Kiss Me Once and Kiss Me Twice Then Kiss Me Once Again
It’s been a long, long time.
This experience reminds me of a whole bunch of old cliches. All of them revolve around the same theme, though: slow then fast. My “big one” was over 20 years ago. I was told back then that I would either need a transplant one day or I would get too sick to have one and I wold die first. So they “managed” my condition “medically.” (Read, threw various pills at me til they found something that worked for a while, then they’d change up the mix when that brew stopped working or the side effects overcame the benefit.)
“How did you go bankrupt?” Bill asked.
“Two ways,” Mike said. “Gradually, then suddenly.”
Hemingway, The Sun Also Rises
I regularly wound up in the ED. It was unstable angina or another heart attack. I lost track of how many were heart attacks somewhere around 2012 or so. It didn’t really make much difference, ultimately. The heart attacks were generally relatively mild, in terms of additional ischemia. That’s tissue death, in case you wondered. And they kept on throwing more stents into my vessels, trying to keep the creek from washing the road out yet again.
In 2010, my cardiologist told me that if I didn’t stop working I was going to die soon. I had shitty genes and bad plumbing, but stress was what was causing all that plaque to get thrown off. Fortunately, I had always bought long-term disability insurance through my employers. Even a blind pig finds an acorn from time to time. And so began the long slide down.
But things went on as much the same. I still had events at least three or four times a year, often more. I remember one period in 2010–2011 when I was at the hospital every three weeks on average.
I had a quintuple bypass in 2013. That’s 5. I have wondered for years what tok them so long. Every cardiologist I have seen since has asked me that question. Oddly, noone has ever answered satisfactorily.
At some point a couple years back, I had reached the point where I was cruising along the same path for so long I just figured that it was my normal. I resolved to try to go back to work.
In late 2020, I got a call from the IRS Chief Counsel’s Office. I was over the moon. I had wanted to work for the Chief Counsel since I first graduated back in 1989. I was drawn by the ability to look at a problem and just decide what the right answer is, not the answer that yielded the best result (most often dollar-wise) for my client. The interviews went well and in December I got an offer.
I started in mid-January. It was the middle of the Covid era, so I would be working remotely from Savannah. I waited eagerly for my computer and my credentials to arrive and the day finally came. I lasted four weeks. In that four weeks I went to the ED six times, two days in a row in one instance. I knew what my cardiologist was going to say before he said it: no soup for you. The whole experience literally broke my heart. I had dreamed of that job for 30 years and my goddam heart took it away from me.
I pressed my doctor hard. I was taking it easy. I was doing cardiac rehab. I was taking the meds he kept changing up. I can’t flaw him. The man worked hard at figuring out what to do with me. But I was getting weaker.
I couldn’t walk the grocery store any more-it was the little electric cart for me. I got used to being ignored at the deli and the fish counters while the clerks took care of the standers. “Oh. I’m so sorry, I didn’t see you.” I developed a more aggressive voice.
Those of you who know me personally probaby just did a spit take. I am not a shrinking violet. For me to get harder vocally, they no doubt are picturing me reducing store personnel and customers who got in my way to tears. Well, being reduced to shopping in a stroller hushed me up a lot.
Erin brought in the mail every few days. We never got much anyway and I couldn’t walk from the mailbox to the house. The 30 foot distance was more than I could manage. Erin started getting snappish with me for not letting her carry all the groceries in when it was hot outside (and when is it not hot in Savannah?)
I had to go shopping early in the day. Shopping required a nap after, which meant dinner needed to be a healthy bit after shopping. Laundry was the next task to go. Anything that involved bending over or kneeling fell after laundry.
I told the doctor it had to change. I was slowly running down like an old wind-up toy. He told me he had run out of tricks; there was nothing more he could do for me than he already was. It was finally the moment of truth. I needed a transplant.
I was petrified. It had been put off so long. What if I had waited too long? What if they said I was too sick? Too old? I started doing what I had done all my adult life. I researched. There was nowhere in Savannah, so the first question was easy-I would have to go elsewhere.
If I was going to go someplace else, I figured, why not go to the best? Jacksonville, Charleston, Atlanta had programs that were not too far from Savannah. But those programs were newer and less seasoned than others and none of the cities appealed to me as a place to spend a significant amount of time. Cleveland, Nashville, New York, LA were places I knew little about or were wildly expensive. I didn’t want us all alone in a new place with a much higher cost of living. New York and LA were simply too expensive for two people living on a fixed income that was tight in Savannah.
We figured wherever we went, we would be there for many, many months if not years. I didn’t think the process would be brief. I also held back for another reason. I wanted to come home. I wanted Chicago.Erin was adamant-she would not live in big, expensive, crowded, so unlike Savannah Chicago. I didn’t press it, but I didn’t really push for anyplace else.
In May of 21, we visited Erin’s daughter in Madison. We hadn’t seen her or Erin’s older son since Covid. Kenzie and her bride, also Erin, had some wedding planing thing that spring, so we figured we’d take our chances and go see them. Covid numbers there were dropping, we were vaxxed, and people there took masks and social distancing seriously.
Well, hell. We were sitting in Kenzie’s back yard and I got a twinge in my chest. I didn’t say anything, hoping it was just a passing episode. But then the pressure started. It gripped my chest, making it hard to breathe. The pain radiated up to my left arm and jaw. I couldn’t ignore it any more. Kenzie was the first to notice and soon enough we were racing to UW Medical in Madison.
I spent a week in their warm bosom. A catheter angiogram showed no new occlusion per se, but many vessels were more than 80% blocked. But there isn’t much point in rooting out a vessel when it serves largely dead meat anyway.
We were driving back to Savannah when she said it, very quietly, out of the blue.
“We could move back to Wisconsin.”
“Excuse me?”
“The girls are going to want to start a family right away after the wedding. I would like to be near my grandbabies. And that was a nice hospital.”
What I heard was “I don’t want to move back up to the cold but if you need to get your transplant in Chicago, I’ll move to Madison,” I don’t know if I ever loved anyone as much as I loved Erin in that moment.
In September, I flew to Chicago to meet with Dr. Vorovich, the director of the heart failure and transplant team at Northwestern. Ten days in October to get evaluated. I was told I needed to get my blood sugar under control before they could admit me to the program.
Things move quick from here. No need to strain to take it all in, though. I’ve written about much of it already and I’ll be covering it again in much more detail in the weeks and months to come.
We moved to Madison in February. I met with the surgeon running the transplant group, and I met Dr. Ghafourian, the heart failure doctor who has come to be my primary guru on that side. My A1c the blood sugar measure they watch fell in line in a mere 6 weeks, thanks to my insulin pump.
I devoted myself to unpacking boxes, looking for a dentist, opening banks accounts, getting utilities, all the things we do when we move. I found a dentist and got an appointment. He told me I would have to have a few teeth pulled. Ordinarily, at least a couple of them might have been saved with treatment and application dental appliances, but I told him time was of the essence-Dr. Ghafourian wanted me admitted in a month or so. I changed my Georgia insurance to Wiconsin insurance. I was selecting a primary care physician, the first step in building the medical team I would need after my transplant.
Then I got a call from the hospital. Dr. Ghafourian had discussed my case with the team. They were concerned about my failing health. I was to report to Northwestern on March 28, they would pull my teeth themselves, then admit me for insertion of a balloon pump in my femoral artery to assist my heart in delivering blood to my body. There was a slight holdup because they hadn’t told me to stop taking a blood anticoagulant before they pulled the teeth. It ended up happening on April 1. No fooling.
The balloon pump went in on April 5, the next Tuesday. I settled in for the wait for a heart, and after a couple days, Erin went home to deal with the cats and try to turn our house into a home. That may have turned out to be premature. She left on April 10, planning on returning the next week.
On the next wednesday night, the 13, I got a call. The next day, the 14, they would be rolling me into the operating room at about 6:30 and they would transplant my new heart a few hours later. When I called Erin, she thought I was joking. I had to put on a nurse to back me up. She and the girls flew down the next day arriving in time to kiss me good luck before they took me away. At about 5 am on April 15, two weeks ago, my new heart started beating in my body.
So.
Where do we go from here?
I feel a debt to the world for this heart that beats within me. Not because the donor died for me. He, or she, died because they died. But I got that heart, a heart that could just as easily to someone else, or more typically, to nobody at all. And for that, feel an oblgation, a debt. Not to anyone in particular, but to the world at large. I have received the most precious gift of all-the gift of new life. Goodbye dead heart. Fare thee well blocked muddy arteries.
But what is that debt? And how to repay it?
- I will tell my story. I will share my fears, my joys, the rewards and the costs. I will share m story so that others can learn it isn’t impossible to gain new life.
- I will tell others’ stories. I will tell of other recipients. I will tell of donors and the loved ones they leave behind. I will celebrate their redemption or merely their generosity of soul and body.
- I will talk of practicalities. Giving an organ is scary. Getting an organ is scary. Those fears need to be spoken to. 35,000 extra people die each year for want of a donor organ.God knows how many die because they simply don’t know this option is open to them.
- I will talk of cost. How many die because they can’t pay for the treatment that keeps them healthy enough to receive or donate? How many just can’t pay for the operation or the extensive follow-up care, care that runs for the rest of their lives? I will explore why it is that we don’t care enough for our fellow that we make paying for this miracle possible for everyone who can benefit by it.
- I will draw in providers-doctors, nurses, technicians, cooks, maintenance people who protect our lives by sheltering our immunocompromised bodies from germs and infection. They will be sought out to answer questions, to comment on my stories and others to correct misimpressions or offer alternative interpretations.
- I will bring controversy. I will talk about God and politics, the freedom we all enjoy versus the duty we owe each other for the enjoyment of that freedom.
I will build a platform to support a community. this is the debt I feel I owe, my mission not to let this new life be lived wastefully or in vain. At times I will hector and lecture you. At times I will praise you and drown you in love. And always, always, I will ask you to join in. Challenge me, support me, I don’t care which. Without debate there is no movement, without debate we don’t know truth.
In the months and years to come I want to build a foundation to combine the efforts of everyone who feels drawn. No matter your job, your education, your income, your health, there will be a seat at this table.
When the time I have been given has passed, I pray people will say I did well with what was given me. I hope to make good use of my time and not waste it. At the very least, I will never stop trying. Please, please, join me. even if it is only to pass this message and this medium on to someone else who might profit thereby.
Thank you. We’ll talk soon.
Love,
Mark
I have spoken of the cost of transplant and the cost of treatment after. I am like most people who receive a heart, I can’t really afford it on my own. Please help me finish my GoFundMe campaign so I can focus on the needs of others. If you hav already given I thank you. If you have the means to give a bit more, consider it an investment in the lives of others through my mission. If you haven’t given, please do. Even a few dollars, multiplied over becomes enough to take me over the hump. Thanks for your attention,
