THIS IS MY STORY . . .

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Sep 12, 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. 💚

Post written byKerissa

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