Vas-Cath #worsethanimaginable

For the last month all the nurses have assured me this would be “nothing!” Explained how “patients are always surprised when it’s over in 10 minutes,” and how easy it is. I heard this from enough nurses (and different departments) that I believed it.
Either they’re all in on it together trying to sell patients on this ridiculous fiction, or something unlikely went really wrong with my vas-cath. I’m sure it’s the latter.

I had become pretty comfortable with having the procedure this morning, and even the part that upset me most—having a large catheter placed in my neck/carotid artery, secured by sutures, but only getting a local anesthetic (injections in my neck to numb the area). So, fully awake, fully aware, full audio, you get the idea.

The nurses were getting the table set up with a radiation protective backing and extra pieces so I’d have somewhere for my arms. I had to wear a hair net and mask, and keep my head turned far to the left since they’d be working on the right. They cleaned and prepped my neck, and layered several blue, paper-like covers on/around the surgical site.

The doctor came in to do the procedure, and got started right away. A good thing, because in the end this didn’t take a mere quick-and-easy 10 minutes, but I was on the table for about 45 minutes.

Basically something went wrong with the anesthetic—either he didn’t give me enough, didn’t put it enough places, or some other cause (I don’t know how it works) but I kept saying, “I can feel that and I don’t think I’m supposed to.” The nurse would look horrified & the doc would give me another shot to numb whatever area could still feel pain. That happened twice before he apologized again.. Then he explained he now had to push into it really hard 3 times and it would be a lot of pressure (i.e. crazy pain) and he was sorry.
It hurt like hell so I was making involuntary sounds, which quickly turned into sobbing from underneath the blue surgical papers. They all kept saying, “I’m sorry, I’m sorry,” to me down there. I didn’t know WHAT was happening, but it wasn’t good.

And it wasn’t over yet because he still had to do the sutures. Therefore needed to inject me one last time with anesthetic so I wouldn’t feel the sutures. But I did feel some of the sutures. It was hard to tell what I felt, but it seemed like some different prickly/sharp things sticking me. Definitely not as painful as the other stuff though.

It was a horrible experience this morning, but I’m alive.

Yes, I do feel like I was hit by a bus having been hooked up to this apheresis machine for 5 hours, pumping 11 liters of blood out of and back into my body, and all through this awful thing hanging out of my neck. We’re just waiting at the blood center for my nurse to take out the vas-cath and let us leave. Keith is starving and I’m desperate to lay down.
Today’s harvest needs to have collected 2 million stem cells. When they did my blood work this morning they projected collecting 29 million. So it would seem like 2 would be no problem, especially factoring in what we’ve read and heard from others. So we can all have big hopes and expectations for my stem cells :)

Thank you all so, so much for your thoughts and prayer around this day. It is bringing us such comfort knowing each of you are praying. In moments of weakness throughout the day I’ve been grabbing my phone for encouragement to see who’s praying at the moment, and it has been SO COOL! Perfect encouragement :)

I love all of you. Thank you so much.

Lovemily

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The crazy machine that separated my stem cells from everything else.

The Dreaded MRI

Our first week here in Chicago consisted of basic medical tests to make sure my body can handle the transplant. Keith and I spent the week running around the hospital and various buildings each day. I had a bunch of tests on Thursday–MRI, chest x-ray, dental eval, labs & EKG. It all started with the worst–the MRI. Well, technically 3 different MRIs, so about 2 hours total.

Over the years MRIs have become really difficult because it causes a tremendous amount of pain trying to lay perfectly still for an extended period of time. It’s the worst. The technician often tells me I’m moving and they have to repeat a scan, (or 3 :/). The reason I move—and I try my very best to NOT move at ALL—is because my body gets so stiff and tense trying to lay perfectly still, and the pain slowly builds to new levels each until I can’t take it anymore.

I’ve developed a variety of methods to help me cope through MRIs—basically anything to distract me from the pain… Listening for all the different tones. It’s interesting to listen to both the wretched dissonance and the quirky harmonics of the machine. Also, the incessant—and nearly violent—rhythm of magnets clanging around for the various scans. I try to find some sort of imperfection from my span of view inside the machine. There’s usually a scratch or smear you can find, or some sort of mark on the interior surface. You can try to imagine what different shapes the mark could be, like you would with clouds in the sky. Really, MRIs are awful for me, no matter what I do.

But this was unlike any MRI I’ve ever had!

When they were escorting me back to radiology the technician explained I’d be able to listen to music during the MRI scans. (Uhhhh, what?! HOW!) He explained they had a pair of all plastic headphones that doesn’t interfere with the scans and allows them to play music for patients. (!!!!?!??!?!?!?!) When I was all set up with my IV, a blanket and the headphones, the bed started receding back into the machine and he asked what Pandora station or artist I wanted to hear (!!!!!!!). I said, “Yes, an artist–Keith Elgin.” The MRI machine was up and running a minute later with its raucous noises.

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After another minute the voice of the love of my life floated above reality as I heard “Stronger” start to play through the headphones. I lay there in this entirely surreal moment, filled with total peace and comfort. I thought, “Wow. This is happening.” By the time it really hit me around the first chorus, tears were streaming down the sides of my face. These were the kind of tears that didn’t stop—the experience of being so overwhelmed by emotion that your body takes over and decides to cry, without your knowledge or permission!

Then I was laughing about how I couldn’t stop crying,
and how unbelievable all of it was…

 “Stronger” from Our Hope [Live] by Keith Elgin.

A few songs later was “Dance, Dance, Dance,” at which point I was grinning ear-to-ear inside that machine… I was picturing Chloe, our fabulous 4-year-old niece, breaking into super-energetic dance and singing along! Such happiness :) She calls it “The Keith Song.”

At one point (well actually I think it was 4 times total) the technician buzzed in over the speaker saying he had to repeat some scans because I had been moving. I always feel bad about that because it’s annoying for them and it takes longer, but I really do my best. He got more grumpy each time, so I felt more and more like a fool, apologizing. Then it turned out he had to leave and got another radiologist to cover for him because it was running into his dinner break. So when they wheeled me out of the machine to put the contrast in my IV, this new radiologist greeted me and explained.

She was cheerful and kind, with a gentle spirit. She took care to update me between each of the scans, encouraging me and saying how long the next one would be. She also gave me breaks and explained what parts of my body I could move. She regularly asked how I was doing.
It was like an angel had arrived to run the MRI.
And her name was no coincidence—Gloria—like my mom.

So I got to finish up this 2-hour MRI listening to my husband sing about God and feeling the loving and caring presence of my mom.

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Some thoughts & reflections from inside the machine:

Wow…
This is unbelievable…

…fragmented thoughts of bewildered gratitude, trying to wrap my mind around the astounding love of God…

Is this real? This is really my life?
I can just say my husband’s name for a Pandora station?!

And, go out to that same guy in the waiting room, who’s eager to see me and find out how this one went?
The waiting room of Northwestern Memorial Hospital…
But this time we are getting the transplant?
It’s really happening…

And everyone we know is in it WITH us…

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From all around the U.S., hundreds of our best friends, family members — and many we’ve never met – helped us get here.

And made all of this possible.

By the provision & crazy love of God.