January 3, 2022

Happy birthday, Tim….? Oof. What a day. Turns out not everyone wants an angiogram for their birthday! Who woulda thought.

Many’s the time I’ve been mistaken
And many times confused
Yes, and I’ve often felt forsaken
And certainly misused

Oh, but I’m alright, I’m alright
I’m just weary to my bones
Still, you don’t expect to be bright and bon vivant
So far away from home, so far away from home

But first, let’s see how Jenny repaired those holes Lindy chewed into the quilt one time when she was having thunderstorm anxiety…!

That is a pretty adorable fix, and I love, love, love the quilt even more! Thank you, Jenny! I’m sorry Lindy ate your handywork but I’m so glad you were able to repair it!

So. Here are my jumbled notes from that day ….

angiogram
four pseudoaneurysms

A pseudoaneurysm, or pseudoaneurysm of the vessels, occurs when a blood vessel wall is injured and the leaking blood collects in the surrounding tissue. It is sometimes called a false aneurysm. In a true aneurysm, the artery or vessel weakens and bulges, sometimes forming a blood-filled sac.

diseased vessels due to bacteria from heart
go in with coil, take out diseased vessels

Some hastily typed words, and then copy/paste from Google so that I could come back to those definitions later (and look up more things about them). Before I even started on the notes, though, I had gone down with him first thing in the morning, as soon as I got there, because he was having an angiogram. He didn’t really care that it was happening on his birthday – that didn’t matter as much to him as maybe figuring stuff out that would allow him to come home. Oh, if only we knew then….!

Endovascular coiling is a procedure performed to block blood flow into an aneurysm (a weakened area in the wall of an artery). Endovascular coiling is a more recent treatment for brain aneurysms; it has been used in patients since 1991.

Endovascular coiling is a minimally invasive technique, which means an incision in the skull is not required to treat the brain aneurysm. Rather, a catheter is used to reach the aneurysm in the brain.

During endovascular coiling, a catheter is passed through the groin up into the artery containing the aneurysm. Platinum coils are then released. The coils induce clotting (embolization) of the aneurysm and, in this way, prevent blood from getting into it.

The coils used in this procedure are made of soft platinum metal, and are shaped like a spring. These coils are very small and thin, ranging in size from about twice the width of a human hair (largest) to less than one hair’s width (smallest).

stroke/rebleeds is a risk in the future, but less of a risk than just taking them out because of the disease
another angio tomorrow
general anesthesia
intubated
take breathing tube out after recovery
bring back to room
about 9/9:30

The room always seemed so weird without him. I felt like… should I even be in here? Should I go out into the waiting room? Except this setup is comfy, easy for my laptop, and I have snacks here. It’s just a little odd to be here alone.

And I don’t know a soul who’s not been battered
I don’t have a friend who feels at ease
I don’t know a dream that’s not been shattered
Or driven to its knees

But it’s alright, it’s alright
For we lived so well so long
Still, when I think of the
Road we’re traveling on
I wonder what’s gone wrong
I can’t help it, I wonder what has gone wrong

In that same file, I also had the post I sent to family, which only deferred from what I posted on Facebook that day in two small places.

Here is my Facebook post…

Not much to report this morning, our birthday boy is getting an arteriogram (basically an x-ray with contrast, of the blood vessels in the brain) this morning, and hopefully later today he’ll get a swallow test, and then I could run out to the cafeteria and see if they have any cake. Because everyone needs cake on their birthday!

I didn’t get cake. He was unable to either take or pass the swallow test (I forget which now) so they kept his feeding tube in. So no birthday cake for Tim, and I sure wasn’t going to hunt down cake just so I could eat it in front of him, that’s mean. So I got pizza, and let me tell you… I’d legit go back to that hospital cafeteria to get this pizza again. It was better than it had a right to be! Dammit. Now I want pizza for dinner.

Edited to add (2:00)

Ooof, ok, let’s see if I got all this. From the arteriogram/angiogram (they’ve called it both, so, potayto/potahto?)

They were looking for three things; bleeds, clots, and disease from the bacteria (the Endocarditis). They found disease, and they found what they call pseudoaneurysms. Because, again, Tim can’t do anything halfway, they found four pseudoaneurysms.

From Doctor Google: A pseudoaneurysm, or pseudoaneurysm of the vessels, occurs when a blood vessel wall is injured and the leaking blood collects in the surrounding tissue. It is sometimes called a false aneurysm. In a true aneurysm, the artery or vessel weakens and bulges, sometimes forming a blood-filled sac.

They want to get those closed as soon as possible, so tomorrow they are going to do another of what they did today, only this one a little more wild. They will (and I swear I thought I heard this wrong at first) go in there and coil off the four pseudoaneurysms. SAY WHAT NOW??? They will also remove the diseased vessels.

He was a little green from the contrast dye, which was both fascinating and a little other-worldly. It faded after a day or two, but you know I had to document it!

Again, from Doctor Google: Endovascular coiling is a procedure performed to block blood flow into an aneurysm (a weakened area in the wall of an artery). Endovascular coiling is a minimally invasive technique, which means an incision in the skull is not required to treat the brain aneurysm. Rather, a catheter is used to reach the aneurysm in the brain. During endovascular coiling, a catheter is passed through the groin up into the artery containing the aneurysm. Platinum coils are then released. The coils induce clotting (embolization) of the aneurysm and, in this way, prevent blood from getting into it. The coils used in this procedure are made of soft platinum metal, and are shaped like a spring. These coils are very small and thin, ranging in size from about twice the width of a human hair (largest) to less than one hair’s width (smallest).

Then I differed in my note to family in that at the end of this paragraph — for them, I added “This is slightly different from the clot strokes that he’s already had, in that these are bleeders, not clotters. Again, Tim just can’t do anything halfway.” In retrospect I’m absolutely unsure why I took that sentence out! It’s not like that was some deep dark secret.

And I dreamed I was dying
I dreamed that my soul rose unexpectedly
And looking back down at me
Smiled reassuringly

And I dreamed I was flying
And high up above my eyes could clearly see
The Statue of Liberty
Sailing away to sea
And I dreamed I was flying

That bed was some sort of crazy Transformer (more than meets the eye!). But. Back to the Facebook post…

So. There is a risk associated with the coil, in the future (5-20 years) but what the surgeon said on the phone is that the risk in the future is a lot, lot less than the current risk of the diseased vessels. They need to get those bacteria laden bits out, because this will help the antibiotics do their work. He will still need about six weeks of daily IV antibiotics after this, but we already knew that.

Oh, and another doctor who was in just before the surgeon called me said that Cardiology is starting to make noises like it might be this week for the valve replacement — most likely Thursday or Friday, but nothing set in stone yet.

I know this is a lot to process (like, what HASN’T been a lot in the last ten days?). The surgeon felt that he was loading me up with bad news, but … is it, though? I don’t consider “small surgery to fix your husband” to be nearly as bad as “we’re very sorry but your husband is irreparable.” Yes, there’s a risk in the future. But really, there’s a risk for everyone alive, at every moment, but we learn to put that at the back of our minds if we can, because crushing fear making us unable to go out of the door in the morning is untenable.

And then I wrote to family but for some reason didn’t put it on Facebook, “I told them to go ahead and do the thing tomorrow” – meaning, I gave the OK to the coil surgery. By this point he could nod and shake his head, and still talk … but I don’t remember if he could sign documents; I do remember I had to start signing them pretty early on during all this.

So. Onward.

Oh — and when in the pre-op room, a nurse asked Tim if he knew what surgery he was in for, and Tim pretended to look horrified, laughed, and said, “I was hoping YOU knew!” 😂

Since he got back, he’s just been sleeping. I’ll probably stick around here another two or three hours, but really, he seems fine… just sluggish and sleepy from the procedure this morning.

I could not count the number of ultrasounds he got in those three months. Let’s see, about 90 days… maybe 60 ultrasounds? 75? Chest, stomach, legs, arms… everything. I tried to get him to get a mammogram while he was in there but he declined. Hah.

We come on the ship they call The Mayflower
We come on the ship that sailed the moon
We come in the age’s most uncertain hours
And sing an American tune

Oh, and it’s alright, it’s alright, it’s alright
You can’t be forever blessed
Still, tomorrow’s going to be another working day
And I’m trying to get some rest
That’s all I’m trying to get some rest

Lyrics by Paul Simon
American Tune

And that was Tim’s birthday. Next day, coil surgery!