And We Thought Blood Clots Sucked

Well, of course, blood clots suck especially when they are huge honking big ones in your lungs but they suck even more when you find out you’re in the 1% of patients who go on to develop chronic thromboembolic pulmonary hypertension.  CTEPH is a complicated disease and Mr. Google can tell you all about it if you are so inclined to ask him.

For Steve, it means his lungs have not been filling up with air the way they’re supposed to and he’s terribly short of breath.  We think it’s because his blood clots did not dissolve the way most blood clots do and that’s what clogging his pulmonary arteries.  Steve’s heart has been working really, really hard to pump oxygen into his lungs and left untreated, he will die of heart failure.

So that’s the sucky bad news.  The good news is that some patients with CTEPH can potentially be cured with a surgery called PTE – pulmonary thromboendarterectomy – where they go in with a high tech Roto-Rooter and remove gunk from clogged arteries.

We found all this out after a pulmonologist at Duke put Steve through a slew of tests on September 1.  Needless to say, the last week and a half has been tough.  Biding time gives you way too much time to think.

Steve was admitted to Duke on Monday.  More tests were done on Tuesday, the results of which indicated that Steve – THANK, GOD – was a surgical candidate.  Surgery was performed on Wednesday and, I am beyond thrilled to report, that it was successful.

This was a huuuge surgery.

Steve’s chest was cracked open.  He was placed on cardio-pulmonary bypass and his body was cooled to about 65°F.  They had to make him that cold because in order to roto-root his arteries they needed a bloodless surgical field.  In order to get a bloodless surgical field, they had to stop his circulation.  In order to stop his circulation, they had to turn off the bypass machine thereby depriving his body of oxygen.  In order to protect his body from lack of oxygen, they had drop his body temperature.  And…they had to stop his circulation TWICE for a total of 47 minutes– once to roto-root the right side and once to roto-root the left.  If you are grossed out by yucky stuff, don’t click here.

He’s in ICU on a ventilator now and will be there for two, maybe three days.  Once he’s stable and breathing on his own, he will be transferred to a “regular” room for the remainder of his stay.

Of course, we expect Steve to kick the crap out of all of this and Young Son is taking bets as to the first sarcastic remark out of his dad’s mouth when he wakes up.  We have been told to plan on two weeks in the hospital.  Steve’s goal is to be discharged in one.  Kind of makes you wonder who’s going to be happier to see him walk out those hospital doors – us or the staff at Duke?


Kudos and eternal gratitude to Jeffrey Sparks, MD for knowing something wasn’t right, to Pulmonologist, Victor Test, MD for the spot-on diagnosis and to Cardiothoracic Surgeon, Jack Haney, MD for the life-saving surgery.

14 thoughts on “And We Thought Blood Clots Sucked”

  1. OH Marcy and Steve, I am so sorry to hear this. But thank GOD the surgery went well. Praying for a quick recovery for Steve, and praying for you to handle him. 🙂 Please keep us updated. Adding him to our Sunday School and church prayer list. If you need us, call we will come. Love you both so much.


  2. Dearest Marci and Steve, This is not the news I was expecting to hear since you came back on land. Dan and I are heartbroken that you both have had to go through this, but so over the moon for the outcome. We are praying for you both.
    I know you have a lot of support there but if you need us please let us know. I am going to send you post to NIcholas and he will come and visit Steve after he is in a room.
    We love you both.


  3. Very sorry to learn about the problem, and delighted with the direction things are going. Thank God.
    Tell “Captain” that I am pulling for him, and that we will come visit whn things are better.


  4. So very happy to hear the surgery went well !!! in our thoughts and prayers for sure. No doubt Steve will be out in “one”….


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