A lot has happened since I last posted..
For those who were on FB at the end of September, you can just pass over this whole paragraph as I’m basically saying the same thing. lol On September 22nd, I had an adverse medication reaction that exacerbated my mitochondrial disease….I was taken to the ER by ambulance because I experienced nausea/vomiting (that wasn’t resolving with my home anti-nausea meds), high heart rate/respirations, and weakness. In the ER, I had to be given oxygen because my saturations kept dropping to 82. My white blood cell count was high, and other labs were off. This concerned the doctors, so they did a full infection work-up with urinalysis, blood cultures, and additional labs. After not being able to empty my bladder for over 10 hours, I had to be cathed, too. 🙁 *In August after my hip surgery, I had to be cathed then as well. I’ll never get used to the procedure as it’s so painful! I know it’s TMI, but I just want to share the unpleasant details sometimes to show how rough mito is. 🙁 * I was admitted for 4 nights after this med reaction because I was so weak. The doctors came to the conclusion that I had stress-induced leukocytosis—the body gets so traumatized that it starts preparing for something bad like an infection, hence the high WBC count. Thankfully, there was no infection, and my labs soon normalized after numerous liters of IV fluids. This whole hospital ordeal at the end of September took a lot out of me. 🙁
I saw my GI dr. the day after I got discharged. I had a pulmonary resting energy expenditure test done on Sept. 19th to calculate how much CO2 my body burns, how much protein I need, etc. But he never received the results! He’ll either call me or just wait until my next appointment which is at the end of this month. Based on the results, he’ll adjust my IV nutrition. When I was in the hospital, the hospitalist recommended I receive 1 liter of IV fluids (vs. my usual 1/2 a liter) a day for one week. So my GI dr. ordered that. I only have 2 more days of this regimen! It’s hard lugging around a very heavy liter of fluids in addition to the IV pump for a total of 6 hours a day. :/
Last week, my eyes stopped oscillating completely….but that only lasted for about 4 days. It’s now back. 🙁 I’m grateful for that break, even though it was short!
I had my brain MRI, and it was a clean scan. I know that’s good news, but I’m still having a throbbing, right-sided headache. I told my neurologist, and she said there’s often no clear explanation for why chronic headaches get exacerbated. It could be so many reasons. I have a follow-up appointment with her at the end of the month to figure out what to do.
I turned 24 this past Friday, and while it was a special birthday (my family is the best!!), I didn’t feel super great—my hip was aching terribly, I had a bad headache, and I didn’t sleep well Thursday and Friday night. Saturday evening, I threw up a ton—my stomach didn’t have the energy it needed to move the soft food and liquids I had that day out of the stomach and into my small intestine….it was the worst yet. 🙁
Last week, I also saw my orthopedic hip surgeon. Unfortunately, my surgery recovery/physical therapy progress keeps getting set back with each ER visit and hospital stay, so my hip isn’t doing well. The pain is bad, and she said that’s not normal this far out of surgery.. 🙁 She thinks there’s scar tissue in the joint. My physical therapist is also worried about the hip stiffness. So my surgeon wants me to get a hip steroid injection to calm things down and help the inflammation. Physical therapy has been very aggressive to work at this, and it continues to be twice a week at OHSU.
Today I saw my palliative care dr. We discussed all that happened in September and talked about different ways to manage the headaches/pain better. It’s definitely a trial and error process!
Oh yes, before I keep forgetting to tell, I received my initial muscle biopsy pathology results from OHSU (these aren’t the Baylor tests….still waiting to hear if they got authorized by my insurance…my neurologist had it all taken care of with the medical director of my insurance, but the director forgot to document everything, so my dr. has to start the process all over again!).
OHSU performed basic histology and ultrastructural studies, and sadly, the results are a lot worse than my muscle biopsy histology results done at UCSD back in 2014.. It’s kind of hard to explain, but in 2014, my basic histology was normal…it was only when they ran more tests that they found the mtDNA depletion (a significant one!). But the histology test done at OHSU in August of this year showed “diffusely pale” tissue which indicates that I hardly have any mitochondria in my muscle. :/ The pathologists noted “paucity of mitochondria.” Paucity means scarcity. A lipid depletion was also found, but I don’t know what that means specifically in my case.. Since my histology shows tissue evidence of a mtDNA depletion, that probably means my depletion results (once it’s completed at Baylor!) will be even worse than the 2014 depletion study.. We don’t know if all this means disease progression or what.. I will be seeing my mitochondrial disease specialist in San Diego again this coming January or February to go over everything.
Phew, hope that last paragraph was easy to understand! 😉 Sorry for the super long update!! I no longer journal like I used to (my hand cramps up from the muscle weakness), so I like typing all the details here to remember everything. 🙂