Covid-19 Diaries, Part 3 – Why We Are Staying Home For Now

There’s a lot of chatter these days about how we’re all handling the COVID-19 pandemic. Masks or no masks? Stay home or go out? Gather with other people or not? This story is not meant to spark debates on any of that. It is only meant to tell you the story of why my husband Tim and I have decided to enforce our own Stay-Home Order as much as possible, and to reassure others who have an experience similar to ours that it’s ok. It’s ok to do what you feel is best for you and your family.

When you have been through multiple traumatic hospital stays, as we have, there’s always a trace of PTSD that lingers after it’s all over. The feeling that at any moment, you might be swept back into that dreaded hospital scene with the real possibility that one of you might not be coming home, and the other one will be left to pick up the pieces.

For those of you who don’t know our story, here’s the somewhat abridged version. For those who know it, you can skip to the end.

In 2003, Tim had a liver transplant at U of M Hospital, a surgery that involved many months of recovery and rehab in both Ann Arbor and Traverse City. During that time, his doctors discovered an abdominal aortic aneurysm – “Triple A,” they call it – but it was small and they decided to keep an eye on it. In 2009, we learned that the aneurysm had grown to a point where it required immediate attention.

We decided to do the surgery here in Traverse City, a decision that has haunted us ever since. The vascular doctor who did the surgery at Munson botched it and put the stent in the wrong place, closing off the artery to one of Tim’s kidneys, causing him to lose that kidney. The other severely-compromised kidney continued to operate post-surgery at about 20 percent.

After that doomed surgery, we went to U of M Hospital for a procedure that we hoped would restore some of the blood flow to that remaining kidney. It didn’t work. After the procedure, the doctor told me he tried his best, but just couldn’t find a way through that artery to help the blood flow more freely to the kidney.

I specifically remember this, because he took me into a private waiting room, and I thought for sure he was going to tell me that Tim had died. Tim didn’t die, but we had no idea of the long road that stretched ahead of us. It’s better that we didn’t know.

At this point, U of M was supposed to keep us in their system for the aneurysm, which was still there and unbeknownst to us, growing slowly. But for some reason, we dropped off their radar. Through the years, Tim limped along with one kidney operating at 20 to 30 percent. He technically had Stage 4 Kidney Disease and was put on U of M’s kidney transplant list. At some point, his kidney numbers stabilized to a point where he was taken off the transplant list.

We didn’t really think much about it again until Feb. 25, 2017, when we learned that the aneurysm had grown to a point where it could burst and kill him at any moment. To make a long story short (ok, there’s no way to make this story short), one night he starting having severe back pain, and I took him to the emergency room at Munson here in Traverse City.

After some scans and the scary news that death was imminent, they immediately loaded him into an ambulance headed for U of M Hospital in Ann Arbor. I followed in the car.

He had the first of three emergency surgeries on Feb. 26, 2017 – a lesser-invasive surgery where the docs went in through small incisions and attempted to shut down any arteries feeding blood into that aneurysm. We spent weeks in the ICU and Cardiovascular Center at U of M, then came home.

Tim still didn’t feel right, and on March 6, 2017, I took him back to the emergency room at Munson. Yep, the aneurysm had continued to grow. He was loaded into another ambulance and whisked off to U of M Hospital for another emergency surgery – again, the lesser-invasive kind. We spent more weeks in the ICU and Cardiovascular Center at U of M, then came home.

Each time the docs completed those first two surgeries, they thought they’d dealt with the offending arteries. In reality, there were some hidden arteries behind everything that continued to pump blood into the aneurysm – in effect, blowing the aneurysm back up each time the surgeons cleaned it out and patched any leaks they could see.

After the second surgery, everything seemed to be ok. Tim didn’t have any pain, so we expected to drive down for the followup appointment at U of M on April 4, 2017, be told things were progressing along nicely, and be sent home. Not so fast, Boursaws!

When we got to U of M Hospital on the morning of April 4, they did a followup CT scan, and much to everyone’s chagrin, that aneurysm had continued to grow, now clocking in at a whopping 17 centimeters. The docs said it’s the biggest aneurysm they’d ever seen. I watched as they rushed him off to emergency surgery for the third time.

This time, they did the big, open, super-invasive surgery we were trying to avoid – basically cutting him in half and taking out his intestines to get at the aneurysm. Why didn’t we do this surgery in the first place? Because the docs didn’t think he would survive. In fact, as they were wheeling Tim off to surgery, his surgeon told him he had a 5 percent chance of survival. They would have to clamp off the artery to not only his one remaining kidney, but also his liver. Transplanting the liver again was not an option.

But at this point, we were out of options. We HAD to do the surgery, or Tim would 100 percent die. I’ll cut to the chase here. Tim DID survive the surgery, which took place on April 4, 2017. He didn’t lose his one working kidney or his liver, and slowly, in the days following the surgery, his numbers started to stabilize.

After five days in U of M’s ICU, the first two of which Tim was intubated, we moved to the Cardiovascular Center. We were now on a first-name basis with all the staff in both the ICU and Cardiovascular Center.

Because we’d had enough of those five-hour midnight ambulance rides from Traverse City to Ann Arbor, sirens blaring the whole way, we decided that Tim would recover and do rehab in Ann Arbor. He spent the next month at Glacier Hills Rehab Center.

Tim told me that during those days in the ICU following the third surgery, there were times he could have easily slipped away, and that the only thing keeping him from doing that was holding onto my hand as I “willed” him to survive. After so much medical trauma, he was completely spent and didn’t have one ounce of energy to keep going. I held onto his hand a lot.

On May 9, 2017, after 28 days in rehab and 74 days since that first ER visit, we had a followup appointment at U of M, where his surgeon removed 57 staples from Tim’s incision, proclaimed him fit, and sent him home. Each followup appointment since then has been stressful – including this one in 2018 where we thought he might be headed back into surgery – but so far, all is well. Read more about our long journey and timeline of events here.

It has been three years since Tim almost died – three times – and each day we wake up overwhelmingly grateful that he is still here, that he saw our two kids graduate from MSU, and that we still get to do our favorite thing together every day – drive around the Old Mission Peninsula.

There are many unknowns about the COVID-19 virus. Many articles about how it’s this or that, how wearing masks does or doesn’t help, how we should go out or stay home, how the death rate is high or low, how this, how that.

None of that matters to us. All that matters is that we will do anything – and I mean anything – to avoid any future long-term, life-and-death hospital settings. And we will do anything to avoid putting our loved ones in that same situation.

No way around it – going through all of that was hell. And I have to think that anyone who’s been through what we’ve been through, who’s waited anxiously in many hospital waiting rooms, who’s seen their loved one hooked up to one thousand tubes in an ICU for days on end, who hopes for just one more day with their soulmate who’s now immuno-suppressed for the rest of their life – probably feels the same way.