Past Few Months.

Kerissa • Nov 03, 2019

Hey friends,

Just wanted to check in with a medical update.  Thank you so much for your continued prayers for me!  I’m so grateful.  The past few months have been a little rough since I last posted, and I’ve had to just take it one day at a time and lean on the Lord for strength.

At the end of July, I doubled the dosage of one of my nerve pain medications because the small fiber neuropathic pain in my hands and especially in both feet/legs has been so very bad. :’(  Doubling the dose helped the pain somewhat (a little relief was better than nothing), but then we found out that my blood sugars started spiking into the 170s and higher.

At first, we didn’t know what was causing the high sugars, and I had to get tested for diabetes.  I was so scared I was going to have to add another diagnosis to my long list..🙁

When we finally figured out the hyperglycemia was due to such a high dose of the nerve pain medication, that was a good news/bad news situation.  I was so thankful that I didn’t have diabetes, but, I had to go back down on that medication, and since then, the nerve pain has been so terrible.  It’s hard to focus, my feet BURN, and they feel like they’re constantly on fire.🙁 Haven’t been sleeping well, and the pain wakes me up.  My pain doctor at OHSU said that small fiber neuropathy is one of the most painful neuropathies, even more than diabetic peripheral neuropathy and others like that..

I’ve had to take more opioid pain medication, and I wish I didn’t have to.  I think I mentioned this before, but because of so many people overdosing on opioids in the US, the government is cracking down and making it harder and harder for people with chronic pain to have access to these pain medications.  And my pain doctors are unsure of what will happen down the road for people who actually need these pain meds.🙁

My pain dr. started me on a different nerve pain medication, but I have to increase it very slowly…and currently, this low dose isn’t helping unfortunately.

On top of all this, the vascular mass at the bottom of my right foot is making the pain even worse, and the surgery to have it removed got denied by my insurance.🙁 Not sure if it’s because they think this surgery is only for cosmetic purposes since my doctor is a plastic surgeon?🤷🏻‍♀️ So I’m still waiting for my insurance to authorize the surgery…they’re wanting to see more paperwork, etc..  And OHSU won’t let me schedule a surgery date until they know for sure that they will get paid for it.

My hypoparathyroidism is also worse (due to the mitochondrial disease)—my nails are chipping and I’m losing hair.  With hypoparathyroidism, my body is also not able to absorb calcium and phosphorus well, so this is causing my osteopenia to progress.  My endocrinologist doubled my calcium dosage and also wants more lab work done to see if I may need to take activated vitamin D (which is a prescription medication, not the vitamin D supplement that I also take)…  She ordered another DEXA scan that will be done in March to check the osteopenia, and if it looks even worse, then I have to start an IV bone infusion.  In the meantime, I did see my naturopath to see if anything else can be done for all of this, and he is having me take some homeopathic medicine.  He’s not sure if it will help due to the underlying mitochondrial disease, but it doesn’t hurt to try.

I did want to share some good news—my GI dr. recently stopped my IV nutrition!  Isn’t that awesome!?😊 When I doubled that nerve pain medication back in July, it made me gain weight (my pain dr. said that weight gain is a common side effect).  I gained 3 pounds.😄 So my GI doctor wants to see if my weight will hold.  I was receiving IV nutrition for almost 5 whole years.  It’s always considered a last resort because of the many problems it can cause…it’s especially bad for the liver..  Anyways, my GI dr. said it can take at least 2 months before we know if my weight can hold…  I will keep you posted!☺

While it is very nice to be off of the IV nutrition, I sadly can’t get rid of my central line because I still have to receive IV carnitine, magnesium, potassium, etc. for 8 hours every single night..  But, looking on the bright side, I’m so very grateful to God that I don’t have to be hooked up at all during the day (and lug an IV backpack around everywhere I move)!

Since I most likely won’t post another update this month, I just wanted to wish you a blessed (early) Thanksgiving.  You are all dear friends and family to me, and I love you!!  My heart is so thankful for you.❤

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…
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…
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. ❤️
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