Broken Heart Surgery
October 22nd 2023
A week and a half after open heart surgery.
Still feels surreal.
How Did I Get Here?
On Wednesday October 11th I woke up in the ICU and told the surgeon and anesthesiologist I was ready.
That was a lie. I was scared.
It had been 72 days since I got sick. Doctors couldn’t diagnose it. Every day, 9 weeks straight, no answers, progressively getting worse.
When I finally figured it out I was told I needed open heart surgery.
The night before, the surgeons came to my room and explained everything that would happen to me. When they left I cried into a mediocre bowl of Rush hospital’s finest mostaccioli.
The reality of what was about to happen hit hard.
I was so fucking worn out.
72 days straight of mental torture not knowing what was wrong with me only to be followed by this fucked up finale.
My sternum was sawed in half.
My rib cage was lifted apart to gain access to my heart.
My heart was then stopped, effectively rendering me dead.
A heart-lung machine pumped blood and operated my lungs for 4 hours to keep me alive.
A pacemaker was clamped onto my paused heart.
Half inch thick tubes were inserted through my stomach into my heart and lungs to siphon away the blood.
How the fuck did I get here?
The Beginning
On August 1st 2023 I woke up extremely fatigued, had a fever, and body aches. It went away in a couple days and I thought nothing of it.
After a few days it returned and this time it lingered for a week. It was strange for me to be sick. I rarely ever get sick.
On Aug. 11th, still feeling like shit, I boarded a plane to California.
As a last ditch effort I took some Nyquil I found at the airport convenience store.
To my surprise it worked.
I was in California for a week celebrating my friend’s birthday. We saw shows, had many drinks, hiked, played golf, pickleball, etc. and I felt fine.
However there were a few signs something was still wrong with me.
My resting heart rate and respiratory rate were unusually high (shoutout to the Whoop gang). I got chills after playing Pickleball and a strange fatigue I’ve never experienced during an otherwise routine hike.
What is causing this?
I am unsure, but since I no longer felt sick I again didn’t think much of it and assumed it would just go away.
I got back to Chicago on Friday August 18th.
When I woke up the next day the sickness returned.
I was supposed to go to a wedding that day but at this point I had to acknowledge something was legit wrong with me.
I went to my doctor at the Raby Institute to get blood drawn and test for numerous potential culprits.
My symptoms remained the same. I had a constant fever, extreme exhaustion, body aches, and chills.
Based on this my Doctor was convinced I had a lingering virus that just needed to run its course.
The blood work was inconclusive but it did show antibodies of the Epstein Barr virus, the underlying cause of Mono. Maybe I had mono… as an adult?
90% of the world has the Epstein Barr virus and I was told antibodies showing up in tests can be caused by many things, but it was possible this was mono.
I’m sick for another 2 weeks straight.
I have to tell my family and friends.
I have to tell my work.
I’m getting desperate.
The Pump Fake
Could I have long covid?
There was a point I thought I did.
I tried taking Ivermectin, a controversial covid drug.
It didn’t work.
My doctor was convinced the issue wasn’t bacterial because I never had a sore throat, never had a cough, never threw up, and never was congested.
Bacteria infections are cured with antibiotic courses. As I said, at this point I’m desperate, so I take an old antibiotic that I had from getting stung by a stingray in Mexico.
I started to feel better.
Was this due to the antibiotic or is the virus Doctors keeps telling me I have finally running its course?
I didn’t care.
I was just happy it was over.
My Whoop metrics went back to normal. It was Labor Day weekend and I was relieved. I played some golf, had a few drinks, and barbecued with friends.
“Can you believe I was sick that long?
That was so weird.”
Here to Stay
Tuesday after Labor Day the sickness was back.
Again.
This time it felt worse. I could barely get out of bed.
How?
WTF is going on.
I was extremely extremely fatigued. My joints were inflamed and it was painful to walk.
I always had a fever.
At all times of the day I had a fucking fever.
My doctor prescribed a Zpack to rule out it being a bacterial infection.
It didn’t work.
The only relief I could get was from taking anti-inflammatories. I had to take them to sleep and when they broke the fever I sweat like I was in a sauna.
This happened every night.
I slept in towels. My internal body temperature was fucked.
This picture was taken when it was 70 degrees outside.
This ultimately went on for 37 more days.
Day after day nothing changed.
Despite seeing more doctors and doing more tests there were no solutions. It was mentally terrorizing.
Friends and my work would check on me every couple days.
“How are you doing?”
I didn’t know what to say.
It was always the same.
While the rest of Chicago reveled in the beautiful final days of summer I laid on my hammock and cried for the first time in a decade.
The Blind Spot That Saved My Life
Around September 18th I got a blind spot in my right eye.
I’ve never had vision issues. I didn’t even know where to start with it. I contacted an old friend who set me up with an eye doctor.
He determined I had blood on my retina.
Yet another WTF is happening to me moment.
He told me I needed to see a retina specialist right away and set me up with an appointment that same day.
I was off to yet another doctor's office.
They dilated my pupils and injected me with a bright yellow dye. It traveled throughout my body and made it into my eyes to make my vessels easier to see.
I proceeded to take what felt like a million flash photos of my eyes staring an inch from the light.
The retina specialist, Dr. MacCumber, determined that my eyeballs were hemorrhaging.
My fucking eyes were literally bleeding.
I didn’t even know that was possible.
The cause was unknown, but he did not agree that I should just continue to try to wait this out.
I was in bad shape.
Something was very wrong with me and I needed to see specialists.
He set me up with an infectious disease doctor and a hematologist (blood doctor).
I went to the ID doctor the next week. She didn’t have many new ideas but ordered a bunch more tests.
Friends of mine had told me to just go to the ER and they’d figure it out. The ID doctor was at St. Joseph’s hospital so instead of going back home after my appointment I checked myself into the ER.
“Why are you here?”
“I’m sick, I don’t know why, and I’m hoping you can tell me”
The ER ran all the tests the ID doctor prescribed and then some. They must’ve taken a gallon of blood from me. I didn’t care, I just wanted help, and they were trying to help me.
After a few hours of tests and questions they determined the same thing as every other doctor.
“You must have a virus and you need to just wait it out.”
I felt defeated.
The next day more tests came back. I was told all of them were negative.
One of the tests was a blood culture that determines if you have a bacterial infection.
I wasn’t told this at the time but my blood grew a bacteria called Strep Mitis. The doctors did not think anything of it claiming that it must've been on my skin not in my blood.
Later in the week I went to a cancer center to meet with the Hematologist. I liked him. He was saying different things from the other doctors.
He ordered an MRI of my brain, CT Scans of my chest and pelvis, and more blood tests.
I couldn't help but feel I might have blood cancer.
It was getting super grim.
Answers
Two weeks after my initial appointment with the retina specialist I returned for a follow up.
It was now October 5th.
66 long days since I first got sick.
I took a million more blinding pictures of my eyes. They showed that hemorrhaging was getting worse.
However, this time, there were little white spots in the hemorrhages in my eyes.
Dr. MacCumber looked perplexed.
He looked at me and then back at the screen with the pictures.
“These are Roth spots”, he explained.
“They are clusters of white blood cells. It means that bacteria is in your eyes.
Roth spots are a classic indicator of endocarditis.”
“What’s that?”, I asked.
“It’s a bacterial infection of the heart. But I’m confused because if you have endocarditis you should be way more sick.”
I assured him that despite me toughing it out to be there I was in fact sick as fuck.
I immediately googled endocarditis.
My eyes were still dilated and my vision blurry but I could see enough to read that the symptoms of endocarditis were spot on to what I had.
Fatigue
Aching Joints and Muscles
Fever
Chills
Night Sweats
He might have fuckin did it, he might have just figured it out.
I knew it was serious, but it can be cured with antibiotics. After 9 weeks I finally felt like I might have an answer.
I was so happy I had to hold back tears of relief in his office.
To confirm the diagnosis I needed an echocardiogram. I was able to get one the next day (that is unheard of, it normally takes weeks).
The results showed a severely dilated (enlarged) left ventricle, a failing aortic valve, and “vegetation” on my aortic valve.
As bad as that sounds, it all wasn’t that clear at the time.
Now that I had the test done I needed a cardiologist to read it. My old cardiologist was my primary doctor’s ex-husband but he recently moved out of state.
I needed to find a cardiologist to see me ASAP.
By some form of telepathy, my primary doctor called to check on me an hour after the test results came in. I told her what happened and read her the results. She then called her ex-husband and read him the results.
He instructed her to tell me to go to the ER immediately.
I checked into the RUSH Hospital emergency room late Friday afternoon on October 6th.
Diagnoses
This time around in the ER I had enough evidence of what was wrong with me.
The lead ER doctor assured me they were going to keep me until they could help me.
I was so happy.
I felt like I had finally figured it out. I was legit happy to be there.
I was finally going to get fixed.
This was all finally going to end.
After some tests I was admitted to the ICU. Blood cultures were drawn again. I again grew the same bacteria as the first ER visit, Strep Mitis. It was confirmed, I had endocarditis, a bacterial infection in my heart.
How I got it?
A complete mystery.
It’s usually seen in people who do IV drugs. Doctors asked me 10+ times if I did.
Prior to all this I had a bicuspid aortic valve that I was born with. This apparently made me more susceptible, but still not at all likely.
I knew there was damage to my heart. But surprisingly, I didn’t feel it.
According to Google, as the infection was cured my heart function would also improve. I was hoping this would be the case.
That was wishful thinking.
Another echocardiogram, this time through my esophagus, revealed that the bacteria had been attacking my heart for so long that it all but destroyed my aortic valve.
The doctors didn’t understand how I wasn’t in heart failure.
I needed open heart surgery and it needed to happen fast.
In came the surgeons to ask me if I was ready.
Perspective
To think, if Dr. MacCumber didn’t know about the Roth spot correlation. I would have still been sitting at home waiting for answers while inching closer to my heart giving out.
I could easily have died if it took another day.
Dr. MacCumber, an eye doctor, saved my life from heart failure.
They say you can tell a lot by looking into someone’s eyes. This time it held the key to unlocking more of my life.
I went back to see him this week and brought gifts of my favorite wine and Mandy B cupcakes for his staff. It felt like such an uneven trade but it was the least I could do.
How could I repay him?
He said not to worry, it was his job, and the best thing I can do for him is go make the most of my time.
—-
So many of you reached out to me during all this, some I hadn’t heard from in years.
We are social people, we need our friends, and even though this experience was isolated to me I never felt alone. Thank you. I’ll always be grateful to you all for showing up for me.
I do believe “bad” things happen to us for a reason and in time I’ll be able to find meaning by connecting the dots backwards.
Ultimately, I think I’ll be glad this happened.
You get really good perspective on life when you almost die.
My heart is now working better than ever and I’ll be back soon after I heal up a bit.
Can’t kill me yet.
Love You,
Jim
