After a few months of peace and quiet on the health front, the past few weeks have been difficult again. Not nearly as challenging as last summer and fall, thank God. But it’s been mentally difficult to wonder if all I will ever get is 10-12 weeks of stability.
In my last update, I reported that I had been able to drop another calcitriol pill. YAY! All was well until I got sick. On Monday April 23rd, I tested positive for strep throat. My endocrinologist assured me that antibiotics were fine to take and that an illness such as strep was not severe enough to cause issues with calcium. WRONG. I don’t know if it was the antibiotics or the strep, but my calcium levels noticeably dropped. When I returned to swimming on Friday, even pushing off the wall caused calf cramps. Saturday’s run set off bizarre calf twitching. Things settled down by Sunday. The first round of antibiotics was not enough to kick the strep so I started round two on May 4th.
By the weekend I was feeling mostly better. I had planned to run a 10K on May 7th and I decided to go ahead with that. Probably a mistake. It was a warm day and an hour or so after the race, I went into atrial fibrillation. I have historically had several incidents of afib, 2010-2013 and once in 2016, but then no more until the Philadelphia marathon last fall. I ran Philly under extraordinarily stressful conditions and went into afib about 12 hours after the race. I had very much hoped Philly would be a one-off event, but no such luck.
This time around, I came out of the afib 24 hours after onset, on Monday morning. I went to Quest for a calcium check Monday at lunch. Results came back Tuesday morning, calcium a tad lower than it had been, but still well within the range we are aiming for. So – just to be clear – The first time I could go for blood work was 24 hours after the onset of afib with results 24 hours after that. 48 hours between the onset of afib and information about the thing potentially causing the afib. This is why an at-home calcium meter would be SO helpful. There are companies trying to develop this instrument, but I am not that hopeful that it will be available any time soon, possibly not in my lifetime. Remember, only 80,000 cases of hypopara in the United States, so not that many customers. This is so clearly a case of the market not providing what people need that I am tempted to use it as an example when teaching political economy. After this incident of afib, I requested my endocrinologist put in standing orders for stat blood work at the hospital lab, which has longer hours than Quest. Hopefully next time around I can get information faster.
In other news, I had a long-awaited appointment with Dr. Michael Mannstadt at Mass General in Boston this week. Dr Mannstadt is one of the world experts in hypoparathyroidism. I’ll just summarize some takeaways from that appointment:
Many doctors say “I am so sorry” when they find out about the hypoparathyroidism. Dr. Manndstadt is the first medical practitioner to directly inquire about my mental health in the wake of the diagnosis. He is one of the kindest doctors I have ever met.
I am approaching the one year anniversary of the surgery. That will be a difficult day, not just because anniversaries are hard, but because the one year point is when hypopara officially gets declared permanent. Kevin is very good at reminding me that this is partly because humans check how things are going at the one year point. Bodies do not really care about time. But statistically speaking, the chances of full recovery at this point are very low, which Dr. Mannstadt confirmed, as expected. However, because I have been able to come off the calcitriol, he said there is “a small amount of hope.” I said I would take that. It’s a tricky balancing act between maintaining hope and working towards acceptance.
In obscure testing news, Dr. Mannstadt wants me to start checking albumin levels whenever I check calcium.
In other testing news, he is helping me think differently about the upcoming 24 hour urine test. This test checks how much calcium your body is excreting through your urine. I could take loads of calcium and probably feel physically much better. But if you take too much calcium without functioning parathyroids, it all exits the body through the kidneys, leading to kidney stones. The 24 urine test will help us assess the risk to my kidneys. Frankly, I have been avoiding this test because I do not want any additional bad news. Also, my endocrinologist recommended waiting until we see how much calcitriol I can drop. But Dr. Mannstadt said to think instead of the 24 hour urine test as a way of gathering information. If that test comes out okay, I have more wiggle room to take more calcium and perhaps feel better. This is a very helpful psychological shift. Will you eventually be getting pictures of pee collection? Almost certainly.
The other thing Dr. Manndstadt said that is really sticking with me is “My other athletes with hypopara…..” He has other athletes with hypopara!! It is extremely difficult to find other people with this condition attempting to engage in competitive sports. For many hypopara patients, just going about their day is already quite taxing. Lots of people find it difficult to hold down full-time jobs, let alone engage in sports. But I know there are hypopara athletes out there. If any of you read this and I don’t know you yet, PLEASE send me a message. I am trying to find you.
This is plenty long enough already, but a quick voice update. My amazing speech pathologists at Yale recommended that I switch to a practice at UConn that specializes in vocal performance. Even though the speech pathologists at Yale were outstanding, the otolaryngologist (this is the voice doctor) was not. She was horrible. She made me feel like my voice and my desire to sing were not important, which definitely made me feel like *I* was not important, and not worthy of care. It was one of the worst medical appointments in a year marked by some truly bad medical appointments. Voice injuries are so much more psychologically difficult than I understood. NEVER make someone feel like their voice does not matter. I still get angry when I think about that appointment. Doctors supposedly take the Hippocratic Oath – first, do no harm. A lot of harm was done to me that day.
Today’s evaluation at UConn was a totally different story! Dr. LaFreniere was wonderful. He was exceptionally kind. He apologized for every unpleasant aspect of the evaluation – having a camera stuffed down your nose and into your throat to film your vocal cords is not comfortable. Best of all, he referred to me as a “vocalist.” This practice specializes in rehabilitating the injured voices of singers. He said it was extremely likely that I have recordings of some of his patients at home. He has a lot of confidence that they can help me and so do I.
In further good news, when I had this examination by scope back in July 2022, my vocal cords were not stretching at all. That’s why my voice was so monotone. At the follow-up appointment in August, there was some minimal movement. Today’s examination revealed nearly normal movement! There are still some abnormalities. A little asymmetry between the vocal cords, some potential weakness, still far too much tension in my neck muscles. Also some evidence of a bit of acid reflux, possibly impacting the vocal cords. I will start therapy with the speech pathologists at UConn as soon as they can fit me into their schedule.
So, there you have it. I’ve learned that more people than I know are reading these updates so I will keep them coming. My main takeaway for today is the same as always: Be Kind. I met two new doctors this week, which is very stressful because I never what to expect. Both Dr. Mannstadt and Dr. LaFreniere were kind, took time to explain everything, and helped me feel valued as a patient and more importantly, as a person. Kindness isn’t always free. It might cost us time and patience. But it is priceless.