Septic Shock and the ICU

Kerissa • September 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 April 30, 2025
"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world." -John 16:33- 
By Kerissa Lee April 9, 2025
Dear friends, I’d really appreciate your continued prayers. 🥺 Thank you for being on this journey with me through the good and bad. ❤️ Last year, I had a sleep study where I shared that I was diagnosed with moderate Central Sleep-Disordered Breathing (central apnea happens when the brain doesn’t tell your body to initiate breaths). It was noted that I stopped breathing about 17 times per hour. Well, my neurologist wanted me to get yet another sleep study last month to make sure this neck weakness hasn’t caused worsening apnea. And I’m sad to share that the results were much worse than last year’s. :( I thought last year was bad, but this latest study shows that I stopped breathing more than 40 times per hour (almost 400 times total through the whole night). 🥺 This was hard to hear and also such a reminder that God is the one who gives us “the breath of life” (Genesis 2:7) every minute. It’s by his mercy that we wake up to each new day. ☀️ What makes my case complex is that my esophageal sphincter has been affected by the mitochondrial disorder—it’s weak, so when air from a sleep machine is pushed down into my lungs, bad throat gurgling happens which keeps me up at night because my esophageal sphincter can’t close all the way like it should. :( My appointment with the rheumatologist was yesterday, and I wish I could say she gave a concrete diagnosis of what’s been happening these last several months…but that wasn’t the case. 🥺 I have to get more specific labs done. She also ordered x-rays of my hands and feet to check for possible spots of rheumatoid arthritis or calcinosis. The doctor said sometimes a new condition happens gradually, and it’s a wait-and-see type of situation. 😥 If these additional tests and labs still don’t give a clear cut answer, I’m so glad I have a second opinion with another rheumatologist at the end of June. This one sounds especially good because he’s a DO (doctor of osteopathic medicine) and offers a whole-body approach regarding treatment. Could you please pray something can be done soon as my quality of life continues to be rough, and these latest symptoms have been going on for half a year now. :’( Hard to believe October was 6 months ago! All this time, I’ve just been waiting.. I did ask my PCP at one of my appointments if he ever orders treatment for something even without a definite diagnosis, and he said “yes” which was encouraging to hear. His family leave is almost over, so I see him again soon. Just finished a virtual follow-up with another one of my amazing doctors this afternoon. 💜 She knows a very specialized neurologist in Washington who has his own private practice. She wants me to see him and hopes he’ll be able to connect all the dots and see the bigger picture. So blessed by all of my many doctors who try their best to help me! 🥲 I started the process in applying to the Undiagnosed Diseases program through Harvard (it got pretty delayed because of my 2 mitochondrial crashes in November and December). My application has been assigned to the Seattle clinical site. Please pray that the doctors who review my case will be able to accept me as a patient and find the genetic defect causing my mitochondrial depletion. The UDN acceptance rate is about 40%.. I saw this quote recently by Martin Luther and just had to hand letter it (so thankful for one of my neurologists who increased the anti-seizure medication which has been helping to decrease my hand tremors). ❤️ This statement by Martin Luther is such a beautiful reminder. All that’s happened lately has been the hardest trial, but I’m praying that I will persevere and bear this cross daily to bring honor to the Lord. I know my life is in his loving hands. I’m thankful for God’s promises in Romans 8:28–“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” ✨
By Kerissa Lee February 27, 2025
Hi, friends, I went to see my neuromuscular neurologist in Seattle last month, and since there are no neuromuscular specialists here in Oregon willing to see me, he kindly placed a referral for me to see a neurologist he trained who practices in Vancouver, WA! That appointment was originally scheduled for late April, but this new doctor moved it way up, and I was able to see him at the end of January! 😊 I’m so grateful for him, and he seems knowledgeable about mito. He told us that I “am easily the most complex patient he has ever seen.” 😥 I had to get a very painful test completed called an EMG (electromygraphy). It involves having big needles (larger/thicker than acupuncture needles) placed and pushed repeatedly into my neck and shoulder muscles. 😢 Hurt so bad!! I’ve had this done more than once on both legs, but it was much more painful on the neck! He wanted this test to check for active myositis since my MRI was inconclusive. Well, the results show that this progressive neck weakness is due to mitochondrial disease progression, and not from myositis. Whenever I have a “mito crash,” I’m usually able to slowly bounce back afterwards with time. But since I’m not recovering, he explained there’s degeneration going on and that my mitochondria are dying. That was hard to hear. 😢 We may have an idea why my condition is worsening quickly.. I received results from an extensive autoimmune panel which shows that 2 labs came back abnormal for a potential lupus diagnosis. We’re not positive I have it as I need more tests done, but my neurologist said that could definitely be what’s causing this mito progression. I have to see rheumatology now, but unfortunately, OHSU denied to see me. In my previous post, I mentioned that my pain doctor referred me to palliative care. Well, they, too, turned me down…. It’s just hard to fathom that multiple specialties at THE top hospital in Oregon won’t see me because I’m too complex…it’s so isolating and lonely. 🥺 Since my PCP has a new baby girl and is out on leave for 2 months again, I’m so grateful for my GI specialist’s help—it was kind of him to place a referral for me to see a rheumatologist at Providence. That appointment is in April. Please pray my whole medical team will be able to find out the cause of why I have harmful antibodies in my blood. It has now been 4 1/2 months since this all started. Time seems to crawl, yet at the same time, pass by quickly. My mitochondrial symptoms continue to worsen. For example, if I have a virtual visit with one of my doctors, just lying in my recliner and talking to them for 20 minutes causes horrible nystagmus afterwords. 😭 If it’s true there’s something autoimmune going on like lupus, it’s using up all the limited energy I have.. 😔 Could you also pray that the mitochondrial disease progression will slow down? I wanted to share an answer to prayer—you may recall I posted last month that my Seattle neurologist sent a new referral for me to see my mitochondrial specialist in San Diego as it’s been 4 years since I last saw him. Well, even though he’s semi-retired, I’m so happy to say that he accepted me which is a blessing from God! Isn’t that so wonderful? 🥹 He’s booked out ‘til September! But I’m not physically well enough to see him now anyways, so we’re praying my health will show some improvement 7+ months from now and I can travel then.. The Lord recently led me to The Tapestry poem written by Corrie Ten Boom. If you aren’t familiar with her, she was a faithful Christian during World War 2 who survived Auschwitz and the holocaust! You may have read this poem before, but knowing her testimony and how she had to go through extremely hard trials makes The Tapestry even more meaningful/impactful. ❤️ She is an example to me, and I hope this is an encouragement to you as well: “My life is but a weaving Between my God and me. I cannot choose the colors He weaveth steadily. Oft’ times He weaveth sorrow; And I in foolish pride Forget He sees the upper And I the underside. Not ‘til the loom is silent And the shuttles cease to fly Will God unroll the canvas And reveal the reason why. The dark threads are as needful In the weaver’s skillful hand As the threads of gold and silver In the pattern He has planned. He knows, He loves, He cares; Nothing this truth can dim. He gives the very best to those Who leave the choice to Him.” -Corrie Ten Boom