Torn

Well, I’ve had a lot of blog posts I’d wanted to write: reviews of _Harry Potter and the Deathly Hallows Part I_ or _Chronicles of Narnia Voyage of the “Dawn Treader”_; commentaries on cultural Santa Claus, liturgical issues or secular Christmas songs written by Jews. . . .

Then, on New Year’s Eve, everything changed.

Can’t say “It’s Just Another New Year’s Eve” this year, since this New Year’s Eve really did change my life completely.

At approximately 1:11 AM on 1/1/11, I began having the most severe pain I’ve ever experienced. I had already taken a hydrocodone before bed, so the fact that I was having this pain–a throbbing, tearing pain up from my heart and down my back–and it was so severe led me to call 9/11. Mary says she’d never heard me scream like that.

Well, the aorta has a couple aneurysms, the biggest of which is 4 cm, and a dissection (tear) along the inside wall, going all the way down. First thing I need to know, as I realized this evening, is what the actual damage was, since the only CT was taken at 3 AM on the 1st, and I had pain in my aorta for 36 hours after that.

Got to Medical College of Georgia by ambulance around 2. They amazingly fast tracked me: EKG was in the room in less than 1 minute. They brought me something to paralyze my GI tract, both to rule out any GI related pain and to avoid complications of a possible stomach bug (the reason I’d taken a stronger pain pill than usual).

The EKG was the classic “I think this EKG machine must be screwed up.” Then they did the echo, which was “fine.” (Of course, I knew that an echo says nothing about an aortic dissection). While they said they’d do a CT just to be safe, they thought I was going to be fine.

The CT was done after about an hour, and very shortly they came back with the initial result that I might have an aortic dissection, but they wanted to confirm it. At 5 AM they confirmed that my aorta had dissected from the artificial root to the groin, and the blood flow to my right leg was gone. They said I needed a bypass operation to restore blood flow to the leg, but they were debating whether to do it immediately or wait till I had stabilized. That afternoon, they transferred me to Emory to get a second opinion on my aorta.

Emory got the report that I’d had a “type B” aortic dissection (the kind that doesn’t rip through), although the only CT was done while the dissection was in progress.
On Sunday morning, 1/2, Emory did the bypass operation to take an artifiicial tube from my left iliac artery to my right iliac artery beyond where it was damaged. This not only restored blood flow to my right leg, but made my “bad leg” feel better than it has *ever* felt. (Doctors: “If you’ve had problems with this leg before, why has no one done anything?” “Because they’ve always told me it was in my head).

By Sunday evening, I could tell that the pain in the aorta had subsided. At that point, I had not resumed morphine since the surgery, because I still had residual anesthesia.

At MCG on Saturday, I saw both a vascular surgeon and a cardiothoracic surgeon within a few hours of my CT. After 2days at Emory, no sign of a cardiothoracic surgeon. At 6 PM, the surgeon finally called me on the phone . He said he wanted another CT to assess the final damage–that i’d have it “tomorrow”, and that the aorta expert was coming off vacation “tomorrow.”

At 7 PM on Monday, I found out I lost my job. By bedtime, we had decided this was the final sign that we have to just move in with my parents. On Tuesday, I waited all around for a cardiothoracic surgeon or CT scan and received neither.

Get moved from ICU to private room on Tuesday, with the usual mix-up in paperwork. Since I have never *seen* a cardiothoracic surgeon in person, the name of my attending is changed from the guy I spoke with on the phone for 2 minutes to the guy who did my surgery, with nothing in my official file about being under the care of the Cardiothoracic team. I hadn’t had the second CT (keep in mind that the *only* CT so far was done an hour or so into the process; it wasn’t even a final picture of the disssection since I still had pain for 36 hours later), and it had been 3 days in the facility without seeing a single doctor for cardiothoracic. Now it was going to be anohter day to get that stuff done. Plus, while I sat up to eat, I started getting tachycardia, nauseua and severe pain. Asked for a blood pressure check and, as I could have predicted, it was 150/70, with a MAP of 100 (they said they wanted the MAP to be no more than 80, and since 120 is what I shoot for with diastolic at home, that’s what they went for here).

So, we really don’t know what the physiological status of my aorta is. We know there are at least two aneurysms, one in the thoracic descending and one in the abdomin. We know the abdominal aneurysm is 4cm. We know there’s a dissection on the inside that goes down the entirety of the aorta.

1) Best case scenario is I go on the right blend of medicines and lifestyle changes, and the dissection scars over, and the aneurysms don’t grow, and I focus on trying not to make them worse.
2) The only surgical option at this point is a complete aortic replacement–which in many way is a relief, as one of the things I’ve dreaded over the years was multiple surgeries.
3) If the dissection is any worse than the think, gets any worse, keeps bleeding, or the aneurysms get any worse, they’ll definitely operate.
4) If I have the operation, then we have to take into consideration the issues of my brain aneurysm, venous ectasia and tortuous carotid. The tortuous carotid is the particular worry, since that really can’t be measured or assessed the way an aneurysm can.

They could replace my whole aorta, fix the two blood vessels in the brain, and then the carotid artery blows the next time my BP goes up.

So we’re facing all those issues and decisions right now.

As for “how we’re doing,” this is, overall, a great blessing. The potential-and various manifestations-of a dissection have been a constant shadow over us. What I most dreaded was multiple surgeries, slow deterioration, and the constant deception that “I…’m ok now.” I’ve spent ten years trying not to be a burden on anyone yet being moore of a burden. Now that’s all moot. I wasn’t expecting this stage till 40 or 50, but now it’s here. The guesswork is more or less over. We know the rules of the game, and, hopefully, it seems the family do (though some of the ‘why did you even get married,’ ‘why didn’t you do that’ blaming still hovers). So we’re content.

We’re either going to move in with my parents, or they’ll move in with us. I’m done with the constant quest to try and be a normal husband and father and support my family financially. Aortic dissection is on the list of specific illnesses that qualify one for SSI or SSDI. My grandfather said, “Take the SSI money and run!” So we’re just going to take it step by step and not worry anymore.

If I have a few hours, a few weeks or a few years left, we’re ready for whatever God has in store for us.

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5 responses to “Torn

  1. Thanks for the update. Been wondering how you were doing. Prayers for you and your family continue!

  2. Our family continues to pray for you and yours daily!

    Today is the feast day of Blessed Andre Bessette, who all his life was plagued by chronic pain so severe that he could not work, and yet he managed to accomplish the building of a Shrine to St. Joseph, one tiny step at a time, through the Grace of God.

    You may not have an illustrious career to point to, but you and Mary cooperated with God in the creation of beautiful new souls that are more priceless than anything man can create on his own. Your lifelong suffering is also supremely redemptive and no doubt has accomplished much good by your offering it up to our Lord and Savior, joined with his most Holy Passion.

  3. prayers for you & your family

  4. John, I am keeping you and your family in my prayers. I am praying that your dissection remains stable giving you time to weigh your options. It sounds like you are having some difficulty with your medical treatment at Emory. That is really too bad. Have you thought of going somewhere else? My son had surgery at Hopkins this past summer and Dr. Duke Cameron did it. He was a wonderfully skilled surgeon and a kind, caring doctor. Again, I am thinking of you, Barb Shields

  5. Pingback: The Lewis Crusade

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