015 was when I was first hospitalized for my condition and spent a total of 66 days in the hospital. I had a crash course in heart failure by asking my doctors questions, writing down my diagnosis and researching from my hospital bed.
I was diagnosed with a dilated cardiomyopathy. After additional testing, my medical team informed me that my heart disease was idiopathic – not genetic or viral. A transplant coordinator spoke to me about transplant and the evaluation process. My family and I were upset when the possibility of needing a heart transplant was presented to me. However, I was in advanced heart failure and a solution was needed, despite being in denial about the seriousness of my health.
Heart transplant evaluation is thorough. They need to make sure the patient will be compliant with post-transplant care, have support from their family and friends, and the financial means to maintain the new heart. Post heart transplant medications cost $7,000 without insurance and medical costs add up quickly. In addition, a patient needs to have clearance from a dentist for no abscesses or cavities. A cat scan of the chest is needed. For a match, the donor has to have a matching blood type and the new organ has to fit inside the chest cavity. A DEXA scan is needed. An ultrasound of the carotid arteries and the abdomen is required to make sure everything is clear.
A pulmonary walk and function test are needed to make sure the lungs are working properly. Finally, a cardiac MRI is needed. After the coordinator receives the test results, the patient is presented to the transplant team. They discovered a spot on my lung and needed additional testing to rule out tuberculosis before they could proceed with my evaluation. I was to be presented to the team on March 11, 2015. I was too sick and my evaluation was moved up to emergency status.
Most of my testing was completed when I was inpatient since my health continued to decline. On February 21, 2015, test results showed that my ejection fraction dropped to a 5% and I would need a new heart or lvad (left ventricular assist device) to stay alive. I was in end stage heart failure. End stage heart failure! My head was spinning. Fortunately my test results were in the necessary range and on February 27, 2015, I was listed for a heart as a status “1B.” My coordinator and nurses were so happy when they told me and I broke down in tears. I still couldn’t believe this was my fate.
Heart transplant candidates are given a status. “1A” – patients who are unable to leave the hospital. “1B” – patients who can live outside the hospital but on a life support device (a lvad). “2” – patients who can live on medication and finally, status 7. Status 7 means that candidates are inactive. A patient may go to status 7 if they go on vacation or for any reason they would not be able to get to the hospital in time. Keep in mind, hearts are good for a max of three hours outside of the donor. I would need to contact my coordinator if I was going to be two hours away from my transplant hospital. A transplant candidate needs to have a charged phone with them all the time. One never knows when the call will come. Lastly, we are informed that on average, the transplanted hearts lasts 10 years. I am hopeful that mine will last much longer!
March 3, 2015 was my first open heart surgery. That was the scariest thing I had to face in my life, until I was transplanted. The lvad is a wonderful device but it isn’t an easy way to live. My first transplant call came at 7pm in April 2015. Roughly 12 hours later, I was informed that the heart was not viable. My second call was at 9pm in May 2016. This heart was a high risk heart and the donor passed from a cocaine overdose. It was another 12 hours before I was informed that the surgery was not happening. My emotions, while waiting for them to take me to surgery, are all over the place. There is a feeling of relief and pure terror.
Third time’s the charm! The call came at 3pm on September 21, 2016, just as I finished teaching for the day. My coordinator told me there was a perfect match and to get to the hospital as soon as I could. They do not want the patient to drive, and for good reason. A coworker drove me and I spent the 45 minute drive to the hospital on the phone contacting family and friends. Again, emotions are all over the place.
I was in the CICU by 5pm and pre-transplant prep started. Everything has to be in order for the transplant to proceed. There cannot be a trace of an infection, etc. because it would magnify when the immunosuppressive medications start. By 645 pm, my parents and two friends wheeled me to the OR. My surgery was ten hours and the heart went in about 2am. I woke up for a few seconds at 7am and was relieved to know I survived.
Open heart surgery hurts. There is no way around it nor a good way to sugarcoat it. It hurts. And I survived two of them in 18 months. Recovery, of course, is difficult and a walk down the hallway would result in a nap directly after. I had mild rejection a few times in the hospital, but I had a truly bad one a week after I was discharged. For some reason, my body wasn’t metabolizing one of the anti-rejection meds, a generic brand. Now I can only use a brand name.
Outpatient cardiac rehab is also a part of recovery. The first year is the most difficult and returning to work is not recommended until that year is over. I attempted to return to work, a high school teacher, but had to resign after four months because of drops in test results and my overall exhaustion.
Over the past three years, I have been determined to stay as positive as I can. At times I wondered, “why me?” Other times I thought, “why not me?” I have three siblings and they have young children. I do not have children so if it had to be one of us, I was the best choice. I hope that further research on my heart will indicate the cause and my siblings and their children can be tested. I would not want anyone else to have to go through what I experienced.
I am forever grateful to my anonymous donor. I have never regretted choosing life, even during those most painful moments. I am doing my best to enjoy life and live to the fullest. That is not to say I am not worried about my health but I am not letting it stop me from living.
When facing a catastrophic health condition, especially when blindsided by it, completely changes a person’s world. To keep myself grounded, I would remind myself that “it is what it is” and that I was going to do what I could to extend my life. My life has changed and I had to say goodbye to my career but it reminds me of a quote by Joseph Campbell:
‘We must be willing to let go of the life we planned so as to have the life that is waiting for us.”
I am not sure what the future holds for me but I know I will do it with joy in my new heart.