I was arrogant in my thoughts. Having lost so much already through my mom’s illness and death, I honestly felt that I was now immune to any more major sadness or loss or challenges. The universe had had its go with me; I struggled, grieved, and gained strength through it all. That journey took me years to get to the place I am now – able to find happiness within, owner of my decisions and content with me.
Never did it cross my mind that I would be using the blog that I created to update family and friends on my mom’s progress with Creutzfeldt-Jakob Disease, to one day be using this same platform to share my own health journey. I was naive. And now I am here.
So where shall we start? Let’s start at the very beginning. A very good place to start.
Monday, July 20th, 2015
• I noticed for the first time, bending over, and when straightening back up, feeling short of breath. Like I couldn’t fill my lungs. I thought it was the start of a cold.
Wednesday, July 22nd – Sunday, July 26th
• I was in Vegas with my girlfriends, not feeing 100%, but attributing it to the heat and lack of sleep and beverage consumption. I didn’t feel horrible, but noticed a bit more of a cough.
Monday, July 27th & Tuesday, July 28th
• I was tired and figured it was just my body recovering from my most recent vacation.
Wednesday, July 29th & Thursday, July 30th
• The fatigue lingered. I started not working full days to rest or sleep instead. My family doctor could not see me until September, so I saw a walk-in doctor at her clinic. I was told it was a chest cold / cough and could last up to 6 weeks.
Thursday, August 6th
• I went back to the walk-in clinic at the end of the day, as the fatigue had worsened. I knew that a normal cold would not make me so tired. The Tuesday prior I had my first fever set it while I was at dance rehearsal. I saw a different walk-in doctor and he ordered chest x-rays and blood work.
Friday, August 7th
• I went first thing for the chest x-ray, as the image centre was closed once I had seen the doctor. I went to the image centre above my doctor’s office. Which turned out to be very convenient, as after my x-ray, I was told I needed to go see my doctor right away.
• I went downstairs and after a very short wait, my family doctor saw me. She described my x-ray as showing atypical pneumonia, as it wasn’t exactly what they would expect to see. She also ordered blood work and spoke to an infectious disease specialist, as she considered Valley Fever an option – a fungal infection that I could have contracted while in Vegas. She prescribed me an antibiotic, as to treat me for bacterial pneumonia, but advised if I didn’t feel any better in three days or my fever lingered for more than a week, then to go to emergency, as it wouldn’t be pneumonia.
Tuesday, August 11th
• I made my first trip to the U of A emergency, as there was no improvement. I spent the weekend literally in bed. No energy to get out of bed and had severe coughing fits, leaving me gasping for breath. I never worked on Monday.
• After chest x-rays and blood work, the emergency doctor called the internal medicine specialists. They told me that my liver enzymes were high and again, they all agreed my chest x-rays showed atypical pneumonia. But still no answers to what I had.
• I was told to get more blood work the following Monday, and then see the internal specialist on Tuesday as a follow-up. If I worsened or experienced new symptoms, to return to emergency.
• I was sent home.
• I was also officially pulled from the Capital City Burlesque show that was on Saturday, August 15th at the Citadel. Which I was deeply saddened by, but knew it was what needed to be done.
Wednesday, August 12th
• I couldn’t even get out of bed this day. It was my worst day yet. I called my dad just after midnight to take me to emergency. Previously, I would be asleep at 8pm and sleep until the next morning. But this night, I woke after only a few hours of sleep. I took it as a sign to return.
Thursday, August 13th
• Technically it was now Thursday. I did the same routine in emergency. Blood work. Chest x-ray. “We don’t know what’s wrong.” This time though I was transferred to the pulmonary emerg section and saw Dr. W, the lung specialist on call. He ordered a ton of tests for infections and viruses and autoimmune diseases and a chest CT scan. The CT scan showed what he thought were signs of a fungal infection, however he wouldn’t expect someone with a normal immune system to be affected this significantly with a fungal infection. But my blood work for Valley Fever had come back negative. He ordered a brochoscopy for the next Monday to do more testing. He said they would use a camera to look around and take flecks of my lung for testing.
• I was sent home until the bronchosopy. At this point I was given the choice. He said he could request I be admitted, but there would be no treatment yet, and suggested I would be more comfortable at home.
Monday, August 17th
• Nick has already planned to be in Sylvan Lake with Arrine for the weekend, so I was able to stay bed ridden. My schedule was have a major coughing fit between 7-9pm. Then the fever would set in with chills and then sweats. I would sleep until 9am the next morning, awake to a coughing fit. Then sleep again until noon or 1pm. Then I would mentally prepare to get up and use the washroom, as I knew getting up would send me into another coughing fit, leaving me gasping for air. Then I would lie in bed for the afternoon. Awake, but little interest in doing anything. Eat some supper and go to sleep.
• Dad took me to the U of A for the bronchoscopy. Dr. W’s colleague was always going to do the procedure. It would involve me being consciously sedated, meaning “most people don’t remember anything, but you are technically awake for it”. Well, I remember the end of it. I was told before they started that they chose not to do the biopsy flecks, as they wouldn’t know if they were taking good lung or bad lung, and the risk of bleeding, infection and collapsed lung did not outweigh the chance of a sample they could use. They did explain that they would send down a saline flush into my lungs, and the solution they brought back up would be tested. They put a tube down my throat to open the airways and provide them access to my lungs. I don’t remember that part, but I do remember becoming aware at the end and starting to cough and choke as I “awoke” to what felt like a muzzle gagging me. “Hang on! We are almost done,” are the words I heard frantically. Then I don’t know if it scared me enough to stop awareness, or they gave me something more, as I next remember becoming alert in the recovery area, groggy and with a very sore throat. They then moved me to the next holding area to check my vital signs. My oxygen levels would not regain themselves on their own. They would give me oxygen, my stats would be good, but once they took me off, I dropped. We did this process a few times until they sent me home. The plan was to go to Dr. W’s clinic on Friday for the results. I was told that they still may be preliminary at that point.
Wednesday, August 19th
• I was worsening. I could no longer stand to shower and would bathe instead. I called Dr. W’s office to explain I was so fatigued and asked if we could wait for me to come in once all the test results were in. Instead of making the trip for just preliminary results. That is how little energy I had. I was told that all the results were already in and there was a cancellation for the next day. I took the appointment for Thursday.
Thursday, August 20th
• I had the lovely offer from nurse friend Rachelle to take me to my appointment, and it was one of the best offers I accepted through this. Dr. W explained that the results came back with no answers. It didn’t show an infection or anything fungal. Plus without the biopsy, there was lacking information from that. He explained that I could just have a lung infection, and it was improving on my own, not allowing there to be enough infection left to show in the saline culture. His plan was for me to go get another chest x-ray. If it showed signs of improvement – great! I was getting better, even though they never knew why. If it didn’t show signs of improvement, then he would order a more invasive lung biopsy, but explained it could take weeks to get in to see a thoracic surgeon. ‘GIVE HER SOME DRUGS!!!” Rachelle politely suggested. She asked why I wasn’t at least being given anything to reduce the inflammation to give me relief from the shortness of breath and coughing. His concern was giving me mediation without a diagnosis. Somewhere along this line of discussion I broke down. I shared how I couldn’t wait weeks for this surgery – I had zero quality of life, unable to even feed or bathe myself anymore. I couldn’t remain bed ridden. Dr. W decided to take my oxygen levels. Oh! 83-85%. They don’t want you to be lower than 92%, I have been told. He then ordered an ABG (arterial blood gas) test, where they take the blood straight from your wrist for a more accurate reading. This confirmed the low oxygen, as well as low CO2 levels. He looked at me and said, “I am calling the ambulance. You are going straight to the hospital.” Rachelle hugged me and we had a little cry. Then we waited for the paramedics while I took not one, but two, of the juice boxes they offered me.
• I asked for the sirens, but no deal. They said you don’t want the sirens on anyway. Which is true in that regard. Rachelle followed us to the U of A and stopped at my place and packed a bag for me, because she is smart that way. I had to wait again at emergency, but this time I had the company of my paramedics. And then I was brought straight to the pulmonary emergency section, instead of having to go through seeing the “regular” emerg doc first. I was all settled in by just after 8pm. My appointment with Dr. W was at 2pm.
• I had a lovely lung emerg doc who told me he was going to fight to actually get me admitted this time, and he succeeded. He also succeeded in getting those drugs that Rachelle knew I needed, but it wasn’t until after my routine of crazy coughing fit and fever with chills and sweats. But afterwards I was given my first dose of steroids, and then I ate the best tomato soup and white grape popsicle I have ever had in my life.
• Later that night, I was transferred up to the 5th floor to the pulmonary unit. And I slept.
Friday, August 21st
• I did not awake with a major coughing fit for the first time in at least 10 days. Drugs??
• I think this was the first day that I saw docs who mentioned any sort of idea of what was going on. I saw both lung specialists and rheumatologists, as they were suspicious of an autoimmune disease. Vasculitis – inflammation of the blood vessels. And the questions were everywhere from tuberculosis exposure to chemicals, hot tubs, birds, family history and exotic travel. I have been told I was tested for every infection, virus and fungus possible. Lab work was sent away for autoimmune diseases. Anything they could think of, they tested for.
• And then I was told that I would be sent to the Royal Alexandria hospital for the lung biopsy, as that’s where the thoracic surgeons work out of. So the waiting game began…
• As this point, I am able to get up and use the washroom with oxygen on. Otherwise I was still confined to my bed.
Saturday, August 22nd
• I was transferred to the Royal Alex to await surgery around 4pm. There was no set time and I was told that a gunshot wound would take priority over me. Well, that made sense.
• I wasn’t allowed to eat or drink after 1pm that day, incase they performed the surgery that night. And once I was there, I was told that the doctors sometimes give 5 minutes notice, so still no food or drink for me. By 9pm I was feeling quite ill and was then told, “Oh! Yes, you can eat up until midnight.” So I ate what Nick and Arrine had brought me right after I was transferred. I ate and ate and ate.
Sunday, August 23rd
• Timing was on my side, and by 9am I was on my way to surgery. I was very emotional. It was all explained to me. They would make three incisions on my left s ide, one below my armpit and two under my breast. They would gain access to my lungs with tools through these holes. And when I woke up, I would also have a chest tube to drain the fluid and blood that would have collected during the surgery. The surgeon would remove two samples of lung – good and bad parts, through the holes cut through my side. My surgeon was late due to a marathon downtown, which allowed me to go pee again, as I was so nervous. I asked if they would listen to music, and they said that they surgeon gets to pick, but it wouldn’t be gangsta rap – that was a different surgeon who preferred that genre.
• Surgery lasted about an hour and I remember waking back in my room that I was sharing with three other patients. Then I slept for the most of the day. I remember becoming more alert around 9pm and that’s when the pain was more noticeable and the morphine started. I could hardly shift in the bed as the chest tube was so constraining. I remember being slouched over at an angle, but couldn’t even move myself. I detest morphine. I hated the way it made me feel like the bed was enveloping me. I hated the way it made my thoughts slow. I hated the paranoia that set in – I kept falling asleep and then dreaming/hallucinating that I was forgetting how to breath, which would make me gasp and wake up, causing even more pain in my side. My nurse played into it well and told me, “Here, we will put the O2 monitor on you. So if you forget to sleep, the machine will start beeping and wake you up.” It worked and I could sleep. I dreamt of the red heart confetti that my mom loved to include in greeting cards, floating all around me.
Monday, August 24th
• I awoke in extreme discomfort. I was in pain, nauseous and needed to use the loo. I called for my nurse but she wasn’t available. I won’t go into details, but in the end, I was incorrectly given a double dose of morphine. The feeling in my head that I loathed returned in greater force.
• The surgeon did stop by and tell me that the surgery went well and there were no concerns. I liked him.
• Around 10am I was told my chest tube was coming out. The surgeon’s assistant actually said the double dose of pain killers was probably quite appropriately timed, as it would help with the removal. She did it right there in my bed. During the surgery, the surgeon left a suture in that spot so it just needed to be “tightened” after the chest tube was removed. The tube outside of me was about ¾” diameter, and it drained into a white plastic, tall rectangular container with indications of volume levels. I assumed that the tube would have to taper off once it was inside of me, and asked. I was told it did a little bit, but not much. I remember trying to shift my torso up to straighten myself, and felt a super sharp pain in the back of my shoulder, so bad it took my breath away and I couldn’t move. She replied, “Oh yes, that’s where you feel the pain when the tube hits your diaphragm.” And then she further explained how the tube went all the way up to near my collar bone – to the very top of my lungs. That’s when I told her I didn’t want to know anymore. I just assumed it was a little tube, maybe a few inches into my side, kinda draining me from the bottom of my lungs. But then she got excited and wanted to tell me more. And I finally gave in. She said she would show me after she took it out, and I ended up actually taking a picture of it too. Turns out the tube was about 18” long and curved up, like if you were drawing a line from your side, then across the bottom of our lung and straight up your breast bone to your collar. Made of white silicon. We had to practice her taking it out, because if I breathed while she took it out, air would go back into my lungs and I would need a chest tube all over again. So we had a few mock trials and then it was time. 1-2-3-Hold Your Breath. And then I felt that tube drawn out my side. And then some tugging while she tightened the suture, she dressed it and it was done. And the pain was substantially less. Well, then I knew why – I had a huge tube constricting me from the inside! She also explained the other incisions that I had too. Because they were more of a straight cut, versus a hole for the chest tube, they could just use steristips to hold the wound together to heal. There are no stitches in the other three holes, just these super strong pieces of “tape” holding me together. I was told they would naturally come off as I heal.
• My dad and Anth showed up right before lunch and I got to spend the day with them high. Well, they weren’t high. But I sure was. Dad went and got us Dadeo for lunch. Anth and I caught up and it was so great to see him. I probably talked slow and my head rolled back and forth, because now I remember doing that a lot. I had another chest x-ray that afternoon to ensure there were no complications from the surgery or removal of the chest tube and it all looked good. They left mid afternoon to let me rest. I was now waiting to be transferred back to the U of A, once a bed was available for me.
• Rachelle stopped by at supper and took one look at me and said, “You are so high.” This was now an official diagnosis. I think we giggled a lot. Her visit didn’t last that long. 🙂
Tuesday, August 24th
• I woke up feeling almost sobally tober. The day was spent waiting word for a transfer. Shortly after 6pm I was taken back to the U of A and brought directly to the pulmonary unit. The resident lung doc, Dr. A, was very ambitious. And actually kept me up past midnight, always coming in with new questions for his report. And then I slept with a number of coughing fits. I was told that would happen after the surgery, bringing up fluid that had collected from the surgery. I needed to sleep laying upright, otherwise I could not stop coughing.
Wednesday, August 25th
• And this is when the waiting really began. Or wait. Haven’t I been waiting before? The pattern became that the lung docs would come see me each day – “We are waiting for the final pathology report.” Then the rheumatologists would come see me – “We are waiting for the final pathology report.” “It should be today.” All three teams, the lung specialists, rheumatologists and pathologists need to come together with all their charts and reports and tests and make a diagnosis.
• I think this was the day that the rheumatologist that I really liked, Dr. D, mentioned that there may be a possibility of it not being vasculitis. There is another disease called organized pneumonia, where your body thinks you have pneumonia so it’s fighting an infection that really isn’t there. Conveniently, both diseases would initially be treated with the same sort of high dose steroid. So instead of waiting for a diagnosis, they decided to start drug therapy that night.
• The high doses of steroids are to bring down the inflammation in the lungs, and there is a side effect of suppressing your immune system too. However, it is an intense treatment with potential significant side effects, so as I am on the dosages, and followed up in the next coming weeks and months, they would begin to taper down the dosage. Also, then, depending on the actually diagnosis, the second set of drug therapy would begin. If it is vasculitis, an intense immune suppressant would be needed (perhaps for life). I haven’t been given much detail on the next step if it is organized pneumonia.
• When vasulitis was first on the table, I asked about life expectancy and long term expectations. I was told that it all depends on how my body would react to the steroids. Some people only have one serious episode, and then they can live “normally” the rest of their lives while on the immune suppressants. Others don’t see the improvement with the drug therapy and are continually getting quite sick. There is no way to tell yet. But in that moment, when they first were explaining to me the options, I chose to accept it. I chose to accept the worst diagnosis but the best outcome. I would have the drug therapy and my body would take to it. I would learn to create my new normal with this disease and monitor and maintain and live. Because I had to stop living with the unknown.
• I really wanted to try walking. But was told that I needed to be assessed by occupational therapy (OT) first. I could get up and use the washroom while on oxygen, and to and from the shower, but otherwise I was in bed.
Monday, August 31st
• There are no real updates since I was sent back to the U of A, awaiting the diagnosis. Each day they hoped the final pathology report would be ready. Each day it hasn’t happened yet. They want to keep me here until the diagnosis, incase it would change the treatment plan they currently have me on. Also, they need time for OT to assess me and get things ready for me to return home. Because I defo mentally struggled with being home on my own, and weak, and unable to do things like shower on my own safely and cook. Really, just the transition back into real life again.
• But I do make strength progress as the days pass. I am working with physio now. I have a walker and use oxygen when I need it for longer walks. I try to go on two longer walks each day, which is really about 15 minutes total walking with a few breaks. Today I asked for linen to change my bed myself. I want to go home.
• I no longer need to sleep upright and the only real pain I feel any more is from the surgery, needing those holes to heal. I definitely favour my right side now, as the left is still sore. And I just want to be able to do a sit-up.
This post really just tried to capture the chronological events of this journey to date. I know in upcoming days and weeks I will share the more emotional side of this path I am now on. But for now, I just wanted everyone to have the chance to know what has physically been happening with me.
I also don’t want any of this to be interpreted in any way as me judging or questioning medical decisions that were made on my behalf, early on in this illness. I have tried to just explain what happened, and I am not able to give any more depth into the background behind the decisions that were made for me.
Ok, so that took me three days to write. I hope to update you all soon with a diagnosis and plan going forward. I am also forever grateful for your prayers and kind thoughts and well wishes.
There is power in prayer and our mind body soul connection.