16. Healed

It’s been longer than usual since my last entry. On May 6, 2020, I had a tonsillectomy. Yikes…all the things “they” say about having your tonsils out as an adult are true. It’s rough. Mine had been trouble much of my life though, and definitely in recent years, so getting them out was worth doing.

Around the time I was feeling up to writing again was when George Floyd was killed in Minneapolis. Since then, it just hasn’t felt like the time to be talking about me. Thanks to the readers who’ve been so sweet to reach out and ask me where I’ve been! I’m so humbled by and appreciative of the support. I do have more story to tell, so let’s get back to it today.

In my last entry, I talked about my embolization procedure. So it’s convenient timing that, last week, I had my follow up imaging to check in on the results of the procedure. It’s an echocardiogram/bubble study. Did I describe this earlier? I’ll run through it again. So, echocardiogram (echo) is an ultrasound image of your heart. The bubble study happens by having an IV placed, and then a Cardiology doc injects agitated saline (so that there are microbubbles) into the vein. On the echo screen, the bubbles can be seen traveling into the right side of the heart. Normally, you would not expect to see bubbles returning to the left side of the heart from the lungs. Last summer, I had a BUNCH of bubbles come back…I remember.

It’s kind of an awkward position you’re in. I was laying on my left side, but had my right arm extended back so that the doc could access my IV. I was also trying to position my head to see the screen, but obviously the tech needed to prioritize the positioning for herself and the MD. Still, I wanted to watch. The bubbles are injected with kind of a 1, 2, 3 count so that the two of them are coordinated…they want to be sure the images are captured. So he injected, and I saw them…and then I didn’t see them. Not in the left side. Not this time.

Here’s the thing about tests like that. No one in the room will typically discuss results of any kind. They really can’t. It needs to be read, and officially reported first. Imagine if either of them told me what they thought they saw and were wrong…not good. So I’d need to wait. When I was finished, I had let my buddy Dr Patel know, thinking he could get the results pretty quick as he typically does, but he was off work for a few days so I’d wait.

In the meantime, I’ve been paying close attention to how I feel. Now that I’m healed from the tonsillectomy, I’m sleeping better (my husband says I’m not snoring anymore!!) We did replace that old mattress I mentioned last entry, and both our backs and shoulders are feeling better. My tolerance for exercise is WAY up, and that’s just making me feel better all the way around.

Two days later, I got a phone call at work. I didn’t pick up…the phone didn’t identify the number. Went it went to voicemail, I checked it and realized I had missed a call about my test results. Ugh. I called right back and got voicemail. In her message, she told me that she would be sending me an electronic message to my chart, so I could look for that. Within five minutes, I had it. I could not believe what I read.

“The report states that your bubble echo is negative.”

Negative. Not improved, better than before, slightly better….NEGATIVE. As in, someone like my husband with no pulmonary AVMs would have a negative bubble echo and now I do too!!! I knew this was better than what was expected. Furthermore, my follow-up is in FIVE years. I remembered at my initial visit to the HHT center, Dr Hammill talking about “someday” if I’m stable, I “might” be able to space visits out by 5 years, and here I am already. WHAT?!

I sent a screenshot of the message to Dr Patel. He was impressed, too. He’s not one to get emotional or too wordy…but even he had a few thoughts about how this was better than expected.

I will NEVER be able to express my thanks to him and Dr Ristagno, but I’ll take every chance I get. I did ask Manish to forward the report and my thanks to Dr R. I’m so glad they are our team.

Speaking of “our” team…here’s the latest on that. I mentioned that all three kids tested positive genetically. Earlier this year they all had clinical testing. All of their brains are clear. But, all of them have pulmonary AVMs like me. All. Of. Them.

Can we just pause again for a quick second to remember how many miracles have lined up for me and my family? Can we think back and remember how we would never have known about ANY of this without Bridget pushing toward all of this? It’s overwhelming for me to think about how close I came to never knowing until it may have been too late.

OK. So, Maggie has AVMs, but they are all too small to treat. So, she gets observed for any changes. Actually, we will all be observed for the rest of our lives. Treatment is as necessary. Connor and Brady both have AVMs large enough to treat. They’ll both have procedures just like mine. They were scheduled March 19 of this year, which unfortunately was the same week our OR closed to all elective cases due to the COVID-19 outbreak. They’re back on the schedule for August 20, so any and all prayers for their safety and two successful procedures are welcomed. I have ALL the confidence in their care team, as it will be the same as mine was. I’m sure there will be anxiety that day, but truthfully, I’ll be so glad when they’re on the other side of this, and their AVMs are fixed too.

So, so thankful.