As I’m recovering from my second heart transplant a little over a month ago, I’ve started walking with my son back and forth to school. His school is about a 1/2 mile away and affords a nice walk through the park, over a bridge and down a tree-lined corridor to a beautiful junior high school. Here are some photos from those walks. Click to enlarge.
The Passage of Time
Time has always been important to me, both in the musical context, and in the context of my life, how much time I have, and how I choose to spend it. It’s even more important now. I've been given more time. And this is the last chance I’ll get.
My recovery will take time, but each day I'm 1000x stronger than the previous. Like this image, the clouds are moving, whether you realize it or not.
And I think it’s a beautiful metaphor. It’s easy to get discouraged. You don’t always see the progress you are making. In my life as a musician I have hit many plateaus, feeling like I am stuck and no longer gaining. It can be difficult to ascertain what your next move will be. But even if you feel stuck, if you keep moving forward, you will keep progressing.
And since waking up from this surgery, I haven’t stopped moving and I do not intend to. I have many ideas, musical, artistic, many thoughts to express, and I will fearlessly express them.
I’ve been given more time.
Recovery
…from open heart surgery
Step 1: Have Open Heart Surgery
Step 2: Wake up in ICU
Step 3: Nurse asks you to walk WAY sooner than you think you can handle. Contemplate. Let them help you. Get up and do your best.
Step 3: At the end of your first walk if your nurse says “do you want to do another lap?” – don’t think about it. Say yes. DO IT.
Keep walking, doing extra laps.
Cry.
Laps.
Tomorrow is the second biopsy, two weeks after my second heart transplant.
Today I walked.
The Call
Just got the call, 1:45am. This is day 23 of waiting, which is only 1 day longer than I waited for my first in 1997. Only this time at home status 4. What are the chances? My surgery is tentatively scheduled for 5pm today, September 16th, 2021.
I'll update when I can. Thank you all for reading and for your support.
Going to Church - Day 21
This may or may not surprise you. I’m an atheist. Always have been.
I do go to church however. Let me explain.
Cleveland doesn’t have the greatest reputation, but what it does have is an incredible museum scene. In fact, the Cleveland Museum of Art is one of the best in the world. Growing up and taking field trips to the museum was amazing, but as an adult and a developing visual artist, being able to see one of a kind original artworks was incredible. It was there that I discovered Church.
Frederick Edwin Church that is.
Twilight in the Wilderness, 1860. Frederic Edwin Church (American, 1826-1900). Oil on canvas; framed: 124 x 185 x 13 cm (48 13/16 x 72 13/16 x 5 1/8 in.); unframed: 101.6 x 162.6 cm (40 x 64 in.). The Cleveland Museum of Art, Mr. and Mrs. William H. Marlatt Fund 1965.233
This painting reaffirmed something I had always known deep down. It captures a feeling that I knew as a kid, and I started to know again as a photographer recovering from a heart transplant.
It’s that feeling of the power and majesty of the natural world. Anyone who goes camping regularly surely already understands this, the feeling of being connected to it all, yet also feeling so small and insignificant. It’s not negative, it’s just a realization of how big it all is and how small you are in it.
It keeps me humble and it’s something I need to revisit often. A well I need to refill. Since seeing Church’s painting in person, I had started referring to nature as my church.
I don’t get out much these days both due to Covid and my worsening health, but I can still get to the ocean and to the mountains. Santa Barbara is particularly beautiful because it’s sandwiched between mountains and ocean, and I still try to remember that feeling I had when first driving into town, seeing the palm trees, the ocean, and the mountains, all in one view.
So please indulge me if i continue to post images from the mountains to the sea. It’s all I have right now and it’s keeping me connected.
On top of the mountains above Santa Barbara, looking northwest into the Los Padres National Forest.
Nothing Special - Day 20
20 days, came and went. It’s gonna be a long year. Nothing new tonight. Just an image.
The Pacific ocean as seen from the Douglass Family Preserve. Click to enlarge.
Special - Day 19
Just a simple observation tonight. Hopefully a thought provoking one.
I went to the mountains tonight to watch the sunset. It’s quiet up there. All you hear is the breeze bustling through the trees, the insects making their chirps and whizzes, the occasional small animal stirring the bushes. I got the sense that I was surrounded by life. The mountains are teeming. Every square micron of Earth is teeming with life, and 99% doesn’t know about us or care about us one bit.
Why do we think we are so special?
Bucket List - Day 18
I’m sure you’ve heard the term bucket list. I’ve never really thought about it until recently. I don’t like the idea of the cliché “skydiving, bungee jumping, getting a tattoo, etc bucket list (all fine ideas–well maybe not skydiving)…
Instead I’m thinking of it more like an accomplishments list. What are the things I want to make sure and do before I become fertilizer. And by do, I mean, like an endeavor. What do I want to do as a human being, to say that I was alive here once.
Well, if you’ve read my previous posts you know that I’ve been a musician almost all my life, yet I’ve never recorded an album as a leader. Never my own original music.
So that’s going to change.
When I moved to California in 2009, it was to attend Brooks Institute and get a degree in photography. I was really focused (pun intended) on that. I had gotten burned out in Ohio from the same old same old. I was working as a graphic designer and a photographer and playing music and just really feeling like I was going nowhere.
So when I got here I was pretty much solely focused on photography. I met some local musicians and started to play casually but photography school is hard and eventually I just quit playing music altogether. (Did I mention that my son Eddie was born 5 months after arriving? Yeah, things were tough).
And that hiatus from playing music lasted almost 7 years. But during that 7 year hiatus I never stopped studying music, listening to music, and playing in my mind. But that wasn’t enough. I learned a valuable lesson that I can’t ever let go of music again. It’s too core to who I am.
So I started playing again and for the first time I really got connected to the larger music scene in SB and I have to say, this town is full of incredible musicians who have really helped me dust off the cobwebs. In fact, one of these incredible musicians said something to me once that really lit a fire. It took me a several months to really process it and understand it.
After playing four or five gigs together, he said, “you really need to start your own group.” I didn’t know what to say. Being a perfectionist and grappling with stage 4 imposter syndrome, I took it to mean that he didn’t really dig my playing. And I retreated a bit.
But after months of self reflection, I realized that he meant that he could really hear the strength of my musical voice. I had really developed a deeper and more personal relationship with music during my 7 year hiatus because all I had was the music in my head. I wasn’t interacting with other people and so there was a renewed clarity to what I was hearing. Now that I could see the positive spin, I really got inspired.
In the past 5 years I’ve written over 100 original compositions, and once I’m over this next hurdle, I’m going to record my first solo album.
That’s just one of several more accomplishments on my list. I’ll save those for another post.
What’s on your list?
Enjoy this moonrise over Campus Point which has absolutely nothing to do with the writing in this blog post.
Creativity - Day 13
I’ve had the pleasure and pain of being a “creative” pretty much my whole life. I say pleasure and pain because it really is a double edged sword.
Creativity is a process. It’s a process of thought, research, trial and error, frustration, agony, bliss, and pure joy that you do to solve a problem. It’s not exclusive to the arts either, like many people might assume.
I’ve worked with some really creative people who were MBAs, engineers, fabricators, marketers, etc…It really is about solving problems, and those problems could be in business, finance, design, engineering,…you name it.
For me, it’s mostly been in the arts. As mentioned on this blog, I started playing music at a very young age, and pretty much thought that was all I would ever do. I got really good grades in elementary and middle school, and when I got into high school, my freshman year I was on 3.7 GPA or something like that. This was about the time I started playing music professionally. I will say that the thrill of making a living as a musician, playing music, being creative, improvising, and getting paid, made it really easy to not care about all of the other stuff.
So my grades declined quite a bit. Chalk it up to not caring as much, and also many late nights playing music with little to no time for homework. When I graduated high school, my GPA was probably 2.5, but I had been working for 4 years already and was successful for my age. I was playing with some of the best musicians in town, playing at least 4-6 nights a week, all in a time in Cleveland when there were many thriving restaurants and jazz clubs, and many avid listeners. The pay was pretty good considering the cost of living in Cleveland was so low, and the idea of practicing all day, just trying to be a better musician, and playing at night, was amazing.
But then I got sick and had a heart transplant. You know this part already.
I recovered and was able to play music again, and even travel the US and Europe. It was a thrill. But I needed health insurance, and it’s one of those pesky things they don’t tell you about when you are kid who loves to play music.
You also know that while I was sick I developed a passion for graphic design and photography and about 7 years after my transplant, after being kicked off disability and struggling to pay hospital bills and buy medications, I started my first foray into “a real job.”
I went to a temp agency with one of the few outfits I had that wasn’t all black1. I remember being interviewed about my work history, which at the time was basically zero other than a few odd jobs I had done with my dad installing office furniture. I selected healthcare as an area of interest and the girl asked had I ever worked in a hospital and I said, “No, but I’ve sure spent a lot of time in one!”
1You see, jazz musicians have a thing for wearing all black. My friends and I used to call our all black outfits "Black Bart." It wasn't until the writing of this blog that I ever bothered to look up the story of Black Bart. It's pretty amazing. He was a thief in the old west who left 2 famous poems after his robberies. I found this one to be particularly interesting and oddly somewhat releveant.
"Here I lay me down to sleep To wait the coming morrow, Perhaps success, perhaps defeat, And everlasting sorrow. Let come what will, I'll try it on, My condition can't be worse; And if there's money in that box 'Tis munny in my purse." — Black Bart
"Here I lay me down to sleep To wait the coming morrow, Perhaps success, perhaps defeat, And everlasting sorrow. Let come what will, I'll try it on, My condition can't be worse; And if there's money in that box 'Tis munny in my purse." — Black Bart
Well believe it or not, I ended up getting a job in healthcare. I got hired as a temp office assistant at University Hospital in the Plastic Surgery department. It was actually really fun. I was helping out a woman who had broken her leg. She was out for a few weeks and I did her job, but eventually she came back and I was her legs for a few months. They liked me and kept me on for a bit longer and I ended up doing medical transcription. Over my years of illness, stuck at home learning design and photography, I developed some excellent typing speed and accuracy. That coupled with the what I had learned about my own health (I was keen to learn as much as I could) made me a good fit actually. I could type about 80wpm and was familiar with quite a few medical terms already. For the ones I wasn’t sure of, there was a medical dictionary. The doctors would speak their patient notes into a small cassette recorder and give me the tapes and the chart. I would transcribe the audio using a special tape deck with a foot pedal to pause and rewind. I got into a rhythm and was really quick. Then I would print out the notes, the doctor would review and mark any typos or mis-transcriptions, and I would make the revisions and put it in the chart.
Many times the doctors would come to me and talk me through the changes, and teach me a little about the term, and the condition, and what they had done with the patient. This wasn’t a typical plastic surgery office. Many of the cases were reconstructive, or wound care in sensitive areas. An example of the doctor’s feedback would be something like, “this word was actually debridement, That’s when we clean out a wound to reduce infection prior to suturing it.”
I learned a lot at that job. And there was a certain relief to it. I didn’t have to be creative at all. I just had to show up, do the work, and go home. There was actually a right and wrong and you knew what to do.
Fast forward more than 20 years, and that was the only long term job I ever had that was not creative. I’ve always either been a freelance designer, photographer, musician, or worked in-house as a graphic designer, web designer, or art director.
Now don’t get me wrong, I’ve had a hell of a ride and worked with amazing colleagues and have collaborated on amazing projects. I wouldn’t change it for anything.
But being a creative is not easy.
When you are making art for a living, sometimes there is no obvious right or wrong way to do things. Often times there are many valid ways to go about it. Sometimes, you can’t seem to find even one. As a result, it’s always been a kind of love hate relationship. You have highs and lows.
When you complete a successful project that you are proud of, you feel like you can take on the world. Often times, the next project, or next several projects don’t quite give you the same feeling, which could for a variety of reasons–low budget, they all come in at once and you are slammed, your skillset is not quite right for the project, not in your comfort zone, etc… Those can be tough to bounce back from. But you have to. You have to produce good work.
And that’s just it. I gave a presentation to a student group at UCSB about design, being a designer, and an introduction to the UCSB brand. I made the point that having a truly great idea, like a WOW idea, may only come a handful of times in your career. For the rest of the projects, you’ve got to make do with a good idea. And therefore making good art, consistently, is a noble pursuit, and making truly great art is borne out of that practice.
Top of the mountains in Santa Barbara, looking northwest to Santa Ynez and beyond.
Change - Day 11 & 12
I missed a day and am catching up here. Just a few thoughts about change.
Everything is in a constant state of change. The universe, the solar system, the earth, our atmosphere, our oceans, our bodies, our cells.
I’ve always found rust to be really interesting. It’s the visible change of iron and other alloys over time. You can simply leave it at that, or you can think about it chemically, molecularly, as the iron becomes iron oxide. It’s physical, tangible evidence of time and change.
In my early days with a camera, I found rust to be a compelling subject. Cleveland, Ohio, where I’m from originally, is in the rust belt, the part of the midwest that was sharply affected by a decline in manufacturing. It was an economic impact and also a visual impact. Drive through downtown Cleveland and you’ll see many an empty, dilapidated building, a visual representation of the rust belt.
Cleveland also gets a lot of moisture in rain and snow, so there’s a lot of rust.
It’s an intersection of nature and man that can be really beautiful, if you choose to look at it that way. I choose to, and many years later I decided to try and make my own rust. Here are some interesting images of rusted steel panels. I used a cocktail of kosher salt, hydrogen peroxide, and vinegar over several days. Enjoy.
Ancestry - Day 10
In my evaluation for my second heart transplant I was made aware of a research opportunity taking place at Cedars Sinai. It’s through the NIH and it’s called “All of Us.”
https://allofus.nih.gov/
From their website:
The All of Us Research Program is inviting one million people across the U.S. to help build one of the most diverse health databases in history. We welcome participants from all backgrounds. Researchers will use the data to learn how our biology, lifestyle, and environment affect health. This may one day help them find ways to treat and prevent disease.
It’s a really neat and important opportunity that you should consider participating in. These kinds of research efforts are being made possible by the incredible computer technology we have with databases and computer modeling. Some of the same technology is used to model black hole behavior, or possible outcomes based on climate data. The research might not bear fruit this year or next year, or even in 10 years, but it will lay an important foundation for examining societal and environmental factors and developing innovative treatments.
So I was happy to join. All it took was a simple blood and urine test.
One of the things they offer is DNA analysis. They will look at your DNA for disease markers, but also for ancestry, and things like your ability to detect bitter taste, your likelihood of enjoying cilantro or not, and even if you might be prone to lactose intolerance.
I just got my results back and checked in on my ancestry. Are you ready to hear about my ancestry? Drumroll please………..
I’m white.
Shocking I know. My ancestry is as follows:
57%
Northern and Central Europe
Such as Ireland, the United Kingdom, Germany, France, Scandinavia, and parts of eastern Europe
30%
Eastern Europe
Such as Poland, Ukraine, and Russia
13%
Southern Europe and the Mediterranean
Such as the Balkans, Italy, and Greece
I also agreed to participate in another research project that is dedicated to understanding cardiac allograft vasculopathy, or CAV. That’s the disease I have now that is affecting my transplanted heart.
In plain English it means heart transplant disease affecting blood vessels.
As I understand it, it’s the culmination of several factors, but mostly it’s the effect of the immune system attacking the heart over many years.
When you have a heart transplant, you know you have to stop your immune system from attacking the organ, which is called rejection. There’s a very real risk early on of ‘acute rejection’ so the immune is very suppressed for the first year or so. After that, medications are lowered and you are looking to strike a balance.
Suppress the immune system too much and you leave the patient wide open to disease, and cancer, and well as other organ failure. Fail to suppress it enough, the immune system attacks the organ and you lose it.
It’s a delicate balance, but the science has been very successful at finding that perfect balance. I’m a great example. Most patients have signs of CAV by year 10. I didn’t have any until year 18, and I’m now nearly 24 years out.
A great success by all measurements. Well, not all. I'm not ready to throw in the towel.
So research continues to find exactly what factors are increasing the risk of developing CAV, and new medications that do a better job of preventing it, while also not being so harsh on other organs, such as the liver or kidneys.
So how am I participating in a research study about CAV?
They asked if I would be willing to donate my current transplanted heart once I received a new heart. My first thought was, “hey man, I’m only borrowing it anyway.”
I will do anything I can to help further the science and discovery of treatments for folks like me. I may not reap the benefits of it, but if someone else down the line does, I’m all for it.
Here’s that link again to the All of Us research study. Please consider participating and helping future generations.
https://allofus.nih.gov/
Talent - Day 9
I missed a blog post yesterday, so already we are off to a rocky start.
I wanted to talk about talent. It’s a topic that’s not all that well understood. I saw a post in an online forum the other day (a dangerous place to be) that said, “What’s more important, talent or hard work,” and it really got me thinking. I’m definitely not one to toot my own horn, but I’ve been told throughout my life that I’m talented. I started playing music at a very young age and got pretty good at a really young age. I started playing drums professionally when I was about 13 or 14.
So yeah, I was aware that I had talent, but I had no idea what it meant. Well, I had an idea. I think that idea was wrong and I’ve been critically evaluating that idea all my life.
You see, I thought talent meant that something came naturally, which meant you either got it or you didn’t, and if you did get it, it would be easy. It wouldn’t be a struggle. In turn I took that to mean that if you are struggling to get something and you’ve been told your talented, then you must be barking up the wrong tree. Better not try that. You’re not talented at that.
So yeah I’m here to admit that I’ve been lazy and avoided hard work because I thought I just wasn’t cut out for it. Do you wanna know how I recognized this?
Therapy? Nope. Probably wouldn’t hurt though ;)
Parenting? Yes.
My wonderful, truly brilliant and gifted son Eddie, struggles with this issue. And I’ve got a front row seat from an omniscient (almost) position. My wife and I have been teaching him to read, write, count, do math, everything we know, much of it before he could even talk. You see, he’s on the autism spectrum, and he was diagnosed at 18 months. He also had speech apraxia and we were told that he might not ever speak. But we were undaunted. We kept trying to reach him, to teach him. Well, one day he started speaking in full sentences, when he was about 3 1/2.
Scared the shit out of us.
We had never heard his voice, other than some babbles and muffled attempts at speech.
But it turns out that even though he couldn’t speak, he was thinking in sentences. He was reading. He could do math. He was firing on all cylindars.
And it also turns out he really loves numbers. He loves them so much that for many of his early childhood years, that’s all he thought about. Numbers. Relationships between numbers. Prime numbers.
When he graduated Kindergarten, he had to pass a simple test with the teacher. She asked him to count starting at 6. She was expecting him to say, “6, 7, 8, 9….” Instead he said, “6, 12, 18, 24, 30, 36….” And without hesitation. He loved numbers and he really understood them.
Was it talent? I could clearly see that he was obsessed with numbers, so it was no surprise to me. He was always doing math. Nobody had to force him. He was putting in hours and hours of hard work getting comfortable with numbers, and to him, it was easy and FUN.
And I realized I was the same with music when I was young. I used to listen to music all day. When I was three my parents bought me a small kid’s drumset and I used to play along to records. And I never stopped. I put in thousands of hours listening to music, playing music, sitting at the piano, playing triads with different bass notes. I didn’t know I was practicing and learning. I was just having fun. I was truly passionate about music and nothing could stop me.
And that brings me to the crux of it. Talent and hard work are not opposing sides of a coin. Talent IS hard work. Talent is passion. Talent is the glossy finish we see on a wooden sculpture after the sculptor has spent thousands of hours polishing it delicately. We don’t see the hard work. We only see the result and we rush to explain it away.
Why is this distinction important?
It can have a tremendous effect on how we educate young people and what we allow them to perceive as strengths and shortcomings. How many adults today are living the dream? How many are doing a job they love versus a job that pays the bills? How many people truly have found what makes them happy?
I don’t think it’s a high percentage.
I never considered myself an artist. Even as a “talented” young improvising musician, I thought artist was a term reserved for painters and sculptors, for Renaissance men and women who made physical artworks. And so when I started to get interested in photography I felt conflicted because I didn’t feel I had any right to be making art. I didn’t think I had any talent. In fact, I always wished I could draw, illustrate, paint, and nobody ever nurtured my curiosity. I took an art class in middle school and spent 9 weeks drawing a plant with a pencil on paper. At the end of the 9 weeks of suffering, it was framed and put in the art show and I never tried anything like that ever again.
So yeah, I do think it’s an important concept to understand and to teach. Talent is a myth. Hard work is required to be good at anything. You have a good chance of being good at almost anything if you work hard at it and don’t give up. And if you start young, that hard work feels effortless. Here I am, at 45, trying my hand at art again. More to come.
Photography - Day 8
Take photos. Seriously, I know you have a camera. It’s either your phone, or a point and shoot. Maybe you even have a dSLR. Take photos. Look at the world more carefully. Slow down, take your time, and notice things around you.
I remember early on when I fell in love with photography, I took some classes at Lakeland Community College. I can’t remember which class it was, but one of our assignments was something like “stand in one place and take 10 photos without moving from that spot.” You should try it some time. It seems impossible, but it really opens your eyes. There’s lots to look at.
If you walk around your neighborhood in the late afternoon, maybe an hour before sunset, you’ll see that the light starts to make things look magical. Stop and photograph a leaf that is backlit by the sun. Seriously, try it. Even with a phone camera.
Maybe you’ll find a really cool leaf that’s just fallen off the tree. Bring it home. Enjoy the beautiful details. It’s really incredible when you look closely.
Sometimes, seemingly ordinary, mundane scenes become interesting once you put them in your viewfinder.
Sunsets are cheap and easy. Ok, not everybody lives in Santa Barbara, I know. Everyplace has something interesting, beautiful, unique, and strange, and photography will train you to stop and look and really see. I know it’s done that for me.
I have my illness to thank for my interest in photography. I never thought I would be anything other than a musician untilI got sick. I couldn’t even walk across the room, so I bought a computer and a friend gave me a cracked version of Adobe Photoshop. This was the beginning of a path of discovery that would temporarily replace music as a creative outlet. By the time I had the transplant I had logged thousands of hours in photoshop and I had really begun to enjoy what I was learning and creating. I got a camera maybe 2 or 3 years later and the rest is history. I’ll never give up music. I was born a musician. But being a musician makes me a better photographer, and learning to see the world through a lens has made me a better musician.
So seriously, take photos. (Play music too!)
Stillness - Day 7
This blog so far has been primarily about my illness and I guess that makes sense since I’m waiting for a second heart transplant. It’s not all I plan to talk about, but I do have a bit more to say. I’m sharing some insights I’ve gleaned from nearly 24 years of being ill. Some of it might resonate with you, even if you haven’t been in a position like this before.
One thing I dearly miss when i’m having a bad day is stillness.
You see, when you aren’t feeling well, and you know why, there’s this feeling that when you are still, it makes the illness more obvious. It always there, and staying busy is a great way to deal, but when you sit down and breathe and let everything else melt away and you try to find that stillness, you find that you aren’t alone there. You’ve got this illness with you and it never goes away.
With a heart condition like congestive heart failure, you become keenly aware. Your heart gets physically enlarged, and you feel every beat. My original heart, which I’ve now lived longer without than I did with, was extremely enlarged. In fact, my transplant surgeon said it was one of the biggest he had ever seen. I had a home health nurse that would come in 2-3 days a week and draw blood and check my vitals. She could check my pulse my watching my chest move up and down.
So that beating heart, even though it’s closer to stopping with every beat, is a seemingly never-ending reminder that something is wrong. And it keeps you from finding that stillness.
So when I had the transplant, and finally woke and was aware enough to feel my body again, I could feel a strong heart beating, a normal sized heart, and a sense of both physical and mental relief. I could find the stillness again immediately. And it was great for 20 years.
Now I’m again having trouble finding the stillness. It’s the one thing that I’ll be searching for when I awake from surgery, and it will be the solace that tells me I’ll be alright again.
Please Listen - Day 6
If you are reading this, you likely know me personally, to some degree. Maybe you’ve read my other blog posts. You probably know about my health situation. You probably know that I’m immunocompromised.
Hopefully you also understand that the only reason I’m alive today is because of incredible advances in medical technology.
When you are told you are going to die, it’s not a great feeling. When they tell you that there is an extremely complex treatment, not without risk, but well understood, developed through the rigors of the scientific method and built on all of the incredible information we’ve learned from previous science, you trust. I can’t know everything that a transplant surgeon knows about the human body. But I do know that transplants are an overwhelmingly successful treatment for heart failure. The numbers don’t lie. I do know that the methods and tools of science produce tangible, successful, repeatable results. There’s ample proof all around.
When they announced that they had developed an mRNA vaccine for Covid my team at Cedars began recommending the vaccine almost immediately, knowing that people like me really needed it the most.
In fact, let’s back up a minute, because many may not know this. The reason I needed a heart transplant in the first place was a virus. I was a normal 19 year old kid, I got a viral infection and my immune system didn’t fight it off. I was, like many 19 year old kids, burning the candle at both ends. The virus attacked my heart and destroyed it. You may have heard the term ‘cardiomyopathy’ recently. That’s what happened to me….and I nearly died from it. It’s also happening more and more to people who get COVID-19.
So yeah, this viral pandemic is very serious, especially for someone like me, but for all of us. It really could happen to anyone. I have avoided public places for the past two years because of the severity of the risk I face from Covid.
One of these days, I will get a phone call. I will drive myself to the hospital. I will lie down to have a new heart put in my chest.
When I emerge from that operation, I will be even more immunocompromised than I am now.
I hope there is a society for me to participate in once I’m recovered.
If you are unvaccinated, consider your next move, because it could really affect the outcome of the match for all of us.
P.S. Watch this short video from the NYT and watch it till the end. Please listen.
Are you here? Day 5
I’ve been thinking a lot lately, about a lot of things, which is natural. When you are ill and can’t be physically active, your only recourse is the mind. I stumbled on this interview with Bill Murray and not surprisingly he captures it better than I ever could so I’ll let him speak and I’ll simply say that this is now the second time I’ve had to really think about what I’m doing with my life, and what I WILL do with any borrowed time I’m given. Really being here, in the moment, is one of the main tenets in jazz, (if there really are any) which I’ve studied for most of my life. Maybe it’s a tenet of any art form. At any rate, at this point in history it seems antithetical to everything in society, which is just a constant distraction from the meaningful. Anyway, listen to Bill.
El Capitan sunset.
Meditation & Medication- Day 4
Nothing profound to post tonight. Day 4, Friday, end of a long week. Much of the pain one experiences with chronic health problems is mental and emotional. I like to go out to the ocean and spend time alone, taking photos, listening to the waves, and thinking deeply. I need this in order to survive.
Of course I also need a ton of medication. C’est la vie. Enjoy some of my recent favorites from my favorite meditation spot, campus point. These are all similar, yet different. Every moment is unique.
Donuts and Day 3
I’ve been through quite a few traumatic experiences related to my health in the past 25 years. I’ve been in cardiac arrest, had an experimental open heart surgery, been in ICU with pneumonia and hooked up to more IVs of antibiotics than you’ve ever seen. Of course I also had a heart transplant and then needed a pacemaker, (a fun surgery that you are awake for). It all adds up and you basically go through it all alone, and you get tough. So I thought I was pretty tough. And then I had to have a CT scan.
If you've never had one, it’s basically a three dimensional x-ray. You lay on a table that slides into a giant circular ‘donut’ and this thing pumps you full of several orders of magnitude more radiation than you should receive in your lifetime, and then they make cool videos out of them for doctors to stand around watching and pointing at.
Well as it turns out, nothing in my battle-scarred history in healthcare prepared me to deal with the claustrophobia I would face, and when I had a CT scan at Cedars Sinai for my evaluation, I was overwhelmed with a panic attack that was beyond my control. I had to have them stop, which really pissed me off. I’m tough. After all that I’ve been through, to get here, and be defeated by a fucking donut? How embarrassing. Well thankfully the technician was super awesome and understanding and she made some accommodations to get me through it. And I survived. All in all, it was only like 5 minutes and it was over.
And then they found a thing, and they pointed at it, and i had to go back and have another CT scan.
Well, this time I was prepared and I walked in. I laid on the table, closed my eyes and took some deep breaths and they slid me in the donut, and after a few minutes, the pulled me out and I thought, “aha! I win!” And then the tech said, “ok, we need to do another series of pictures and you’ll need to lie still for about 15 minutes.
And then in the back of my mind, the panic started welling up and I started to worry that I wouldn’t be able to contain it. So I dug deep, and I thought about that fucking donut and how it wasn’t going to beat me again, and before I knew it, 15 minutes was up, and I was out.
And now I have a new arrow in my “dealing with stress” quiver. Donuts.
Oh and btw, that ‘thing’ they found was a small tumor on my adrenal gland which is not affecting my hormone levels in any way, and they are not worried about. The endocrinologist I talked to said “I can’t remember the last time I ever even heard of one of these being cancerous.” It’s like a 1 in a million chance."
The Dentist - Day 2
During my evaluation for transplant, I was checked inside and out to make sure I am as healthy as can be before being listed. That meant lots of blood tests, chest X-rays, CT scans, and more. I met with the surgeon, a nutritionist, a social worker, and a psychiatrist. Also, I needed a full periodontal exam by my dentist.
You see, your teeth and gums are a major factor in your overall health. In fact, poor dental care can lead to a host of diseases, a key one being heart disease. So it seems that dental health is whole body health. Why in the hell then, in this country, is dental insurance separate from health insurance? Why are my teeth a separate part of my body that my health insurer seems to care nothing about? Also, why is dental insurance so terrible? Why is there so much out of pocket expense? Can someone please explain?
And another thing. Does anyone actual enjoy going to the dentist? No. Hell no. Nobody likes a dentist. So what kind of person decides to spend a fortune on dental school and start a business where nobody likes them? Am I missing something?
Well, to be fair I actually really like my dentist. He’s very knowledgeable and thorough, but also very personable. And I’ve had to see him a lot lately. When you have a suppressed immune system, getting dental work and cleanings can be an invitation for infection, so we broke down my cleanings over several visits to go easy and give my body a chance to deal. I also have to take antibiotics before each visit.
You know what else I do before each visit? I brush my teeth, probably better than I would any other day. With this many appointments over past couple of months it really got me thinking. Why should I brush my teeth before an appointment? Isn’t that my dentist’s job? isn’t he the one that I’m PAYING to clean my teeth? Why am I doing his job?
The next time I see him, I’m eating a chocolate cupcake in the car right before I go in. I want to get my money’s worth.
Day 1 – Waiting for a new heart
Today is the first full day being listed for a 2nd heart transplant. I received final authorization from my insurance company yesterday and got a call from my coordinator at Cedars Sinai around 4:30pm. Her words were “with your blood type (B+) be ready to go at anytime.
I was told the same thing before my first heart transplant back in 1997. They said B+ is one of the more rare blood types and that there are not as many people waiting for a B+ heart. They were right. I waited only 22 days. I was waiting in the hospital however, at the highest status. This time I’m status 4, waiting at home.
Status 4 is the highest ‘at home’ status. There are not as many interventions for folks who are waiting for a second transplant. The disease I have, cardiac allograft vasculopathy (CAV) cannot be treated like it’s cousin coronary artery disease. They can’t do bypass surgery, and I can’t control my cholesterol to mitigate the damage. No, this disease is the result of slow, long term rejection. My immune system has been eating away at this heart for almost 24 years and it’s an irreversible process. So redo transplant is the only option.
I’m going to try and post something to this blog each day to mark time until I get the call. Hopefully, for your sake and mine, that won’t be very long. Until then, I’ll be posting a photo or a few words daily - life from my point of view, a few things I’ve observed during my 23.5 years of borrowed time.
Thanks for reading.
Matt
