There may be some small errors in this document, they will be removed if discovered.
Where to begin? Well, I’m somewhat freshly home from the hospital. I had an 8 day stay, a full week beyond the original plan of surgery and overnight observation. The surgery was a bit intimidating, but the surgeon had done it hundreds of times before and his confidence was reassuring; it was 7 hours, hence the overnight observation afterwards.
It’s during the observation afterwards that the problems arose. My potassium levels were low, and kept falling despite the supplements they were giving me. My magnesium and calcium were also low, though the calcium was to be expected, as the parathyroid, which is impacted by the removal of the thyroid, helps in controlling the calcium, and the magnesium is tied to the calcium.
My wife had set up my kindle in a gooseneck mount with a remote clicker, so I was able to just lie there and read my book. That helped pass the time, as did the podcasts on my phone and random youtube videos on my tablet.
We’d planned the surgery for a week when we didn’t have our daughters, so she would be able to spend time with me, and it’s fortunate that we’d done so. Having her stay in the hospital with me as much as she did made the process far more bearable than it would have been on my own. Especially when the calcium symptoms overwhelmed me.
Low calcium often results in a strangely intense sensation, related to pins and needles, and while I wouldn’t describe it as painful, it definitely takes your focus in the same way pain does. As it wasn’t painful, there wasn’t much that could be done for it, beyond providing additional calcium, which would reduce and remove symptoms as my body absorbed it.
There were times when I felt like my body was shutting down, and that I wouldn’t recover; that my body didn’t have enough to keep going. That I needed to use my phone to record some last words, telling her that I loved her. Thankfully, that wasn’t the case and I’ve been able to tell her several times since how much I love her and how much I appreciate what she’s gone through to help me with this.
At one point, the symptoms from the calcium withdrawal were bad enough that she thought I was having a stroke, and we did a FAST check, as I had facial drooping. Turns out, that’s just one of the things that happens when your calcium gets too low. The nurses were a little concerned over that, though they were kept good poker faces.
We’d also made plans for our dog, who is a loveable but scared boy of a good eighty-plus pounds. We’d adopted him from a shelter back in the fall of ’22, and he’d been there a good while before we had. Given his disposition, it didn’t make sense to try to board him anywhere, he needed to be taken care of by family. My mother-in-law and my wife’s girlfriend were able to help us with that, and I can imagine the strain on them was considerable. I’m grateful they were able to help us with him, despite all the challenges they faced.
I spent a fair amount of time with IV fluids being pumped into my arms. I’d had an IV put into my right arm when I’d arrived. I think they had a second one in my left hand during the surgery, but it had been removed after. On, I believe it was the 3rd day, the IV in my right arm started to leak, so a nurse removed it and then installed one in my left forearm. Later that same day, an additional IV was placed via ultrasound in my right vein. The fellow who did that was a bit of a character, and confident in his work. (Frankly, all of the staff were wonderful.) The IV in my right arm became the main one to be used, though at times I had IVs in both arms, as they were running bags of Calcium, Magnesium and Potassium fairly regularly, to keep my levels up.
Overall though, the experience wasn’t unpleasant. As I’d mentioned, the staff were great; they had amazing attitudes, were always trying to help, and just really seemed like they enjoyed and cared about their work. The food was quite good, and I even learned of a new meat substitute that I enjoy, Tempeh. I’d ordered it as part of a salad and it really hit the spot.
My wife had brought in a board game, Cosmoctopus, and we were able to play that. It was nice, just sitting there, playing a game. Folks came in for various reasons, providing meds, taking blood or vitals, etc, and they were amused by the cute little octopus.
She also brought in my steam deck, and while I had initially hooked it up to the main TV in the room, she’d later provided me with her secondary monitor connect it to, so I spent a fair bit of time playing games on it. That definitely helped with the waiting.
I had regular visits, both from the surgeon and his team, and from the other doctors who’d been brought in to figure out what exactly was going on and what could be done so that I could be stable enough to go home. I’m sure I’m leaving out a bunch of details, but the short version is that the surgery went well, the tumours were removed, and things were looking good, as far as the cancer went.
Monday, my wife brought our daughters to visit, and we were able to go down and have a family dinner in the cafeteria. It was nice spend time with them, though dragging around the IV of potassium was a little awkward.
At some point, the team brought in a nephrologist, which as I understand it specializes in the kidneys. After an ultrasound and some blood work, there was positive news and a theory; Hyperaldosteronism. Tests were planned.
The next day, they infused me with 2L of saline over 4 hours, which should lower the levels of aldosterone in my body, and then drew blood. After that, they were able to give me a drug to help with the aldosterone, which should allow my body to stop fighting the treatment. Then it was just a matter of time to get me stable without IVs, so I could be discharged.
Wednesday, my girls came to visit after school, and I was discharged with them. I got to go home, sleep in my own bed. Prior to that, the staff were able to remove one of the two drains that had been installed in my neck and the stitches. The drain was painless but odd feeling as it was removed. The stitches, I mostly didn’t feel, except for a tugging, especially at the end, with the final tiny stitches.
The next day, I had to go to provide a blood sample in the morning, so we were able to take the girls to school. I got a few looks as I walked my daughters to their classroom doors, hopefully I didn’t scare anyone too much. After a week of providing blood samples every 8 hours if not more often, just providing one sample a day was a nice change.
At some point during my sleep deprived state, I’d started to refer to them as phlebotanists, rather than phlebotomists. Taking my blood to feed their plants, apparently.
The test results came back, my diagnosis confirmed. Primary aldosteronism; an endocrine disease. It’s symptoms were things I’d dealt for many years. Having it understood to be the cause, there is hope that those symptoms will be abated or better controlled, and that I can be much healthier in the long run.
I continue to meet with the various doctors, and take an excessive amount of pills, but I’m in a good place right now. It’s been a journey, there is more road ahead, but spirits are high and we will wander on, perhaps a little less lost.
I’d mentioned that my doctor had performed this surgery hundreds of times before, and the surgery itself, seems to have gone quite well. I’d just had a complication that kept me there a week, longer than any previous patient of his; I’d set a new record.
I’ve left out little details, how little sleep I got, due to how often I was poked, how often my vitals were taken, or simply that I couldn’t get comfortable. And also how often the respiratory team offered me water for my CPAP, or to help set it up, despite it being my own machine that I regularly set up and used and that they’d provided a good liter of water for on the first night.
