Yesterday, I had my first hematology visit at OHSU. We found out (through lab work that my GI dr. ordered last week) that I have a copper deficiency which is known to cause many hematological and neurological issues. So twice as much copper is now being added to my IV nutrition. By the way, I’ve been on Total Parenteral Nutrition for about 4 months now with no end in sight.. 🙁
At this point, we don’t yet know why I’m dealing with daily fevers, night sweats, and other symptoms. My hematologist is looking into rare blood disorders and researching more. He ordered lots of common and uncommon lab work. By tomorrow, I will have had 8 tubes worth of blood drawn!
This afternoon, I saw my sleep medicine dr. for a follow-up. I’m still dealing with fast breathing and shortness of breath. I’m also very sleepy and not able to tolerate my CPAP. So he’s ordering another sleep study and something called a multiple sleep latency test. He wants new data to see if I need BiPAP (bi-level positive airway pressure) now. Unfortunately, they’re completely booked, so I’m not able to get the studies done until June. :/
Here’s some good news! 🙂 I mentioned last year how I was able to meet a neurologist at the mitochondrial biology conference at Seattle Children’s. She completed a mitochondrial medicine fellowship and is practicing at Randall Children’s Hospital in Portland. She’s a pediatric neurologist but is now able to see older kids and adults at her mito clinic. In February, my neuro-ophthalmologist referred me to her. The referral process took 10 long weeks, but I received a letter last week saying that I can now see her! This is a blessing from the Lord! 🙂 She’s booked out, so the appointment isn’t until May 26th.