A rough month.
Hello friends.
I just wanted to say a huge thank-you for all of your prayers, cards, flowers, and encouragement! I’m so thankful for all of you. You guys brighten up my life.
I’m sorry it’s been almost a month since I last blogged. Post-op recovery from my hip surgery and muscle biopsy has been extremely rough, and I’ve had to literally draw all of my strength (physically, mentally, and spiritually) from the Lord! This month of August, I had 18 appointments on top of surgery and hospital stays. But the Lord is full of grace, and He sustained me through it all.
I was in the hospital for 4 days after surgery instead of just overnight because my mitochondrial disease never makes things simple or easy. lol I was very nauseated much of the time, despite being on 3 different nausea medications around the clock. I threw up more than half a liter the first night—my GI dr. thinks all the anesthesia and medications slowed my GI tract a ton.
I came home on the 15th, but ended up back in the ER 5 days later at the recommendation of my primary care doctor. I was experiencing shortness of breath, high heart rate, exhaustion, and 4+ lbs. of fluid retention. I had to spend 17 hours in the ER because there were no hospital rooms available until late Saturday night. After many tests and bloodwork, the doctors came to the conclusion that the shortness of breath was due to being anemic from surgery. My body is just so sensitive from having mito. The fluid retention was from one of the anti-inflammatory medications the orthopaedic doctors started me on for after surgery. So I was told to stop it, and since then, my weight has gone back down.
I’m still short of breath and so exhausted…I saw my palliative care dr. yesterday, and even though the ortho docs said I only lost a minimal amount of blood from surgery, he thinks my blood counts dropped because I have such terrible, severe bruising all over my upper leg from surgery and a huge, bulging hematoma near my muscle biopsy site. He estimates that I lost 2 units of blood in my leg from all this.. :/ The hematoma/bruising is so very painful, and it’s putting a lot of pressure on a nerve in my leg. Still having deep, aching pain from it.
Regarding the anemia, my palliative care dr. thinks it’s just taking a while for my bone marrow to bounce back from surgery, and he hopes my counts will go back up without treatment.
On top of all this, I’ve had a horrible headache (not my normal one..) since Sunday. My palliative care dr. ordered some IV pain/nausea meds to be administered through my central line, and they were able to do it right across the hall in the infusion part of the clinic! I’m so thankful I didn’t have to go to the ER for meds.
The pain medication helped immensely but only for about 5 hours… We’re just not sure why the head pain is lasting so long. Please pray it resolves….this on top of everything else has been hard. And I REALLY don’t want to end up in the ER again!
In other news, I saw my ENT dr. the first part of the month, and he’s concerned because I’ve been experiencing ringing in my ears (tinnitus) that comes with 50% hearing loss each time. He’s not sure if this is mitochondrial disease-related or something new. So I’ve now been referred to a neuro-otology dr. at OHSU. He’s very booked out so the hearing tests/consult is not until December.
I saw my GI dr. the week after surgery, and he’s ordering a test called a Metabolic Cart to see how much CO2 I burn, exactly how many calories my body requires, etc. This will help him figure out how much TPN (IV nutrition) my body needs. The test is gonna be interesting!It’s scheduled for September 19th.
I also had another follow-up with my nephrologist, and she doesn’t think I’ll ever be able to get off of the IV magnesium. My kidneys are just not holding onto Mg, and if I didn’t receive 6 grams per day (this is a huge amount….she said a normal person doesn’t even need half a gram a day!), my blood levels would get dangerously low. It’s sad to know, but the Lord is full of wisdom. His ways are perfect. And my human eyes can’t see the whole picture.
Ok, I think that’s about all for now..
Sorry this is so long…too much keeps happening!
P.S. Scroll down only if you like medical stuff. Here are a few pics of the inside of my hip joint! Super cool!
Before: the raised area in the middle-ish is cartilage damage/softening.
After: the area got smoothed down! It looks much better..
Part of the torn labrum. The doctors sutured it down. That white edge to the way left is my femur (thigh bone)!
