Basically, I am a creature of habit. Whether you are on the wait list or have already received your new heart, our habits have advantages and disadvantages. Some of those habits we can throw out the window. Diet is likely to be one of the most difficult habits to change. In my case, my daily wait list routine was easier than the routine during the post transplant period, when the unexpected can happen quickly and without warning.
One thing is certain. During the wait and after transplant, you are going to learn more about yourself than you ever expected. Before my transplant, when my heart rate went to 90, I literally had to lie down and rest. It was exhausting. With my new heart, my normal heart rate is 110.
When unsuspecting nurses takes your heart rate and it is 125, they get pretty excited. I feel great at 125 and do not really stop exercising until the 135 threshold is reached. Now, I have learned how to slow my pulse and be more patient, which has never been my strong suit. What a difference!
During your wait list time, you will set a routine for your wakeup vitals, including your weigh-in, pulse, blood pressure and temperature, your daily prescription medication intake and whatever other information tells you where you are. I found that recording this information on a simple table format on my pc helped me not only track my progress but was information the cardiologists seemed to devour. It also saved answering the same questions over and over again.
I would always record those other times when my pulse was running high or low. If those symptoms persisted, I would call the cardiologist. For some reason, it always seemed to happen on weekends, not the best time to reach your caregiver. But, you have to do what you have to do.
My wait list routine consisted of those early morning vitals, an all-natural smoothie, which I came to love, and my morning medications, which I logged on my pc. After that, I would take my son’s dog, Lola, for a duty walk and return home within 30-40 minutes. In Florida, the sun was so warm you have to feel good.
Then, it was time to catch up on the news of the day. You may not feel like it but it is important to stay engaged. Often, friends and family would ask how I felt. The truth is, they would rather talk about the Dodgers, the Tar Heels, the economy, politics or any other world event. Your wait list experience will be quite boring conversation for most people. It is a good subject to put aside during social occasions, which became more infrequent as time marched ahead.
Large crowds and little children are also problematic. You must be disciplined in these situations. That means either decline the invitation or commit to wearing a mask. If the mask embarrasses you, you should have the will to forego the event. If you are with grandchildren, explain that you feel fine and your mask helps you stay that way.
If you catch a cold or the flu or any common illness, you will remain on the wait list but will be considered too sick for a transplant. That can change you to status 7 in the blink of an eye. The common cold could easily keep you off the ready-to-go transplant list for 6-8 weeks. Ugh!
If you want the heart, commit to it. No compromises. Yes or no! There are others patients desperate for that heart so make the tough decisions and eliminate risk factors.
After the heart transplant, you must maintain that same record of compliance. There are no short cuts. If you read about the medications that you are consuming in large quantities, you will see how large the risks are for consequences. This is when your routine must be the strongest.
Honestly, I was as healthy as a person with end stage heart disease could be. My salt intake was zero. My weight was always within seven pounds, I walked every day and when I could not breathe well enough to walk, I did mild leg exercises in the pool. This really helped with circulation. All my other organs were healthy. Walking was good for me spiritually, emotionally and physically. It wasn’t always easy or convenient, but walking was a necessary discipline both prior and post transplant.
Believe me, physical exercise and competition were big parts of my life. Now, competitive sport is a goal but may be a bridge too far. It has taken me sixteen post transplant months to accept a few things about what nurses and doctors quietly refer to as “the new you.” The assertion is that the new you is the person that emerges from recovery and the chances are that there will be differences between the “old you” and the “new you.”
I have had more setbacks than could have been expected, but as I learn to walk for the fourth time in fifteen months, I feel the light at the end of the tunnel. Six weeks ago, I weighed 174 pounds, I was walking three to four miles a day, I had an appetite and I was lifting light weights for forty minutes every other day.
I felt great and truly blessed despite recent surgery that necessitated removal of two ribs and which, along with a steel rod and some mesh, replaced my aspergillosis infected spine between discs T6 and T7.
Within three days, I could not breathe. Then, I could not walk. When I could not stand, I went to the emergency room and set in motion a series of tests that resulted in the removal of my gall bladder which was filled with 20 stones. After the surgery, the doctor gave me a photo of the infected gall bladder saying “save this because when you tell people about it, they won’t believe it.“ An x-ray had revealed the presence of just two stones a week earlier.
More intimidating was the detection of serious blood clotting from head to toe. This resulted in large quantities of blood thinners and all the repercussions that accompany those powerful medicines.
Today, I weigh 146 pounds and cannot walk 100 feet. Now, that I have returned to Florida, that will improve every day.
Honestly, there were times in the past six weeks that it was touch and go. There were draining conversations about the possibility of cancer. Fortunately, the tests were negative. But, when asked how this happened, it is unsettling to receive what has become a pretty standard answer to a few of my ailments “Mr. Doolittle, we may never know.” This is an unsettling repsonse to “What caused this?”
As I look back on this latest recovery episode, the habit of meditation and prayer that were developed during my time on the wait list were instrumental in my will to keep moving ahead. I believe strongly that every wait list candidate and every post op recipient should meditate and pray. You will have plenty of time because there are many sleepless nights.
I never considered myself an overly religious person. I am married to a woman of strong and great faith. Occasionally, I go to a private sanctuary and give thanks. I cannot stress the importance of taking 30 – 60 minutes a day to quiet yourself.
Yes, you can do it. This is as important as eating, walking and taking your vitals. Consider this your very own time for a talk with yourself. You know that every great athlete or performer digs deep within themselves to find the strength they need to excel. You are no different.
That quiet meditation and prayer yield positive energy, a brighter outlook and the inner strength you will need as you begin your new life. Do this for yourself and for all around you. The importance of your mental health cannot be overstated.
Lastly, please do not be alarmed by my experiences. Most transplant patients do not have these after effects. However, get tough on yourself, for you are headed for a wild ride on the wait list and on the way to your new life “on the other side.”