2019 Mitochondrial disease appointment recap
Hey friends,
First of all, I’m sorry it’s been so long again since I last blogged.
Last month, I had my mitochondrial appointment in San Diego—traveling and the trip in general was hard physically (more details below), so when we got home, I had terrible nystagmus and other rough mito symptoms. And then, 2 weeks after that, I had an appointment with my pain doctor in Seattle. So it’s been pretty busy!
I also never mentioned here that I got a little job in January. I am a hand lettering artist with a company called Punkpost (you can look at their website here: Punkpost.com
).
If you look around on the site, you might find a picture of me!
I create card art designs for the company, and I also hand letter customers’ messages in the cards! This has truly been a gift from the Lord to be able to work from home and earn a little money!
Here’s some fun news: I designed a Father’s Day card a few months ago, and for the whole month of June, it was the second most sold card out of all the Punkpost cards!!
If you have Instagram, you can see the cards I’ve designed so far and also all of my other lettering art! And sometimes, I post pieces on there that I don’t post on Facebook. My IG account is @kerissa_kreative. It’d make my day if you followed along with me on my lettering journey!
But back to the San Diego recap.. Even though we’ve been going to SD for the past 5 years, this latest trip was kind of a disaster.
I won’t go into all of the details because it would take too long to type, but I will tell you one of the biggest things that happened…
We had a lay-over in San Jose to change planes, and an older lady who lives in San Jose took from the carry-on luggage (the area above the seats) the bag that carried my adaptive-servo ventilator because it looked so very similar
to her c-pap bag.
So, when I was getting ready for bed at the hotel in San Diego, my dad started setting up my machine. Only…it wasn’t my machine.
Since the lady took my ventilator bag, we took hers and had no idea at all that she took mine until we opened the bag. We were all so upset and shocked, and we didn’t know who to call or what to do!!
By God’s grace, my dad found a sticker on her sleep device with the sleep company’s contact info, so he called them the next morning, and they were able to look up her contact info by entering the serial number of her device. My dad got in touch with her, and she overnighted my machine to our hotel (we did the same)….but I still didn’t get mine for 2 days.
I slept terribly without my machine because I have central apnea which is much worse than the typical “obstructive” sleep apnea….with obstructive, the airway relaxes a little too much and causes snoring. But with central apnea, the brain doesn’t tell you to breathe.
So anytime I started dozing off those two nights, I’d wake up, feeling like I was drowning and needing air.
That whole ordeal with the mixed-up sleep devices was so hard to experience, but we’re all just so thankful that I got my ventilator back (it is very expensive!).
Anyways, the one year follow-up appointment with my mito specialist went well.
He and the fellow added all my genetic info to the North American Mitochondrial Disease Consortium (NAMDC) and the MSeqDR (another mitochondrial data resource consortium) which is helpful in case they find others similar to me. My mito specialist is a part of NAMDC, and once a month, all the mito experts talk about specific medical cases and offer input to each other. He hopes to bring up my case because he’s never had a patient with both Mitochondrial DNA Depletion Syndrome and Wilson’s Disease. Every time I see him, he tells me that I’m a puzzle and so rare.
I also asked him what the doctors learned at the UMDF 2019 symposium this past June, and he said they’re seeing/learning more and more how mitochondria are involved with inflammation. That was interesting to hear about!
One of the mitochondrial drug trials (called Elamipretide) is in Phase 3 which is the last of the phases before it goes to the FDA approval process. That means it’s doing really well since not many drugs pass phase 1! My doctor said that the patients taking this drug trial feel a lot better. Isn’t that so awesome to hear!? That is, it doesn’t cure them, but they’re not as tired, etc. That news gave me so much hope! It’s a subcutaneous injection, and my mito dr. hopes it gets FDA approved in 2 years! When I tell people that, they’re always like, “That’s so long from now!” But to me, that’s soon! I’ve been seeing my mito doctor for the past 5 years now which means I’ve been waiting that long for some sort of drug treatment. Being on this long journey, I’ve had to learn a lot of patience (and still am!)… I just can’t believe that I may soon get treatment that is something other than supplements!
Next year’s UMDF symposium is in Phoenix, and my mito dr. who’s helping plan it wants me to go! But, we’ll see..
It was so good to see my pain medicine specialist (my favorite doctor in case you don’t know) in Seattle on August 1st. Here’s my yearly picture with him.
He’s seriously the best and so caring! I’ve known him for 8 years now. Regarding the terrible neck pain that I have, my MRI shows that I have a congenital vertebral fusion (another defect I was born with), so I have cervical facet arthropathy from that. He wants my local pain specialist to do a cervical medial branch nerve block, but sadly, she’s booked out until September 19th…and that’s just the office visit to talk about getting it done, not a procedure appointment. He also suggested other pain medications to switch to since I’m getting tolerant to the one I’m on currently.
The hemangioma on the bottom of my foot has been getting even more painful, so I now have to tip-toe on that foot when I walk. I have a 2 hour appointment next week to see the vascular anomalies clinic at Doernbecher’s—the Dermatology, Interventional Radiology, and Plastic Surgery specialists are going to see me all at the same time during that visit.
On top of that, I’ve been experiencing bad dizziness for almost 2 weeks now, and my neuro physical therapist doesn’t think it’s the benign paroxysmal positional vertigo (I’ve had this in the past) which can be easily fixed with the Epley Maneuver. He thinks it’s centrally-mediated vertigo, so I had to tell my neurologist. It’s sadly not resolving yet, and my neurologist said central vertigo can last a long time.
Anyways, that’s what I’ve been up to….lots of traveling, doctor appointments, physical therapy, and lettering cards for Punkpost. Continuing to lean on the Lord because I’m so very weak without Him. He is my rock. And I really really love the Charles Spurgeon quote above that I lettered! So encouraging!
Thank you so much for continuing to pray for me! I’m so grateful and blessed!
P.S. That sure was a long post. In addition to not feeling the greatest (due to vertigo, pain, and other symptoms), this is another reason why it takes me so long to post blog updates…I have to take breaks when working on these posts (I also have to think a while about how to say everything, etc.), so thank you for your patience!
Shoutout to those who made it to the end of this!!
