Spoiler, it happened. I let myself be taken for a ride. I, the smart arse in front of the gentleman, the know-it-all and the curmudgeon, got punched in the mouth. But really. When I do something, I do it properly. Even if I fall into the loo, even then it rattles in the box. Or in my account. After all, nobody has ever paid 50,000.00 euros out of their own pocket for the installation of a tracheostomy tube (TC, cannula, tracheotomy, stoma).
I could just as easily have had the item made from pure gold. However, I would have serious human rights concerns about the mining of precious metals. Not to mention environmental protection, which is hopeless.
A total of 41 cows rescued from the livestock industry could have been cared for for a whole year with the money.
Well, at least I've just had my seventh cannula delivered in just two and a half months.
First you get a hospital model. Then your "own" cannula, with the right consistency and size. It leaks in the hospital and has to be replaced in an emergency. Unfortunately, the hospital staff get the wrong cannula. However, the nursing service confirms that the wrong model was used. So the wrong one is inserted. This is corrected by changing the cannula again the day before you are discharged, and the whole mess is repeated at home. It is changed regularly, the new one leaks and is changed again in an emergency in the middle of the night.
That puts the costs into perspective. Not.
Yes, hello first of all, I don't know if you already knew... That was comedy. The younger ones, all of you, will have to google it. Anyway, I'm fine. I'm not. I'd like to say I told you so. But who benefits from that. Not me.
Fact check. Not everything gets better with a cannula.
The breathing problems are not getting any better. I have them every day.
The panic attacks are by no means disappearing. I now need strong tranquillisers like Tavor 2.5 mg as a kind of permanent medication to get through the day. It's quite different when the machine does everything. If I need more air, tough luck, triggering is no longer an option. Moaning during sex? Sure, it's great with the same 12 breaths per minute. You can't breathe out through your mouth and nose anyway. Everything is switched off up there.
Incidentally, we suction four times more frequently than with a NIV mask. And practically every suction in the cannula is as vital as it is life-threatening. And yet there are carers who believe that the medical guidelines do not apply to them because, yes, because, boah, because they are stupid. I don't know, I'm tired of this discussion.
Anyone who does not comply with German medical hygiene standards is wrong with me. I am also happy to tell every specialist personally. If I could choose, no one would work for me who performs non-sterile suction contrary to guidelines and against my express wishes.
Sterile working, another sore point. The discussions I've already had. There are plenty of things you can discuss with me. But a discussion about whether you should really work sterilely on a blood-fresh cannula because it's not sterile at home anyway and the work at the hospital was really dirty...
Firstly, that was a quote, that's exactly how I heard it.
And secondly, let's note that I've never got an infection or germ in hospital. Not even during my four weeks in November and December last year, when the work was dirty.
At home, on the other hand, so often that we now always have antibiotics at home in case the stoma, PEG or toe become infected again. Just as we happen to have again right now. So, all four are inflamed. Cannula inflamed. PEG inflamed, a lot of pus comes out. Pufi well, opinions differ, my urologist is coming on Monday. My toe hurts. I'm not even asking for photos any more. The statement from the handover that it is inflamed and the wound is open is enough for me. In any case, my GP doesn't have the time to visit me at home every week.
And thirdly, and anyway, what am I supposed to discuss?
This is only topped by the discussion about the fact that distilled water is definitely sterile. No offence meant if you're reading this. And I know you're reading this. And you're one of the best. But please don't inject distilled water mixed with salt as electrolytes into my veins to cool my car. That's just plain factually wrong and could cost me my life.
If you have no idea, just... ask your colleagues whether you mobilise the Pufi like a PEG. No, bloody hell, you don't. No wonder it's always on fire.
And just as you work sterilely on the bladder - shit, really, I could really cry, what do you think sterile gloves are for in the catheter set - you also work sterilely on my TK, which is covered in bleeding game meat. Unfortunately, it's too much to ask. Neither my bladder nor my stoma are always sterile.
Everyone knows that, nobody does anything, because I have no choice. By writing this so openly, I'm not even upsetting anyone. Because only three of my carers represent my own ideas on hygiene. Well, not three in the current team, but of all the carers my nursing service has sent over the past year and a half, only three represent my idea of hygiene. Just look at a goose gargle from the cough machine that hasn't been cleaned for twelve hours. No, I don't give a damn that they supposedly do that. I don't want that. I've already had two bouts of pneumonia.
They were all wide-eyed. How is it possible that I can catch something like pneumonia in my hermetically sealed ventilation circuit and my environment that is sealed off from the real world?
Sponge over it. Let's agree that I don't need a third pneumonia and that we rinse the goose gargle thoroughly after each use so that it is as germ-free as possible for the next use.
Because what still somehow ended well with a mask, more or less, is now a gamble with life with a cannula. Which is totally my thing. If I'm allowed to play with it myself. But now others are playing with my life and I think that sucks.
Somehow everything was easier with a mask. What can I say? Yes, it was. After two and a half months of very, very, seriously very much sober reflection, I can only say that I told you so.
Never in my life have I had so much psychological stress, so much physical pain, such a mountain of medication and so many infections in a row as I have had since having a tracheostomy tube fitted. I've also never had to discuss hygiene so often. Believe me, it's destroying me.
Not my opinion, but measurable fact. I told you so. Of course I was right. I'm always right. Except when I'm not right. Let's see if I'll be right in court.
It would read like a thriller. If I told you the whole story. Maybe I will one day. But not today. I haven't yet reached a judgement on how much this would affect my legal action against the AOK, my health insurance company slash health insurance and long-term care insurance slash long-term care insurance to my disadvantage. There's a lot of money at stake. Shit again, it's about a lot of money.
It really pisses me off that I have to go back to the clinic the day after tomorrow for several days to have the inflamed venison put under the knife again.
It's still wearing on my nerves that I was right about everything I said before about the cannula. It's really exhausting, even though very few people will understand how fucking exhausting it is.
At least I thought I had finished with my visits to the clinic.
It wasn't my wish to spend from the end of November to New Year's Eve in intensive care. Oh wait, one weekend I was transferred against my express wishes, against resistance from within my own ranks, contrary to the guidelines - okay, okay, forget the guidelines. I was transferred to the normal ward, where nobody had ever seen a ventilated patient before. They could call the intensive care unit in an emergency. Even the transport there almost failed because the nurses refused to move me to a non-ICU ward. The only reason why this was ultimately carried out was that, as we all know, the hospital cannot provide vital 1:1 care in any case and therefore does not bill the insurance company for intensive care in favour of my own nursing service (which accompanied and cared for me). Or... did they?
Yes, they did. And the health insurance company pays without any queries, even though the inclusion of their own care service was already discussed with the AOK in November.
Document? Dude, fuck the document. The helicopter from the hospital was 30 metres from my front door, two emergency doctors plus paramedics and my worried parents were standing by my bed, I could see the blue light from the additional ambulance reflecting through the large window.
I don't know much more. Days of (measurable) oxygen deprivation despite the addition of 5 litres of pure oxygen per minute caused my attention span to plummet dramatically towards zero. I would go so far as to say that at times I didn't even know how to spell the word "application". Let alone the meaning of the word. I would have to have understood what you were telling me in the first place.
But I lay there for days, paralysed by my ALS disease and sedated by an immanent overdose of diazepam and Novalgin, decomposing. I didn't think it was possible to go so long without washing, but if the panicky fear of even the slightest touch is great enough, then strange things happen in the brain.
The whole thing is even more dramatic for those around you than it is for you. You realise this, which fuels your panic even more and makes your loved ones even more insecure. Over the course of several weeks, a diabolical spiral formed for us, from which there was only one way out. I had to go under the knife. I had to go under the knife, ram it into my chest and twist it so that the wound wouldn't close. A cannula was inserted and a disgusting balloon was inflated between my windpipe and mouth so that the air from the ventilation couldn't escape. Nobody told me. But the goal is clear. However slimy I may be (a problem with a mask), in future the air should be pumped directly into the bronchi. So much for the theory anyway.
In theory, you can chop my head off now and I'll carry on breathing as if nothing had happened. You just have to hit above the cuff, which is the correct name for the balloon.
Despite all the attempted bad jokes from today's perspective, those were difficult weeks for my parents. You have to imagine it from your point of view. You call the health insurance fund from the hospital, clarify the hospitalisation and the need to bring your own nursing service with you. We immediately deliver what the insurance company requests in writing by e-mail. It was all planned well in advance. Not an unexpected story.
I have found an extraordinary basis for communication with my personal contact. A real relationship of trust. Not. The application and things took their course. My father kept in regular telephone contact with the AOK and kept my contact person informed about everything. A relationship of trust and all that. My dad was beside himself with excitement about what a great AOK employee I had found. So reliable, courteous, competent and friendly. Always completely on my side. So much on my side. Very impressed with me, she takes such good care of everything. I didn't have to do anything except get better. Well, as far as I can be said to be healthy, of course. Not a word was mentioned all those weeks that there might be problems with the billing. Well then.
After the operation is before the operation.
Ironic that only Novalgin was exchanged for incomparably stronger painkillers. I had on offer 3.75 mg piritramide intravenously every three hours. (better known under the brand name Dipidolor, affectionately known as Dipi), Oxy sublingual (oxycodone), Tilidine (drops, the good stuff), Morphine sublingual drops, Fentanyl plasters (the things we used to boil), Fentanyl sublingual and 100 ug fentanyl nasal spray (gives 200 ug fentanyl at once per application - contrast that with my patches which deliver 50 ug per hour and you'll get a rough idea of how painful the daily dressing change is).
Diazepam, also known under the brand name Tavor, has remained in quantities subject to BTM.
Everything gets better with a cannula? Erm. No. Seriously. Just no.
Nobody told me before that you lose your sense of smell and taste with a cannula.
Which is why I gave up smoking after 25 years. And smoking weed.
Nobody told me beforehand that the cuff pressure needs to be checked regularly, which I find really unpleasant. I hate it when someone fiddles with my neck. And now I'm supposed to get used to someone pumping a water balloon into my mouth. I'm not going to get used to that. I couldn't stand having something down my throat for 44 years. Why should that change now, of all times, when I have something really ugly and, above all, really painful on my neck?
Speaking of which, if you're not careful, the pressure pump doesn't deflate slowly, over, well, let's say ten seconds. To the maximum pressure of my neck (30 whatever, mercury column or something, presumably. Nope, it releases a muffled "bang!". Followed by a dangerous "hisshh", reminiscent of a luma (air mattress) that I forgot to inflate. Half a second before the luma bursts. Strange. It feels like the mattress, the thing in my throat, is bursting. Cuff, that's what it was called.
No, everything is by no means better. Every problem with the mask is now a problem with the cannula that is five times worse.
I can still hear your words, no one has ever had their tube ripped off their neck by carelessness with a cannula. Bullshit. The last time was the day before yesterday. In total? I've stopped counting and live with it. I just have Tavor given to me at lunchtime after nursing. I told you that's exactly what would happen. I would be happy if I were wrong.
Why doesn't anyone know that? Because nobody dares to open their mouth for fear of upsetting their carers. No choice and all that. I do too. Because the good of all is more important than the good of one. Boy, am I a do-gooder. And a braggart.
Seriously. Apart from that, which patient with full care, like me, is in a position to express their wishes? Most of them are just vegetables anyway.
And so it was that I was back home on time for New Year's Eve, but was released with the burden of many problems.
Have you ever seen a patient discharged with venous access? Because he is in such unimaginable pain that you have to inject the strongest opioids directly into his blood every few hours or risk losing him.
But good. It's getting better.
And then worse again. An up and down of emotions.
–
Two and a half months have passed since the operation. It has not got any better. The inflamed game meat has to be removed.
Which is just a euphemism for the fact that I am ventilated with pure oxygen in a normal atmosphere until my body is saturated with oxygen to the maximum.
Which is just a nicer word for poisoning.
Then I get sedated. Hm. Poisoned again. But with the purpose of switching my brain to stand bye.
I find it extremely relaxing. Simply doing nothing. Just do nothing. Think about nothing. Think about nothing. Not about the multiverse, not about our galaxy. About the planet that we are parasitically raping and forgetting in our zeal that planet Earth will not recover from 1.5 degrees of global warming. Game over. That's it. Species extinction, destruction of all elementary habitats as we know them. Measurable data. Not my opinion. It is. It was even on linear television. Radio. I don't even have a car... er, a TV. I don't have a car either. Maybe I should do away with web radio and just stop thinking about anything.
Don't think about the fact that even the public broadcaster stated this week that satellite data proves the failure of the climate targets. You can measure that. It was worth a subordinate clause in the news for BR. It disappeared from the coverage the same evening. So, this level of denial.
Hey, Beneke already said almost half a year ago that satellite data proves that the climate targets have not been met. After all, you can measure the earth's temperature. But who would believe someone who knows more about it than any of our climate researchers, but lives vegan out of conviction and always wears the same clothes to save resources. And constantly picks on measurements instead of making stupid opinions.
I don't understand why AFDers always want to discuss this fact of measurability. Once again for brown people, er dummies, it can be measured. What do you think we have over 7,500 satellites up there for? To rain down self-implanting microchips, Bill, thanks to the ChatGPT we bought, a fraction of that. Nope. We actually use them to measure the Earth's weather, go figure. And that's not all. We can pretty much project what it's going to be when and when it's going to be how. Relax, brownie, it's not the same thing. Taking into account a certain degree of uncertainty, we can say with statistical certainty that it's going to be shit.
When can you ever be sure of anything? Where do you get something like that? You don't experience that every day. You lose out on beautiful holiday destinations that you could have flown to cheaply at the expense of the environment because of the oil lobby. The Maldives, Madagascar, Venice, oh here, yes, the Great Barrier Reef with its billions of tonnes of CO2 bound in the biomass of the corals. All gone by 2050, but it could also be that the 300,000 square kilometre World Heritage Site will be dead by then anyway. We have already killed half of it, it only took us thirty years.
Seriously, I don't know how much CO2 is stored in the Great Barrier Reef on the east coast of Australia, but seriously, it sends shivers down my spine when I think about it. And I've got goose bumps and a tear is running out of my right eye. Has anyone considered that? Seriously, if the water temperature is so high in thirty years that all the corals on the reef have decomposed into limestone and the sea level rises, then the limestone skeletons will break like matchsticks and huge amounts of CO2 will be released into the atmosphere. Seriously, have politicians and scientists really thought about this?
In contrast, it seems like kindergarten that Hamburch is disappearing. They're used to weekly floods anyway. It's ironic that my girlfriend will then have to look for a new place to live, perhaps in the southern German Venice called Munich.
While my ashes are unfortunately already floating in Lake Tegernsee. Wait a minute, is the Tegernsee a glacial lake? The Alpine glaciers will also be gone by 2050, it's all too warm. I'll have to double-check with satellite data about burial at sea after a heroin overdose as soon as my eyes go and I can no longer communicate and live a self-determined life.
I wonder which bank is so crazy as to grant long-term loans for the construction of ski facilities. It's clear that they will never be repaid. Or a building loan in, say, Bremen, Bremerhaven or Wilhelmshaven. All gone in thirty years. Measured. Not my opinion. Three or four sentences in less than 24 hours just one day in the media. Then, just don't think about it any more, seems to be the unanimous opinion among the people and politicians.
Yeah no, of course. That's like telling me to forget the last Animals' Angels press release. They are ankle deep in a sludge mixture of faeces and urine. Many of the animals are suffering from respiratory problems and severely inflamed eyes. Luiz, one of the bulls, died on 8 January. His corpse is now in an advanced stage of decomposition, trampled by the other animals and barely recognisable. I can't. We export live cattle to non-EU countries that don't even have an animal welfare law on paper?
Dude, how much they've already shat into our brains. No wonder the AFD has such high poll ratings. How is this supposed to be compatible with current EU law? This states that the animal welfare regulations at the destination outside the EU must at least meet the European standard. Helloho? Have you forgotten? Morocco has no animal welfare law at all. That's crazy.
And that's not all. We even deliver live animals to Iran. So, they are alive when they leave. There are always a few losses. You know I'm not joking about such things. It's cheaper to breed animals in Germany and ship them halfway around the world, alive and sometimes dead, breaking international law several times in the process, than to establish a local breeding programme.
And we are discussing four cents per kilo for an animal welfare label. No kidding, all that. Except for the animal welfare label. That's even more of a joke than my health insurance company. If you value animals and their welfare, you're vegan. It's no big deal if you're not vegan. But then animals and their welfare mean nothing to you. I've also claimed to be a conservationist for decades and have spent my evenings eating mutilated animals. And yet, I would have gone through fire for our dog. Unfortunately, that's not love of animals, it's fucking speciesism.
My tears have nothing to do with joy. To forget that, you have to chop my head off. In order not to think about it, we don't need to start with the good Propofol. I'll count all the prime numbers up to a thousand before I get tired. And I usually wake up again at some point afterwards. Reality always catches up with you. Whether consumed illegally or on the operating table, reality always catches up with you.
I don't have much to catch up on, reality. I don't even try to escape it. But we're still not going to be best friends. Reality is far too shitty for that. And I'm not talking about the operation that's coming up. It's over quickly. Two or three days in the hospital and then it's time to go home. Theoretically. The hospital stay is soon forgotten. Not.
Not. Theoretically, no. Practically, no. The shit haunts me. Mail from the AOK in my letterbox. It's about my two hospital stays in November and December last year. They've changed their mind. I reply. As it sounds in the rainforest...
I hereby lodge an objection to your individual decision in the above matter in due form and time.
As the medical service commissioned by you has established, I am entitled to 1:1 care even under the new legal situation, as this is vital. The expert opinion is supported by identical statements from high-ranking experts, which I will be happy to provide on request.
The hospital cannot provide this vital 1:1 care. This is proven not only by my more than detailed experience reports submitted at your request, but also by the testimonies of my carers and, in particular, the statements of the hospital's own staff.
In this respect, I believe that all the individual standards you mentioned are subordinate, which justifies my objection.
Should my fundamental right to the right to live a self-determined life be suspended during a stay in hospital - and should this be established by the highest court - I will assert the costs incurred by me against you as part of an action for damages.
They already knew about all the circumstances in November 2023, but lulled my father and me into absolute, unquestioning security in countless phone calls until the beginning of 2024.
You justify your individual decision by stating that out-of-hospital intensive care cannot be prescribed for the period of hospitalisation. You should have been aware of such an important principle. I would never have agreed to such a hospitalisation if I had known that it would cost me around 50,000.00 euros. That is completely absurd.
Other solutions should and could have been considered, such as family support as previously practised. With all due respect due to overcrowded desks; it cannot and must not take six weeks to inform me of this "small piece of information". In any case, I will assert a claim against you for any damage I have suffered and will suffer as a result of your culpable delay.
Well, that's the way it looks. I wish I could change it. I lose heart from time to time. The whole thing has a flavour, as the Franconian would say. In my case, there's only one flavour left. Bitter, pungent and pungent, depending on the oral hygiene, the flavour varies from rather old-blooded to vomit. Nobody told me that the cannula would cause the sense of smell to disappear and that sooner or later the conditioning of the sense of taste would also disappear. What remains is the only flavour that the brain perceives with a certain regularity: Blood from the lazy force of suction and what some people call oral hygiene and vomit from positioning my hips too high. When it comes to things like this, I don't understand how such variations develop. I just want my ischial tuberosities to be exposed. Nobody said anything about the Tower of Babel.
There are flavoured mouthwash sticks, yes, they do exist. You can also make them yourself. Put a neutral stick in the soup and you've got a flavour explosion. Don't.
How exactly do you imagine that? Someone shoves a hospital-turquoise, odourless piece of plastic sponge into your mouth and says "Well? That's good.". It's not. I'd rather judge that myself and I think it's ridiculous.
There are (medical) things in my life that are just necessary. I can live with that. I don't think it sucks and I don't sugarcoat anything, but I'm quick to accept facts that are backed up by measurable data. What I find really bad is when someone without a cannula tells you how much better everything is with a cannula. It won't. It won't.
In this context, I asked myself why some of those affected in the relevant forums also fervently insist on how great everything is with a cannula. I have only one explanation. If we leave aside more drastic interventions such as dialysis and artificial bowel outlet, the cannula is the last stop before the executioner or undertaker, in the case of cannula advocates I suspect the undertaker. The executioner lacks fearlessness before death. That sounds terrible. I think it helps some of those affected not to feel alone. Me? Not me.
I see things differently. By definition, it can't be bad for me because, well, then I'm dead. Only for my loved ones will it really suck. At least I'm doing my best to leave so many traces in the real and digital world that I'll still be getting on your nerves long after you've all gone vegan. Oh, eggs, good keyword. I'll be taking on rescued chickens soon. I'll even put a new, easy-to-clean coop on them if I have to. We just need a few nice places where the animals can enjoy a well-deserved, beautiful retirement.
