Paul's Heart

Believe

If you are looking for the most positive Christmas story, miracle, or whatever you want to refer to as what is happening today, you are going to read it here…NOW!

Jessica is headed home today! That’s right, if you have been following the last several posts about her, less than two weeks since her miraculous heart transplant, resulting from a massive heart attack more than seven weeks ago, she is being released from the hospital.

The story is so unbelievable, so many things against her survival. I know, because like Jessica, I and many of my fellow long term Hodgkin’s survivors share the same complicated health histories. When we first found out that she had the heart attack, and subsequently learned that the event actually lasted over twenty-four hours before an ambulance had to be called, all we could do is see the updates about the efforts to save her life. And by save her life, that is, multiple times.

While Jessica had a lot against her, which I will go into in a moment, she had some things clearly in her favor. She is a physical fitness trainer and rehab specialist, clearly in good physical conditioning. And her age, being a gentleman, I will not say her age, just that she is younger than me, to be clear, I consider myself young.

But yes, she had a lot against her with her health. Her heart history was not as colorful as mine, but she had a prior heart surgery, along with her multiple bouts with several cancers. A common issue amongst us as Hodgkin’s Lymphoma survivors, is complications from our treatments of high dose radiation or toxic chemotherapy. Jessica was no exception. 

Once Jessica had been considered stable enough, the news came, she would need a heart transplant in order to live independently. Let me put this in perspective for you. In my thirty-three years of remission, and the hundreds of survivors that I have come across and met, I knew of no one, no one who had ever had a heart transplant, or even qualified for one. In recent years, a few survivors had come close, but passed before the opportunity became possible.

Jessica’s situation was serious, and with a transplant her only option, her fellow survivors knowing the odds of that happening, all we could do is wait. Then news came, she not only qualified, but they had found a donor.

In my years of following other survivors and their surgeries, I am all too familiar with the complications that can arise from fluid in the lungs, infections, and worse from lesser surgeries. In a good number of surgeries, this was the case. And we would expect the same for Jessica as far as concern. But guess what? Except for a few rough moments in the beginning, her recuperation went only forward in progress. I will spare the graphic details, but long story short, it brings us to today, Jessica is going home!

She no doubt has a long road ahead of her, medications, rehab, and of course emotional care. Oddly, this is one area that I have no experience in because I have never seen this moment before. But this is a moment, that I and many other survivors will build on for the future. Just like all the progress that has been made in treating Hodgkin’s Lymphoma, and dealing with our survivorship issues, we seem to now have someone, and answers of where to turn to, when and if we ever have to face the prospect of a heart transplant ourselves. Jessica is showing it can be done, and perhaps, maybe should be more seriously considered for our survivors in the future.

Honestly, this is such a great story, and Jessica is a writer herself. And from what she has told me, she has one helluva story to write.

It’s Not The Number That Bothers Me

Somehow I made it around the sun another lap, another birthday. Some will often whimper about their increasing age, all the while hailing the extension of the day of the actual event of their birth to a week long celebration, sometimes even a month. My younger daughter upon looking at a class reunion photo from this year pointed out, with all due apologies to my classmates, “everybody looks so old”. Of course, we are all the same age, but some of our physical characteristics have changed, some a lot. In all fairness, though my hair remains its natural brown color, with shades of pepper underneath the length, my beard on the chin is completely gray thanks to my father, who also carried his natural hair color his entire life. Thanks Dad.

I am glad to be the age that I currently am. I am glad for the next year that I turn older, and so on. I do not look at turning older as a curse, as that same daughter would say, it is indeed a blessing.

What I do struggle with, is the actual date. Speaking of cursed, though I share the same birthday with many I personally know, this date, and the time around it, is not a period I look forward to at all. Again, I don’t mind turning another year older. It is just for me, so many years, there has been so much darkness and crisis that have occurred the same time.

In 1974, I was not even in double digits of age, when my aunt was lighting my birthday cake on an outdoor side porch, next to a stack of newspapers she had accumulated to recycle… do I really need to explain the next part? She brought the cake, having only nine candles, not like the image on this post, into the kitchen where I and the rest of my family were sitting, and trying to sing Happy Birthday to me. My uncle just happened to be stopping by the house, when he burst into the door yelling “fire!” to which my grandmother pointed to the cake and said, “yes, right here.” Again, my uncle yelled “NO, FIRE! ON THE SIDE PORCH!”

Fortunately, the fire was contained to that porch. But the smell lingered in the house, for many days. I can actually still “smell” the burning when I think about it.

The next year, while jokes were made that perhaps we should only have ice cream for my birthday, something I would not have objected to, my birthday went without a hitch that time. But the following year, turned that time period for me on its head. Three relatives had passed away, just before Christmas Day through New Year’s Day. This darkness, or curse if you will, continued on. I have mentioned about my diagnosis with Hodgkin’s Lymphoma just before the holidays began. My stepmother was hit by a car, critically wounding her, days before Christmas. My first wife had been in a head-on car accident just after the new year began.

Only after my daughters came along, did I seem to give the holidays a break, enjoying them once again. But in filing for divorce, anticipating high conflict, I made a decision to eliminate one potential source, custody visits during the holidays. I gave their mother all of the holidays, while trying to schedule time with me on dates surround the holidays instead. My birthday, falling in December, the week before Christmas would also be sacrificed. And so, my dark attitude about my birthdays and holidays returned, they were just other days.

As if I needed any more reasons, my health jumped back into the holiday ho-hums saying “hold my beer.” Heart issues that had been on “watch” since my bypass in 2008, had begun to worsen and need attention. Sure, that was bad enough, but this was occurring in 2019, the beginning of Covid-19. Because of how quickly and deadly the spread was happening, and with the need to avoid infection of Covid-19 so I could undergo the first of three annual cardiac related surgeries (that had reached critical levels), it meant my daughters avoiding travelling to see me, so as not to bring Covid-19 to me. Both my daughters, though understanding the risks, agreed with the decisions that needed to be made. This happened twice in the last four years.

This year I was determined to give the season just one more shot. My health has been stable. With my younger daughter aging out of the custody agreement, all visitations with my daughters are now handled between the three of us. They made the decision, that they would come visit me, for my birthday, something that has not happened in ten years. Clearly this would have a profound impact on the direction of how I usually spend my holidays. I was excited. We all were excited.

Then a call came from my oldest daughter, just two days before they were set to travel to see me. Covid-19 had hit their house, not my daughters, but they were now exposed. With no time to test during the incubation exposure period, we all agreed, not this year. I could tell my daughters were upset, as was I because everything had been going right.

So, here I am, another holiday season, just looking at it as just other days, as usual. Do not mistake me though, I am very happy for everyone who can get through these days, celebrating joyfully. But there are those, I know I have friends, who are going through this holiday season for the first time, following the loss of someone close to them. And they will also do what they must to get through these days.

I am not afraid of getting older. I actually welcome it. With what I have to deal with in regard to my health, each year more that I get to call myself a long term cancer survivor, is a win in my book. The fact that I have to see so many doctors so often, is not a bad thing. It means that if something does develop, it is caught early, hopefully. This is actually an advantage over someone “healthy” who does not see a doctor regularly, until an emergency room visit via ambulance. It does not mean that I obsess about sickness and death. It means that I live on in spite of any potential concerns. And for as often as I hear “oh yeah, well you could be hit by a car crossing the street,” yes, but you may not have someone “pushing” you into the path of that car like my health does.

I don’t live my days like each one might be my last. I do go to bed each night, with things I have planned to do tomorrow. And that is different. And so far, I have had 35 years of waking up with things to do the next day since I was diagnosed with cancer. 

Jessica – Marching To A New “Beat”

I was messaged last evening, Jessica (from last post) underwent a heart transplant yesterday, had a good night recovering, and is now awake and talking. To say this is exciting and welcomed news is an understatement. What has just happened will have a major impact for all, not just those in Jessica’s life.

To understand where Jessica started from, she is a 4 time cancer survivor. That should be enough of a medical wonder. Similar to me, treatments that she received for her treatment of Hodgkin’s Lymphoma, caused long term damage to her heart over the decades requiring her to have a heart surgery to replace one of her valves.

Now, I will stop there for a moment. In my lifetime as a long term survivor of Hodgkin’s Lymphoma myself, dealing with multiple cardiac issues, one thing I am more than aware of over the decades, many of my fellow long term survivors find themselves in need of a heart transplant. But because of the various damage we deal with, and the complications that can arise, we are less than ideal candidates for a heart transplant. After all, doctors do not want to “waste” (I hate using that word in this case) a donated organ, on someone who is not likely to survive. And so, in the hundreds of people I have come across in my survivorship, I have never heard of anyone having a heart transplant, and only a few actually qualify, only to succumb prior to the surgery for one complication or another. One important side not, I do know a doctor who is aware of two survivors who have gone through a heart transplant successfully, but I am unaware of who they are. But Jessica makes the first person I, and many other survivors know, and personally know, to now have undergone a heart transplant.

Post-transplant will be no cakewalk. She will be observed for several days for any complications as she recovers. And then, they will likely start to get her moving. There will be a major part of her recovery that will require help, emotionally. Many open heart surgery patients, myself included, will mention the emotional struggles of surviving a near fatal event and surgery. And then of course there will be cardiac and physical rehab.

Many of us hope that she gets strong enough, and well enough to go home in time for Christmas. It is a lot to ask, but Jessica is a very strong willed woman. She will have to adjust to a lot once she is released from the hospital and no doubt, with so many eyes on her (other survivors), she will have plenty of support. There are so many questions we have, and they will wait until she is ready to answer them.

Whether you believe in miracles or any other positive energy, today is a great day!