Part 4 ❤️

Kerissa Lee • May 10, 2024



Read Part 1, Part 2, or Part 3 if you missed it.


| Part 4 |


That evening on February 20th, I was transported by ambulance back to the 14C medicine floor. It was such a scary time. 😢 The sepsis caused my body to go into metabolic acidosis. So they quickly treated that with IV bicarbonate and started me on broad-spectrum IV antibiotics while we waited for my blood cultures to come back. I became leukopenic and anemic because my bone marrow got affected. 🥺 This infection wreaked havoc on my kidneys so I continually had to be repleted with large amounts of IV electrolytes (especially potassium) each day. My blood cultures from my port ended up growing Staph Epidermidis. Knowing the cause of my symptoms was an answer to prayer, and the infectious disease doctors immediately started me on an IV antibiotic sensitive to that specific strain of bacteria.


I was admitted for 5 weeks + 1 day (the total from not only this stay for sepsis but also when I was admitted for the mitochondrial crash). Being in the hospital for 2 difficult diagnoses that happened back to back was the hardest thing I’ve ever experienced. I thank God for how he graciously gave some happy times in the midst of it. I loved seeing the therapy dog and was over the moon when the medicine floor kindly let my family bring my brother’s dog to visit me. 😊 I also had some amazing nurses. There was a special night nurse assigned to me, and I’ll never forget him. Even when he was no longer part of my care team, he came to visit me each night he worked—isn’t that so sweet? 🥲


But for the most part, inpatient life was scary and traumatic. And as I pondered these last few months, trying to make sense of it all, I was reminded of several things:


God never abandoned me in my darkest hour. ❤️ Being inpatient for weeks was brutal and like a prison (not once did I leave my hospital room because I had no energy). All those days, doctors, residents, medical students, phlebotomists, pharmacists, IV therapists, dietitians, respiratory therapists, CNAs, and nurses would continually come to my room. Not to mention every time medications were given or IV bags had to be started/stopped or when the multiple pumps alarmed. The exhaustion along with the pain was unreal. I felt so weak and helpless, not just physically. This challenging time reminded me that I cannot do life without Christ. Jesus said, “Apart from me you can do nothing” (John 15:5). And that is so true. During this whole trial, the Lord was the sustainer of my days. He gave me his strength, minute by minute.


Even though God always supplied me with grace to carry on, I want you to know that I still struggled with great fear while in the thick of it. When the pain and suffering overwhelmed me, it was difficult at times for my eyes to see him working behind the scenes. Numerous questions weighed heavily on my shoulders, and I felt so alone each day. But as I processed everything, this trial reminded me that no one knows and understands my suffering more than Jesus. ❤️ Matthew 8:17 says, “He took our illnesses and bore our diseases.” Isn’t it so comforting that Jesus knows what we’re going through? Even he had questions when he cried on the cross, “My God, my God, why have you forsaken me?” (Matthew 27:46) So when I experience doubts and questions in the future (whether in the hospital or at home), I pray that I will always take them to the Lord and not hold everything in. I’m definitely still a work in progress, though..


I wanted to close this mini series of posts by sharing a verse from Psalm 31:7 (ESV). What a coincidence that I’m 31 years and 7 months old! 😆


“I will rejoice and be glad in your steadfast love, because you have seen my affliction; you have known the distress of my soul.”


This verse sums up these last few months. God always sees my pain, and I’m never alone (even though it may sometimes seem like it). He has “known my soul in adversities,” as the New King James translation says of vs. 7. I praise God for his faithfulness and mercy on my life. I also want to give thanks to him that I’m back off the TPN (IV nutrition) and able to eat orally again like before! My muscle weakness has improved as well. 🥲 There are some other concerning issues going on, but I will share a more in-depth update later..


Thank you for reading Parts 1-4 and continuing to pray for me. This has been quite the journey, and I’m so grateful to have such faithful prayer warriors!! 🫶🏻

By Kerissa Lee January 21, 2025
Hi, friends, First off, the piece of art above was hand lettered by me last year before all “this” happened. I’m sad to say that I only have 3 or 4 pieces left to share until I run out.. 😢 I went to see my neuromuscular neurologist in Seattle on January 8th. My neck weakness continues to progress which has been so scary. He said I need to get a neck MRI and some specific blood tests to check for polymyositis. If it is normal, though, his opinion is that this is mitochondrial disease progression. 😔 I haven’t seen my mitochondrial specialist in San Diego in more than 3 years (I started seeing him in 2014!), so I’m sadly no longer considered his patient. The neurologist sent a new referral to him, but I’m not sure if it will be accepted.. He’s almost 80 years old (one of the pioneers of “mitochondrial medicine”). And I don’t know if he’s cutting back on “new” patients.. Even if he did accept my case again, I’m currently not physically well enough to fly down from Oregon.. 😞 My quality of life continues to worsen ever since this unusual neck weakness started this past October. I know I’ve said this before, but I truly miss doing all of my favorite things (like hand lettering art) or even simple tasks (setting up my own IV infusions, vacuuming, washing hair, etc.). 🥺 Before October, I was even starting to drive to physical therapy or the grocery store. Yes, I’m 32 and still don’t have my driver’s license due to being preoccupied fighting mitochondrial disease for almost 15 years now. I never shared the exciting news that I was able to get my driver’s permit over 2 years ago, and it was so fun to drive myself to appointments close to home. Now, I can’t do any of the above which has been difficult to process. I shed tears every now and then just thinking about all that has changed. 😢 I’m having to go to bed around 6:30 PM to lie down and rest my neck. But I’m so uncomfortable from the pain, and I don’t fall asleep until after 3 AM every night. So my pain dr. referred me to palliative care. 😢I know it’s not hospice, but I’m still sad we’re at the point where I even need palliative care. Unfortunately, they’re most likely going to deny the referral (if they haven’t already) because we were told they only see cancer or heart transplant patients. I even checked if there’s palliative outside of OHSU, but they, too, see only oncology. It’s so hard that cancer gets a lot of funding, research, and support, and those with rare diseases are left “on their own.” It’s isolating and lonely. 🥺 I saw my PCP again, and he is just the best and full of compassion. ❤️ He placed the neck MRI as urgent and also ordered more labs to keep pursuing answers since all this is such an atypical picture if it was mito progression.. In case palliative turns my case down, my dr. told me that the internal medicine clinic has a complex and chronic pain management clinic (different from the pain center that I’ve been going to since 2011). He referred me to them to try and help me get more comfortable. I have a wonderful team of doctors and an amazing naturopath, but I’m even going to see a functional medicine doctor for the first time on the 23rd. Praying he could maybe have some additional insight on everything and will offer some fresh ideas for treatment as well.. I also have an appointment with the metabolic geneticist on the 28th.. I’ve read through the Bible more than once, but it’s amazing how the Lord points us to specific verses at just the right time. I don’t know about you, but sometimes I think, “I don’t remember reading this before!” Paul David Tripp’s newest devotional Everyday Gospel has been so very encouraging. He shared 2 verses from the book of Genesis where Jacob said that God “answers me in the day of my distress and has been with me wherever I have gone” (35:3). Several chapters later, Jacob also said that God “has been my shepherd all my life long to this day” (48:15). When I read that, I felt such peace. God spoke to my heart to remind me that He is with me and for me….in every circumstance no matter how hard. ❤️ Could you please pray that I can have the MRI completed this month and not have to wait many weeks? Pray that all of my doctors will have wisdom as my case is so complex. Lastly, could you pray that I will persevere and keep walking by faith? I feel so weary, not only physically but also mentally and spiritually. 😥 Thank you so much for praying for me all these years. ❤️
By Kerissa Lee December 13, 2024
"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Psalm 62:2
By Kerissa Lee November 9, 2024
“Be still, and know that I am God.” -Psalm 46:10 
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