Finding out that you have been placed on the heart transplant waiting list is a major life change. It injects a great deal of uncertainty in your life because you never know when you are going to get the call that a heart is available. In my experience, the anticipation is always more intimidating than the actual event.
When it comes to a transplant, you are not only dealing with anticipating the surgery itself and how you will feel during your recovery. You are also anticipating what it will be like when you get the call. Even though I have already packed a bag and set aside an outfit to wear, I suspect chaos will descend upon me as I quickly get dressed, arrange for transportation to the hospital and grab my bag and purse.
I have been thinking about how my life changed with the onset of Covid and my milrinone treatments. I think I am turning into several cartoon characters from my youth. I thought I would share with you some humorous takes on how my life now resembles Looney and other tunes.
The first time I felt like I was on a Saturday morning cartoon show was when I began to wear a mask every time I left my condo unit. I had an assortment of disposable and cloth masks. It didn’t seem to matter which type of mask I wore. The mask would begin to creep up into my eyes and obscure my vision. It wasn’t long before I was my one of my favorite cartoon characters – Mr. Magoo!
Believe it or not, after a month I am still tracking down friends I worked with over the years to update them on my condition. Even though I have not seen or heard from some of these people for five years or more, I knew they would be interested.
Sometimes, the last e-mail addresses I had for them went were no longer valid. I have found LinkedIn to be a valuable source to find old friends. I used LinkedIn to locate a former colleague, friend, and boss I worked for circa 2010. He got back to me within 15 minutes. While he knew I had retired because of a heart issue, like most of my friends he did not know that my heart had entered the danger zone and would require a transplant. His first comment was about how much I had been through recently. He noted my positive attitude and then said something that appealed to my spiritual needs.
If you are a Tom Petty fan, you are familiar with a song that he wrote that seems applicable to my current point in life. It’s called, “The Waiting is the Hardest Part.” One iteration of the chorus says:
The waiting is the hardest part
Every day you get one more yard
You take it on faith, you take it to the heart
The waiting is the hardest part.
In countless blog posts I have complained about all the arcane rules related to living with heart failure, but after being briefed on the aftermath of a heart transplant, I realize that I was in the minor leagues. It was good training for someone who would eventually get a heart transplant. Once I get a new heart, I will graduate from the minor leagues to the major leagues in terms of and need to adjust to an even more structured life.
All I can say is that it is a good thing that all my personality tests show that I thrive on rules and regulations. Discipline and routine are my nicknames. People sometimes make fun of how rule oriented I can be, but it looks like I will have the last laugh. This is because discipline will become my best friend, and the thing that will keep me alive and well and laughing for a long time to come.
In last week’s blog post, I explained that I now have an accessory known as a PICC line inserted into my arm. With the help of the Mayo clinic, I explained that a PICC line is also known as a peripherally inserted catheter (also known as a long thin tube). It is inserted through a vein in my right arm and passed through the larger vein into my heart. The PICC line infuses the drug Milrinone to my heart.
I have to admit that over the years when I was searching for just that right accessory to complement my outfits, a PICC line was never high on the list – or even on the list. I reluctantly added it to the list of acceptable adornments because without it, I would probably be chained to a hospital bed until a new heart was available. This is because the Milrinone, while not a long-term cure, is keeping me up and about and in an exercise mode so I can be at peak strength when a heart becomes available. So maybe I should think of it as fitness equipment and not a fashion accessory?
When I went in for my cardiac catheterization on July 22, I knew that there was a good possibility I could be admitted to the hospital. I knew that an admission would mean that my heart had really tanked, and that the doctors needed to evaluate me for some aggressive interventions – like a heart transplant and/or a left ventricle assistive device (LVAD). I also knew that the doctor would want to experiment with a drug called milrinone.
This had not come as a complete surprise. I had known for a number of years that a heart transplant might be in my future and I had read about transplants and LVADs for quite a while. Accordingly, I was not freaking out when the doctor mentioned on July 22 that a possible outcome of the cardiac cath would be to evaluate me for a transplant. But reading up on transplants does not begin to do justice to what will have to happen to get a person on the waiting list. The process of everything I went through in that five days really brought home how serious this intervention would be – plus what a miracle it would be. It is a good thing that I did not realize the full ramifications on the night before the cardiac cath because sleep would probably have been impossible. Lord knows I needed my rest for the process that was about to unfold and the decisions I would have to make.
Did you wonder what happened to last Thursday’s blog post? Well, it was suspended after five days of hospital gowns, blood tests, alarmed chairs, ultrasounds, doctor rounds and countless interviews. I think I reached to many of you in the last two weeks to let you know that I had been admitted to the hospital for tests to determine if I was a candidate for a heart transplant, a left ventricle assistive device (LVAD), both or neither.
It was an odd time in the hospital. I would go hours without doing much of anything and then all of a sudden, have technicians wheel an ultrasound machine into my room at 11:00 p.m. to conduct a test. You would think that I missed out on a lot of sleep, especially with nocturnal blood draws. But the last few nights I was in the hospital I did get some restful sleep – although not 8 hours worth. Maybe the rest was due to some medication they gave me, but I think it was also due to the fact that I knew my medical health was in good hands. The end result was that last Thursday I was advised that the board at this hospital decided that I have been approved for both a heart transplant and the LVAD. The goal is to go straight to transplant if possible, but the LVAD is out there if we need it.
My theory is that in tough times like we are currently experiencing, you have to keep your humor activated. Otherwise, the Covid chaos will just eat you up.
It isn’t just my theory. I found an article on the Mayo Clinic website entitled “Stress relief from laughter? It's no joke.” The article details short term effects of laughter/humor. One of the short term effects is that it stimulates many organs. Specifically, laughter: “enhances your intake of oxygen-rich air, stimulates your heart, lungs and muscles, and increases the endorphins that are released by your brain.” Hey, my enlarged, under-pumping heart can use all the stimulation it can get, especially in this stressful time!
In the age of Covid, we have all become weary of hearing or reading depressing stories in the news. It’s hard to remain positive and to find joy in life when you are confronted each day with the case and death count. The headlines are so disheartening that I don’t even want to read the details of the stories.
Please don’t misunderstand me. We need to face the fact that this virus is not going away anytime soon and is a real health threat and even a threat to life. We do not need to have this reality sugar-coated for us, nor do we need people to minimize the risks we are facing. But I also think humans are have more motivation to move forward and live in harmony if there is hope in life. Sometimes, but not enough times, I see glimmers of hope in stories in the media. Hope that scientists are discovering therapeutic drugs; hope that there is progress on a vaccine; hope that people are recognizing the need to act selflessly and make sacrifices for the greater good and health of all.
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.