Catching up

Kerissa • Feb 08, 2017

Hello friends,

This is super long, so feel free to take a break and come back to this if need be… I’m sorry it’s been so long since I’ve done a proper update. Too much has happened. :O Thank you so much for all your prayers, cards, and emails! You fill my life with joy time and again.

Mitochondrial Medicine —

On January 17, my parents and I saw my mitochondrial specialist in San Diego. I have now seen him in clinic 5 times. At this appointment, he looked over all of my muscle biopsy results (the electron transport chain enzyme analysis, the mitochondrial DNA content analysis, muscle CoQ10 determination, electron microscopy, and histology). In the mitochondrial electron transport chain, there are 5 complexes, and all 5 complexes work together to make ATP (energy). Well, the analysis that was done shows that all my complexes are deficient (low). They’re all deficient because of my significant mitochondrial DNA depletion. My muscle CoQ10 is also very low, so I have to switch to a more potent form of CoQ10 (called Ubiquinol….I actually was taking this before, but it’s very expensive..). Based on all of the information collected, my mito specialist says I have a definite (no longer probable) mitochondrial disease—specifically, a mitochondrial DNA depletion and a mitochondrial depletion. Haha, you’re probably wondering if I’m repeating myself.. But no, those are actually two different things (I won’t try to explain the difference.. lol). He’s never had a patient with both! So he wanted to take a picture of me, and he plans to bring up my complex case to his colleagues..

He wants me to have yet another genetic sequencing panel done (hopefully my last!), but this one will look closely at all the depletion genes and even check for deletions.

My mito dr. also wants me to be a part of this certain registry of 200 patients. I don’t know a whole lot of information yet (hopefully in the next couple weeks), but it’s related to the clinical trial that he’s currently a part of. I’ll definitely keep you posted.

All in all, it was a good appointment and a lot to take in again. My muscle biopsy results are much worse than my first biopsy back in 2014, and we don’t know if this is disease progression or what..

He wants to see me back in 6 months, but we’ll probably see him in a year or longer instead (especially since I heard back from that mitochondrial geneticist in Pasadena, CA—I will be seeing him this May!!).

Pain Medicine —

On January 18th, I had an appointment with the medical director of the UCSD pain center. It was very helpful. He gave us a lot of information on medical cannabis and how much it can help nerve pain, muscle spasms, and more. We have endocannabinoid receptors all throughout our bodies, and that’s why patients usually respond well to medical cannabis. I hope to eventually trial CBD oil (FYI, I’m not interested in the psycho-active types of cannabis..lol ;). This pain dr. works very closely with a Ph.D. in botanical medicine/horticultural studies. She actually is a naturopathic physician and can do phone appointments with patients who live out of state. So I have a phone appointment with her on February 23. She’ll help me with dosing and tell me what type of CBD oil is best for the small fiber neuropathy that I have.

General Surgery —

I had my port surgically placed on January 27th. Surgery went well, but last week was so rough. :'( My nurse wasn’t able to access my port. She tried 2 different sized needles, and for some reason, my port wouldn’t flush even though she poked me 4 or 5 times. It was so very painful and complete torture since the surgery site was so fresh. She even had another nurse come over and try accessing, but that nurse didn’t have success either. The nurse came again 2 days later to try once more with another needle size. But again, no success. My nurses have accessed hundreds of ports, and they said this has never happened before. I even pulled off with my hands all the surgical glue over my incision in case it was “plugging” the hole of the needle.

I had to go without IV nutrition and IV magnesium for 3 whole days. I was finally able to get an appointment at the OHSU infusion clinic this past Friday, and by God’s grace, the nurse was able to access my port on the first try! We’re not sure if it’s because they used a power port needle with a bigger gauge (my home health infusion company only carries a basic port needle). I wish the needle didn’t have to be so thick, tho!

So glad that the port is now working…. My GI dr. was worried I was going to have to head to the ER and get a PICC line placed in my arm if this infusion nurse couldn’t get it to work..

Hematology —

The deep vein thrombosis (blood clot) is actually located in my subclavian and axillary veins. There’s no blood flow through those veins. I had a chest CT scan right before surgery, and thankfully, it showed that the clot does not extend down into the superior vena cava. But I have to get another venous duplex ultrasound scan next week to make sure that the clot has not grown. If it has, my OHSU hematologist (who is nationally known!) will decide on what to do and if I need to be placed on anti-coagulant therapy….but my case makes things more complicated, so we’re praying that doesn’t happen.. Also, research has shown that blood thinners don’t really help catheter-associated DVTs.

Phew! I think I need to take a break typing this… ha ha

Neurology —

I saw my neurologist on January 30th, and she is going to work on getting insurance authorization for the depletion gene sequencing panel that my mito specialist wants completed. She is also upping one of my medications that I take for my headaches as they are not quite under control yet..

Gastroenterology —

This afternoon, I had my monthly follow-up with my GI specialist. I will be having my weekly blood work drawn tomorrow, and he wants to see how my electrolytes look, especially since I went without TPN/IV Mg for 3 days last week and lost fluid weight. He’s also going to keep an eye on my blood counts since I’m starting to become anemic again.

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Next week, I have appointments with physical therapy (twice), diagnostic imaging, pain medicine, and general surgery. And I’m dreading it because they’re on Monday, Tuesday, Wednesday, and Thursday….and all at the OHSU Center for Health and Healing. Lots of driving.. :/ OHSU is building a guest house right next to the center, and it will be completed next year! I hope I can stay there whenever I have several appointments in a row because I just feel sometimes like I live at OHSU..

P.S. One last thing, and then I’ll stop (could this be my longest post ever?!).

This week is Feeding Tube Awareness 2017!!

For those who don’t know, I have a feeding tube inserted in my jejunum (part of my small intestine). I receive a peptide-based (broken-down) formula. I also recently started putting through my j-tube an organic grass-fed whey protein nutritional shake (that I found online and is also sold at stores like New Seasons and Whole Foods). I tolerate it well…maybe even better than the peptide formula! And I love that it’s organic, grass-fed, and even contains fruits/veggies!

I also have a port implanted in my chest. Every single afternoon, I receive 4 grams of IV magnesium through my port from about 4-8 PM. And every single night, I infuse TPN (IV nutrition) through my port. After each infusion, I have to flush my port with saline and heparin. Before my feeding tube and all the central lines I’ve had, I was malnourished, chronically dehydrated, and labeled “failure to thrive.” It’s hard having a line and a tube coming out of me….and it’s hard being hooked up so often….but I’m very thankful I’m no longer dehydrated and malnourished!

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Part 2 ❤️

By Kerissa Lee • 16 Apr, 2024

Read Part 1 if you missed it. | Part 2 | Just 2 days after I was discharged from the hospital, I started experiencing severe nystagmus (shaking eyeballs) along with nausea, vomiting, and retching. I didn’t know what was happening and was again so scared. 😔 I was told to go to the ED since I wasn’t tolerating any of my oral medications. The doctors gave me IV fluids and lots of different IV anti-nausea and pain meds. They told me I needed to be admitted and talked with the neurology and internal medicine departments to see which one should admit me. But….to my dismay, both teams made a bad judgment call when they decided not to have me admitted (my mom has since talked with a patient advocate for guidance on what to do if “this” happens again). Even the ED observation unit didn’t want to take me because I was “too complex.” 🥺 I was sent home still vomiting and in so much distress (with mitochondrial disease, anything like untreated vomiting/diarrhea is a big “no-no” to put it simply because it’s a huge stress on the metabolic system). My body was really struggling, and I experienced very drooping eyelids and worsening weakness all over. The next day, I was seen by my PCP’s colleague, and after much discussion, he directly admitted me to the internal medicine floor. I’ll always be grateful to him for his quick action and the very thorough letter he wrote. There were sadly no beds available, so I waited at home. But, the following day, God was so kind to bless me with a private room that became available. Once I was inpatient, the doctors tried to get a handle on the nystagmus and vomiting. All the usual IV anti-nausea meds didn’t resolve things, so they gave me an “off-label” medication that can sometimes help nausea. That did the trick, but another issue soon arose—I started showing signs of mental confusion. I remember not being able to explain what was on my mind, and if I did talk, it didn’t make sense! For example, 2 nurses were in my room helping each other, and I made a comment about them being married. 🫠 Another instance, my family later shared that I asked them if they could see the ocean out the window. I can’t recall a lot of my time in the hospital because I was so confused.. My mom wondered if the confusion was from the off-label nausea medicine, so the team immediately discontinued it. By God’s grace, that did the trick…. Hospital life was definitely a roller coaster. You know that whack-a-mole arcade game? Once one problem ended, another popped up. After not receiving proper nutrition for many days, I started trying to eat orally again and resumed j-tube feeds, but for some reason, I wasn’t able to tolerate either like before. My stomach became so huge and distended….even with the feeding pump setting of just one teaspoon per hour. It didn’t make sense, especially since I tolerated a high rate of tube feeds two weeks earlier when I was admitted for the neurological weakness. I kept trying to increase the tube feed rate, but my GI tract didn’t tolerate it. The doctors brought up the possibility of TPN (IV nutrition). I was very discouraged and so homesick. With no progress increasing the formula rate, I did in fact have to be placed on TPN. Emotionally, it was a struggle dealing with this new problem on top of the mitochondrial crash.. 😢 Up next: Part 3…

Part 1 ❤️

By Kerissa Lee • 13 Apr, 2024

Dear friends, It’s been almost 3 months since I last blogged.. So much happened, and it’s very hard to believe how quickly things changed. I know many already know the whole story. But for those who haven’t heard it, I will try to recap here. It’s quite the tale, but I wanted to share it on my blog to look back on because God truly carried me through the unimaginable. ❤️ When I requested urgent prayer for the sudden onset numbness and weakness in my whole left leg back in January, I had a routine follow-up already scheduled with my primary care dr. on January 25th. I was so thankful I could see him right away for this new issue. I showed him my worsening weakness, and he sent me straight to the ED to make sure I didn’t have a condition called Guillian-Barre Syndrome (GBS). While waiting for a bed to open up on the neurology floor, the muscle weakness spread to my right foot and up my right leg to the point that I could barely lift both legs up. Words can’t express how truly scared I felt that I was going paralyzed. 🥺💔 It was the hardest time of my life, and I continually wept, not just because of the physical pain (which was the worst leg pain I’ve ever experienced) but also because of the emotional distress.. The “foot drop” in both feet was so severe that my soles were almost parallel to the hospital bed when laying down. It was devastating. Due to the weakness, I couldn’t even walk to the bathroom and had to use a bed pan. The team was concerned about possible heart/lung issues, so I had to be placed on a continuous cardiac telemetry monitor (which is different than the standard one). Twice, they asked me if I’d be okay with life-saving measures like getting intubated (placed on a ventilator) if the weakness kept spreading like it was.. I underwent countless neurological exams by nurses, medical students, residents, and attending neurologists. To rule out GBS, a spinal tap had to be done as well as extensive brain and spinal MRIs (cervical, thoracic, lumbar, and sacral). Not feeling well, it was incredibly difficult to lay in the very narrow MRI tube for more than 2 1/2 hours without a break. When GBS was ruled out, we still didn’t know what was causing the weakness. To be honest, in a way, I WANTED to have GBS because they explained GBS has a good treatment. So, not knowing the outcome and prognosis was very hard. 😢 Looking back, I remember how I shared a verse from Isaiah when I wrote my “2023 reflections” blog post at the beginning of this year: “Let him who walks in darkness and has no light trust in the name of the Lord and rely on his God” (Isaiah 50:10). When I posted that on January 1st, I never could have imagined how dark life would get. I knew God had a plan, but I was still so terrified. And there was nothing I could do but trust him (even though my faith felt so weak while in the thick of it). I cried so much and struggled with great fear. But in the midst of that dark time, I thought of a well-known passage from 2 Corinthians: “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison…” (2 Corinthians 4:16-17). A phrase stood out to me: “light momentary affliction.” This trial weighed heavily on my shoulders….it definitely didn’t feel “light” OR “momentary.” I had so many questions. Could I surrender all and trust that God has my best interests at heart? I prayed that he would grant me the eyes to see everything from an eternal perspective and use this hard time for his glory and good purposes. After spending 9 days on the neuro floor, I was sent home.. The neuro team attributed this whole event to a “very unusual mitochondrial crash.” And only time would tell how I would recover. Up next: Part 2…

Urgent prayer request ❤️

By Kerissa Lee • 23 Jan, 2024

Hi, friends, I had a whole other post ready to go with some good news, but instead, I have an urgent prayer request. I started experiencing sudden onset numbness, tingling, and weakness in my whole left leg, and it’s been so scary. 🥺 It just came on out of the blue. I was doing so well with physical therapy each week (able to walk fast on the treadmill and leg press 40 lbs), and now, I have to limp because my left leg is soo weak. I really want to avoid the ED as much as possible, so I saw one of my doctors today. She’s concerned I’m having a big motor nerve issue. 😭 The plan is to see a physical medicine specialist, have a nerve conduction study, get an urgent MRI done, as well as see my PCP and pain doctor on the 25th and 29th for further evaluation/testing. I know I already said this, but it really has been so scary to lose function so quickly. Can you pray that I will trust the Lord and not worry? It’s been very hard, so I’d really appreciate your prayers and support in the coming weeks. Thank you so much. ❤️