To follow up on my last column, I want to take the liberty of sharing with you all another important update regarding my health. If you’ve been following my most recent columns, you know that my health issues have been consuming my life in a way that they haven’t in years.
For much of the past month, my mom, my nurses and I have had no idea what’s going on in my body. But one thing was certain: something was wrong. While I’m finally on the appropriate treatment now, this spring is going to include a lot of doctor appointments and lab work because I now have to see a cardiologist and a hematologist.
In my last column, I touched on the fact that I was currently dealing with a urinary tract infection and tachycardia. I thought the tachycardia and infection were interlinked because every other time I’ve had a UTI, I’ve had varying degrees of tachycardia that typically went away once the antibiotic kicked in. The concerning part about the tachycardia this time was that it wasn’t going away with the antibiotic.
It got to the point where for weeks, I would experience “butterflies” in my chest, and my heart rate would skyrocket into the 140s and 150s, accompanied by extreme shortness of breath to the point where I could barely talk. Then, I would have to lie down in my bed and cuddle with the stuffed bunny my dad got me when I was 12 and watch reruns of Glee on my phone until my heart rate slowed down enough for me to talk or laugh.
Oftentimes, my heart rate would escalate when I tried to sit up again. There were many days during the last month when I spent more time in bed than I did in my wheelchair.
While all of this was happening, fortunately, I had an appointment with my GI doctor, who ordered bloodwork because she suspected that my electrolytes were severely off or that my anemia had gotten worse.
The unfortunate part of the situation arose with actually getting the bloodwork done. Because I was tachycardic at rest, it would have been unsafe for me to put a mask on my face and go into a lab. So, the only option was to arrange for a home draw, which took over a week and an act of God to arrange because the local home draw office had changed ownership.
Two weeks after my appointment with my GI doctor and several lab draws later, there was finally a prognosis. I was extremely iron-deficient and a little more anemic. To combat this, I now have to take 10 times the amount of iron that I was previously taking, in addition to infusing water with salt into my feeding tube.
The second issue began with my being able to see a cardiologist and hematologist. Because I am 26 years old and no longer in the pediatric range, there is a question as to whether specialties of which I’m not an established patient at Boston Children’s will accept me. It became clear though that I needed to see a cardiologist to make sure everything is OK after all the stress that has been put on my heart. Fortunately, I was able to get into cardiology at Boston Children’s — probably because I had been seen by them before — which was a huge relief because the vast majority of my complex care has been at that hospital. Finding a hematologist at Mass General will be in my very near future though.
And while all this chaos is ensuing on the surface, there is something darker brewing beneath — something I have felt repeatedly throughout my life but have never quite had the words to explain it.
Now, I’m older and I have actively worked on acknowledging my feelings. I have a contentious relationship with my body, and that relationship only becomes more difficult when I don’t know what’s going on. It’s a deep sense of mistrust that forms. And even though my symptoms have been somewhat alleviated — at least for a few days at the time that I’m writing this — I still have to brace myself for my heart to race when I’m being lifted into my wheelchair. Because I’m not naive to the prospect of setbacks.
But that feeling will go away in time, as it always does, once I regain my footing and figure out a plan with my doctors to prevent this from happening again.
Gazette columnist Joanna Buoniconti is a freelance writer and editor. She is currently pursuing her master’s at Emerson College. She can be reached at columnist@gazettenet.com.