My first blood infection.

Kerissa • March 24, 2016

Hello all,

I’m sorry I’ve been MIA here! I’ll just cut right to the chase.

On February 26th, I started dealing with vomiting. We didn’t know what was going on, and my GI specialist was unsure if this was due to worsening GI dysmotility.

I had 3 more episodes of vomiting and dry heaving, and very early in the morning on March 8th (around 12:00 am), I began experiencing a fever of 101 degrees, terrible low back pain, severe chills, headache, and heart rates over 150 bpm. I was taken by ambulance to Legacy Emanuel ER because OHSU’s ER was filled to the brim, and they couldn’t even take ambulance patients. I had lots of tests ran all throughout that early morning, and we found out that my blood cultures came back positive (in my blood and central line) for gram positive cocci in clusters (more specifically, Staphylococcus Capitis). I was septic and spent 9 days in the hospital. I had to have a spine MRI to make sure the infection didn’t spread to my back. The doctors also ordered a heart echocardiogram to look at my heart valves to make sure the bacteria didn’t stick there. On Friday (March 11th), I had a central line removal procedure in Interventional Radiology. Then, Saturday, I was transferred to OHSU since almost all of my doctors are there. I continued to receive heavy duty IV antibiotics—they were very hard on my veins. On Monday, I had a venous duplex ultrasound study to look at all the veins in my neck and arms to help the doctors figure out the best central line access. And on Tuesday the 15th, I had surgery #11 to get a new central line placed. I got discharged on Wednesday the 16th.

I’m weak and exhausted but slowly recovering here at home. I’m also still on IV antibiotics, and the Infectious Disease doctors will let me know when I can stop them….they are looking at my labs weekly to see if my body is ready to be off antibiotics. I have a follow-up with them in clinic on April 6th.

Yesterday I saw my GI doctor, and we had lots to discuss. Several of my liver function labs are high, and he thinks my liver took a hit from the infection. My bone marrow also got affected, so my blood counts are lower than my normal. I get labs drawn again tomorrow, and we’ll see how things are looking. My next infection in the future (and it’s not “if,” it’s “when”…….infections are a given with long-term IV access. You can be so sterile with your central line and still get sepsis…!), I probably won’t be getting another central line. My GI specialist spoke with the hospitalist, and they both agree I should get a port surgically placed in my chest because it can be less risk for infection. But, there are pros and cons with a port, just like there are pros and cons with a central line..

Next week, I have 3 appointments with Sleep Medicine, Pain Medicine, and Nephrology. My nephrologist did discover that my kidneys are spilling magnesium and potassium which is why my blood MG and K levels can’t hold steady. What’s going on is similar to something called Fanconi Syndrome (this can be seen with mitochondrial disease). She’s looking into starting me on a medication to help my kidneys hold onto Mg, but it lowers blood pressure. Since I already deal with low BP, she wants me to get my BP checked for several days (right before I get up from sleeping). She’ll see what my numbers look like, and we’ll discuss the next step when I follow-up with her next Thursday.

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August 6th Surgery Prayer Requests 💚

By Kerissa Lee • August 6, 2026

"God is our refuge and strength, a very present help in trouble." -Psalm 46:1

Another surgery 😞

By Kerissa Lee • July 25, 2026

Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. 💚 This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. 🥺 I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❤️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul

The end of an era ❤️

By Kerissa Lee • July 16, 2026

Dear friends, I shared in my last post how excited I was that my j-tube was going to be switched back to the low-profile version at an appointment on June 23rd. Well, that sadly didn’t happen because my surgeon wasn’t comfortable with how much pain, swelling, and bleeding I was still experiencing. It’s a long story and hard to understand unless you’re very familiar with j-tubes, but basically, she said switching wouldn’t be a good idea, and we could try again in a few months. Unfortunately, things have only gotten worse, and no matter how many times I adjust this j-tube, the balloon for some reason keeps getting lodged into my abdominal muscle—it causes horrible pain, and not even my pain medication helps! I almost went to the ED the other day…that’s how bad the pain has been. 🥺 After thinking and praying about it a lot, I finally decided to ask my surgeon if I could have my j-tube completely removed since she still can’t find the cause of why the balloon keeps getting stuck. It’s been nearly 12 years using one, so this is a big deal! I just feel like the tract is somehow failing since the surgery was so long ago. Unfortunately, it can’t be done until the last week of July since it’s a policy of the surgery clinic to not use the tube for 2 whole weeks before completely removing (don’t know the exact day of removal yet). I can’t believe it’s almost the end of an era! The Lord has been so faithful and given me strength to endure over a decade of having a constant tube sticking out of my abdomen. Some days were truly so rough—remember I had that huge abdominal abscess back in 2023 and had to have bedside abdominal surgery and drains placed in the ED? I couldn’t have done this without God’s help. 🥹 You might be wondering, “What happens if I get worse again or have more mitochondrial flares?” Thankfully, I still have my port, so if I was hospitalized many times again, I would be given IV medications and infusions. And, if I did possibly need a tube again, I could have a g-tube placed in my stomach which is a much smaller surgery than a j-tube placed in the small intestine. We’ll cross that bridge if we come to it! In other news, I’ve been continuing to do so very well mitochondrial-wise, and God has been gracious and merciful! I feel undeserving of this huge gift of health when so many others I know are struggling (please keep praying for my uncle who’s been in the ICU since March)!! 😢😔 Aside from all these tube issues, life lately has been so full, but in the best way. I was able to study and complete the training to receive my Pediatric First Aid/CPR/AED certification! I’ve been applying to different nanny jobs and even had my first interview last week! It would simply be amazing if it would work out to have a part-time nanny job for 1-2 days per week when I don’t babysit my foster nephew. Speaking of my sweet foster nephew, he recently turned 1!! He had a “One-in-the-Sun” 1st birthday party which was super cute and special! It’s been so neat to see God’s hand on his life from birth til now.. Considering he was in the hospital for a whole month after he was born, he’s truly come soo far, and life is very sweet with him in it! 🥹💙 On top of all that, I was finally able to take the DMV driver’s test, and guess what?! I PASSED!!! 🥰 So so happy and thankful I was able to complete this simple rite-of-passage that many people half my age often take for granted. I constantly think how huge of a gift it is to simply be physically well enough to drive around town. 🥹 After reading this, you might think I'm all healed! And while I am feeling so much better than before, I just wanted to share that I still do experience mitochondrial symptoms every day: spasticity (it often wakes me up during the night because my back muscles tighten/spasm a lot), central vertigo, minipolymyoclonus which causes muscle jerking and tremors in my hands, chronic pain, insomnia, and many other things. But, I'm so thankful to God for different medications I'm on to help these ongoing issues. There are good days and bad days, but I just look back and see how much worse I used to be! I don't know how long this stable period will last, but I continually thank and praise God for it! 🥹