Met a new doc at MDA. He was super nice, and seemed to know a good bit about HKPP. He documented my updates: Mom's death, my hospital stay in June (more on that later), and my loss of strength and proximal muscle tone. My arms were very weak, but leg reflexes were slightly more responsive than usual. He reminded me to eat low-carb, recommended vitamin B2 for my migraine, told me to surround myself with all things happy and try to stay distracted from my circumstances. He's one of several docs who have said this over the last 6 months. I'm a realist, but escapism is important when you're trapped in a broken body and stuck with a life and future you cannot control.
My renal doc saw me the same day. We discussed my potassium level, weight gain, breathing and sleeping problems, chronic pain, and Mom's death. He wants me to find a sleep specialist anywhere in Alabama who will take me. He believes I have sleep apnea. We reviewed test results and noted the general wackiness of my kidneys. We had a chat about my latest meds and symptoms, and the fact that I am needing to move back to Mississippi so I can continue to receive care there. He said he will always do whatever he can to accommodate my schedule because he knows how far I'm having to travel right now. This situation is a nightmare, but I always leave feeling a lot better emotionally after talking to him. I'm an introvert with chronic pain and anxiety, but he has so much patience with my moodiness and awkwardness. Best doctor ever.
New meds added to the pile: spironolactone 25mg titration, vitamin B2
Orders: potassium test in a few weeks (to be done in Bayou La Batre)
Appointments: Back to back clinics again - April 14th - and may God bless them in advance as that is the 1st anniversary of Mom's death. Might be a hell of a day.
I believe wholeheartedly that my physicians at UMMC have sustained my life, and I hope to continue to receive care from them for as long as possible.