Still Miles to Go

On Thursday, I was able to take one more step on this crazy mito journey: I finally got my muscle biopsy. We are so grateful that we have this out of the way now (since it’s one of the more invasive steps), but we will, unfortunately, be playing the waiting game now as the results frequently take months to come back.

Keith and I woke up at 5am on Thursday and picked up my dear friend, Stefani, to head in to Boston. I was so grateful that Stef said that she wanted to come for moral support. She and her husband, Ralph – and her parents! – are there for us every step of the way even though Stef and her two kids have mito as well. We left her home around 5:45 and were off! Even though we got there early, we barely had to wait before they took the three of us in for pre-op. I was happy that there were people there to entertain me as pre-op was a long and boring process.

Finally, I was taken off and had a pre-op consult with the anesthesiologist prior to the procedure. He took one look at my history and said, “I’d like to do local.” Yes! This was what I has begging for EVERY time I was told I’d be going under general for the simple procedure. So I thought, “awesome! Faster recovery and less of a chance for complications!” Well, I should’ve known it wouldn’t be that easy when the first attempt at starting an IV resulted in a blown vein. But once they were able to find a vein, I don’t remember anything until I woke up.

The next thing I knew, I wasn’t able to breathe. I shot up wheezing and gasping for breath. Epi was administered with something else (I couldn’t hear) to get it under control. When I was finally able to breathe more normally, I was told that they had to put me under general anesthesia. Brilliant. Soon after, Keith was brought into the room. Keith noted that my O2 was at or below 94% with with a nasal cannula, my bp was roughly 80/55, my heart rate was through the roof, and my temp was rapidly climbing (these stats were all ignored). I noticed nothing but the burning sensation throughout my body. They gave me 8mg IV dilaudid to add to the pain medication I received during the procedure. Still no relief, but I was ready to get my butt out of there, especially when the local wore off on the biopsy site and the medication still hadn’t diminished the pain. But that wasn’t my only motivation.

If you’re sharp, you will have noticed that only Keith joined me in post-op. Yep, during the procedure, Keith and Stef took my chair to get some pastries in the North End (Little Italy). On the way back, Stef began having heart issues and required an ambulance to get her back to MGH to be seen in the ER. (It’s never boring in the mito world…) So as soon as we got the clear, Keith and I left Same-Day Surgery and headed down the the Emergency Department where Stef was not being seen for some reason. Yes, she was there (on a very visible bed in the hallway, no less). Yes, she told them about her previous heart issues. No, they weren’t running tests. And, no, they weren’t even listening to her. So for the next 6 hours or so, I curled up on her bed with her until they finally got her in a room in observation. Dr. Browning (a geneticist specializing in mito) came in showing concern about her carnitine levels. But soon after, Keith, Ralph, and I had to leave Stef for the night. I was spending the night at their house (as previously arranged) to recover so that I had someone around me to help at all times while Keith went to work.

I didn’t sleep at all – literally – that night. I was still up at 8am when Ralph came down to feed the kids – over 24 hours since I woke up to leave for the surgery. I was still awake when Ralph left with Sasha for Sasha’s 3pm medical appointment in Boston – over 30 straight hours that I had been awake. I was awake when Stef got home around 6pm that night – now over 36 hours awake. I was awake when Keith went to bed at 1am – 44 hours awake. I finally got to sleep at 6 am on Saturday, 49 hours awake. And this comes from a girl who sleeps at least 12 hours a day and regularly up to 20 hours a day.

Yep, something was wrong. The first night I didn’t – and couldn’t – sleep. My heart rate and blood pressure had plummeted. But more concerning, my respiration had slowed so significantly that I had to remind myself to breath and force myself to do so. That’s supposed to be an automatic function, isn’t it?!? Unfortunately, this wasn’t the first time this happened. Our theory is that the pain medication and analgesics I was given weren’t completely metabolized until hours later when the combined effect was too much for my body. Luckily, the effect wore off by 10am the following day. Unluckily, a fever had started to brew. Fever reducers and lots of fluids have kept it at bay for the most part so we’re hoping it’s not a serious infection.

Right now, I’m feeling much better. The fever has been gone for about 8-10 hours now and I got 5 hours of sleep last night. The pain comes and goes but ice packs have seemed to help keep the edge off. And tomorrow is the MitoAction Walk. I’m really looking forward to seeing all my friends and hopefully making some new ones.

Happy Mito Awareness Week, all!