As I’m writing this post, the world is in the grips of the COVID-19 pandemic. At this time last year, I was still in the hospital, just barely off a ventilator myself. That makes this reflection a little more jarring.
My last post as about this journey was the day my breathing tube was removed. That was not the end of my medical journey and recovery, not by a long shot. I was downgraded from the ICU to a “medicine” unit, but I was a long way from being “well”. Being semi-comatose and bedridden for over a month took a massive toll on my body. I could not yet move my legs, I was still suffering from pneumonia and who know what other infections, and many of my bodily systems weren’t working yet.
One of the first challenges I had was actually before I even left the ICU. They wanted me to sit upright in a chair. Since I couldn’t move my legs at all, they had to use a hoist to get me from the bed to the chair. Minutes after being moved to a chair, I thought I felt rather dizzy and light-headed. They checked my blood pressure and I was pumping at a blood pressure of about 70/30! Normal is about 120/80. They were surprised I hadn’t passed out!
Someone tried to explain to me the relationship between blood pressure and leg muscles. Apparently, the capillaries in the legs contract when you sit up or stand to keep the blood from pooling in your legs. That keeps your blood pressure up. With my lower body completely atrophied, that functionality was gone and my blood pressure would drop like a stone.
Over the weeks that followed, the medical team tried a few things to get my blood pressure up: I was being given fluid bolus therapy (FBT) which is where a fluid is pumped into my bloodstream by an IV. I was also given some pills, and some sort of blood product who’s name I don’t remember. Those helped a bit, but my blood pressure was still quite low for many weeks.
Less Intensive Care
On March 4, 2019, I was transferred to the Medicine 5J unit of the Trillium Health Partners: Mississauga Hospital. Instead of one nurse per patient, there was usually one nurse per 5 patients during the day, and one nurse to 7-8 at night. This was the arrangement when I had my code blue, so my family was rather concerned I might not receive help if I had a similar incident. My wife stayed with me most nights, which was a big deal because we had an infant . Our infant daughter stayed with her grandmother those nights.
The “J-Wing” of the hospital is a much newer building than the rest of the hospital, probably less than 15 years old. This was a semi-private room, but seemed pretty private. Each patient has their own window and door to the hallway. I just shared the bathroom with neighbour, not that I could use the bathroom. There was a small part of room shared that was separated by a curtain, but all-in-all, seemed pretty private.
I must say though, that it was nice a times. The months leading up to my illness were hectic and stressful. Sometimes I just got to enjoy looking out the window. There was a nice view of some big Lorne Park houses, sometimes pretty snow. Moments to savour being alive at all.
Slowly Getting Untangled
In the ICU, I was connected to about a dozen tubes and wires. Recovering and downgrading to a “normal” hospital unit meant I could start getting untangled from this mess of lines.
In my last post I mentioned that my breathing tube and feeding tube were removed. Over the weeks they started removing more and more of the lines. The wires monitoring my heart were removed, which meant no more painful chest waxing. My “Arc” line or arterial line was removed, which was supposed to monitor my blood pressure, but it often have weird readings whenever I moved my arm. I had an IV in each arm that was removed. My “picc” line that was installed near my right triceps was one of the last ones removed. That one went deep, and I was surprised that several inches of it were in my body. That line cause lots of trouble because it was installed at St. Micheal’s Hospital and many of the nurses at Trillium didn’t know how to deal with it.
A year later, the scars on my body from these lines are pretty small. If you didn’t know what you were looking for, they’d look like freckles, birthmarks, moles, or other blemishes. But I know where they all are. I still see them. I still feel them.
A last line that the couldn’t remove was my catheter. One of the first symptoms of this illness was loss of bladder control, and some suspected it would be one of the last things to come back. We tried several times to operate without the catheter, but it would stay with me for many weeks more.
Trying to get my legs back
One of the benefits of getting out of an ICU was more physiotherapy. I understood pretty early on that I would need to work very hard at this to ever have a chance of walking again. One doctor suggested it could take 3-6 months to walk again, if ever.
But, getting to walking was a long way away. Standing was a long way away. I couldn’t even sit up. My core muscles had completely atrophied too. Sitting up in bed at all was a struggle. Sitting vertical on the side of the bed was all-but impossible.
I was working with the physiotherapy assistants about 15 minutes per day. It wasn’t much, but I was desperate to maximize that time. They taught me exercises, and I repeated them 3-4 times per day. One of the most common exercises I did was just to tense the muscles isotonically; just flexing the muscles at all to try to wake them up. I was willing to try anything to try to wake up the muscles.
I asked my family to bring my “workout clothes.” The prospect of recovering seemed a little less daunting if I could equate it with “training”, like the race training I did for many years.
It seems counter-intuitive, but it was really important that I work on my arm strength. I needed my arms to support my body when sitting, and eventually for bracing during chair transfers and using a walker.
One of the hardest activities they had me do was to sit on a wheelchair. I called it the “torture chair” because that’s what it felt like. I was so hard to hold my body vertical, that after 30 minutes I would be crying and screaming in pain. At one point, a physiotherapst didn’t come back and left me in the chair for almost an hour. I was in AGONY! The nurse assigned to me didn’t know how to get me back in the bed, but thankfully they found someone who could.
I was working very, very hard with my physio, but at times it felt very frustrating that I could only raise my leg about half-an-inch off of the bed. Feeling so weak, feeble, and helpless is a terrible feeling.
After a while, they wanted me to transfer from the bed to the wheelchair without the hoist. It was a procedure called a “sliding board transfer”. The first time they described it to me I thought they were crazy! Essentially, they would lay a flat board between the bed and the chair. I would then I “inch” my way across with my butt resting on the chair between “inches.” Of course, I have no strength in my legs at all, so I would have to do all the “inching” with my arms. And I desperately did not want to fall down! It took a few weeks, but eventually I got the hang of it and it seemed less ridiculous.
Eventually, the physiotherapists had me try to stand. They wheeled me to a wall, and with holding each armpit, they hoisted me up and I stood (with assistance, and holding the wall)! The first day was only about 10 seconds and I was screaming over how difficult it was. A week later was over 1 minute. I was breathing hard, my core and legs were shaking, and I desperately wanted to sit down by the end. A far cry from spending 6 hours running a marathon!
By the end of my stay I had a pretty good set-up: I had a foam roller, resistance bands, small dumbbells, leg weights, a squeeze ball, and some sort of machine I was supposed to blow into. I would try to go through the whole routine 4-5 times a day, because I didn’t have much else to do. It was VERY tiring though. Because I was confined to my bed I needed help getting set up, but thankfully I had lots of friends and family coming by.
Further Medical Challenges
In additional to the low blood pressure, I was still in for a rough ride medically. I was on a battery of pills, probably 30-40 per day. Many of them were antibiotics to kill the lingering pneumonia and other infections I developed in the ICU. There were some vitamins and supplements meant to counter some of the particularly nasty side-effects of the drugs. Some blood thinners because I was bedridden.
The drugs I disliked the most were the steroids. I was on a particularly LARGE dose (>150mg day) of the steroid called cortisone which was supposed to suppress my immune system from causing me further damage. But, like most steroids, they many side effects, particularly in me trying to regain my strength.
A neurology nurse came by often to do assessments. The nurses said they remember me from before my code blue. As I said before, I don’t remember any of that period. Neurologically I was fine in my arms, but I had little or no control of my lower body for quite a while. The double-vision was clearing up thankfully. And it seems my cognitive functions are intact, but even a year later I’m not entirely sure.
Respiratory Therapists came by to see me often too. They were concerned about my lung health after being on a respirator for almost a month. I would often do a test where I blow or suck on a device. Within a few days, they remarked that my lungs seemed stronger than any of theirs, even though the Respiratory Therapists were fully healthy! It was particularly surprising considering what I’d been though!! And to think, mere days before doctors at St. Michael’s Hospital were going to drill a hole in my throat because they thought my lungs didn’t work…
I had to have a mini-colonoscopy while still at the Mississauga Hospital. Apparently it’s quite unusual for someone my age to have to go through that. At least it was easy to set-up because I was already in the hospital! It turned out the low blood pressured caused some parts of my intestine to be damaged, but as my blood pressure recovered, so did that part of my digestive system.
I found I was overheating a lot. The medical team said it was because I was “de-conditioned” and every action, even little things like sitting up or answering the phone would cause me to sweat. I sweat so much sometimes that I got a heat rash. My family got me a little hand-fan from the dollar store. My father-in-law accidentally dropped it, and he felt bad so got me a really nice hand fan from Amazon!
About a week after starting physio, I had a scary evening where I felt a very strong tingling from my chest downwards. You know that feeling when you get pins and needles in your leg or foot? Imagine that times 100!
I was really scared. Was I having a relapse and another auto-immune neurological attack? Was my spine dissolving again? Why was I in so much pain? Would they have to amputate my legs?
One of the nurses that used to work with a lot of neurological patients called it “the quivers.” Apparently, it’s a very good sign. In fact, it’s a bloody miracle! It’s a sign that the nerves were re-growing!
I am familiar how muscles “recruit” and improve in response to exercise. I was unaware that the nervous system can also be encouraged to repair or “grow” in response to exercise. It seems my physiotherapy had encouraged my body to start re-building the nerves that had been damaged and/or abandoned during my time in the ICU.
The regrowth was not guaranteed. It took work. And I am very lucky that it happened.
But, it was hella uncomfortable! An intense pins and needles feeling from my chest and downwards that wouldn’t go away. All day and all night. It didn’t go away for months! And my muscles would twitch randomly as connections were made. And apparently that was contributing to my overheating, because when a connection was completed the brain doesn’t twitch, it just gets hot.
In the months that followed, I had to get used to a different kind of post-workout pain. I was familiar with DOMS (delayed muscle onset soreness) where the body recovers then rebuilds after a workout. But, from now on I would have to feel the DOMS and quivers together in response to muscle recruitment. It led to some interesting sensations sometimes where I felt numb on some areas of my skin, and hyper-sensitive on others, in uneven fashion.
A consequence of the “quivers” was that I reluctantly agreed to a nerve painkiller called Lyrica (pregabalin). They started me on a low dose, which did nothing, so the dosage was raised several times. That was coupled with some medicine to allow me to sleep through the pain.
Dignity and ADL’s
One of the nurses said that heard that being in the hospital is particular difficult for young men, because they feel like they lose their dignity. And there is certainly some indignity to the situation: Strangers poke and prod your body, they see you naked, wash you, and clean up your blood and shit.
You feel so helpless. You are completely unable to do daily living tasks that were so routine. My Occupational Therapists would talk about Activities for Daily Living (ADL’s) and how I needed to try to start doing those things again. I could brush my teeth, but someone would have to bring me a cup of water and bucket to spit in. I couldn’t bathe myself, so sometimes I was given a sponge bath in bed. Later I was wheeled into a shower, and had to try to wash myself while seated. If I dropped an object on the floor or too far out of reach, it was lost until someone could retrieve it for me.
I did get a haircut while in the hospital. I couldn’t leave the hospital, but I found a company called Haircuts on Wheels that comes into hospitals and nursing homes to give haircuts. Their prices are a bit steep, but I didn’t have much choice. It was a nice feeling to get spruced up a bit. Made me feel a little more dignity.
Getting my “Voice” back
For over a month, I couldn’t speak because of the breathing tube, and could only communicate with messy writing on a clipboard. After that month with a breathing tube, my voice was quiet, weak, and hoarse. But, a Speech Language Pathologist assessed me and said I was okay to eat solid foods. She said my voice should be back to normal in a month (spoiler alert, it didn’t get completely better).
I also got my phone back for the first time in a month. It was actually pretty hard to use my phone to begin with. A month of being comatose left me with rather poor dexterity. I had a really hard time using the keyboard. So, writing anything had to be done really slowly.
Of course, I had hundreds of unread emails and notifications. My wife took care of anything important like the bills, so that made me think about how much unimportant stuff litters my inbox and takes my attention.
It’s interesting to flip through the photos of my phone. I take few photos almost every day: Daily life events, my infant daughter, family selfies, food, etc. But there’s a month-long gap in that camera roll. It’s kind of jarring every time I scroll by it. So much changed in that month.
I also took a journal with Evernote almost every day in the hospital. I still have those entries and it’s interesting to look back on what happened and what I was feeling. Some have told me I should make this story into a book. As the memory fades, I will still have those journal entries.
It was interesting to have a means of communicating with voice and internet again. My wife had been managing our finances and informed my work, but to everyone outside of my family, I just disappeared for a month.
I started reaching out to people. One of my first non-family visitors was actually my Financial Advisor. My wife had been in contact with him. But I needed to talk to him about getting funds to pay for my family’s mortgage and bills. And taxes were due in the spring, so I coordinated getting all my tax documents from my phone and sent to my accountant while in the hospital room.
And I started to message friends. I felt lonely, scared, and quite frankly, lucky to be alive. I wondered if anyone cared. They did, they really, REALLY did.
An Outpouring of Support
Presented with one of the scariest, most challenging times of my life, it really helped that I didn’t feel like I was alone. So many friendly faces took time to visit me and support me.
My family came a lot. My mother and wife came prettymuch every day. I have an aunt that lives in Mississauga too and she came with her partner very often too. I have a cousin that visited from Florida. And an aunt and uncle flew in from California to see me and the family. I treasure that they were here for me.
I reached out to some friends in early March about what happened to me. And did they come! A lot of them! I felt so touched. I didn’t know how many people I had cared enough me to come visit me. In particular, I was touched that so many of my friends from the Mississauga running community. In fact, I had to actually actively schedule people so that there wouldn’t be too many at a time. Not pictured, but I was also visited by Amanda, Viet, Sarah, and Blair visited too.
Jestine even wrote this really nice blog post about me.
My wife had a really nice idea to to make some signs my visitors could sign. I really appreciated these signs and referred to them often. It was a nice reminder to have in my room to remind me of the support when I felt low.
This might sound a bit funny, but I feel like I learned a lot from my roommates at this time. I never spoke directly to them, but because of the curtain, I could overhear everything going on in their rooms.
The roommate I had when I first got to 5J was an elderly gentlemen that had contracted meningitis. He slept most of the day. His family came most afternoons from around 4-8pm, which was fine because they always left well before quiet hours. He was able to walk and use the bathroom himself, which made me a little envious.
The roommate I had after that is the reason I will never drink alcohol again, and I think you should consider going dry too. I overheard his discussions with his doctors, and apparently he had a seizure collapsed. They attribute it to his “moderate” alcohol use. He also had serious damage to his liver, kidneys, and other organs. And he wasn’t that old, maybe mid-40’s. After hearing of someone suffering so much, I want nothing to do with that toxic, poisonous ethanol anymore.
The last roommate I had is a more sad story. He was still on a ventilator when he was wheeled in. I was surprised he wasn’t still in the ICU. And he had some sort of device to get his fecal waste which smelled awful. Sometimes I would hear him raspily beg for help, and he wasn’t able to push his call button, so I’d ask my wife to find a nurse.
Around the time of the last roommate, I felt like I didn’t belong in the Medicine 5J unit anymore, so I was looking forward to whatever was next.
Going to Rehab
Once I was at a point that I was considered “medically stable”, the medical team said it was time to transfer me to a rehabilitation facility. When you hear “rehab”, you think of celebrities that have drug or alcohol problems. But this is a medical unit or building that is specifically focused on physiotherapy and occupational therapy, not medicine.
Rehab beds are apparently really hard to come by because people can stay in rehab for so long; potentially months or years. Rehab units used to be really common in hospitals, but off-site rehab facilities are becoming increasingly common so that hospital beds can be used for acute patients that need constant access to advanced hospital facilities.
There was talk about sending me to one of many non-hospital rehab facilities in Toronto. I wasn’t fond of that idea because it would mean I would be further from my family again. Some of my medical team insisted I should be in a hospital because I specifically needed neurological rehab.
There are two rehab units at the Mississauga Hospital. Staying would have been my first choice. But apparently I had to go wherever there was space because more critical patients needed my bed.
It turns out a space became available at the Credit Valley Hospital, which is also in Mississauga. They have a rehab unit called 1E. I don’t know much about that hospital, but at least it wouldn’t be too far from my family.
On March 22, I was transferred by an ambulance from the Mississauga Hospital to the Credit Valley Hospital. The paramedics taking me asked if I could stand, and because I couldn’t they slid me from my bed to their stretcher.
I had a nice send-off from Bradley and Patrizia, the physiotherapists I had worked with the most. I went back to see them several months later to thank them and show them how much I had improved.
I would spend almost 2 months in rehab. That is another story, full of lots of ups and downs too.