Appointment updates.
Hey friends,
It’s been exactly 2 whole months since I last posted—I’m sorry I haven’t kept you in the loop lately!
In October, I had a tunneled central line infection (thankfully, it didn’t spread to my blood). My central line site was really tender and oozing a little. So my GI specialist quickly started me on a 10-day course of Doxycycline (a very strong antibiotic I’ve never taken before).
Well, 2 or 3 days after I started the antibiotic, I came down with a cold (an antibiotic side effect that can happen). It took me more than 16 days to recover from just a simple cold.
My neurologist explained that I’ll always have more severe symptoms with any kind of illness due to having mitochondrial disease.
I also found out that this class of antibiotics is on the “do not take” list for those who have mito because it “inhibits beta-oxidation and mitochondrial protein synthesis.” Not sure if that’s also why it took me so long to get better, but now we know that I should stay away from these specific antibiotics if possible.
In October, I also had a follow-up with my orthopedic hip surgeon, and it wasn’t the best news. My hip is still not doing better, and I have a lot of scar tissue in the hip joint. I continue to have physical therapy twice a week, and recently, I also had to get an ultrasound-guided hip steroid injection to soften the scar tissue and decrease the inflammation. The doctor who did the injection felt a lot of resistance (due to the scar tissue) when he inserted the needle into the joint..
Several weeks ago, I had my first appointment with an OHSU endocrinologist. She wanted to run a bunch of labs (I had to get 8 tubes of blood drawn) and have me undergo a cortisol stimulation test to rule out adrenal insufficiency. If I have adrenal insufficiency, my doctor explained how that would be the answer as to why I went into septic shock in August.
Well, I had the test done last week, and the results show that I don’t have AI. That is good news, but that also means we still don’t know why I went into shock..
Regarding the osteopenia, I see my endocrinologist again in March to get another bone density scan done. The scan will show us if the osteopenia is stable or not.
Last week, I had 5 appointments which was so very tiring! And this week, in addition to physical therapy, I have follow-ups with my urology surgeon and my pain doctor.
Here’s something nice to share. I recently got a new wheelchair!
Same color because I love green.
But this frame was made with titanium (instead of aluminum) so it’s considered an ultra-lightweight chair! The seat cushion is also much better than my previous one. And, the whole chair was covered 100% by my insurance (it was over $8000)! One sad thing is that they forgot to add “push handles” which is needed for whenever I don’t have the energy to wheel myself.. So, it’s being looked into.. :/
Here’s some more good news. Regarding tube feeding, I use this elemental (broken-down) formula called Peptamen and then alternate that with an organic “nutrition shake” that contains fruits and veggies. I always tolerate the organic one better, but it’s not covered by insurance because I could only get it from the store or Amazon. Well, last week, we found out that my tube feeding company now carries the organic formula! Isn’t that awesome!?
Anyways, if I don’t get a chance to update again before the end of the year, Happy Thanksgiving (and Merry Christmas)!!
