Paul's Heart

Life As A Dad, And A Survivor

“That’s The Fact, Jack!”


In one of the funniest Ivan Reitman movies, “Stripes,” a commander in the army, addressing recruits who had just finished basic training, spoke directly to a band of misfit recruits who, shall we say, struggled with the concept of basic training, and in spite of that, completed the training, “am I to understand that you completed your training on your own?” To which Bill Murray’s character barks back “that’s the fact, Jack!”

Over the last two years, we have been inundated with facts for any number of current affairs. One that personally affects me is the Covid19 pandemic. I have made it clear, that I do not rely on social media or main stream media for my decisions when it came to this crisis. Information that I relay, comes directly from the medical personnel that I deal with. Although I did have someone actually tell me I needed to find all new doctors because of the warnings I got from my doctors. These doctors had to be wrong or in with the “hoax.”

But it turns out, my doctors were correct. Their advice was accurate. The decisions that we, my doctors and I made as a team, were right.

The warning was stern for the new highly contagious and lethal virus spreading across the world, “if you get it, with the condition of your heart, it will kill you.” That was the caution urged by my cardiologist as well as all of my doctors who were in agreement. I did not need the news or Facebook to confirm anything. I had the best and most reliable resources. With no vaccine, no treatment, hell, not even any testing at the beginning, if I came down with Covid19, I was going to die.

Two things in my favor in getting through this, at least until testing and vaccines came along, I knew from prior working experience, how to deal with biological hazards. The other, the experience of having gone through so many other contagions, on two occasions, travelling right into “hot” areas (SARS and bird flu when adopting my daughters). Like all the other viruses, I knew that I had the intelligence and common sense to deal with, accept, and prevent me getting sick to the best of my abilities. The important thing was for me to get to the most important part, vaccines.

I lost my spleen back in 1989 while being diagnosed for Hodgkin’s Lymphoma. Long story short, over time I discovered that contrary to being told, being asplenic was no big deal, turned out it was. In the case of many vaccines, my body will not make antibodies as easily as it should, if at all. This had been confirmed previously with two other vaccines in my past.

While the development of the Covid19 vaccine was quite an amazing process, and while seemingly rapid, it was already previously being developed over prior years, there would still be red tape slowing the process down that needed to be overcome. Part of that process, is protocol, how many, how much, when, etc.

Once the vaccine was approved for emergency use authorization, it became a matter of who would be vaccinated first. Of course, the most vulnerable, the elderly and medical workers were first. Then came my category, the immune compromised and immune suppressed. My immune system is compromised by not having a spleen. So, “go get the shot.” Not so fast.

Remember, I know that my body reacts, or rather does not react as others who are otherwise healthy. The “protocol” for the vaccine, was one shot, followed by another several weeks later. That was it. What would happen if I got the two doses, and did not get the reaction needed? There was no protocol for additional doses. There was no protocol for a “do over.”

Having been involved in medical research and the medical community for as long as I have been, I know to expect more to come. And I had heard chatter that a 3rd dose was being researched. This was the news I was hoping to hear. But at that point, it was only chatter. I made the conscious decision, to continue my prevention behaviors while I wait for approval of that third dose. Again, long story short, that approval would come, but as a booster, administered six to eight months later. This was not exactly what I needed to hear to make my decision. I needed to hear “third scheduled dose,” in other words, weeks after the second dose. Eventually, that would happen.

Now as the title of my post states, “that’s the fact Jack!”, I admittedly took a big risk with not getting the vaccine as soon as I was approved based on my conditions being immune compromised. But knowing my medical history, it was a worthwhile and potentially life-saving guess.

The Leukemia Lymphoma Society had been studying the effects of Covid19 and the vaccines on blood cancer patients, of which Hodgkin’s Lymphoma is a blood cancer. Taking on the task, and relaying the results to the government (the CDC, the FDA, etc.), results were collected of the successes of the vaccines for those of us challenged by various circumstances.

The scientists at the LLS would have patients register, and submit to blood work, weeks after each dose to measure for antibodies from the vaccine, as well as to see if there was previous exposure. An additional blood test would follow at the six month mark, obviously to see if the coverage was still holding. And just like the vaccines were provided by the government, this blood test was covered by the LLS.

Now it was my turn to get the vaccine, and here are the facts.

Three weeks after receiving the first dose, I had zero antibodies from the vaccine. The good news it was also confirmed that I had not Covid19 antibodies either. In other words, I had never been exposed to it. So, it was bad news, good news. If my guess was right, and from what I saw with other immune compromised survivors, I should expect at least a little bump of a reaction.

And three weeks after that second dose, I did indeed get a small bump in the discovery of some antibodies. More good news, continued lack of exposure to Covid19 (pretty good considering where I live, in a pro-Covid state). The third dose was going to be a huge game changer for me. If I got the reaction that others had gotten, my antibodies would be 10 times higher than after the second dose. If not, it would not be catastrophic by any means, but not good news for sure, as I would have to rely on future vaccine developments.

The third dose was given a month after the second dose. The blood test was done three weeks later. It was confirmed, I had the anticipated reaction and the needed level of antibodies. As a bonus, still no exposure to Covid19.

So now I wait. As the healthy of you are told to get a booster due to waning coverage, you will get a third dose. If my coverage wanes, I have already had my third dose. I am hopeful though, as I am aware of studies of a fourth dose, and that would apply to me.

This is how science is supposed to work. Research, discover, apply, and believe in. It is heartbreaking the number of people not just believing the false information that is out there, or the conspiracy theories, but aggravating of the number of monsters out there promoting the erroneous information, and nothing is being done to stop it.

I know the current vaccines do not prevent infection. I know the current vaccines do not prevent spreading. And for that, we have to rely on all the things we were recommended to do from the beginning. It is frustrating, because had we all been on the same page back in the beginning, I do not believe we would have had over 800,000 dead Americans. The war cries of patriotism and tyranny all in effort to protect the health of our citizens was a false argument.

I have never lost any freedom by wearing a mask. I still support local businesses. And the only thing preventing me from going to a movie theater or concert ever again, has nothing to do with regulations, but rather the fact that we have so many pigs in our country that need to be told to wash their hands and cover their mouths/noses when they cough/sneeze.

Science says, we will continue to have variants because we did not shut Covid19 down when we had the chance, while there was still hope. And now, while we have vaccinated and unvaccinated, it is the unvaccinated we will continue to see roll the dice, with repeated infections, longer lasting effects, and more deaths.

I lost my younger sibling to Covid19 back in September. She made a foolish choice, and it cost her, her life. And if you had the chance to ask her before she came down with Covid19, I am sure she would have said, it was worth the risk as opposed to a side effect from the vaccine that could be dealt with. She got her answer.

As someone who never thought he would get cancer, never thought he would need heart surgery (let alone three of them), and countless other surgeries, do you really believe that something can’t happen to you, just because some nut job on a right wing network or social media says so?

Like I said, I have had to deal with my health, and viruses a long time. I know how to protect myself, through science. At this point, it will probably be another three years before we have Corona virus where it is manageable to where deaths will be the same as the flu, as opposed to the argument that Covid19 is no worse than the flu. Yes, yes Covid19 is worse than the flu, 16 times worse at least in deaths. And that is the fact, Jack.

Thanksgiving Times


I have always told my daughters to “stay young,” and enjoy their childhood.

In a previous post, I mentioned the difficulties that I have with holidays. I wanted to make sure that my daughters did not experience my grief and struggles, especially during this time of year. I really do not have many memories of Thanksgiving as an adult, other than my diagnosis of Hodgkin’s Lymphoma, and a few photos of my daughters with arts and crafts that they made in school for the holiday.

As a youth myself, I do have a few memories that I am able to recall, fond ones in fact.

There was the annual Thanksgiving Day high school rivalry football games, played early Thanksgiving Day chilly mornings. Usually there was a bonfire and pep rally held the night before, followed by a school dance.

There was also the “powder puff” flag football game where the girls got to play the football game, and yes, the boys were the cheerleaders.

And still, before we got to the official NFL turkey day game, many of us got together to play a game of football ourselves, a tradition from childhood, thru adulthood trying to prove we still could do it.

This time of year also meant the return of holiday specials that we looked forward to, the same ones, year after year. These timeless treasures are still so entertaining as they were fifty plus years ago.

But if there is one memory that I do miss about Thanksgiving from my childhood, is a particular item on our annual menu, stuffing. Not just any stuffing either.

Stuffing cooked in the bird! There is/was nothing like it. It is pretty much unthinkable these days with all the awareness of the hazards of this delicacy. But back in the day, we had four particular starches on the Thanksgiving table, mashed potatoes, sweet potatoes, homemade bread stuffing (a Pennsylvania Dutch recipe, simply the best!), and stuffing from the bird (this was actually the regular stuffing, just stuffed into the carcass of the turkey, as well as chickens at other meals).

This is the part where you either think this is the best side dish in the world, or you turn your stomach. The stuffing cooks inside the turkey as it cooks, absorbing the flavoring of the turkey into it. Think of it no different than adding stock or gravy for flavor. Now of course, the problem is, the turkey before being cooked, is raw meat, laden with bacteria that can lead to an unpleasant way to spend the holiday.

BUT…

As the most popular side dish back in my childhood, so popular it was always the first thing put on plates, there was only so much of it available, which fit inside the bird. It did not matter that my grandmother made to complete dishes of regular “filling” (what we called it), it was the “filling from the bird” that everyone wanted, and it was likely, that depending how many were sitting at the table, someone might be left out without any on their plate. But the flavoring of the “filling from the bird” was like no other.

Besides the fact, that we ate turkey leftovers for days, another way to turn over the left over “regular” filling, my grandmother would then make “potato pancakes”.

I have a lot of these memories, alas, they were all prior to my grandmother passing. As many families experience, losing such a prominent matriarch of a family, families often struggle to remain committed to these family holidays. As was our situation. Add in my diagnosis in 1988, I never looked forward to this holiday again.

With the arrival of my daughters, I did my best to once again, embrace the holiday. While the holiday itself still meant nothing to me (I worked every holiday, something I regret and resent), it did signal the beginning of the next season, Christmas, and traditions that would follow such as decorating, and of course getting their Christmas tree. I will save these memories for their own post.

There is a reason I tell my daughters to hang on to their childhood as long as they can. It only lasts approximately eighteen years. That is not a lot of time to have all the fun and memories you can pack in.

Happy Thanksgiving everyone.

Poster Child For The American Heart Association


The caption for this photo may be a little hard to read, or even recognize. But this photo is a forty year old photo of me, in my senior year of high school. You just have to take my word for it, unless you can actually read the blurry print accompanying the photo, but it is me. The significance of this photo as it turns out, is pretty strong, especially if you believe in fate.

How many times have you been somewhere, and donations are being collected for a specific cause such as a homeless shelter, perhaps someone who lost a home in a fire, funeral expenses, anything really? Some may think that spare change or a few dollars will not make a difference and not put anything in, or perhaps they will. The truth is, you never know the impact it has on the benefactor. Unless someday, you end up in that situation yourself.

So, here is where the photo came from, my senior yearbook from high school. Forty years yesterday in fact, was to be a “jump rope-a-thon” to raise money for the American Heart Association. It was to take place that morning, from 9am to noon (basically two periods and my lunch time). Teams of up to six were to participate. Usually this event has a pretty good turnout.

And then, one parent became a killjoy, contacted the school district administration to complain about missing classes, and a district administrator then, put pressure on the coordinator at the high school to change the date and time from Friday to Saturday. Well, you guessed it. The fundraiser was cancelled due to lack of interest to be done on a Saturday morning.

I had been raised with the mentality to make a difference wherever I could. And though I was unaware of anyone in my family who had ever had to deal with heart disease in any form, I felt this was too important not to happen. So I approached the gym teacher and said that I would still like to do the “jump rope-a-thon,” solo (as my team was not available with the proposal I was about to make).

As it was my senior year, I had two study halls at the end of my day. Add an extra hour after school, I offered to jump rope, for the entire three hours as the event would have been conducted, that same day, only in the afternoon. Other than jumping rope in gym class, I have never trained or endured any extended time jumping rope. But I was a kid of 17 years of age. How hard could it be?

With a five minute break every half hour to either drink water, or use the bathroom, I completed the three hour challenge/fundraiser, raising $170. But that was $170 more than what the AHA was going to get thanks to the efforts of a whiny parent. Yes, I said that. Considering today that kids miss classes for all kinds of activities, even “tolerated” “skip” days. Yes, as a parent, I know about those as I have older teenagers.

Anyway, getting back to my effort, I did not give it any further thought. I felt good about what I did, and that it would at least benefit someone. As I got older, I would have relatives who would be diagnosed with heart disease. My grandmother would require a pacemaker. My father would suffer a major heart attack. I never forgot about that day that I jumped rope for three hours, grateful that hopefully my efforts helped research in treating cardiac patients.

Now for the kicker. I never expected to be one myself.

As a result from being treated with an extreme dose of radiation (4000 grays, you can look it up, that is bad) for Hodgkin’s Lymphoma, combined with the toxicity of chemotherapy, damage to my heart developed over the next eighteen years.

This is a diagram my new doctor, a cardiologist, was using to explain what was happening to me. Cumulative damage from radiation therapy, over time, had caused enough scarring to block the left main artery to my heart. Though his note said 80-90% blocked, it was confirmed 90% once inside. This resulted in an emergency double bypass to save my life before having a heart attack referred to as a “widow maker.” I do not need to explain to you how serious that is, because the name speaks for itself. You die from this.

It would be nice, if that is where the story ended. The doctors left the one marked “RCA” alone, as it was “only” 30-40%, and expected my body to fix itself, with proper diet and exercise. Not shown here, is the report that also showed I had an issue with two, eventually three valves inside the heart. Again, they too would be assumed to recover on their own with a lifestyle change.

Unfortunately, there is no lifestyle change that can be made to reverse these late developing issues from radiation and chemotherapy treatments. Eleven years later, I would have my second heart surgery, which even looking at that word “second”, I could never have imagined having one, let alone another. Remember that “RCA”? Well, in 2019 it reached the 90% threshold. Fortunately, this was correctable with a stent.

You see, one thing about us Hodgkin’s survivors who have been exposed to the extreme treatments that we were, we carry extreme risks later in life, with corrective surgeries, especially open heart surgeries. One open heart surgery is risky enough, let alone a second one, with risks being bleeding to death, to difficulties healing.

A warning came along with this stent. One of those valves, discovered back in 2008, was nearing severe need to be replaced, likely to occur within years of having the stent replaced. And a couple years later, that valve needed to be replaced, my third heart surgery.

There are no guarantees how long each procedure will last, and as of right now, patients in my situation are not usually candidates for heart transplant because of all the risks. It is quite jarring to see the words “heart failure” written on your medical record, and only recently, were the words “radiation induced”, a crucial distinction and finally a recognition of a condition as a result of extreme levels of radiation exposures and toxic chemotherapies.

I would like to think that is the end of the story with my heart surgeries. I know that it will not. Part of the close surveillance that I am under, because it is important to follow up all of the repairs, that the bypass is still working, the stent is still open, and the valve operating as planned, these things are not permanent. Meaning? I am likely to undergo more heart procedures in the future. I do not know when, just that it will happen. The good news is my bypass is still doing great (I was told 10-15 years) as I am near my limit on that, with the bypass still holding at 40%! Stents and valves are not permanent, expectancy is usually ten years or less, I have a ways to go on both of those.

For now however, I am riding my new “feeling” of health for as long as I can.

Post Navigation