Septic Shock and the ICU

Kerissa • Sep 13, 2018

Hey friends,

It’s been more than a month since I last posted….and sometimes, no news DOESN’T mean good news.🙁  This will be extremely long, but I want to document everything to remember….so here goes!

About 24 hours after my hip labral repair surgery on August 10th, I went into septic shock (there are 3 types of sepsis: sepsis which I’ve had twice, severe sepsis, and septic shock).  Everything happened SO fast, and it was so scary and tramautic to experience. :'(  The Rapid Response team was called because my blood pressure got dangerously low, I had a 101.6 fever, and just felt really bad.  They quickly came and assessed—blood cultures/labs were drawn, a chest x-ray was ordered, and vitals were checked every 15 minutes…they decided that I needed to be transferred to the MICU (medical intensive care unit) because my MAP (mean arterial pressure) was below 60.  Normally, my MAP is around 75, and it needs to be above 60 in order for all the organs to be adequately perfused with blood flow.

Once I got transferred, an ICU nurse tried placing another IV (even though I have a central line in place, they needed more access to give meds), but because my blood pressure was SO low, she couldn’t get one in.  She had to keep trying, and it was so painful.🙁  A respiratory therapist also came and tried getting an “arterial blood gas.”  To obtain an ABG, you have to draw blood from an artery vs. a vein.  She, too, had so much trouble and kept digging and digging in my wrist.🙁  It was terrible.

The doctors started me on a “vasopressor.”  A pressor is a very strong medication given to treat life-threatening low blood pressure.  My blood pressure was so low that my kidneys started shutting down (that is, they stopped making urine), so the ICU doctors also placed me on lasix to get rid of all the fluid.  My liver also started failing and got “hit” with ischemic hepatitis.  My liver enzymes sky rocketed and were 40 times higher than the upper limit of normal (normal is under 40, and mine were above 1600).

A liver ultrasound showed that my gallbladder was distended, so they wanted a CT scan to rule out other causes of infection. But I was vomiting all the time…all over myself, in the hospital blanket, on my pillow, in green emesis bags, right after getting meds pushed through my j-tube (which was odd because the tube goes through my jejunum and bypasses the stomach), and even while on the CT scan table.🙁

I had terrible chest pain/tightness, and 2 x-rays showed fluid in my lungs.  So in addition to being placed on my adaptive servo ventilator for my breathing, they also had to place me on 10 liters of oxygen through my ASV machine.

I had really bad double vision….the doctors suspected it was because of the shock on top of my mitochondrial disease, so my eyes became extremely weakened from the stress of everything.

I felt emotionally spent and was in tears from all the pain—the post-op surgical hip pain, the body pain from septic shock, etc., so I was given IV Dilaudid (which is stronger than morphine) every 2 hours.  My blood counts and other labs were all over the place—I was constantly being repleted with D10 (dextrose), IV Phosphorous, IV Calcium, IV Magnesium, etc.  I hardly slept because the pump kept beeping all the time or because the nurses kept coming in to give meds/replace IV bags.

When I was given IV nausea meds which stopped the vomiting for a period, we tried a second time to get the CT scan.  Results showed that I didn’t have cholecystitis (thankfully), but it did show body wall edema, ascites (fluid in the abdomen), and an enlarged para-aortic lymph node (reacting to the shock).  It also showed that I had bilateral pleural effusions and atelectasis (areas of collapsed lung) which explains all the chest pain/breathing problems I experienced.

The Infectious Disease team placed me on 2 very strong IV antibiotics for the shock, but later on, blood cultures didn’t grow anything (that means a blood infection isn’t what caused the septic shock).  To this day, we still don’t know what caused the shock.  The hospitalists said that sometimes a cause isn’t found.🙁  I saw my immunology specialist just this week, and she has one theory..  She thinks the septic shock was caused by the mast cell disease flaring up from the surgery and causing an extreme immune reaction (due to not being able to take my compounded mast cell stabilizer medication while in the hospital).  In case she is right, she put together a plan that she wants the doctors to follow for any possible future surgeries/procedures I have.

But back to the story…  When my blood pressure normalized, I got transferred out of ICU and to the step-down unit.  While there, I had these awful neurological episodes.  I don’t even really know how to describe what happened.🙁 Every episode, I started experiencing a high heart rate, trouble breathing, very fast respirations, profuse sweating, terrible posturing/stiffening of my arms and legs, arching of my back, and more.  I know that doesn’t sound terribly bad, but it was…you had to be there to fully understand.🙁 Out of this whole ICU ordeal, these episodes were the worst.  My family was crying, and I just didn’t know what was going on.  Something felt terribly wrong.  The neurology team came to observe the episodes, the rapid response team was called again, many nurses crowded around…everyone tried everything to figure out what was happening.  They gave me a bolus of IV fluids, they tried different medications, they used a different monitor on me, and much more.  To be honest, I don’t remember everything…I do know that I passed out more than once and then came to..   The doctors weren’t sure if these episodes were seizures, autonomic/neuro storms, dystonia from a bad reaction to a medication they gave me, or what… :’(

But, by God’s grace, these episodes passed after some time.  The doctors wanted an EEG done, but by then, it seemed like the worst was over.  Even though these episodes passed, the whole ordeal was so traumatic.  My family can’t stop talking about how horrible it was to see/watch.🙁

Even though my body experienced septic shock and everything else that happened with it, I was only in the hospital for 6 days.  Friends, prayer is so powerful, and God really does hear each and every one!  When I was in the ICU, my very caring pastor visited me early Sunday morning before he preached.  He prayed for me, and it so encouraged my heart.  During his sermons, he also told the whole church about me.

My whole family and I felt the prayers of so many.  Through this storm, there was also peace.  And I am reminded again how blessed I am.  So many caring friends and family visited and blessed me and my family with cards, flowers, and snacks.

Even my pharmacy and all who work there wrote in a card, gave gifts, flowers, and a treat.  And one of the pharmacists who is always so kind to me and my parents came to my house just this week and delivered the whole package.  Can you believe it!? :’)

The verse I lettered above (at the beginning of the post) a while back means so much to me.  God is so faithful.  So faithful.  He is always there for me and with me.  When I passed “through deep waters” last month, He was right there by my side.💚 He blessed me with such great ICU doctors and very caring nurses.  If it wasn’t for the rapid response team acting so fast, things could have gone so much worse.

Still, I hope none of this ever happens again.😰

Even after getting discharged, I still felt pretty ill and “off” because of the ischemic hepatitis. My liver enzymes continue to stay high (definitely not in the 1000s), but I just had my weekly labs done today, so we’ll see what they look like now.  Doing physical therapy twice a week for my hip.  It’s still pretty inflamed..  My orthopedic physical therapist is running the Berlin marathon this coming Sunday.  It’s 26 miles, and she hopes to run it in only 3 1/2 hours!!😲

On Friday, I have my first appointment with OHSU Endocrinology for the osteopenia.  And next week, I have more PT, a follow-up with my GI specialist, and an appointment with my neurologist to discuss those neuro episodes I had..  Staying busy!

Thank you all for continuing to pray for me!  I’m so grateful.💚

By Kerissa Lee 27 Apr, 2024
Read Part 1 and Part 2 if you missed it.  | Part 3 | After numerous days inpatient, I was ready to begin physical therapy at home and work my way off the TPN (IV nutrition). On February 19th, I ended up getting enrolled into a fairly new 1-year old program called “Hospital at Home.” It’s a weird concept, but those who do HAH are still considered inpatient—the only setting that’s different is you can sleep in your own bed and the nurses come to your home. You also are connected to doctors virtually through a tablet. In theory, that probably sounds amazing, but for complex patients like me, I regretted doing HAH because it was complicated and stressful. For example, the leg pain was still so severe, and each time I took pain medicine every 2 hours, I had to log onto the tablet and talk to the nurse who charted everything…. Even during the middle of the night, I had to show the nurse which meds I was taking and what dosage. It unfortunately wasn’t restful, and there were a bunch of other challenges while I was with HAH. By the next morning, I was definitely ready to be discharged from the “hospital” since a lot could be done outpatient. Around 11:45 AM on February 20th, a nurse practitioner came to my house to make sure I was medically stable and ready for discharge. She agreed I was because my vitals were perfect. She left, and another nurse was scheduled to arrive sometime in the afternoon to stop my TPN for the day. But, in the blink of an eye, things changed yet again and the nystagmus suddenly came back with a vengeance. I could barely see out of my eyes (because they shook so much), and when I went to lay down, I asked my mom if the heat was on. She said yes, but I felt soo cold. When the last nurse arrived to stop the infusion, she took my vitals which showed that I spiked a high fever out of the blue. I was so devastated by this turn of events and cried, “I can’t do this again.” 😭 I felt weary, down to my very bones. Experiencing all my usual sepsis symptoms (fever, chills, high heart rate and respirations, severe low back pain, etc.), I hit rock bottom and was extremely distressed that I had to go back to the hospital. 😔 While the doctors scrambled to find a bed available for me, I physically got even worse. During that scary and emotional time, the nurse was so compassionate and caring. I know God in his loving kindness handpicked her especially for me that day. She stayed right by my bedside and encouraged me with words filled with hope. 🥹 She saw a devotional by Joni Eareckson Tada on my nightstand and asked if I was a believer. I nodded, and she immediately began praying for me. 😭❤️ In the midst of this whole trial, some days God felt far away. 🥺 I could really resonate with the psalmist’s cries—“Why are you so far from saving me, from the words of my groaning?” (Psalm 22:1) But when my nurse prayed for me, it was in that very moment I felt God’s presence and peace so near. It was like he knew I needed some tangible comfort to hold on to. I felt so seen and loved by him. I’ll never forget the sweet nurse he sent and the prayers she lifted up. ❤️ Through her, the Lord revived my soul to prepare me for this latest battle. Up next: Part 4…
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…
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