Blog Post 09: A Mixed Bag
Another long overdue update! A lot has happened in the past few weeks, both good and bad.
Two weeks ago, I got quite sick again. It started with the usual suspects- chest tightness, sore throat, deep cough, congestion. However, fever is not how my body responds to illness. Even when I was in the hospital with covid, my temp was 98.8 at the highest (compared to my baseline 97.3). This week, my temp got up above 102, even with NSAIDs. This was pretty alarming for me since it was outside of my comfort zone in terms of caring for myself when sick. I saw my primary and she immediately jumped to covid. My mind had already gone there, especially since mask restrictions have largely been waived so several people had tested positive at work last month. All of my home tests had been negative though, so I had eased my own mind. When she brought it up, the fear came racing back. She went as far as to discuss an emergency-use-approved anti-viral that had seen some success. Planning for the worst should my PCR test come back positive. It didn’t! I was beyond relieved and very glad I have continued to mask at work.
Last week, I started off with my post-infusion follow up. We were looking to see where my iron levels were a month after my treatment to evaluate if I would need another. For the first time since my covid infection, I am not anemic!! Unfortunately, it has not eased the fatigue in the way that we hoped it would, but I’m still counting it as a win! Next, I saw my cardiologist’s nurse practitioner to follow up on the results of my CAM monitor. It revealed that 12% of the time, I am in sinus tachycardia (normal rhythm, but more than 100 bpm). In the time I wore the heart monitor, I also experienced a PVC, a PAC (premature ventricular/atrial contraction), and a sinus arrhythmia. All 3 are forms of arrhythmias, they are generally benign though. The first two (PVC and PAC) mean that one portion of my heart is beating too soon, throwing off the rhythm momentarily. My heart, literally, skips a beat. A sinus arrhythmia just means that my heart is not beating regularly, the time between beats varies slightly, and the contractions vary in strength. She said we can do more testing for POTS (since it’s common in long haulers and I’ve been seeing large increases in heart rate when I go from sitting to standing- 75 to 140 then immediately back to the 80s once I sit again) but I said I’d like to wait. She asked about medication and about how much this bothers me. I said that I am aware of how fast my heart is beating, that I can feel the palpitations and tightness. That I’m worried about long term damage to my heart when it’s working this hard, going above 100 beats per minute everyday, even when I’m not working out. Ultimately, she thought it was best to start me on a low dose of metoprolol, a beta blocker. This will prevent my heart rate from getting so high.
Yesterday, I finally got to see the rheumatologist! He said that the likelihood that this is “true autoimmune” is low, but not zero. This is not surprising, as I frequently got sick as a child and was tested for autoimmune disorders. Since they were negative then, obviously this is not a genetic ailment for me. However, covid wreaks havoc on the body in terms of histamine and, as a result, inflammation. Given my long haul diagnosis, the fact that I’m a woman, and my symptom set, he believed it was reasonable that some sort of inflammatory condition was at work here. He ordered a variety of blood work, which I should get back next week.
Additionally, I am in week 3 of therapy and back on my Zoloft. It has been really beneficial so far! I am working through how to grieve the person I was before I got sick and accept that this version of me is doing the very best she can in this body. When I first got sick, I put my life on pause. I did a lot of “when I get better, I’ll do ______.” Now that it has become more obvious how hazy that timeline is, I need to learn to adapt. One day I’ll get back to the December 26, 2020 version of me, but until then I will make do. I’m in a much better place mentally than I’ve been in awhile and for that I’m really grateful.