SUNDERLAND: Complications and round two of heart surgery

I got a scare yesterday when I was chatting with one of the cardiac nurses in the ICU. He mentioned two of the hospital’s LVAD patients had died last week.

He also said patient deaths often come in threes – and that after looking at me last Thursday, he was genuinely scared I’d be the person to fulfill that superstition.

I’m not sure what stunned me more – the boldness of his statement or the fact that I had actually looked deathly enough to worry my medical team.

At least I can take comfort in the fact that I am now healthy enough for him to make jokes about it. It was definitely touch and go for a while last week though.

Things started off great…

It’s been two weeks since my LVAD surgery, and while I am certainly moving forward in a positive direction — my body hasn’t quite stabilized yet.

During the first week, things seemed to be looking up. Sure, there was pain from the incision, the broken sternum, torn muscles and the chest tubes, but my numbers were solid, and I was on an emotional high from a successful surgery.

But something wasn’t quite right. My energy wasn’t returning, and I still felt like I was in full-blown heart failure. Breathing was difficult, and even walking a short distance remained out of reach.

Despite the weakness though, my numbers – blood pressure, electrolytes and the velocity of my LVAD — remained excellent. I was in the ICU less than a week before they decided I was stable enough to be moved onto a cardiac ward.

That was when the fevers started.

Stumping my doctors…

My first night out of the ICU, I was ecstatic! I had only two wires poking out of my body (as opposed to the 15 or so always attached in the ICU) and I was finally feeling mobile again.

But then my temperature began to rise — spiking at 103 degrees that first night.

Normally, a fever wouldn’t be a major cause for concern. But fevers often indicate infection – and if it turned out that there was an infection anywhere along my driveline (the cord connecting my LVAD and heart to its external batteries) it could have been life-threatening.

The doctors also began noting some oddities about my blood. My red blood cell count was dropping dramatically, and my blood pressure was following suit.

There was some initial discussion that perhaps I was bleeding internally. It would have explained some of the symptoms, such as where my red blood cells were going.

So testing began in earnest as my condition continued to decline. It took three days of fevers and declining numbers before they shipped me back into the ICU to be monitored.

The problem was, although the doctors ran dozens and dozens of tests, everything kept coming up negative.

The doctors did find what looked like some minor blood clotting near my heart. They also found blood clots in my neck, but nothing that explained the fevers or declining condition of my blood.

Everyday I listened to my team of veteran doctors stand outside my door and discuss my condition in puzzlement. They told me repeatedly that they had no idea what was causing the problems.

They could find no infections to treat and were at a loss to explain my blood problems, especially considering my LVAD looked like it was running perfectly.

They treated me with heavy doses of antibiotics and with blood transfusions. Eventually though, they exhausted their medical options and the discussion turned back to surgery.

The doctors could do repeat open-heart surgery to examine the area and see if they could visually see a problem.

My cardiologists were all for the idea. My intensive care doctors thought we should wait and rely on antibiotics, and the surgeons genuinely seemed unsure one way or the other.

I had no desire to have my chest ripped open again, since it would reset my recovery time – and it really does hurt. However in the end, I was feeling too crappy to argue, and there didn’t seem to be any other options.

So last Friday I went in for open-heart surgery for the second time in two weeks.

What they found…

The second surgery was significantly shorter than the first and it revealed – well, pretty much nothing.

That’s right. They couldn’t find anything wrong with me internally. They did remove the minor clotting around my heart, and they pumped my chest full of antibiotics. But that was about it.

Miraculously though, something must have worked, because within the next 24 hours all signs of fever disappeared and the condition of my blood started to improve.

Within 48 hours of the surgery I was able to walk a mile in the halls of the ICU and I could do it without becoming short of breath. It was nothing short of miraculous.

No one seems to be able to explain it, though.

But that’s OK – a victory is a victory, even if you can’t explain it.

Other noteworthy events this week…

• As of Tuesday, Sept. 20 – I officially made the heart transplant list. It’ll be at least eight months to two years before I get a heart, but it does show that my recovery is progressing and that I am stabilizing. My next column will be all about how the transplant list works.
• My local newspaper, the Standard Journal, interviewed me about my heart failure and LVAD surgery. I was flattered by their interest. You can read the article here.
• Finally, after a lot of requests from people asking how they could help, I have relented and allowed a GoFundMe page to be created for my family. I am not directly involved in this effort, but the GoFundMe is being operated and managed by a family friend whom we trust. You can donate to the fund or learn more about it here.