Rest is something you don't get much in a hospital anyway. Because when I finally fell asleep around 4am, it wasn't for long. At 6pm at that Wednesday August the 31st, the first nurse shift came by to administer me my daily medicine. An hour later the breakfast crew came by. I sometimes hear people complain about hospital food, but the food here was (or at least looked) incredible. They rolled in an entire buffet you could choose from. I tried a delicious looking piece of bread and a boiled egg. Of course I had forgotten about my disability to eat and taste.
I got SO incredibly frustrated and only took one bite. This is the first time I noticed what being under observation meant, because as soon as the clean up crew noticed my unfinished food, the next person I saw was a dietitian. Which turned out well for me, because she ordered special bottles of calorie rich fluid that were very sweet. Since extreme sweetness was the only thing I could taste, and fluid was about the only thing I could handle, this was very welcome.
The p&n was now halfway up my legs and arms. My face had no expression anymore. I couldn't close my eyes completely. I could open my mouth and somewhat talk, but that was it. I had to use a walker or a wheelchair to get to the toilet, where the next drama would start (more about that soon). I couldn't control my swallowing anymore. I was warned about that, because it's a common GBS symptom. And surely right away I was choking on my fluid. I recovered quickly, but it can cause pneumonia, which can have devastating results in combination with GBS (if I had GBS, which was still to be determined.)
Right after my fluid breakfast someone came by to take another couple of vials of my blood (one day apparently doesn't make a difference, but two do?) Around 10am a nurse came by with a wheelchair to bring me to the imaging area of the hospital for an MRI scan of my head. The guy who was going to scan my head was a very cheerful, tall guy. He tried to have a conversation with me, but it turned out quite one-sided since I couldn't talk much. I do remember he had to help me on the bed that eventually goes in to the scanner. When he had to do that he said: "You're younger than me!". I still don't know what he meant by that.... I wasn't there for fun.
Thursday, December 28, 2017
Hospital day 1
Although it was still morning when the ambulance picked me up, so much time had gone by with the examinations that it was almost evening when I was finally in my hospital bed. The first visiting hours I had there were between 7pm and 8pm that very night. My mother in law, my girlfriend and my son came to see me.
Just as they were visiting the female neurologist, who I will call Mary, came visiting me in my room. She said: "My doubts are too strong, I'm going to put you through the entire GBS test procedure, starting tomorrow". I was so relieved. Of course I didn't want to be diagnosed with GBS, but if I did have it, it was best to have it properly diagnosed as soon as possible.
Mary explained to me that the GBS test procedure mainly consisted from excluding every possible other cause that could give the same symptoms, finally doing a epidural (or lumbar puncture) where GBS should be clearly visible. I wasn't looking forward to all these examinations, but something had to happen.
I had a very restless night, because the elderly woman next to me went for a smoke early in the evening, fell from her walker, broke her arm, but since she had suffered a stroke and was given blood thinners, they couldn't operate her. So she was screaming and moaning from pain all night. Incredibly sad, but not very well for my rest.
Just as they were visiting the female neurologist, who I will call Mary, came visiting me in my room. She said: "My doubts are too strong, I'm going to put you through the entire GBS test procedure, starting tomorrow". I was so relieved. Of course I didn't want to be diagnosed with GBS, but if I did have it, it was best to have it properly diagnosed as soon as possible.
Mary explained to me that the GBS test procedure mainly consisted from excluding every possible other cause that could give the same symptoms, finally doing a epidural (or lumbar puncture) where GBS should be clearly visible. I wasn't looking forward to all these examinations, but something had to happen.
I had a very restless night, because the elderly woman next to me went for a smoke early in the evening, fell from her walker, broke her arm, but since she had suffered a stroke and was given blood thinners, they couldn't operate her. So she was screaming and moaning from pain all night. Incredibly sad, but not very well for my rest.
ER Episode 2 Part 3
Coincidentally I was put in to the same cubicle again and the entire episode started all over again. Sure enough, after a while the same ER doctor that 'treated' me the day before came in to my cubicle speaking the legendary words: "Here you are again!". After which we went trough the exact same procedures again, except for the blood examination, because they said nothing would have changed in a day. Made sense.
The ER youngster was clueless, I could tell from his eyes. He asked my girlfriend what she thought was wrong and she told him everything, from the walking to the talking, from the pins and needles to my eyes. She got so frustrated she told him: "Can't you tell from the way he walks and talks!", his reply was: "I don't know what his normal way of walking and talking is". At which she shouted: "WELL NOT LIKE THIS!". He left.
He came back with a neurologist. Female this time, a lot younger than Bob the day before, but a bit older and clearly more experienced than the young ER doctor. She also went through all the neurological tests I had been through three times already, and she also didn't think there was something wrong with me, surely not GBS. Then she tested the reflexes in my feet. There were none. This was the moment she started to have doubts, because clearly that wasn't stress related and I learned later that missing reflexes are the first sign of GBS.
She literally told me: "I'm far from convinced, but I'm going to admit you to the hospital for one night, for observation". Although being in the hospital is the last thing I (or anyone else I imagine) wanted, I felt relieved that I was being looked after for a while. I had to wait for two more hours after which I was picked up by yet another nurse who took me to the neurological ward, in a room with another guy from my age and an elderly woman.
The ER youngster was clueless, I could tell from his eyes. He asked my girlfriend what she thought was wrong and she told him everything, from the walking to the talking, from the pins and needles to my eyes. She got so frustrated she told him: "Can't you tell from the way he walks and talks!", his reply was: "I don't know what his normal way of walking and talking is". At which she shouted: "WELL NOT LIKE THIS!". He left.
He came back with a neurologist. Female this time, a lot younger than Bob the day before, but a bit older and clearly more experienced than the young ER doctor. She also went through all the neurological tests I had been through three times already, and she also didn't think there was something wrong with me, surely not GBS. Then she tested the reflexes in my feet. There were none. This was the moment she started to have doubts, because clearly that wasn't stress related and I learned later that missing reflexes are the first sign of GBS.
She literally told me: "I'm far from convinced, but I'm going to admit you to the hospital for one night, for observation". Although being in the hospital is the last thing I (or anyone else I imagine) wanted, I felt relieved that I was being looked after for a while. I had to wait for two more hours after which I was picked up by yet another nurse who took me to the neurological ward, in a room with another guy from my age and an elderly woman.
ER Episode 2 Part 2
After about 15 minutes, an ambulance indeed stopped in front of our house. Three paramedics got out (when they DO come, they come with an army apparently). Two middle-aged male paramedics and a younger female one. One of the two guys was so impressive that my son hid under the table. The guy was so tall he almost hit the ceiling. Combine that with his massive stature and his long beard, he sure knew how to make an entrance, but he was so sweet. He reminded me very much of Harry Potter's Hagrid.
All the interviews started again, they rang to the ER and after a long conversation (which felt like a negotiation) they agreed to take me in to the hospital. Now my house isn't really fit to ride a stretcher with someone on through, so they decided I had to walk. I cringed and told them I can't. "Sure you can" they said as they helped me up. Hagrid then turned around, put his hands backwards and told me to hold his hands. This way we moved step by step towards the ambulance, which was waiting in front of my house, just like the entire neighborhood. You never see them, but put an ambulance in to the equation and it's like new year's eve. But I guess that is understandable.
Then I had to climb in to the ambulance, which I did with all the strength I had left in my arms. Finally I was put on to the stretcher and the girl-paramedic strapped me in. Hagrid started the ambulance and the other male asked me "Do you like music René?" I replied "I sure do" and we had a mobile dance party on the road to the hospital. Disregarding my current situation that was the most fun I had had in ages. After a trip that (knowing the city) took way longer than you would expected, and after the girl checked my sugar levels etc, which were all fine, we arrived at the hospital where the three musketeers rolled me in to the familiar ER again.
All the interviews started again, they rang to the ER and after a long conversation (which felt like a negotiation) they agreed to take me in to the hospital. Now my house isn't really fit to ride a stretcher with someone on through, so they decided I had to walk. I cringed and told them I can't. "Sure you can" they said as they helped me up. Hagrid then turned around, put his hands backwards and told me to hold his hands. This way we moved step by step towards the ambulance, which was waiting in front of my house, just like the entire neighborhood. You never see them, but put an ambulance in to the equation and it's like new year's eve. But I guess that is understandable.
Then I had to climb in to the ambulance, which I did with all the strength I had left in my arms. Finally I was put on to the stretcher and the girl-paramedic strapped me in. Hagrid started the ambulance and the other male asked me "Do you like music René?" I replied "I sure do" and we had a mobile dance party on the road to the hospital. Disregarding my current situation that was the most fun I had had in ages. After a trip that (knowing the city) took way longer than you would expected, and after the girl checked my sugar levels etc, which were all fine, we arrived at the hospital where the three musketeers rolled me in to the familiar ER again.
ER Episode 2
Because, when I woke up the next day after having slept on the couch again (I still couldn't walk, let alone up the stairs) I had lost the control over the other side of my mouth as well. At that moment I hardly couldn't say anything that was understandable anymore. I couldn't eat well anymore, because apparently I had lost the use of my cheek muscles. When you chew, you obviously do this with your teeth, but you might not realize that your cheeks constantly push the food back to the middle so they can be processed again. If that doesn't work, your food gets 'stuck' in your cheeks after a couple of times chewing. I had to manually push my cheeks to push the food back to the middle.
But even worse, I lost my taste! The only thing I could still taste was something that was very very sweet. Sour, salt and bitter didn't get analyzed by my tongue, or brain, whichever. Last but not least I couldn't even get as far as to put my hands on the table to stand up. And the panic returned.
My girlfriend was still asleep when I woke up that Tuesday August 30th, but when she did and saw (and heard) me, I could see the panic in her eyes. Now as I told you, she is one that is not scared easily, so her panic increased my panic too. She skipped the doctor's office and went straight on to call the ER, where I had been the day before. The ER told her that we should come in again. As well as I could I tried to interrupt her to tell her there was no way I could make it there on my own. The ER nurse told us to call an ambulance.
My girlfriend did just that. She spent the next half hour trying to convince the dispatch room that this was urgent enough to send an ambulance. Apparently as long as you're talking (ish) and breathing it is hard to get an ambulance here. I somewhat can understand that they have to filter the calls, but in my case (turned out later) time was very much of the essence. Finally they agreed to send an ambulance.
But even worse, I lost my taste! The only thing I could still taste was something that was very very sweet. Sour, salt and bitter didn't get analyzed by my tongue, or brain, whichever. Last but not least I couldn't even get as far as to put my hands on the table to stand up. And the panic returned.
My girlfriend was still asleep when I woke up that Tuesday August 30th, but when she did and saw (and heard) me, I could see the panic in her eyes. Now as I told you, she is one that is not scared easily, so her panic increased my panic too. She skipped the doctor's office and went straight on to call the ER, where I had been the day before. The ER told her that we should come in again. As well as I could I tried to interrupt her to tell her there was no way I could make it there on my own. The ER nurse told us to call an ambulance.
My girlfriend did just that. She spent the next half hour trying to convince the dispatch room that this was urgent enough to send an ambulance. Apparently as long as you're talking (ish) and breathing it is hard to get an ambulance here. I somewhat can understand that they have to filter the calls, but in my case (turned out later) time was very much of the essence. Finally they agreed to send an ambulance.
ER Episode 1 Part 4
He left for a while and came back with the results of my blood examination, which turned out fine. I had expected this (although it was a revelation to hear my cholesterol was fine) since that still meant GBS was an option, but it didn't help my case at that very moment. For all I know they still thought it was stress related. He then left again for a long time.
Finally he returned with Bob, the neurologist. Apart from my own name, I'm not using any real names in my story, whether my experience with them is positive or negative. I don't know if they would appreciate that so I will use fictional names.
Neurologist Bob is a male well in his 50's. Where I was happy with a young ER doctor, I was even happier with a very experienced neurologist. It is such a specialized area that I prefer someone who has been doing it so long that you would expect that he has at least seen one or more GBS patients, I finally caught a break, or so I thought.
Bob did the same neurological tests with me, but extended them a little more. Asked me the same questions. Listened to my GBS fear and then left.
After more than an hour he returned to me. He said "I don't think there is anything wrong with you! I think you went through so much stress that this is the way your body is reacting. You need rest and nothing more!"
Now I KNEW that wasn't true, but this was exactly what my mind wanted to hear at that moment. So I simply accepted that diagnose, and let them send me home without any argument.
When I came home, my girlfriend nearly chopped my head off in anger, because she knew this wasn't true. And it didn't take very long for her to be proven right....
Finally he returned with Bob, the neurologist. Apart from my own name, I'm not using any real names in my story, whether my experience with them is positive or negative. I don't know if they would appreciate that so I will use fictional names.
Neurologist Bob is a male well in his 50's. Where I was happy with a young ER doctor, I was even happier with a very experienced neurologist. It is such a specialized area that I prefer someone who has been doing it so long that you would expect that he has at least seen one or more GBS patients, I finally caught a break, or so I thought.
Bob did the same neurological tests with me, but extended them a little more. Asked me the same questions. Listened to my GBS fear and then left.
After more than an hour he returned to me. He said "I don't think there is anything wrong with you! I think you went through so much stress that this is the way your body is reacting. You need rest and nothing more!"
Now I KNEW that wasn't true, but this was exactly what my mind wanted to hear at that moment. So I simply accepted that diagnose, and let them send me home without any argument.
When I came home, my girlfriend nearly chopped my head off in anger, because she knew this wasn't true. And it didn't take very long for her to be proven right....
ER Episode 1 Part 3
Within 20 minutes the big doors opened and another nurse came to pick me up. Since I was in a rental wheelchair that you can't operate while sitting in it, she had to push me to the ER room, where I was assigned to a cubicle surrounded by curtains. I laid down in a bed and waited for everything that was going to happen. Because there were only curtains around the 8 cubicles that were in there, I could hear everything that was happening, which doesn't actually put your mind at ease I can tell you.
After a while another nurse came to take my blood. Finally I was getting my blood work done. But I had also read that GBS can not be determined from a blood examination. However it would rule out all possible other things.
Then for a long time nothing happened in my cubicle. Finally the ER doctor came to me. A young fellow who couldn't have been out of school for long. Now I don't mind that because in my personal experience they are more determined and focused than the doctors who have been doing this for decades. He started asking me questions.
He then did some neurological tests with me, I had to stand up as well as I could, stand on my toes (which I obviously couldn't), lay down and push him away with my feet (which I could surprisingly well). And I told him everything I was suffering from.
Finally he looked in to my eyes and said "You are afraid aren't you?", I replied "I'm terrified". He asked me why and I told him that I feared to be suffering from GBS. I could tell from his eyes that he took my concern serious, but also that he didn't think I was right. Being such a rare disease I can't blame him, but I was hoping very much they would act as if it was a possibility anyway.
After a while another nurse came to take my blood. Finally I was getting my blood work done. But I had also read that GBS can not be determined from a blood examination. However it would rule out all possible other things.
Then for a long time nothing happened in my cubicle. Finally the ER doctor came to me. A young fellow who couldn't have been out of school for long. Now I don't mind that because in my personal experience they are more determined and focused than the doctors who have been doing this for decades. He started asking me questions.
He then did some neurological tests with me, I had to stand up as well as I could, stand on my toes (which I obviously couldn't), lay down and push him away with my feet (which I could surprisingly well). And I told him everything I was suffering from.
Finally he looked in to my eyes and said "You are afraid aren't you?", I replied "I'm terrified". He asked me why and I told him that I feared to be suffering from GBS. I could tell from his eyes that he took my concern serious, but also that he didn't think I was right. Being such a rare disease I can't blame him, but I was hoping very much they would act as if it was a possibility anyway.
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