UMDF symposium recap and appointment updates.
Hello friends!
We are home! My parents and I actually got home on Monday the 20th, and I’m just now blogging. :/ The United Mitochondrial Disease Foundation symposium in Seattle was an amazing first time experience! Yes, it was rough as well because I hardly got any sleep which in turn made all my mito symptoms worse…but, the conference was hopeful and encouraging, too. I wish next year’s was going to be on the west coast again, but it’s actually going to be held in Virginia!
I could say loads about this year’s conference and take up all your time, but I’ll just share a couple things.
We heard all about the latest clinical trials (and their promising results!) for mitochondrial disease, and I learned from a couple of top mito specialists that I’ll most likely be eligible to participate in a Phase 3 trial to be completed next spring!
There’s also another one going on that I may be eligible for as well. I am currently researching more about both and hope to get more information soon.
All throughout the conference, there were these 15 minute “the doctor is in” sessions that patients/families could sign up for. I tried to sign up to see my mito specialist who practices in San Diego, but he was all filled up.
There’s this mitochondrial and molecular medicine geneticist near Los Angeles that I’ve always wanted to see as a patient because Complex Regional Pain Syndrome in mito is a common disease he treats. Well, back in 2014 (I think), he became medical director of Courtagen Diagnostics Laboratory where I had a bunch of genetic testing. The majority of his time is spent in research with Courtagen, but he did move to a private practice to still see a small number of patients…so private that you can’t even find his clinic online!
Guess what? I was able to see him briefly for a 15 minute session at the conference!! And even better news, he wants to take me on as a patient because he researched all about the 2 rare mutations I have! They’re bad mutations, and they exacerbate mito. But it’s so encouraging that I’ll be able to see someone who actually understands what’s going on! This is an answer to prayer to be able to see him! He has a year long waiting list. :O But it will be worth the wait! He also unfortunately doesn’t take insurance, so we’ll have to pay out of pocket. The first 2-3 hour appointment costs a huge amount of money, but I know that the Lord always provides!
Here are some photos I took of our time in Seattle.
me and my favorite doctor (my pain doctor who used to be at OHSU but is now at UWMC)
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Now, onto the long medical update… :/
A lot has happened since I last blogged. I mentioned in my previous post how I got referred to see the hip surgeon and how they were trying to get me in on Friday (June 10th) so that I wouldn’t have to wait until July 11th. Well, the Lord provided an appointment for me on the 10th!! I was so happy. The hip surgeon is very kind and caring. She explained how hip labral tears are very painful and how they don’t heal without surgical intervention.
I am going to be having hip surgery on August 12th. Afterwards, it’s going to be a long healing process. She said I’ll need to have physical therapy twice a week for 3 months and then once a week for 3 more months…! I also won’t be able to bear weight on my left side for a while. I’m going to have to practice with my physical therapist (in the weeks leading up to surgery) how to get up our stairs without using my left leg. :/ I had foot surgery in 2010, but I was able to use my knees to go up our stairs!
This surgery is not going to be easy because I have muscle weakness on top of everything else, so I have to get my right side as strong as possible. But I’m looking forward to no more left hip pain!!
This particular surgery is usually done outpatient, but because my whole medical case is complex, the surgery will be done in the main O.R., and I’ll be admitted afterwards for at least overnight. In addition to the hip labral repair, I’ll also be having another muscle biopsy done while I’m in the O.R. Back in 2014, I had a muscle biopsy down in San Diego. My doctor took lots of pieces of tissue. But whoever handled the tissue in the lab put one of the pieces in the wrong solution (my local mito neurologist said that’s not uncommon unfortunately..), so guess what. I wasn’t able to get a specific test done. So my mito specialist and my neurologist here in Portland said, “Let’s get another muscle biopsy during my next surgery.” I’m so glad I’ll be under general anesthesia for this second biopsy! Being awake for the first one was complete torture because the area wasn’t numbed enough.
I have a follow-up with my hip surgeon on July 11th to discuss the surgery in more detail, and Pre-Op is on July 29th!
All day today, I saw my palliative care doctor, my physical therapist, and my pain dr. Thankful they were all at OHSU! But I’m exhausted now. The two doctor appointments were mainly to discuss pain med changes, what works/what doesn’t work, etc. My pain dr. up in Seattle said he doesn’t want me to take a certain long-acting pain medication at this point that my doctors here in Portland were talking about trying. But I trust him. So we will be exploring other medications with less side effects. There’s this certain IV pain medication that works really well for me whenever I’m in the hospital, so we’re going to have it compounded into an oral medication to see if it can help just as much..
On Friday, I have a first appointment with my new primary care doctor who is a pediatrician and an internist! Looking forward to meeting her for the first time.
And then next week, my whole family and I are heading to the Oregon coast, and I’m excited to spend time with all of them!
