Just a short update. Since the day after Thanksgiving, I’ve been sick with low-grade fevers, a painful sore throat, swollen glands, a barking cough day and night, and terrible fatigue. The doctor thought at first that it was a bad virus, but now he believes I have a bacterial infection in my throat (basically “strep,” but caused by a different bacteria…not the streptococcal bacteria). He said I’m immunocompromised….this is because of mito. 🙁 So he prescribed a week’s worth of antibiotics and codeine cough syrup. Still not feeling any better yet, but it might take several more days.. I’ve been completely exhausted. I just don’t have enough energy in the first place to fight these types of things. 🙁
I had a follow-up with my GI specialist last week. The end of this month marks 2 whole years of being on TPN (IV nutrition). So hard to believe. We talked about taking a TPN break, but after much discussion, it’s just not really possible at this point because of my bad hypomagnesemia (he said “I’m the black hole of Magnesium….”), low blood sugars, continued GI dysmotility, and other problems from mito. 🙁 I’m disappointed but will keep persevering and trusting in God’s sovereignty.
I’m really trying to increase my tube-feeding and not just do it one time a week… If I can eventually receive a large enough volume total each day, then we can maybe talk about a TPN break!
I had a bilateral lumbar sympathetic nerve block scheduled this afternoon, but I had to cancel it because I’m coughing way too much. 🙁 God in His providence worked things out, tho! My pain dr. had to reschedule anyways, and it got moved to next week. So thankful I don’t have to wait many more weeks for it to happen. 🙂
In addition to the nerve block, I have a lot of appointments coming up with Palliative Care, Neuro-otology, Internal Medicine, Nephrology, and Physical Therapy. I’ve had to cancel PT for 2 weeks now. My hip and muscles are all super weak from being sick…progress keeps getting set back. But I’m so grateful for my therapists who continue to work with me, despite my complex medical case!
Until next time! Have a wonderful and blessed Christmas, friends. 🙂