In the interests of not burying the lede: I had a test! All the gory details are below, but please feel free to skip to the end of this post for some important stuff.
We won’t have the results of this test for a little while (about a week), but still…this is progress.
It turned out that scheduling the CT coronary angiography was more complicated than I anticipated. Because Dr. Desai isn’t licensed in Florida, I had to get my GP to do the order. My GP is wonderful and was happy to do it, but I had to get through the three layers of folks in his office who were, um, less helpful before getting to him. So it took most of last Friday, but I got it organized for 1:15 today.
I had to fast for 4 hours before the test, which shouldn’t have been any problem at all because I don’t normally eat or drink much in the morning anyhow. But of course as soon as I was told I couldn’t eat or drink, I was starving and parched. Luckily, I had plenty to keep me busy, including an hour-long drive (a ride, really, since I can’t drive on the meds I’m on) to get to the facility that was doing the test.
We arrived and checked in, and all seemed to be well. When the tech—a lovely woman by the name of Priscilla—brought me back, she explained that contrary to what I’ve been told on the phone, I couldn’t get the disc (to send it to Dr. Desai) today. They had to mail it to my GP, and it wouldn’t be ready for a couple of days. I was peeved, but given the hassle it had been to get it set up and the fact that there aren’t a lot of facilities that can do this particular test (it requires a fancier scanner than a normal CT scan), we forged ahead.
The next bump in the proverbial road came about 10 minutes later, after Priscilla had done an EKG and taken my blood pressure and heart rate. This scan takes pictures in between heartbeats, so having a fast heart rate is problematic. And mine is quite fast. Because my heart is so weak, it’s kind of wiggling instead of beating properly, and so it’s doing this modified beat at a higher rate than normal. Normally they would give someone whose heart rate is fast Lopressor to slow it down. But Lopressor drops your blood pressure, and mine was already really low. So no Lopressor for me.
Priscilla said the scan might be fine, or might not be ideal…there was no way to tell. So more ahead-forging.
I knew I was going to have to get an IV, so I’d worn black. And good thing, because sure enough, it spurted blood on me as soon as she put it in.
Next was a blood test to measure creatinine to be sure my kidneys would be up to clearing the contrast (dye) used during the test. Those were good, so into the machine I went.
IV contrast causes such weird sensations. Not painful or even really uncomfortable…just weird. This one gave me an icky taste in my mouth and I could feel the heat it caused as it moved into different parts of my body. I think the test took about 15 minutes, but I couldn’t wear any jewelry, so I didn’t have my watch.
After the test, I went into the dressing room to get recombobulated, and Priscilla talked to Hugh. She told him that my heart was really enlarged, and that I was really sick. This wasn’t news (and she said it entirely kindly; it looks cold as I’ve typed it, but it wasn’t…she was expressing concern), but it was still slightly shocking to hear.
She also said that while she couldn’t read the images completely—they have to be processed to their full 3D glory—my arteries looked clear. This is what Dr. Desai prepared us to expect; based on my medical and family history, the likelihood is that my condition is not a result of blocked arteries. This sounds like good news, but it would be nice if it was blocked arteries, because that can be repaired with surgery that, while terribly complicated and full of risk, is much safer than a heart transplant.
So now we wait for the disc to arrive in my GP’s office, which it should by Wednesday. When it gets there, I’ll pick it up and overnight it to Dr. Desai, and he will review it with their team, including radiologists. So we should know more by a week from today.
Now, here’s what I really want to say today:
Sometimes I do what I call Faith in Humanity Updates on Facebook. They’re generally articles or stories that illustrate clearly that we are not doomed. That people have within them the capacity for infinite good. Over the last few weeks, I have been the beneficiary of these stories.
If you’re reading this, you probably know Jon and Ruth Jordan. They publish Crimespree magazine, and also organize the incredible Murder and Mayhem in Milwaukee annual conference. It is my honor to call them family.
Part of MMM is an auction. Authors donate all sorts of items, and readers bid on them. MMM is this weekend, and Jon and Ruth are using the auction to help me with medical bills. As I’ve heard about some of the authors who have donated amazing auction items, I’ve cried…happy tears. These people are my heroes. They’re my people, my tribe. I am so incredibly grateful.
While I won’t be able to be in Milwaukee this weekend, I will be there in spirit. And I’ll be hugging everyone virtually.
In person, I’ll be at home this weekend, in the company of another chosen family member, Joann Byrd. You might have heard me mention Joann before; she was my mom’s best friend (my mom died when I was three years old). She is a truly amazing person; you can read about some of her professional accomplishments here, but this won’t tell you how kind, funny, and giving she is. When she learned about my heath situation, she immediately booked flights to come visit (all the way from Seattle!). I know her visit will be good for my soul and my heart.
Whew! This was a long one. Thank you for reading. And for, well, for everything.
Love you, E.
You are a brave soul. This all sounds very hard and not fun and yet you meet each setback with grace, dignity, and humor. I admire you for that. You are an awesome woman of great strength and heart.
Thanks so much for the update, Erin; I keep thinking of you and wondering how you’re doing. I can particularly relate to the ironies of clear arteries: Husband had a catheterization about 2 years ago, and the guy who performed it came out beaming to say there weren’t any blockages. Since husband was still sleeping off anesthesia, I texted daughters the good news; and then husband (who’s an MD) woke up and said it was actually lousy news because, as you say, there are interventions that might help blocked arteries, but nothing to be done for cardiomyopathy. That was a pretty shocking moment for both of us. (He’s in relatively mild CHF, so not in line for a transplant, though he did get an ICD–which has never kicked in–as a backup.)
I’m so sorry for all the frustrations you’ve faced with the healthcare system, and even more for the illness itself. I’m glad at least you have so much love and support; there an awful lot of us pulling for you.
<3
I love you Erin. I am praying for you. Stay strong.
My prayer twice a day is simple but heartfelt. Lord, watch over Erin Mitchell and help her heal. xo
You exemplify all that is good in humans, your cheerful attitude in the face of such adversity is an example to us all, we love you – Ali