A Patient's Worst Nightmare
"Say Goodbye."
When you are in the hospital, being treated for an exacerbation/infection, especially as a child. Your general expectation is that the medical professionals have your best interest at heart and the tools to be able to properly and effectively treat you.
However, it is VERY important to understand your body, to advocate for yourself AND have someone else advocate for you. Because medical professionals are people, just like you and me and medicine is NOT an exact science. Wrong calls are made, judgements are passed, facts are overlooked and mistakes happen. For me, my trust in the people that were taking care of me, was almost fatal.
At fifteen years old, I was admitted into the hospital for a regular Cystic Fibrosis exacerbation/clean out. Where I am brought in, sedated with Propofol, given a PICC LINE, and placed on heavy duty IV antibiotics along with the everyday medications and CPT. A typical stay is about 10-14 days.
Cultures are taken through sputum at the beginning of each admission (or at the doctor's appointment that was a day or two prior) and with that, Infectious Disease Doctor's figure out which antibiotics are best suited to fight the infection that has manifested.
On this particular stay, the medication Zosyn was chosen. In petri dishes, this was the best option. Killed off the current infection I had. Who would have thought, this time, it would also be the antibiotic itself that almost killed me?
Started as any hospital stay, visits from my mother, aunt, and grandparents, cards, treatments and LOTS of boredom. One morning however, I woke up and I felt off. I was tired, my head was foggy and I felt so heavy. I was also very nauseous. The resident chalked it up to being a side effect of the antibiotic. But it wasn't serious and I would likely see relief within a few days once my body acclimated. I took what he said as fact, because I've experienced side effects from other antibiotics. You really don't get a choice. Nausea, headaches and body aches. Or worsening of a very possibly fatal infection? I'll take the side effects!
I then noticed that my urine was very dark, almost red and there was little pieces of debri floating in it. I mentioned it to a nurse, who paged the doctor, who instructed them to start taking samples. But I never heard back from anyone on the results. Which to me was very odd. They continued for a couple days, collecting my urine, but weren't giving me results. So I figured it was dehydration because if it was something serious, they would have told me, right? (Wrong)
My Grampy, Nana and Aunt Lisa had come to visit and commented on my very odd discoloration and paleness. Especially because during this time of year I would have still had a bit of my tan. They knew I had been feeling off, but felt the same way I did. If the doctors were worried, they would tell us. They had always been very vigilant and aggressive with my care and I had always been well taken care of. How were we to know, I was so close to dying? Something I know my grandfather feels guilty over. He's never said it outright. But he mentions it time and time again. Almost as if he could have done something. I know you're reading this, so I want you to know, there is NOTHING you could have done. The nurses saw what you saw and did nothing, so how could we have known it was serious? So it's time to forgive yourself for that.
The day after their visit I was sent down for PT. It keeps your strength up, helps you heal, and (a very smart man once told me) "A body in motion, STAYS in motion." But there is also a time for rest and healing. Which is what I should have done. I had gone downstairs feeling (oddly) very good! Just a slight headache. But hey, I was happy that was it! I ran on the treadmill, I was on a large incline, very fast paced and my body had this overwhelming amount of energy out of nowhere. ( I found out that's common right before death) I assumed the doctor was right. My body had finally acclimated and my infection was being killed off. I was happy I was on the mend, hopefully this meant I could make it home for Thanksgiving! I got back to my room, drenched in sweat. Had even opted for taking 4 flights of stairs instead of the elevator.
When I got back to my room I laid on the bed trying to let my heart rate come down. The sweat started to dry. I felt INCREDIBLE (danger)! Sat up, turned on the tv. Grabbed a snack off my side table and I noticed the door had been left open (pet peeve) so I got up to close it. BIG mistake. As I began to shut the door, I felt all the blood leave my head, lights dimmed, my mouth went numb and I hit the floor convulsing. My body wouldnt stop jerking and moving and I was terrified. Couldn't be a seizure?! I was told you are unaware while having seizures? I couldn't form a full thought. I at some point had made it over to the bed and hit the nurses button. After what seemed like forever, she finally came in, helped me get comfortable. Heard my complaint and said she'd go talk to the doctor.
She then came back in and had given me Tylenol and a Coke and said it was the equivalent of Excederin and I would be fine. I repeatedly asked to speak to the doctor. She kept telling me she had already talked to the doctor, this was what they recommended and I didn't need to waste the doctors time with information they already had. I felt so off and I had a HORRIBLE headache that wasn't going away and I was puking. I was hot. I kept losing my train of thought. I kept passing out in bed. I felt like I was living outside my body. I TOLD the nurse multiple times I felt like I was dying. Asked if someone would call my mom. At one point I heard the nurse telling another that " I was just being a brat and she wasn't gonna feed into me." I at that point knew I was dying and I was so afraid that no one was taking me serious.
......"Mom, I'm calling because I'm dying and I need you to come, no one is listening. But if I'm not alive when you get here, I want you to know I love you." I don't remember hanging up. My next memory was waking up with my mother in bed with me, holding me, I remember cuddling into her chest. She was screaming. But I was peaceful. She smelled like mom. Her perfume, her coffee, her deoderant. I then remember her getting up out of my bed, slinging the door all the way open
" ... COME LOOK AT MY DAUGHTER, DOES THIS LOOK NORMAL TO YOU FUCKING PEOPLE, SHE ALREADY LOOKS DEAD AND SHE'S FUCKING PISSED ON HERSELF AND NO ONES CLEANED HER UP!" Peed on myself? I looked down and realized I had... When did that happen? Surely I would have woken up? I was soaked. I was embarassed.
I just started crying. So this is what it was like? And why did no one care about me?
It wasn't long after my mom's rampage that there was a room full of people around me. Apologizing. Hooking me up to monitors. the H.E.R.T (Hitchcock Early Response Team was called in. The "big dogs." The ones that are called in when things need to be figured out fast and you're not satisfied with how your current healthcare professionals are dealing with the situation.
I don't remember much of what happened in the next couple days following. But my mother said my skin was paper white and spotted with gray. My eyes were gray and sunken in. My lips were shriveled and void of color. My gums and mouth were white and cold. My heart rate was almost 200 while sleeping. But my BP was low. Do you realize how HARD my heart had to have been working? When they tried to draw blood, my veins were so sunken and deep that they couldn't get a stick. But that was the first time I had woken up. I remember the endless poking and prodding and widdling under my skin and the doctors in the room saying "Good Courtney! Good! Fight! Good! Come on, Courtney, wake up sweetie!" They all sounded like they were underwater. My mom said that was the first time they had seen any life in me.
They did finally resort to having to use my PICC to draw the blood and when they did, my mother said it looked like kool-aid. When the doctors saw that, my mother said they kind of eyeballed eachother, and she didn't know if that was a "good look" or "uh-oh look" but it definitely meant they must have had an idea of what was going on. Finally.
Diagnosis: Drug Induced Auto Immune Hemolytic Anemia. My body, because of the antibiotic,had started attacking itself. ( Now that's not to say it's a bad medication. It saves A LOT of lives. I'm just someone who has an adverse reaction to Penicillians, apparently.)
My white blood cells attacked my red blood cells. I was "technically" bleeding out, internally. When all was said and done. My hemoglobin was about 3. Normal for women is between 12- 15.5. You have to lose a lot of blood/cells to be where I was. I wasn't getting alot of oxygen to my brain because the red blood cells are what carry oxygen around the body so I could have ended up brain damaged/dead. They are also what transfers carbon dioxide to your lungs for you to exhale. If you can't do that. Your body starts to poison itself.
They started to get in orders for back to back blood transfusions. To which I recall having 4-5. My mother said the first ones they were literally squeezing into me, to get it in as fast as possible. They also put me on high dosed steroids so my immune system would weaken and stop attacking my body.
At this point, I just wasn't waking up anymore. They assured my mom they were gonna do everything in their power to help me out of this. But it would be best to get everyone ready for the worst and give them a chance to say goodbye. I can't imagine how my mother felt. "Say Goodbye." To your fifteen year old daughter. It must have hit like a ton of bricks.
My Aunt remembers clearly where she was and what she was doing when she got the call. It was right around Thanksgiving so she was getting all the stuff to make a buffalo chicken dip. My mother called and said " We almost lost Courtney last night." My Aunt then just put down the basket and walked out. We all know where she ended up just a few short hours later. ( The hospital is quite a ways away.) My Auntie Lisa ended up having to stay with me because my mother had to go home to take care of my siblings. This incident, set off my Aunt becoming my advocate for all my medical stays and decisions. As a teen, people don't take you seriously. You NEED an adult to back you. Even as an adult, you need someone to push for you. I CAN NOT stress this enough. She was a huge help throughout my "rehabilitation" process. Keeping nurses in check, asking questions. Going over things repeatedly. Speaking at length with my doctors. She's a godsend, truly.
One thing you'll learn, throughout your journey with me. Is that I hit back. Always.
You're damn right I woke up, I got myself up and walking. Even though it was incredibly painful. I was incredibly swollen. Everywhere. It was a bit silly visually, honestly. I went home and I went back to school like nothing had happened. I just wanted to go back to being me.
We later found out, that they had known there was blood in my urine, but not just blood, broken and whole red blood cells....
I'll never truly know who dropped the ball and how they could have will all the information they were given/had. But the experience taught me so much about my body and how far I'm willing to go. How important advocacy is. How sometimes, it's ok to be a bitch, if it means saving your life. The lessons I learned from all of this has saved me many times since then- stories for another day.
I'll never let another person, not even a doctor, tell me I'm wrong about my own body ever again... I know me best.
References:
PICC line: a thin, soft, long catheter (tube) that is inserted into a vein in your arm, leg or neck. The tip of the catheter is positioned in a large vein that carries blood into the heart. The PICC line is used for long-term intravenous (IV) antibiotics, nutrition or medications, and for blood draws.
Resident Doctor: someone who already has a basic medical graduate degree and is now working for a Post graduate degree like MD ,MS . They typically spend 3 years as Resident doctors before they get their Specialization in the branch chosen. (i.e pulmonology) These are the daily doctors overseeing your care while inpatient
CPT (chest physical therapy): is the term for a group of treatments designed to improve respiratory efficiency, promote expansion of the lungs, strengthen respiratory muscles, and eliminate secretions from the respiratory system.
Cultures are taken through sputum at the beginning of each admission (or at the doctor's appointment that was a day or two prior) and with that, Infectious Disease Doctor's figure out which antibiotics are best suited to fight the infection that has manifested.
On this particular stay, the medication Zosyn was chosen. In petri dishes, this was the best option. Killed off the current infection I had. Who would have thought, this time, it would also be the antibiotic itself that almost killed me?
Started as any hospital stay, visits from my mother, aunt, and grandparents, cards, treatments and LOTS of boredom. One morning however, I woke up and I felt off. I was tired, my head was foggy and I felt so heavy. I was also very nauseous. The resident chalked it up to being a side effect of the antibiotic. But it wasn't serious and I would likely see relief within a few days once my body acclimated. I took what he said as fact, because I've experienced side effects from other antibiotics. You really don't get a choice. Nausea, headaches and body aches. Or worsening of a very possibly fatal infection? I'll take the side effects!
I then noticed that my urine was very dark, almost red and there was little pieces of debri floating in it. I mentioned it to a nurse, who paged the doctor, who instructed them to start taking samples. But I never heard back from anyone on the results. Which to me was very odd. They continued for a couple days, collecting my urine, but weren't giving me results. So I figured it was dehydration because if it was something serious, they would have told me, right? (Wrong)
My Grampy, Nana and Aunt Lisa had come to visit and commented on my very odd discoloration and paleness. Especially because during this time of year I would have still had a bit of my tan. They knew I had been feeling off, but felt the same way I did. If the doctors were worried, they would tell us. They had always been very vigilant and aggressive with my care and I had always been well taken care of. How were we to know, I was so close to dying? Something I know my grandfather feels guilty over. He's never said it outright. But he mentions it time and time again. Almost as if he could have done something. I know you're reading this, so I want you to know, there is NOTHING you could have done. The nurses saw what you saw and did nothing, so how could we have known it was serious? So it's time to forgive yourself for that.
The day after their visit I was sent down for PT. It keeps your strength up, helps you heal, and (a very smart man once told me) "A body in motion, STAYS in motion." But there is also a time for rest and healing. Which is what I should have done. I had gone downstairs feeling (oddly) very good! Just a slight headache. But hey, I was happy that was it! I ran on the treadmill, I was on a large incline, very fast paced and my body had this overwhelming amount of energy out of nowhere. ( I found out that's common right before death) I assumed the doctor was right. My body had finally acclimated and my infection was being killed off. I was happy I was on the mend, hopefully this meant I could make it home for Thanksgiving! I got back to my room, drenched in sweat. Had even opted for taking 4 flights of stairs instead of the elevator.
When I got back to my room I laid on the bed trying to let my heart rate come down. The sweat started to dry. I felt INCREDIBLE (danger)! Sat up, turned on the tv. Grabbed a snack off my side table and I noticed the door had been left open (pet peeve) so I got up to close it. BIG mistake. As I began to shut the door, I felt all the blood leave my head, lights dimmed, my mouth went numb and I hit the floor convulsing. My body wouldnt stop jerking and moving and I was terrified. Couldn't be a seizure?! I was told you are unaware while having seizures? I couldn't form a full thought. I at some point had made it over to the bed and hit the nurses button. After what seemed like forever, she finally came in, helped me get comfortable. Heard my complaint and said she'd go talk to the doctor.
She then came back in and had given me Tylenol and a Coke and said it was the equivalent of Excederin and I would be fine. I repeatedly asked to speak to the doctor. She kept telling me she had already talked to the doctor, this was what they recommended and I didn't need to waste the doctors time with information they already had. I felt so off and I had a HORRIBLE headache that wasn't going away and I was puking. I was hot. I kept losing my train of thought. I kept passing out in bed. I felt like I was living outside my body. I TOLD the nurse multiple times I felt like I was dying. Asked if someone would call my mom. At one point I heard the nurse telling another that " I was just being a brat and she wasn't gonna feed into me." I at that point knew I was dying and I was so afraid that no one was taking me serious.
......"Mom, I'm calling because I'm dying and I need you to come, no one is listening. But if I'm not alive when you get here, I want you to know I love you." I don't remember hanging up. My next memory was waking up with my mother in bed with me, holding me, I remember cuddling into her chest. She was screaming. But I was peaceful. She smelled like mom. Her perfume, her coffee, her deoderant. I then remember her getting up out of my bed, slinging the door all the way open
" ... COME LOOK AT MY DAUGHTER, DOES THIS LOOK NORMAL TO YOU FUCKING PEOPLE, SHE ALREADY LOOKS DEAD AND SHE'S FUCKING PISSED ON HERSELF AND NO ONES CLEANED HER UP!" Peed on myself? I looked down and realized I had... When did that happen? Surely I would have woken up? I was soaked. I was embarassed.
I just started crying. So this is what it was like? And why did no one care about me?
It wasn't long after my mom's rampage that there was a room full of people around me. Apologizing. Hooking me up to monitors. the H.E.R.T (Hitchcock Early Response Team was called in. The "big dogs." The ones that are called in when things need to be figured out fast and you're not satisfied with how your current healthcare professionals are dealing with the situation.
I don't remember much of what happened in the next couple days following. But my mother said my skin was paper white and spotted with gray. My eyes were gray and sunken in. My lips were shriveled and void of color. My gums and mouth were white and cold. My heart rate was almost 200 while sleeping. But my BP was low. Do you realize how HARD my heart had to have been working? When they tried to draw blood, my veins were so sunken and deep that they couldn't get a stick. But that was the first time I had woken up. I remember the endless poking and prodding and widdling under my skin and the doctors in the room saying "Good Courtney! Good! Fight! Good! Come on, Courtney, wake up sweetie!" They all sounded like they were underwater. My mom said that was the first time they had seen any life in me.
They did finally resort to having to use my PICC to draw the blood and when they did, my mother said it looked like kool-aid. When the doctors saw that, my mother said they kind of eyeballed eachother, and she didn't know if that was a "good look" or "uh-oh look" but it definitely meant they must have had an idea of what was going on. Finally.
Diagnosis: Drug Induced Auto Immune Hemolytic Anemia. My body, because of the antibiotic,had started attacking itself. ( Now that's not to say it's a bad medication. It saves A LOT of lives. I'm just someone who has an adverse reaction to Penicillians, apparently.)
My white blood cells attacked my red blood cells. I was "technically" bleeding out, internally. When all was said and done. My hemoglobin was about 3. Normal for women is between 12- 15.5. You have to lose a lot of blood/cells to be where I was. I wasn't getting alot of oxygen to my brain because the red blood cells are what carry oxygen around the body so I could have ended up brain damaged/dead. They are also what transfers carbon dioxide to your lungs for you to exhale. If you can't do that. Your body starts to poison itself.
They started to get in orders for back to back blood transfusions. To which I recall having 4-5. My mother said the first ones they were literally squeezing into me, to get it in as fast as possible. They also put me on high dosed steroids so my immune system would weaken and stop attacking my body.
At this point, I just wasn't waking up anymore. They assured my mom they were gonna do everything in their power to help me out of this. But it would be best to get everyone ready for the worst and give them a chance to say goodbye. I can't imagine how my mother felt. "Say Goodbye." To your fifteen year old daughter. It must have hit like a ton of bricks.
My Aunt remembers clearly where she was and what she was doing when she got the call. It was right around Thanksgiving so she was getting all the stuff to make a buffalo chicken dip. My mother called and said " We almost lost Courtney last night." My Aunt then just put down the basket and walked out. We all know where she ended up just a few short hours later. ( The hospital is quite a ways away.) My Auntie Lisa ended up having to stay with me because my mother had to go home to take care of my siblings. This incident, set off my Aunt becoming my advocate for all my medical stays and decisions. As a teen, people don't take you seriously. You NEED an adult to back you. Even as an adult, you need someone to push for you. I CAN NOT stress this enough. She was a huge help throughout my "rehabilitation" process. Keeping nurses in check, asking questions. Going over things repeatedly. Speaking at length with my doctors. She's a godsend, truly.
One thing you'll learn, throughout your journey with me. Is that I hit back. Always.
You're damn right I woke up, I got myself up and walking. Even though it was incredibly painful. I was incredibly swollen. Everywhere. It was a bit silly visually, honestly. I went home and I went back to school like nothing had happened. I just wanted to go back to being me.
We later found out, that they had known there was blood in my urine, but not just blood, broken and whole red blood cells....
I'll never truly know who dropped the ball and how they could have will all the information they were given/had. But the experience taught me so much about my body and how far I'm willing to go. How important advocacy is. How sometimes, it's ok to be a bitch, if it means saving your life. The lessons I learned from all of this has saved me many times since then- stories for another day.
I'll never let another person, not even a doctor, tell me I'm wrong about my own body ever again... I know me best.
References:
PICC line: a thin, soft, long catheter (tube) that is inserted into a vein in your arm, leg or neck. The tip of the catheter is positioned in a large vein that carries blood into the heart. The PICC line is used for long-term intravenous (IV) antibiotics, nutrition or medications, and for blood draws.
Resident Doctor: someone who already has a basic medical graduate degree and is now working for a Post graduate degree like MD ,MS . They typically spend 3 years as Resident doctors before they get their Specialization in the branch chosen. (i.e pulmonology) These are the daily doctors overseeing your care while inpatient
CPT (chest physical therapy): is the term for a group of treatments designed to improve respiratory efficiency, promote expansion of the lungs, strengthen respiratory muscles, and eliminate secretions from the respiratory system.
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