So I couldn’t sleep and was thinking about the article that Jan sent me to read this morning about Dr. Powell’s personal story of becoming a patient himself.  My next thought after that was a friend that I worked with (also a nurse) telling me her experience at FMC ER a couple of weeks ago.  And then after that came the flashbacks of my own experiences in the ER last summer after my surgery.  I can’t recall if I started writing about it but stopped or if I mentioned it in other posts but didn’t go into details.  In any case, since I am having trouble sleeping again, I decided to get up and write.  

About 8 hours after being discharged home, I was in crisis.  Adrenal insufficiency is a medical emergency but I was not treated as such.  This is an excerpt of the letter I sent to the director and manager of FMC ER  :

On July 3rd, 2019 – I was discharged from unit 112 (my post op was complicated with transient DI otherwise it was uneventful and I felt comfortable with discharge plan).  I presented to FMC ER 12 hours later with symptoms of hyponatremia secondary to adrenal insufficiency resulting from my surgery (which I found out much later from internal med).  I did not receive treatment for a potentially fatal medical condition until 12 hours later.  I was only offered and given hydromorph with maxeran right away to manage my headache and mask my symptoms of what is going on.  I arrived at ER with my husband at around 2 am and I was triaged quite quickly.  I was seen by the nurse around 3 am where bloodwork was drawn and assessment completed rather quickly.  At around 4 am, the attending ER physician came to do his assessment.  Behind the pulled curtains, my bat ears overheard the physician say to the nurse that “She just had major brain surgery, of course she would have a headache”  Because I had heard this, when he assessed me, I assured him that I never had headache like this post-op not manageable by regular Tylenol.  Again, in my experience, I know that not every doctor read through the whole chart/history of the patient – so I also mentioned I was diagnosed with Cushing’s disease prior to surgery.  He brushed me off and assured me that he read my medical history.  

Nobody (aside from the neurosurg resident that was consulted and saw me once told me that my sodium was “a little bit low”) In that 12 hours, I tried advocating for myself (while heavily sedated) and asked the nurse multiple times about the results of my CT scan that the resident had ordered and reported worsening symptoms of higher urine output.  I also asked her about repeated bloodwork which was not drawn again until 12 pm.  From the time that I was assessed by Dr. Michalchuk in the ER at 4 am, I was not seen by the new ER physician Dr. Su again until 2:30 pm when I again pressed my nurse to get off her lazy ass to do something because she only had two patients her entire day shift and was observed to be on her cell phone.  At 3pm, I was finally being treated with hypertonic saline and IV hydrocortisone.  Because I was left untreated for so long, my sodium dropped to 124 when it was drawn at midnight on July 4th.  

When I came around and realized what had happened (I could have seized, left permanently disabled, I already have tachycardia…the list goes on).  I can only conclude that it was gross negligence under the care of the providers the 12 hours I was in Area A at ER.  
…I am seeking justice for my mistreatment, but most importantly, I am concern with others’ lives being put at risk because of negligence due to an attitude of simply being complacent.  I am proud to be a patient advocate in my own nursing career and I will continue to do so even though I am not working right now and recovering at home.  I want your respond to immediate actions taken to safe guard those patients that come through your ER.  If I do not get a respond from you within a reasonable time frame, I will proceed with reporting the story with CBC so that my voice is heard (even though I do not entirely believe that this is a good thing for the morale of your ER team)  I had overheard one of my nurses sarcastically asked the patient next to me about finding a way home after discharge (referring to the Pincher Creek lady’s story) – She was so disingenuous, I could not believe it.  

Less than an hour after that email was sent, I got a reply from the director and manager via email and then my phone rang.  At first, the manager seems to have a rebuttal for every concern that I had – she was well prepared, she had gone through the paper chart and SCM (which I already had obtained from health records) It would appear that procedures were followed properly and i’s were dotted and T’s were crossed.  

Further into our conversation (which was almost an hour long) I asked her, what if that was your daughter, or your mother, sister lying on that stretcher for 8 hours already suffering with no plan, no communication from anybody about what is going on to someone that just had brain surgery.  I told her that when my husband and mom left briefly to go home to rest and look after the dog, I was alone and started crying.  There was not even a box of Kleenex near by and my nurse could not even bother to bring me one – she half-heartedly said “What’s the matter?  Oh I know it has been a long day” In which I replied, “Um, no I have been in the hospital for over a week – I basically just went home to shower and change and now I am back”. She was the least bit interested in providing any genuine comfort or reassurance.  Sharleen (the manager whom I was talking to) I can hear her tone of voice changed after that.  I asked her if she would like her family be treated that way if one day they end up in her ER.  There was a deep sigh and I felt a slight resignation from her after that.  

In my letter I had threatened legal actions and selling the story to CBC if actions weren’t taken immediately to address my concerns.  So I left that in her capable hands to do what she said she would do.  Patient’s Relation would be involved just so that there is a paper trail and a third party to witness a meeting that would take place between the manager, the director and the head physician of ER.  

After feeling somewhat victorious in getting that off my chest – 5 days after that phone call, never in my wildest imagination could I picture myself back in that ER again.  I woke up at 4 am choking on my own blood.  Apparently delayed massive epistaxis post transsphenoidal surgery happen in less than 3% of patients treated.  We called EMS and when EMS asked me which hospital I want to be taken to…I seriously thought I was going to die, like this is it, my brain will swell by the time some doctor actually sees me.  They kept asking me which hospital I want them take me to.  It was one of the toughest decision that I ever had to make.  In my head I thought I had just complained last week, everyone there will have known by now and this time I might just die there.  I had no other choice, it was the only hospital with neurosurgery and ENT, being rational during such a frightening state is extremely challenging… 

When we got there, the ER was swamped with the aftermath of “Last weekend of the Stampede” – I was placed in a wheelchair near the loading bay non visible from triage desk (there were already 2 -3 people waiting in stretchers with EMS which I knew was not a sit around and twiddle your thumb night at the ER)  – my nose still bleeding…only at a higher rate and that useless nose clip they want me to keep on does absolutely nothing because within 15 minutes I was throwing up blood clots.  The paramedic coming on shift was trying to reassure me that there are oodles amount of blood in my body that I won’t bleed out to death (I couldn’t tell her because I was coughing up blood clots that my concern is not losing blood volume, my concern is I just had brain surgery and a week ago I was in adrenal crisis and I have no idea if my half chopped off pituitary is actually producing any ACTH to alert my adrenals that I need more cortisol to deal with this trauma – and then I could almost die again). Yeah, she didn’t know that I am a nurse.  

Blood was starting to pool into my ears, my hearing was getting muffled – finally what seemed like eternity, a doctor said he would see me in trauma bay (Trauma bay is a reserved area for people coming in with bullets or pieces of doors stuck to their side from MVAs) Guess what? It was my lucky day!  It was the same ER physician that actually treated me and got me admitted after waiting for 12 hours circling the drain at my last visit.  The nurse that came on after change over…even with her gown and mask on, I recognized her voice.  It was the same nurse that I gave the name to the manager – one whom I complained about.  Josh said she looked like she was about to cry when she saw me half dead covered with blood.  


….[continued from my letter] I believe that health care providers need to be accountable for their own actions and stop using excuses like the system shortfalls for their conduct and care (in my case, the ER that night and part of that day shift was not busy at all)  Their actions were consistent with the “pass the puck” mentality where do as little as possible and leave it for the next shift or someone else should have put those orders and consults in, I shouldn’t have to follow up and harass them until the patient harasses me to do something.   These people need to be held accountable for their behaviours and actually have real disciplinary actions taken against them – real consequences with stakes as high as losing their livelihoods (licenses to practise)  Nobody deserve to get paid 50 dollars an hour to sit and watch someone circle the drain and then go home.

If you are no longer passionate about working in the ER or just become so complacent with being a nurse.  Find a new career.  I believe that the majority of the people that chose Nursing as a career are genuinely kind hearted and altruistic beings.  I get it, life wears you down.  Many don’t feel appreciated, and the system is far from maximum efficiency.  But going to work is a choice.  Choosing to be the best nurse that you can be that day despite what is going on in your personal life is also a choice.  It is a choice to call in sick and take a mental health day.  If you can’t be compassionate with yourself you can’t be compassionate toward others.  

I can’t help but think that the Universe needed me to go back to the ER for a second experience to see if my complaint had worked.  There was absolutely no explanation to why I had massive epistaxis 19 days post op.  It was such an anomaly that I sit that trophy next to the rare Cushing’s disease one.  

Alexa, bring me my Ativan and play some jazz music.

The sun was glaring and Darwin just loved basking in the sun. I went to pet him and laid down beside him on the floor of my office/art room (that looked like a tornado had torn through) The ceiling had a small water stain about the size of Darwin’s bat ear from the attic rain. I stared at it for a long time… That stain aggravated me. The aggravation it provoked was not proportional to my usual care-free self. Or maybe I had always been more neurotic than I am willing to admit and just do a great job at hiding it. I couldn’t get up from the ground. My body felt incredibly heavy and my body just stopped listening to my mind or maybe it was the other way around. I had to pee but the bathroom was a hallway away too far. I remembered trying really really hard to will myself to get up or I am going to end up soiling myself and I thought I had became one of those patients with catatonic depression. The problem with knowing what you have is knowing that you have it. The problem with talking to someone about what you know you have is having to talk about it.

And so I knew going to see a therapist, and having been one myself was going to be “one and done” or “tell me something I don’t already know” In fact, my first thought after I had made the appointment was to call the following day to cancel it (Classic move – I had so many know-it-alls cancels and rebook all the time)

Can one be an expert in suffering? Why yes, if you devote enough time to it, you can be an expert in anything. Suffering is no different.

Pain in life is inevitable but suffering is optional.

Million hours of podcasts

Having a set surgery date helped me eliminate one uncertainty out of many that created lots of anxiety.  The surgery date was set for a week after coming home from my trip to Helsinki and Stockholm in May. 

When I found out about the confirmed diagnosis and planned surgery, I thought of cancelling the trip out of the irrational fear that I may keel over and die due to exhaustion in beautiful Stockholm next to the pier on a sunny spring day…. I mean, I have been living and travelling with this tumor for the last 5 years without dying, I know it is completely irrational to think that this trip would be any different.  My friend asked if I had ever regretted taking a trip.   I said no and she was right.

I was still working in February and I tried to distract myself from worrying excessively over many things that I cannot control by controlling things that I can such as planning my trip. Despite my efforts, I could not resist looking up articles on Transsphenoidal Surgery and recovery statistics. The more you know, the more you worry and I didn’t want to worry but I also couldn’t help it. Finally knowing what was wrong with me and having a plan to treat it was truly a blessing that I was grateful for. I did not expect the emotional stress creeping up on me to the point where I could not function at work anymore… I actually thought I could still work until my surgery date in June by taking a few days off here and there but the Universe had an other plan.

I went to my family doctor to have disability forms filled out in anticipation of being off work for more than 2 weeks after my surgery. My supervisor pulled me aside at work one day to tell me that she got a phone call from the manager whom got a phone call from the ability advisor notifying her that I am on medical leave. This literally came right after I had a meeting with my supervisor that morning planning the transfer of my clients and my leave of absence after June…. See what happens when I tried to plan? The date my family doctor filled out stating that I am unable to work was the date I saw her for a follow up appointment. So I should have been at home resting to prepare for surgery and not working. After some discussion, it was decided that I would finish the day and not return to work tomorrow. I felt like I was being fired and had to pack up my office by 4 pm. I was surprised and conflicted about it all while my friend at work was like “That’s awesome! You get to sleep in tomorrow, and the next day…and the day after…”.

Darwin loved that I was home keeping him company, giving him massages and taking him for walks.  I talked to my mom on the phone often while I paint and putter around the house.  After about a week of this, I quickly grew tired of being alone during the day with no humans around to tell me their problems.  This led me to look for studio space for creating art.  I came across Burnt Toast Studio and rented a space there to paint.  I had always wanted to have an art studio space…not because I don’t have enough space at home…well maybe I don’t.  My stuff occupies two small bedrooms, downstairs living room, basement and as Josh puts it my “creativity spills over” the dinning table as well.  Two months before my surgery, I developed a routine of driving up to the art studio at least a couple times a week during the day to paint – hoping that there would be other artists to chat with and make art.  However, it was not what I had envisioned.  The place was mostly empty when I am there during the day because people have day jobs….  I did make use of the space (I listened to hours and hours of podcast) and created a 48” x 48” painting that needed a van for transport.

#art #painting #memoir #amediting #yayoikusama #amwriting #story #personalblog

Traveller with a Free Spirit

Unbeknownst to me, when your tumor gives you an insane amount of steroids for so long, you can really do anything. During my fertility trials, I grew increasingly anxious and impatient with the idea of wasting my time pursuing something that I am only half hopeful about. I honestly think that the “secret to life” and reaching “enlightenment” is the simple realization of how valuable Time is. Time is the only thing in life that you cannot have more of no matter how hard you try.

“Spend your money on the things money can buy. Spend your time on the things money can’t buy.” – Haruki Murakami.

I had been working on the same unit for almost 6 years (which is the longest job I have ever been at) I grew restless and even though I was good at my job and enjoyed it, I needed to do something different. I wanted to travel, I wanted to get a new job, I wanted to experience new things. I was tired of doing the same thing everyday even though it was not terrible nor was I miserable. I thought about going to school again for my Masters in nursing or something completely different like Interior Design (which I did complete a certificate for decorating and then realized that I don’t want to be dealing with annoying people in that industry). There was a thirst for new knowledge.

So I went and got a new job in the community. I reluctantly said good bye to a wonderful group of nurses that have taught me so much over the years…and the wonderful friendships that I was blessed with (which I am grateful for today because these friendships continued on) Around the same time, I was looking at the world scratch map that Josh bought me trying to decide where I should go for my first solo travel trip. I read articles and blog posts about solo female travellers and we talked about where I would want to go and how to safely travel on my own. In August of 2016, I decided on Amsterdam and Copenhagen. I had never been to Europe before…the thought of travelling to Europe by myself for the first time was a little scary but also exciting.

Traveling on my own was one of the best decisions I have ever made. Some people may think that I am selfish to go gallivanting around the world while my husband stay home and eat popcorn and peanut butter sandwiches for dinner. Some people may think that my marriage is in trouble or else why would I go on vacation without the love of my life? I believe that there is a certain degree of selfishness that is healthy for all relationships. After all, you have to be just selfish enough to feel secure about yourself and love yourself before you can love somebody else. The decision to travel on my own meant taking the first step in putting myself first before anyone else. As one travel blogger noted – “It can be scary traveling alone, especially when you’ve never done it before. But, to me, growing old without experiencing everything you want from life is even scarier.”

You have to own your own mistakes and learn to trust your intuition when you travel solo. Like waiting on the wrong platform for the train or buying the wrong ticket. There is no one next to you when you react to a negative situation and try to find somebody to blame. You kind of have to learn how to be kind to yourself instead of angry when you make mistakes because you are all that you have in that moment. These are valuable lessons that can’t be taught in school and I think it did save my life when I made the decision to go back to the same emergency department where I had my last terrible experience at.

  “As I get older, it feels like the years pass by more quickly.  I was wondering why that is.  Then I realized that it might be the same as the experience of traveling some place you’ve never been before.  On the way there, the road seems to go on forever.  But on the way back, you’re home before you know it” – Unknown.  

#memoir #stories #amediting #nonfiction #travel #amwriting #personalblog #authorlife #travelblog #indieauthors

The Surgery

My family was given a number to track my status while I was in surgery. In the OR family waiting area, there is a screen, much like the one you would see at the airport with the tracking number and where the patient is. The surgeon scribbled down Josh’s cell phone number on a scrap piece of paper before wheeling me in for surgery. Josh would wait for his call when the surgery is complete. My mom said she had never been so worried in her life, her heart was pounding the entire time. Josh, my brother and my dad passed the time by snacking on junk food from the vending machine and the “Nutman”. The three of them argued over everything from climate change, the carbon tax, to China’s surveillance of the world. The surgeon called Josh 2 hours later and reported the surgery went well. During the surgery, they found another small nodule that was not visible on the MRI and it was successfully removed. My mom said she saw a surgeon out to talk with another family that was waiting and it did not look like it was good news. She was so relieved by the phone call that surgery was successful and they could go see me now.

The part where you enter the OR and within 5 minutes you are in a coma is great. It’s like you leave the world for a little while, you don’t have to worry about anything, you just have to believe that you are in capable hands where you would wake up as they promised (well actually they don’t promise anything, you sign a consent acknowledging that you may never wake up…) Gotta have a positive attitude right?

When I woke up, I literally thought I was going to die. I had this unbelievable headache, nausea, and eventually vomiting blood. The worst of it all was that I really had to pee and they didn’t put a catheter in the OR. The nurse I had was efficient and amazing, I was promptly taken care of (I asked to have a catheter put in) and she quickly gave me something for pain and nausea. I went from feeling like death to near death in about an hour. She did all this while my concerned family was buzzing around. I ended up spending a week on that unit because of complications associated with my Cushing’s disease. I had diabetes insipidus, I was so thirsty and everything I drank went right through me. I had no strength to get up to go to the bathroom every 15 minutes. I thought the Foley catheter was the greatest invention of all time. I lied in bed, drank, and waited for my bladder to contract. I kept meticulous record of my intake and output to pass the time because I couldn’t sleep despite how exhausted I was. When I was feeling a little bit better with a bit of energy, I was carrying my catheter bag around with me like a purse to walk laps around the unit – I thought about asking for a walker so I can hang the bag there and do my laps…. If you ever worked on a surgical unit, you would know that they call patients like me a “Walkie Talkie”. Aside from monitoring and managing my diabetes insipidus, I was improving little bits at a time and I was hopeful for a speedy recovery.

I braved every needle poke and it did not even faze me anymore when the vampires make their rounds (the only problem was that they ran out of good veins to poke because they were so bruised – I told them to just start drawing from the hand).  I lost count after 30 pokes.  The patient next to me had a malignant brain tumour (I think she was only in her late 40’s). I felt very fortunate that I had a tumor that is most likely benign and that surgery would yield a 70 to 80 percent cure rate of Cushing’s Disease.  After spending a full week in the hospital, I was eager and felt ready to go home.

#writing #memoir #nonfiction #recovery #surgery

McDreamy

The surgeon’s office gave me two options for which day of the week I want the surgery on. Monday or Friday? Why can’t it be Tuesday? or Thursday? Not a day of the week where people feel hurried to get out of work for the weekend or just coming back possibly a little haggled from the weekend’s activities. In the end I picked Monday because from what I had read online about only staying in the hospital for a couple of days post op. I didn’t want to be kept over the weekend where my specific attending surgeon is not there and a bunch of dud residents are on call. In the end, it didn’t matter how I had planned that move meticulously because the office called me and switched my surgery date to a month later than originally planned. To a Friday over the long weekend nonetheless…

Leading up to the initial consult with my neurosurgeon I avoided watching Grey’s Anatomy. I googled my neurosurgeon to see if he looked like McDreamy. Because, you know, looks is very important to me. How trust worthy and competent you feel about someone (initially anyways) is basedon how they look. My dad asked me if I found a wallet on the streets would I chase the person and return it to whomever. My first reaction was “What did the person look like?”

If you google Transsphenoidal Surgery, google advises having an expert neurosurgeon to perform the surgery for obvious reasons. My expert neurosurgeon happens to be the only one that does it in Alberta. So I have to trust this guy with him prodding around a tiny bean-shaped pea sized gland that is basically the master controller in regulating vital body functions…that sits nice and snug against a couple of carotid arteries and the optic nerves…so no big deal.

He explained the procedure, the risks and benefits (all of which I already familiarized myself with by hours of articles on success rate etc.) On my consultation notes, he dictated that I was “keen” on having the surgery and proceeding with it after his due diligent in explaining what I already know. Josh was there to ask the more important questions that I never thought of. Like can I see how steady your hands are? Or how difficult is the surgery if you were to compare it to servicing a vehicle? For example, is it more or less difficult than an oil change? The surgeon assured us that it is easier than an oil change. It was like McDreamy being slightly arrogant about it and how a transsphenoidal surgery is a yawn fest of a 2 hour OR time.

Before I was wheeled in to the OR, Josh made a joke to McDreamy referencing the oil change. McDreamy didn’t laugh or acknowledge Josh’s anxieties. Josh told me he felt reassured after that exchange because he saw that the surgeon was focused and ready to work (even though it was 1 pm on a friday afternoon before the July long weekend).

To be Continued…

#medicalstories #memoir #nonfiction

Cushing’s Disease

According to WebMD, if you google “Tumor” – it is defined as an abnormal growth of cells that serves no purpose.

In the summer of 2018, we decided one last attempt at another cycle of Clomid trial.  After all, it was something tried and conceived.  It was my decision to not pursue alternative options that are more invasive at this time.  It was difficult to try and maintain a positive attitude at first but what life experience taught me as an immigrant child being raised by a single mother was that nothing worth having comes easy.  Josh had to remind me of my own mantra when I had moments of “I see the glass half full…but of poison” attitude.  (Gold star for whoever can figure out where that reference came from)

This time it was different. My dosage had to be increased and I was still not ovulating after the first two cycles. The last cycle I felt so sick that I was seen at Urgent Care twice in a month for hypertension. This led to my endocrinology referral and subsequent diagnosis of Cushing’s Disease. My endocrinologist said I did not look “Floridly Cushing’s” Oh but I do… Clinically, I had all the signs and symptoms of Cushing’s Disease for about 5 years. The symptoms got worse in the last two years which coincided with taking Clomid for fertility. I had abnormal weight gain, terrible skin, my hair keeps falling out and growing in places that I do not particular want it to and my energy levels best described as an iPhone 5 with a shitty battery. The diagnosis of Cushing’s Disease lifted a lot of unwarranted guilt around not being able to exercise and eat a proper diet. I was always craving terrible foods. My bone density scan revealed that I was pre-osteroprorosis at 32 years old and at a higher risk of fractures (I guess I do not regret my decision to stop snowboarding a couple years ago) I creaked and struggle to get out of bed every morning like a senior and could not understand why other than blaming myself for not putting more effort into exercising instead of lying around like Darwin. Although, owning a French Bulldog do naturally make you less incline to leave the couch, just ask any Frenchie owners.

The physical symptoms gave me more appreciation for missing my work with seniors at the hospital. You can see them struggle but to be relatable usually takes time…like you have to be old to appreciate being old. And I was told 32 is not old.

The psychiatric and psychological disturbances caused by my Cushing’s Disease was perhaps the worst of the illness. As I got closer to a confirmed diagnosis of having a corticotroph pituitary adenoma (waiting for test results, trying to get an MRI in a timely manner so I actually paid for a private one…) increased my already high cortisol levels – while continuing work at the clinic where I only get to listen to other people’s problems all day. I was increasingly depressed and anxious. I basically looked at myself in the mirror and saw myself as a patient on unit 48 except with a 32 year old face.

To be Continued…

#memoir #stories #medicalstories #nonfiction #lifestories