Being Where Terri Was: Part 1–How I Got There

Since late May, I have debated in my mind about what or whether to write about my experiences in April. Like most such autobiographical topics, I’ve fretted about such quibbles as whether to write it here first or save for some formal publication opportunity, whether to go with a fiction or nonfiction approach, how much to share, etc. So I’ve ended up squandering the time I’ve been given to share it by hindering myself, and I decided I’d better just post it here and trust God’s will.

So, here goes: on March 27, as my few regular readers are aware, I had my aorta repaired from the middle of the arch to the middle of the abdomen. I knew going in that it was a risky procedure. I’d spent 2 years reading medical abstracts, studying statistics, talking to surgeons, emailing surgeons, etc., not to mention having spent my entire life *up* to that point studying for the inevitable. For an otherwise “healthy” person, surgery on the descending aorta carries, depending on whose stats you read, something like a 40% chance of mortality within the first two years, and I forget the exact numbers I started with, but when I added them all up, I came up with a 90% chance of some kind of “permanent complication,” be it death, paralysis and/or organ damage. The likelihood of those complications occurring, and the need for surgery ASAP, increased if one was a) A Marfan (check), b) had previous surgery on the aortic root (check), c) had already suffered dissection (check) and/or d) had an aneurysm greater than 6 cm in diameter (check).

Since my dissection in January 2011, I’d been debating whether and where to have surgery. My longtime cardiologist agreed with me that my odds weren’t good and it was better, if I did anything at all, to find someone relatively local who was competent enough rather than do it long-distance. i had already ruled out Johns Hopkins, Emory and UNC, and while I’d been seeing a local surgeon who was competent and confident enough to do it, he needed at least one more team member and told Tme that he literally asked every cardiothoracic and vascular surgeon in the Augusta area, with no one willing to “touch me.” The last time I saw him was in May 2012, when he told me that, recommended I see his mentor at UNC, and told me I wouldn’t live through the end of the summer without surgery (this was based upon CT scans done in November of 2011 and January 2012).

After ruling out UNC, I put the whole thing in God’s Hands. I happened to see a trailer on my Facebook feed about a new movie of _Les Miserables_. I thought, “Oh, not another one,” thinking it was going to be another adaptation of the novel. Then I clicked play, and heard Anne Hathaway’s amazing performance of “I Dreamed a Dream,” and I was ecstatic: THEY MADE A MOVIE OF THE MUSICAL?! I ran to my wife and kids. I called my parents and my in-laws. My wife said, “That’s it: no doctors, no surgery, no activity. Total bed rest for six months. I want you to live long enough to see that movie!” That was the “goal,” and in the mean time we got to go on a Make-a-Wish trip to Florida, and I was able to make my definitive promises as a Secular Carmelite. At my Community’s Day of Recollection, after making my Promises, last December, one of my friends not only knew what I was talking about about when I explained about the surgical options I was considering (and trying to get someone to do, since I was hoping to find someone willing to do a stent operation rather than “traditional” open surgery) but knew one of the top vascular surgeons in the country and had another friend who’d had an iliac aneurysm repaired by that surgeon–I believe he was at Shands in Florida. So he immediately got his cell phone out and called the surgeon’s registration nurse, with whom I spoke for a few minutes that Saturday morning. She gave me a few more names. I started researching.

In early January, having done all that and seen _Les Miserables_ twice, I started looking these names up. I stumbled on the _US News_ list of top surgeons and, since their database of “top vascular surgeons” was nowhere near as long as other categories, I just started scrolling through it after having specifically searched for the other names. Of course, most of the people on the list were from NYC, Boston, Philadelphia, etc. Surprising, few of the names I’d been given were on the list. The one doctor, Dr. Svensson, I believe, at Cleveland Clinic was named by _US News_ as the top cardiac surgeon in the country. I contacted his office and explained how the only reason I was going to travel that far for surgery was for stents because I knew I couldn’t physically handle the travel or financially or emotionally handle the consequences of being stuck 10 hours from home should complications arise. She said, “No way, no how would we ever do stents on a Marfan.” I thanked her for her time.

So, after knocking off everyone else from my list, I finally hit someone within my 3-hour ideal radius that wasn’t Emory: Dr. Jeb Hallett at Roper St. Francis Health Care in Charleston. Plus, he had a little star indicating that he was in the “top 10%.” I Googled his name, and I found this video:

I called his office and scheduled an appointment. When I saw him, it was the most amazing medical appointment I’d ever had. I can honestly say that in all my experience with doctors, now as a patient and a parent, and having known some very excellent physicians, I have never known a doctor quite like Dr. Hallett. He knew everyone whose names I mentioned either as previous surgeons or as surgeons I’d considered. He even agreed with my reasons for ruling out some of the others. He spent a good 2 hours with us. He pulled the CT up on the computer and went over it with us. When his colleague, whose name I can never quite spell correctly for some reason, came for the cardiothoracic consult, Dr. Hallett stayed in the room. They talked right there with us. Our two eldest daughters were with us, and rather than insisting that they leave the room, as we feared, he included them in the conversation.
Afterwards, Mary asked me to talk to the girls about how they felt about it, as Gianna seemed a bit taken aback (as Mary and I both were) by seeing my aorta on the computer screen, and how shockingly huge it was. I said, “What do you girls think?”
Allie said she wanted them to do her surgery when the time comes, and said, “I think it’s a miracle!”
I later told Dr. Hallett on the phone what Allie said, and she said, “She may be right.”

"I am eternally grateful to God for both of these men."  -- my wife

“I am eternally grateful to God for both of these men.” — my wife

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