Our New Friend Guillain Barré

Back in Kuala Lumpur for the third time in a month and a half we decided to stay at a different place this time around. As much as we’re not fans of KL, it was nice to be back in a familiar place. This time around would be a little different, we had visas to take care of and we were meeting friends from Montreal for the first time on our trip. We spent our first day back running between the Vietnamese and Chinese embassies working out our visas for the next few months of travelling.

The next few days would have us touring the city again with a couple of friends from my work who were travelling in Malaysia for a week. We took an improvised walking tour, visited the national mosque, checked out the Petronas towers (again) and ate some great Indian food.

Five days later we made our way to the airport and hopped on a plane for a short flight to Langkawi Island in northern Malaysia. Here we would meet a third friend from work and her boyfriend; we were slowly building up quite the crew. Cheap drinks in hand (Langkawi is a duty free island), some of the best Indian food we’ve ever eaten and good people with us, we were set for some good times.

Unfortunately for us, everything would change two days into our trip in Langkawi. On our second night, Anne-Julie asked me a few times if I had a cold as my voice was starting to sound nasal. I thought nothing of it, I knew I didn’t have a cold; I figured it would just pass as things usually do when you’re travelling for a long time. That same night, after a few drinks at the local beach bar, we headed home and got ready for bed. While drinking water before going to sleep (best way to prevent a hangover!) I noticed I had trouble swallowing as some of it was coming out of my nose. It was late, so I figured it was nothing a good night’s sleep couldn’t fix... Unfortunately this wasn’t the case.

The next morning my voice was still nasal, any liquid I would try to drink was still coming out of my nose, and my head wasn’t right, while looking quickly from left to right things would move very slowly. Anne-Julie didn’t like the symptoms one bit and said we had to go to the hospital. And so, after a brief call with the insurance and in my best beach outfit of a basketball jersey and swim shorts, we hopped a cab and made our way to the local hospital. After a short 30-minute wait, I was in front of a couple of very young doctors who could at best be described as resident doctors back home. They didn’t have a clue what was wrong with me, so out came the tests. Blood test. ECG. Chest x-ray. CT scan. Then I was told I would need to spend the night. This wasn’t looking good.

On our way to my room, AJ beside me, a nurse behind me, pushing the wheel chair they insist I sit in, the elevator doors open and we see droplets of blood all over the floor. We both look at each other, thinking the same thing… this wasn’t looking good. Once in the room, I’m told I need to fast for the night, as they aren’t sure what further tests I may need to take the next day. A couple of nurses come into the room and try and put an IV into my arm, neither were able. They just kept giggle as they jammed the needle in and out of my hand, saying my veins were too small. Fed up with their incompetence, I told them I didn’t need an IV for one day, I would be fine. I told them they could leave. Twenty minutes later, another nurse, seemingly more senior comes into the room and insists that I get the IV. She manages to get it into my arm, near the crook of my arm. Minutes after she leaves the room, the IV needle in, but without an IV attached to the needle, the whole area under the tape that is used to hold the needle is covered in blood, blood is slowly running down my arm. I don’t think she did it right… I call another nurse into my room and show her the blood; she grabs a paper towel from the sink, wipes up the blood, and then tells me this is normal.

Throughout all this Anne-Julie has headed back home to call the insurance and see what can be done for me. The hospital had told us we couldn’t make outbound calls, we would have to use the payphone, but they couldn’t give us any change or tell us how to call Canada. I was stuck in a bad hospital and I was not allowed to communicate with anyone on the outside. This wasn’t looking good.

AJ came back in the early evening just in time to see a “doctor” for the first time since I was sent through triage. This “doctor” looked just like the nurses, she was barely twenty-five. By the time she walked in and started talking to us in broken English, both AJ and I were sick of dealing with amateurs. Since she never introduced herself, we stopped her and asked her who are you and what do you do here? “Doctor” was the only answer we got. To which we responded, “Really?” All she could tell us was that we would need to wait until the morning to see a specialist. While this news was slightly reassuring, we pressed for a bit more information. We asked what kind of specialist I would see; this is when we were told “specialist of everything”. How nice is that.

It was now late, so AJ headed back home to get back in contact with the insurance and try and get me the hell out of there. Luckily, the insurance also wanted to get me out of this hospital, but it would depend on what the “specialist” would say the next day. They needed to be told that I should be moved.

The horror in this hospital continued all night. At one point my IV line filled with blood so the nurse disconnected the line, dropped it into the bathroom garbage while it drained, and then connected back into my arm without disinfecting anything. When I asked if it could be cleaned, she said it was ‘OK’. I was breaking down at this point, feeling weaker and speaking worse by the hour, but receiving no care. It was no longer only my voice, I was now having trouble walking.

It turned out AJ’s night hadn’t been much better than mine. That night, for the first time during our three and half months of travelling, bedbugs attacked AJ as she slept. Drained from the ordeal we had been through that first day, she turned on the lights, killed as many as she could and then crawled back into bed to try and get a few more hours of sleep before she would come back to my side at the hospital.

Early in the morning AJ was back at my side in the hospital. She had worked with the insurance all night and they were ready for me to get out of there, but we just needed to hear from the “specialist”.

At one point, while we were waiting for this “specialist” to show up, both the Canadian embassy and the insurance called the hospital and asked to speak with the doctor. The only doctor that was around was the one that told me to wait for the specialist. When we asked her to talk to the insurance and tell them what was happening, she said she had no time and didn’t want to talk with anyone. How helpful.

Finally the specialist showed up. He said he wasn’t sure what was wrong with me, he said he would need an MRI and to talk with a neurologist, but his hospital had neither of these. We would need to be transferred! Best news yet.

Nearly two days into this whole ordeal, we had received a few diagnosis’s, all of them unconfirmed and a little off the cuff. The first was Bulbar Palsy, the next was Guillain Barré syndrome (GBS), and then as we waited for news from the insurance and sat in the hallway hoping for them to call us as we couldn’t call them, the stupid little doctor came around and said as she walked by, “I talked to some specialists, I think it’s a brainstem stroke”, and then walked away like there was nothing to it. Had I been strong enough I think I would have ripped her head off, but luckily for her I was getting weaker and weaker by the hour, at this point I was now having trouble walking. When AJ mentioned this to the insurance, they said they couldn’t take the risk; they would have to do a medical evacuation. They were sending a jet with a doctor and two nurses and would be moving me to Bangkok.

Before I would leave the hospital there was one thing I still had to do, tell my parents. The insurance called them and patched me in. The last thing I wanted to do was wake them up at 6am and let them know I was very sick in the hospital with some form of paralysis, but I was terrified and concerned it could get worse while we were still in this hellhole with little to no care; I had to let them know what was going on. That call was difficult to say the least.

On our second day, at 9:15pm two ambulance/taxi drivers showed up and said they would be taking us to the airport. We were expecting doctors to show up, this is not how we thought it would happen. When we asked where I was going, they said Kuala Lumpur, but they could barely speak English. We didn’t want to go, this wasn’t what the plan was, but when we pressed them for more information, they told us they assumed it was KL, but they didn’t really know. Desperate to leave this hospital, we decided to follow along and hope we would somehow make our way to Bangkok. Thirty minutes of crazy ambulance driving later, we arrived on the landing strip of the airport and were told to wait; a plane would be arriving in 20 minutes. Some guy came along and said he needed our passports, we didn’t know who he was, but at this stage we didn’t really have many options. AJ handed them over. This was longest 20 minutes of our lives.

And then the plane arrived. Everything changed. A professional doctor with a suitcase of medicine and two competent nurses jump out and start checking on me. In the first five minutes with them I got better care than I had received in the last two days in Malaysia. They performed an ECG, checked my blood pressure, heart rate, lungs, set me up with an IV in my hand, game me medicine for the plane ride and brought AJ cheesecake to cap it all off! They even gave AJ some meds for the turbulence on the plane; the stuff basically numbed her face and knocked her out in ten minutes. They loaded us into a six seat jet with room for my stretcher and flew us into what I would say is the nicest hospital I have ever seen.

Here things were tough at first. I was still getting worse. My speech had gotten extremely nasal (people could barely understand me), I had trouble making the mouth movements needed to pronounce certain letters or words, my legs had gotten weaker, most of my strength was gone, all my reflexes had stopped working, I had double vision when I looked up or down, I was sensitive to light, I had headaches all day and my palms, fingers and forearms had gone numb. Shit was bad.

Then they started to perform tests. First were the MRI and the nerve test. My first ever nerve test… electrical pads are stuck all over my face and then small shocks are introduced to see how my nerves react. Then on my legs, bigger more painful shocks. It was all necessary, but really unpleasant.

The good news was that the MRI confirmed my brain was ok, no stroke. All signs pointed to Guillain Barré syndrome (GBS), but they would need to perform lumbar puncture (needle into the spine) to test the spinal fluid to confirm the diagnosis.

GBS is a when your body attacks its own nervous system. It’s usually the result of some sort of viral infection where the virus’ DNA looks like your own nerves’ DNA. When the body creates the white blood cells needed to kill the virus, the white blood cells attack both the virus and the nerves that look like the virus.

It made sense that this is what I had; I had always figured the only thing that could stop me was me :)

In the interim, as they worked towards a diagnosis, the doctors quickly got concerned that if I continued to eat and drink on my own I could get something in my lungs as my swallowing was pretty weak. They didn’t want me to develop pneumonia, which could slow down any potential recovery. This meant I needed to have a feeding tube put up my nose. Eating cans of Ensure through my nose, three times a day for three days was awful! 

In the end I had the clinical symptoms of GBS but the lab tests were never conclusive. Never the less, all the doctors agreed it seemed to be of GBS. I was quite lucky with my symptoms as most cases involve complete paralysis of the body, starting with the legs as it works its way up. Including paralysis of the lungs; many patients end up on a respirator.

I was put on meds for five days via IV. The meds I received killed all my white blood cells so that the ones that regenerate don’t remember the initial virus and as a result, they wont attack my nerves. The nerves then just need time to regenerate.

They never know how long it will take to fully recover from GBS. It can go as quickly as it came, or it can take months and even years to fully recover. Only time will tell how long it will take for me to get better, but all initial signs are very positive. I seem to be one of the lucky ones.

As I write this we are nearly two weeks into this whole ordeal. The IVs are out, the five-day medical treatment is over, my feeding tube is out, I’m back on solid foods and I’m walking again. About a quarter of my reflexes have started to come back, albeit very slowly and they are still very weak. My whole left side is weaker than my right side but my endurance is getting better. And, thankfully, I am back to speaking, nearly normally. Overall things are really positive.

Never the less, despite the positive turn this has taken, it still means we need to unfortunately end our trip for now. My insurance wont cover the potentially long term rehab I may need, but they are willing to fly us back to Canada where I can get this care for free. Moreover, they will not cover me if I were to have any sort of relapse during the remainder of our trip. We are definitely disappointed to come back to Canada on these terms, only after four months of travelling, but hopefully this doesn’t mean our travelling is over, for now, its just a road bump!

My insurance, Travel Cuts (RBC), was amazing throughout this whole ordeal. They transferred me to Bangkok hospital, one of the best hospitals in Asia if not the world. They also stayed in constant communication with us making sure we were comfortable with every decision that was being made. The Bangkok Hospital is fantastic, the care and staff is absolutely amazing. My hospital room was nicer than many of the places we had stayed in over the last three and a half months of travelling. The doctors, specialists, nurses and therapists were all incredible. My family was also great, calling every day to make sure all is well and supporting us throughout this entire ordeal. And last but certainly not least, I was so lucky to have Anne-Julie at my side throughout this whole process. She was always fighting for what was best for me. Making sure I was ok and getting better, and always asking the right questions to ensure we understood everything that was happening. She was my guardian angel!

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The above blog was written about 10 days ago when I was still in the hospital in Bangkok. We weren’t ready to post it right away. Here is an update on what has happened recently.

We returned to Canada on October 3^rd. I am already back to 90+% of my old self. My voice and talking are back to normal, my strength and walking are back, headaches and double vision are gone. I only need to work on my endurance (16 days in a hospital can do that to you). As well, I need to wait for all my reflexes to come back, but it’s not something that keeps me from being functional (some people don’t have reflexes – its not the same as your reaction time). Time should help regenerate all this.

I’ve seen a neurologist here in Montreal already, and she says I look fine; I seem to be out of the woods. We are now waiting the 90-day period the insurance requires me to be stable before I can be re-insured without any pre-existing conditions, and then we are off to finish what we started.

Philippines in January anyone?