Reflecting 4 years from today (September 9)

 Today (September 9) marks 4 years since my life was forever changed. Almost everything of my “old life” with a flick of the finger was destroyed and disappeared. For 45 years, I was an able-bodied person going merrily on my way. Enjoying a good life - being a first time home owner; a job I enjoyed doing (and I think I did well in it too); and the freedom to just get into my car to venture to unknown places or visiting friends on the weekend. In a blink of an eye, it was gone. I was in and out of consciousness for the first 5-6 weeks. What I still remember are the continuous nightmares which at the end of each one had me dying. Scary, really. When I finally woke up (just before Halloween), I could not move nor could I talk but I could hear everyone talking around me and constant beeping of all the machines; plus seeing the different tubes around me too. Dr. Zuege came to my room to explain I have been diagnosed with a rare autoimmune disease called Guillian Barre Syndrome (GBS) which inflicts 1:100,000 persons per year. Then says it is the worst case of GBS, he has seen in his career. On my discharge summary, it’s documented as Severe GBS of AMSAN variant (Acute Motor-Sensory Axonal Neuropathy) plus severe autonomic dysfunction which included severe bradycardia (lead to a cardiac arrest and having a temporary external pacemaker to stabilize me for 2 weeks); neurogenic bladder, neurogenic bowel as well as diaphragm dysfunction (respiratory complications). Of course, with the extensive axonal damage to my peripheral nerves by the autoimmune response, I am a quadriplegic. Initially, it was total paralysis from head to toe, couldn’t move even my eyebrows! By November 2016, my facial paralysis decreased so that I was able to make some facial movements. By January 2017, my paralysis improved that I gained neck movements. This is basically where my paralysis has stayed still to this present day. I am a quadriplegic from the shoulders down to my toes. I have gone from being a totally independent woman to a woman is now totally dependent on others for even my basic daily needs. Devastating to say the least! 

Having been working in data collection in Health Records for over 25 years, I was familiar with the medical lingo when spoken around me. Plus understanding the pathophysiology of diseases and the concept of what goes into the interventions performed on me, probably didn’t make me as anxious as I had that understanding. On the other side of the coin, not knowing so much medically would have been blissful too. I do wonder if knowing some of this medical knowledge has allowed for a good relationship for a patient and their doctor. Having respect for each other as well as trying to stay positive despite everything against it. I believe it has been an important factor in my recovery moving forward. I have been so fortunate and blessed to have seen the good side of our Alberta’s healthcare system. My hospitalists Dr. Samis, Dr. Bhatia and Dr. Soolsma and my Critical Care Physician Dr Zuege who has cared for me since diagnosis have been amazing. From my experience, knowing these physicians had my back and would advocate for me if I keep on fighting means so much to me in my recovery process. They are willing to listen to my concern and fear, providing the advice and encouragement to get me through that moment. 

Definitely the one thing I learned and continuing to learn is how my body reacts to my surroundings as well as understanding when something doesn’t feel right with my body; so we can try to advocate for further investigation. With having numbness, pins and needles in my lower jaw, arms and legs, there is a dull pain of body 24/7. I have learned to ignore it and go on with my day. My pain scale I say starts at a 2. Just as I have learned how my body reacts, the same goes with my pain level. When the HCAs transfer me from bed to wheelchair and back again or when they turn me to do my basic daily needs - my numbness, pins & needles pain increases making my body feel like it’s humming. I know it’s a gentle push but that pressure on my body causes me sharp pain. I am grateful that it goes away just as quick when they stop pushing my body. Have come to learning to accept this is what the rest my life will be like. 

As part of my recovery and devastating outcome of now being a quadriplegic - is to grieve. Grieve that life as I had planned is never going to happen. Grieve that I will no longer will have the freedom I cherished as an abled-bodied person. Grieve that I cannot to travel to visit family and friends, though I am able to still communicate with them by using my mouth stick and iPad. Grieve for little things like giving someone a hug, that personal connection that is easy to do as an abled-bodied person. Grieve to not have a care-free life, not having to constantly thinking what is going to happen next - recurrent UTIs, continuing to have DUB issues because you are heading into menopause and your hormones are trying to settle down after your body has been through the ringer, or trying to controlling the edema in my hands/fingers as well as lower legs/feet. I have been at AgeCare-Skypointe for 2 years and Dr. Bhatia comes for weekly visits and it is rare when we have nothing medically to speak about. Either sending a referral to a specialist for investigation, following up on something we are monitoring or discussing the results of something. At the end of our visit, we find ourselves doing a checklist to ensure we covered everything we need to. It becomes frustrating and tiring deal with these Issues week-in and week-out for the past two years. 

January 10, 2020 I had a few gyne procedures done. After reading my records, my anesthesiologist decided to give me a spinal anesthesia to allow for my airway to remain free. Everything turned out well. April 24, 2020 I had to be sent to PLC ER due to symptoms of a digestive issue. Here I had appendicitis. I was taken to have an emergent laparoscopic appendectomy under a general anesthesia. I felt I was in good hands, so didn’t real worry as much as I should about having a general anesthesia. The reason being, in August 2017, it was confirmed I had an A-frame trachea or a permanent partial obstruction of my trachea. This condition came about from tracheostomy complication where the trachea cartilage rings were damaged during one of the routine tracheostomy change. As it is cartilage, the damage is permanent, therefore will put me at higher risk for postoperative respiratory complications once extubation occurs. The worst case would be needing a permanent tracheostomy to breath. On the positive - the only postoperative complication I had was a small of bronchopneumonia a day after extubation. Getting on antibiotics early, it cleared up within a week. Remember me telling you about my doctors having my back? As my facility was under Covid-19 outbreak protocols, I would not be able to return to my facility until the protocols were cancelled - I ended up staying in the hospital for 19 days. Dr. Samis knew my iPad and my iPhone are my lifeline to the outside world. He drove to my facility to get my devices for me and brought them to me. I was so touched by his thoughtfulness. 

This summer (July-August), I discovered a new passion, a purpose - being an advocate on paper. Since July 12, 2020, I have written to:

AgeCare Corporation - acknowledging and recognizing the staff who care for me as well as my observations and experiences since moving into AgeCare-Skypointe in August 2018. In addition, what it has been like to live in a LTC facility during the global Covid-19 pandemic.

Alberta’s Minister of Health, Tyler Shandro - expressing my concerns of how he is handling Alberta’s healthcare system as well as my concerns of the healthcare cuts and decisions he has been making since the UPC government have been in power (Spring 2019). 

President/CEO of Alberta Health Services, Dr. Verna Yiu - acknowledging and recognizing the physicians who took care of me in the hospitals as well as AgeCare-Skypointe along all the other AHS employees like nurse, therapists etc who cared for me as well. 

Premier of Alberta, Jason Kenney - expressing my concerns of the changes that have made by the UPC government recently. For some reason Premier Kenney and his UPC party have been focusing on privatization of our healthcare among other things. 

Premier of Alberta, Jason Kenney - expressing my concerns about what his government is doing to our protected provincial parks - making them Crown land so they can invite some Australian company to come to Alberta to mining in our beautiful Rocky Mountains. For reasons I don’t know, he is piling in billions of dollars towards the oil & gas sector which is becoming a dying industry. 

I know when I was able-bodied, I do not think I would have become an advocate for something or multiple issues. Maybe being a disabled person, it made me more sensitive of my surroundings or not having a voice for the first 10 months in the hospital; I know how precious it is to have a voice to share concerns about my care or to share my opinion/view on an issue. I guess what I am saying, one of the “silver linings” of having GBS, I found my voice in more ways than I thought. Voice to literally speak, but able to bring a voice on a issue like our provincial healthcare, for not only for myself but advocate for my fellow residents who cannot speak for themselves and for my staff too. From the positive feedback I have received from family and friends on my letter written so far, could this be a new focus or purpose in my life? Who knew?

In the coming year, we will still be living with Covid-19 pandemic restrictions until at least there is an effective vaccine. 2021? I believe it will be added to our “flu season” during the fall/winter months. With continuing weekly physiotherapy, I wonder what movements will come back. Will my arms strengthen to give me more independence? Will I get a powered wheelchair which will definitely give me more opportunities for independence. We will watch how the last few months of 2020 as well as 2021 unfolds for me.