A Less Intensive Recovery Period

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.

My semi-permanent position in my bed in the Medicine 5J unit of the Trillium Health Partners: Mississauga Hospital

Feeling “Low”
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.

‘We just set a new record for tubes and wires in one patient.’

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.

That scene from Kill Bill comes to mind.

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.

The “torture chair”, though my wife wanted me to start calling it the “hero chair” instead.

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.

Sliding board? This “technology” is the best you’ve got to get me from bed to wheelchair?

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.

Pills, pills, and more pills. I had cups like this several times each day.

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!

The “Quivers”
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.

My father-in-law gave me an old tablet too which was handy.

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.

Our fussy little baby visiting daddy in the hospital

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.

An aunt and uncle visiting from California, here with my mother, wife, daughter and myself

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.

Roommates
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.

A storyboard my wife made at St. Michael’s Hospital. This board came with me through the different hospitals.

COVID-19 May 2020 Update

When this lockdown started, I thought it would only be about two weeks. That was naive and shortsighted. In the many Asian countries that were hit first, it was 3-5 months before things turned a little more normal.

It’s interesting to go out for groceries and see a contrast between how some people are handling this: Some seem to be listening, going out with masks and gloves and keeping distance. Others, seem to think nothing is wrong, no masks or gloves, loitering about, standing too close, and acting as if nothing is wrong.

Geared up for grocery shopping. This is the new normal apparently.

Obviously, a lot of people want this pandemic to end sooner than later. I worry about what that will look like. I worry people will rush out and congregate freely too soon, and that we may have another shutdown. And I worry about the rush to activity, and the relentless marketing that will follow to get some industries back up again. There will probably be a big FOMO (fear of missing out) narrative to entice people to throw caution aside and go to restaurants, concerts, sporting events and/or travel as much as possible. I foresee celebrities (and pseudo-celebrities) bragging about some amazing place or experience trying to entice people back out. The siren-like calls will be loud, brash, and aggressive. It’ll be quite a contrast to the 6+ weeks of isolation and family time.

My family has gotten into a routine. After breakfast we go for a walk every day. I’ve been tracking the walking distance with my Garmin and uploading the results to Garmin Connect and Strava. To my dismay, Strava doesn’t count “walks” towards mileage. My Garmin Connect says we’re up around 55km for the month!

We binge watched through the latest episodes of Terrace House. Netflix is great! Subtitles, not so much.

Being home non-stop provides some interesting challenges. I am about a month overdue for a haircut, so I have probably the biggest mess of hair I’ve ever had. And I stopped shaving several weeks ago. There’s nowhere to go, so why shave? I have a pretty narly neckbeard going, but my wife says she doesn’t mind.

It has been really nice having this extended time with the family. My wife, toddler, daughter and I are quite the quaran-team! We do sleep in a bit, and sometimes take midday naps with the toddler. We quite enjoy each others’ company and find we work well together.

My coronabingo card! What’s on yours?

The studio where we were studying Tai Chi has gone to online teaching only for the time being. Fortunately, it’s all free, and I invite you to try a Qi Gong class or something! It’s not the same as in person, especially with the toddler running around, but it’s better than nothing.

We are continuing to battle with grocery store pickups. Some locations are getting better with organization and completeness, and we plan to go back to those. I am VERY honest when we get follow-up emails asking “how did we do?”

I’m cooking a lot, and my wife is baking too. I even posted a couple of recipes We have the time to cook (and do the ensuing dishes) so making complete meals mostly from scratch is a privilege we can enjoy for now.

We have continued playing Overcooked 2 on the Nintendo Switch and have finished all the levels in the main game and 3 of the DLC expansions. We are currently trying to get bonuses and higher scores in all the levels.

I have found that I can only really do things I need or want to do after we put the baby to bed. If I’m lucky, that means I can start paying bills, cooking for the next day, and maybe even a leisure activity or two starting around 9pm. Often it’s closer to 10:30 or 11 by the time I can slip out of the bedroom to do my own thing. And that means I’m often hitting the hay closer to 2 or 3am.

I have been playing the newest Pokemon game, Pokemon Shield. It takes me back to each of the 8 generations of Pokemon games I’ve been playing since I was 10-years-old. I finished the game, and am a little sad that the adventure is over. It’s probably for the best because I really shouldn’t be staying up until 2am playing a video game.

My trainer card from Pokemon Shield

And I’ve been painting a lot of Warhammer models during this lockdown. I find it quite fulfilling. And I think I’m getting better. It is rather time-consuming, and I always wish I had more time.

In the last post, I said I had started a little garden in a greenhouse. It was doing well for a few weeks, but has since died. I think there was some mould on the tomato seeds, and it spread amongst all the seedlings and killed them all. I supposed if I had transplanted them outside they would have survived, but it has been unusually cold for February.

It doesn’t look like I’ll be going back to work any time soon. I started the back-to-work process in January, but considering the state of the world right now, I’m pretty luck still be on Long-Term Disability. I get the feeling that the HR department at my workplace has bigger things to worry about that processing my return to work documents. And, it looks like my employer is temporarily layoff 1200 workers. Yeah, I don’t think I’ll be back to work soon.

Wholesome (chalk) graffiti spotted during a walk

I expect next month to be quite different. My wife’s maternity leave is ending and she is already doing some of her teaching work from home. I have started a self-study course, and it is even more intense than I expected. I estimate I will need to study about two hours a day for the twelve-week period. The course is a very good use of my time, but there are things I’d rather do that pour over these thousands of pages of boring codes and regulations for hours each day.

Several-thousand pages I need to get through for this self-study course…

Gluten-free burgers/ Loco Moco

Last time I posted about a meatball recipe that didn’t go quite so well. So, I took another shot at it, but this time to make burgers or meat patties for a loco moco. The last time I posted about loco moco was before I figured out my dietary restrictions, so it had egg and gluten. Not this time! This time, making the burgers from scratch!

The biggest change this time was that I shredded the onion using a cheese grater instead of chopping it. I wound up with very fine onion, but it made my cry worse than ANY time I’ve chopped onions before. It produced the shreds, and something like an onion juice, which I used in the mixture anyways.

This time I also did not use the arrowroot cookies. I used a more conventional gluten-free rice flour.

Ingredients:

  • 1.5 pounds ground beef (grass fed)
  • 1 teaspoon turmeric
  • 1 teaspoon black pepper
  • 1 teaspoon salt
  • 2 teaspoons minced garlic
  • 1 minced garlic
  • 1/3 cup rice flour
  • 2 tablespoons coconut oil

A side-note on the ground beef: My family doesn’t eat red meat often anymore. And we were recommended to have grass-feed beef if possible. You should try grass-fed beef. Prepared correctly, it’s SO much better than the rest. It doesn’t matter if you compare it to AAA or Angus or whatever, grass-fed to me seems tastier and more tender. Not quite as good as Wagyu, but that’s a different story!

Ingredeints for glutenfree, eggless, dairy-free burgers

Preheat oven to 400 degrees Fahrenheit. But, we won’t use the oven until later to “finish” the burgers.

Mix all the ingredients in a bowl. I find doing it by hand works best. You need to work the mix quite a bit to distribute the spices evenly.

Heat the coconut oil in a medium non-stick pan. Work the meat mixture into burgers and press them to the pan. Brown both sides. Remember, you’re just searing the outside; you will cook the burgers in the oven.

The whole pan and burgers into the oven. Here I am checking the temperature of the burgers using a thermometer.

I felt like a real fancy chef when I put THE WHOLE PAN into the oven. No sense transferring it the burgers to a baking pan or something. You just need to be very careful handling the pan because that will be about 400 degrees soon too! Cook until the internal temperature of the burgers is about 160 degrees Fahrenheit. That took about 20 minutes. Remove the pan wearing oven mitts!

Then, I was real fancy chef: There was quite a bit of grease that was produced by the beef. So, I poured that into a small pot and mixed it into the glutenfree powdered gravy. It amped up the gravy significantly!! That gravy is one of the best things I’ve ever cooked!!

The juices from cooking the burgers made a great addition to the gravy!

As you can see from the final product, the onion is essentially invisible. Because it was shredded it did essentially “dissolve” just add flavour and binding to the burgers.

I served it as a loco moco, with the burgers over rice, drowned in gravy, and asparagus on the side. Like I said, the gravy was over-the-top good because of the meat juices.

Loco moco over rice with a side of asparagus

Is it really a loco moco without egg? I guess not, but we run an eggless kitchen now.