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.
Yes, as I wait for a heart to become available, it does seem like each day I’m moving just yard by yard, with no big movement forward; however, I suspect that will change once I get the call. I will be energized to get my already packed bag, get dressed and get to the hospital to get this process started.
While I’m in waiting mode, I have learned I need to keep busy and not dwell on getting the call. It’s not that I am scared about the surgery. I have to admit, I don’t think a lot about exactly what the surgeon will be doing, nor do I need to. The surgeons at the hospital have done this process enough and are experts. It is better for me just to know that the old heart will come out and a new heart will go in, and there will be some pain and healing involved, but each day will be better.
The reason I have decided not to dwell on getting the call is that I have so much to do to get ready. For one thing, I need to get my condo in order. My sister will be coming to stay here while I am in the hospital. I keep making notes of things I have to explain to her – where she can find extra lightbulbs or other supplies; how does she get access to the voice mail on my landline phone; where are the keys to my car and the garage door opener and extra batteries; and who can she go to in the condo building in case she needs assistance with anything.
I also am trying to keep up with events that may be going on in the condo while I am in the hospital so my sister has notice. For example, from her previous stay, she is that we will be short one elevator until December of this year. Earlier in the year, there was a plan to power wash the garages with a time to be determined. A power washing would mean she would have to find a place to park my car for a day or two to get it out of the garage. However, because of Covid, and I suspect the fact that a lot of people are working from home, the power washing plan has been postponed till next year. Hopefully, I will have a new heart and things will be closer to normal by then. It is a pain to try to stay on top of these “housekeeping” type things and get updates, but on the other hand, it does give me something to do rather than sitting and waiting for a call.
I have also been trying to put a dent in the pile of paper that has accumulated in my condo. Some of the paper resulted from going through files and determining the records that are now safe to shred. However, the bulk of the paper is junk mail – some of which contains personal identifying information (PII) that I just can’t put in the recycling bin. Even if there is no PII on the mail, it still needs to be recycled which means more trips for me to the recycling bins – and more times I have to wear a mask and practice social distancing.
The junk mail also calls to mind the number of spam calls I receive. In the past, when a call came in and I did not recognize the number, I would just ignore it because the vast majority were spam. In fact, the vast majority are attempts to sell me warranties I don’t need, or to tell me there is some violation involving my payment of taxes, my social security number or some other issue that requires me to pay some money and/or call someone right away. Now I have to look at each number and think “could that be a call that there is a heart available for me?”
Right now, my rule is that I don’t pick up calls that say service call, or potential spam, or that I recognize as being a bogus number from past calls. I have always cursed the people who misuse the phone to scam and harm their fellow human beings. Now that a heart is on the line for me and my hopes go up when a call comes in, these calls are especially irritating and these spammers are especially despicable.
I also realized how much stuff I have in my condo that I no longer need, especially in the bedroom my sister will be staying in. I have been spending some time cleaning out drawer and closet space in the bedroom and getting things ready to give to Goodwill. Unfortunately, because of Covid, I read that Goodwill had a temporary shutdown this summer. While it has reopened, the hours to drop off donations are limited. Given all that is on my plate, I have to accept that I may not be able to get over to the Goodwill to drop off these donations.
I also have been compiling a list of people my sister can contact to provide an update on my transplant surgery. The list grows as more people I know have found out about the surgery and reached out to me. My minister is also helping out to cut down on the number of e-mails my sister has to send. He will send out a notice to the members of the church.
I remembered several weeks ago that I had filled out a questionnaire for jury duty in 2019. I was advised that I could be summoned to be a juror in 2020. Of course, jury duty was suspended for a while due to Covid, but a few weeks ago, I read an article that jury duty was going to resume in Arlington County in September. I found that the juror website supposedly had a feature where you could request to be exempted from jury duty. However, when I entered the website using my ID, I could not find that feature. I realized that it only would be visible on the screen if you had already been summoned for jury duty. I have not yet received a summons, but I also don’t want to have to worry about what might happen if summons came when I was in the hospital, as I would be a bit busy at that point.
I also noticed there was an e-mail address where you could send documentary evidence to support your request for an exemption. I decided to send an e-mail explaining my circumstances, submitting a copy of the letter saying I was on the heart transplant waiting list, and asking if I could be disqualified from being a juror. I received a very nice reply back from the jury coordinator. She said that she could not exempt a juror from serving unless he or she is summoned. But she also said that she would keep my documentation on file just in case I was randomly selected to receive a summons by the end of this year, which is when my qualifying year ends. That was really my goal – to make sure that someone knew of my unusual circumstances and would act accordingly if my name came up while I was in the hospital or in recovery.
While I am waiting, I give my heart occasional pep talks. I tell it that it has done a good job for the last seven years in keeping me functional. I tell it that really, the hard work is almost over and then it can rest forever. I ask it to please just hang in there for a little while longer.
I also find myself thinking what it will be like when I wake up from heart surgery. I know that I will have some pain, and there will probably be a huge area of the front of me covered in a dressing while I heal, but there is one thing that will not be there – and that is my CRT device. Yes, I’m pretty sure when I get a new heart, I will have no need for a pacemaker/defibrillator. This means that the computer mouse-like device in my collar bone area will no longer be there. Yay!!!!!! I wondered briefly if they would let me keep the device as a souvenir. Then I thought better of that – I suspect it would be pretty gross looking after having been held captive and attached to my heart for 6 years!
The waiting involves a number of times when I am wishing I will immediately get a call that a heart is available so that I can just get on with the next phase of my life. More often than not, this wishing is followed by a period of guilt. You see, it dawns on me that for me to get on with my life, it means that someone has had to die. Then I just feel incredibly guilty.
I am not alone in feeling this way. In 2018, I remember talking to someone who had a liver transplant a few years before. It was still hard for him to accept that another human being had to die so that he would be able to live. I believe it is human to struggle with this reality. So how does one cope?
The briefing I received on transplants in the hospital, as well as the website for organ donation, refer to organ donation as the gift of life. Indeed it is a priceless gift. Logically I know this. I just need to work through the emotional grief I feel that my life will be extended because someone else dies. The next step I took was one that is helping me through the process.
I went to the website for donations. The website www.donatelife.net says that if a person donates an organ, cornea and tissue, that person could save up to 8 lives. I had considered being a donor for a number of years but never got around to it. When I received the diagnosis of heart failure, I began to wonder whether any of my organs would be acceptable for donation. Then I realized that even if heart failure resulted in damage to all my organs, the tissue and corneas would probably be viable. As the website says, “People of all ages and medical histories should consider themselves potential donors. Your medical condition at the time of death will determine what organs and tissues can be donated.”
The website also says that while 95% of Americans are in favor of being a donor, only 58% are registered. Clearly, many people are like me. They think it is a wonderful idea, but for some reason, have not taken the step to make it a reality. I went online to Donate Life – Virginia and signed up using my driver’s license number to register to be an organ donor. I still need to go on the Virginia DMV website and request a replacement driver’s license. The replacement will clearly indicate that I am an organ donor. If you have always wanted to take the step to be an organ donor, I encourage you to do so. The registration process took less than a few minutes.
I have also heard that the donor families realize the depth of the act that their loved ones performed in donating an organ or tissue. Both the families and the loved ones did not view their acts as sacrifices, but clearly as wonderful gifts to their fellow humans. Accordingly, I have decided that another step I need to start to take is to express my gratitude to the family of my donor for the gift of life. I was advised that many donors send thank you notes to the donor families. This is something I would like to do. My understanding is that you can send a pre-printed note, or write your own note. I think I would like to use my own words to express how grateful I am for this gift. What better time to start than when I am waiting
for the call to come in?
To sum it up, the waiting is the hardest part, but as the song very appropriately says: “You take it on faith, you take it to the heart.” Whenever I start to feel frustrated, or scared or weary, I reach out to my minister or friends at church and we use my faith to help me make it through the long hours of waiting. I reach out to my family and friends, and their kind words and support are taken into my heart and inspire me to make it another day. We all need faith, hope, charity and lots of love to make it through the waiting part, and I have a wealth of all of those. Thanks to everyone who puts a deposit in my waiting bank to help me make it through this time.
Melanie discovered that she had heart failure in 2013. She spent the next 7 years learning how to live with the condition, and how to achieve balance and personal growth. Then in October 2020, she received a heart transplant. This blog is about her journey of the heart.