I was really lucky. And also really unlucky. Everyone wants to hear the story over and over again, so I'll tell it here now and then anyone who is interested can read it... It may also help someone who is in a similar situation or has friends/relatives in a similar situation to better understand.
I can't 100% remember the moment of waking up. I do know, however, that a doctor was sitting next to me who spoke to me in a calming manner. It was scary all the tubes inside me.
What was even more frightening were the dreams and hallucinations I had during this waking phase and the days after. Some of those were horrible nightmares, which luckily I recognized as a dream while dreaming - but the dream didn't stop because of that. That was sometimes really intense. The cause of these dreams is not entirely clear to me. It must have been due to the medication, which is pretty intense. I must have had what is known as a transitory syndrome during the first few days, when the hallucinations were at their worst. Luckily it wasn't so bad that I got aggressive or anything. The worst part was that reality with the dream was "mixed up". For example, I dreamed in a dream that there was a clock hanging on the wall that didn't go to 12 but to 100 and I always had to convert the time in my head. I kept thinking for a few days after the dreams had stopped that the clock in my room really is a 100 hour clock and I had to do the math in my head every time I looked at it. But then I noticed that there was a 12 at the top and that it didn't make any sense. This is super scary that you can't trust your head anymore. Luckily that was only temporary.
when you wake up after a coma like that, you're not squeaky alive like in the movies and you just walk out of the hospital. Not even close. The muscles have completely vanished, the musculoskeletal system is no longer able to carry you. I remember lying in bed and trying to scratch my nose with my left hand - I couldn't. Raising the hand was super exhausting and then I couldn't control it properly. It took me 3 days to get it done. The muscle strength was gone, the muscle coordination is missing.
Unfortunately that's not all. The left leg was so weak that I could not lift it, luckily the right one went with some effort. I've practiced that too and tried to get it right myself. After the coma, I was extremely weak, unable to sit or stand, let alone walk. My left hand was unusable, fortunately my right worked to some extent. I was tired all the time too...
I was constantly coughing because of the stupid tubes in my throat, so I couldn't sleep. I was given strong cough suppressants and sleeping pills to be able to sleep at all. Of course, that was not free of side effects (anxiety included). It was also not possible to sit down because my circulation was not used to it. I got dizzy in no time. That too had to be practiced. My endurance was practically at 0, my resting heart rate was > 120 beats per minute. I.e. the slightest exertion and I was completely out of breath and bathed in sweat.
... you don't notice! Every day, every night is completely the same. I didn't really have the luxury of real sunlight either, always artificial lighting. Day and night were difficult to tell apart. There have been times when I wasn't sure if it was 8am or 8pm on the clock. Even Christmas and New Year's Eve could not be distinguished from the other days, as well as the patients had to be cared for just as on the other days.
It was hard not being able to see my family. My wife was able to visit at first and was one of my most important supports and motivational aids. I couldn't have done it without her. But later a ban on visits was issued due to the Corona Pandemic. For a while my wife was still able to visit every 2 days, but that was no longer possible when I was moved from the intensive care unit to the "Intermediate Care" station (monitoring station).
In order to get my musculoskeletal system moving again, I had a physiotherapy session from time to time. Approx. 30 minutes on average. That was super complicated. We did have to practice sitting up at first, and even then that meant all the tubes for IVs, tube feedings, etc. had to be disconnected before practice could even begin. That alone took at least 10 minutes. And then I sat on the edge of the bed. Moved my left leg with a little help. A few days later and after a lot of left leg training while lying in bed, we were able to practice getting up. Then it went surprisingly well. We continued with the first cautious steps in the hallway and later the first steps. However, I didn't get very far, I was out of breath within a very short time.
That was the worst. That stupid dysphagia caused a delay in the whole process. 'Cause I could've choked again could have inhaled something again that does not belong in the lungs (e.g. food). The doctors wanted to prevent that absolutely. The tracheotomy with the associated tube prevents something from getting "down the wrong throat". Unfortunately, this tube caused me to cough badly and severely disabled me. Getting rid of the swallowing disorder was a bit "diffuse". You just have to swallow, swallow, swallow. You have to practice that. Mostly thickened water, what would not be a problem when it would be sucked into the lungs accidentally - just water.
Unfortunately, these exercises took place only sporadically, if at all. That means I was on my own there. The nurses often took the time to practice swallowing with me. I found that really great. Sacrificing time for me in the overworked situation was super nice.
The swallowing disorder was then diagnosed as "resolved". This is determined with a laryngoscopy - you push an endoscope camera through your nose into your throat and see how the larynx swallows and whether there are residues where there shouldn't be any. But they still didn't want to pull the hoses...
The swallowing disorder had healed, and yet the doctors were unwilling to pull the tubes. I still had the air tube cannula (but hadn't been ventilated for a long time, it was only in there for "safety") and the stomach tube in my throat.
Then the chief doctor of the intensive care unit came to see me and said that you can actually pull the tubes. But I was already in the monitoring station, i.e. the doctor there did not follow this recommendation, but left everything as it was.
This back and forth was nerve-wracking. On Saturday, my cannula could no longer be unblocked (i.e. once the cannula is unblocked, you can breathe and speak normally again "past it"), something was wrong. Then the last swallowing examination was brought forward and (Eureka!) the trachea cannula was pulled out. In the same minute I no longer had the urge to cough and I had significantly more stamina and was able to run much further. That was super liberating. The same tussle was also about the feeding tube. Luckily a doctor was "brave" enough and just pulled the thing out - in the hallway because she was annoyed by the scramble - and Zack my latent nausea was gone.
It was all on Saturday/Sunday, after the hoses were pulled I felt much better and felt out of place. I should have been transferred to a normal hospital bed on Monday to wait for a rehabilitation place. But that was too stupid for me, I can wait at home. Also, I didn't want inpatient rehab, which would mean, especially now in Corona lockdown times, that I wouldn't see my family at all for weeks, maybe months. I couldn't have endured that. In addition, in inpatient rehab you are mainly busy waiting, since of course you cannot train 24/7. Since I am mobile and not dependent on care, outpatient rehab is clearly better for me. I have some training equipment in the basement and can do something for my body there every day. I have the motivation now. So for me outpatient rehab is clearly the better choice. I insisted on being released at that day, especially since the doctors (almost) all agreed that there was nothing wrong with it. The chief physician in pulmonology wanted to do a few more "final examinations", but I skipped those because, apart from the muscle atrophy, I no longer have any complaints. The chief physician of cardiology also said that from a medical point of view there is nothing to be said against dismissal. I was then released and just went home, am now busy with training and muscle building and endurance training, which will also take quite a while.
I've been home for less than a week now, so far I'm fine. Sure, I'm still exhausted, I have to climb the stairs here and get up often - everything is difficult for me, but that's training. I walk a few steps every day, I can do 800m with a break in between now. It gets better every day. At least 2-3 times a week I go to the physiotherapy - there I am challenged in a completely different way and I am shown exercises that I can do at home. I do that at least once a day. There's still a lot of work to do, but I'm fighting my way back.
I can't really think about work yet, I'm often so knocked out from the exercises that I have to lie down. The concentration isn't the best either... everything drags on a bit. It took me at least a week to write this text. But this also gets better every day.
Basically, it's amazing how quickly I made it out of the intensive care unit and how quickly I'm back on my feet. The doctors didn't expect that and made it clear to me that it wasn't "normal".
So, in a couple of months all should be back to normal - I hope! Also thanks to the great support I have from my colleagues at work and all my family and friends! Thank you guys!
created Stephan Bösebeck (stephan)