A tragedy in six acts
So more or less
I'm good at complaining when I want to and when I make an effort. So seamlessly on with the text. I assume you have the first part of this story already read. If not, you can find it here. The story cost me €7,000, so it's worth a look.
Another little thing that is never mentioned in advance is the altered secretion. Due to the irritation of the stomach because of the direct food intake, it seems that the mouth and throat continuously produce a viscous, sticky, strange-tasting mucus. I have to be suctioned practically all the time. It's super annoying at night, especially for my carers. Whereas I used to be content to be put into bed every 90 minutes, I now wake up at least every 60-90 minutes covered in mucus and desperately need to be sucked out. And preferably before secretions and saliva run down my airways even further. Stopping it, coughing it up or swallowing it is one of the things my muscles can no longer do.
Suctioning is not tragic. Unfortunately, I can't do it while I'm wearing the mouth-nose mask. First I turn onto my back - the first gush of mucus gets lost in the direction of the bronchial tubes - turn my head - the second gush of mucus becomes a bit disgusting - and then I have to suck it out again. extracted and then everything back again. In hopeful expectation that the in bed with Paddy was. Not that we've been there before. It was a few years ago. An orderly successfully pushed his way in at the time. Didn't you, Professor?
Let's get back to the actual topic. Knowing all this in advance would not have changed my decision for the PEG. Neither in terms of timing nor in the matter as such. It was the right decision at the right time.
And no, dear doubters, even now that I have the PEG, I don't share your opinion that I should have done it earlier. Sorry, you were all wrong.
Nevertheless, I think that as a patient you should be informed about such things in advance. But what do I expect? They didn't even mention that they would have to intubate me. And how problematic that is for ALS patients like myself. Because the danger of my lungs completely refusing to work after extubation and not starting up again cannot be dismissed. In the best case scenario, I would have left the hospital with a tracheotomy. In my modestly unimportant opinion, such a hint absolutely belongs in the preliminary medical consultation. But not even the medical staff were aware of this throughout, so my personal expectations are probably just too high.
But seriously. On Monday morning I was called to the hospital for an operation on Wednesday, because they said they had so much to discuss beforehand. And all the preliminary examinations. It's clear that you can forget such unimportant trivialities. Especially when the answer to my specific question is that you have to find out more. Where did I get this information? Yes, that's how it works in the FBI, one of the world's leading institutions in the treatment of neuromuscular diseases in general and ALS in particular.
I know, I'm really just grumbling again. But what else am I supposed to do? Six fucking days I was there for a procedure that normally takes less than half an hour. Completely unplanned and unexpected Almost €7,000 for my care paid during this time, which I can only call apprenticeship money by any stretch of the imagination. I prepared everything perfectly. I sent the doctor's letters from my previous visits to exactly the same clinic, on the same ward, with the same people, to the ward by e-mail and handed them in in printed form. I even handed in several copies of the Medi-Plan. I told them that I had my own carers with me, as I had done for every previous inpatient stay without exception. Man, something like that has to come out of my file. I was informed in advance of the many and varied problems I had encountered during my previous stays. I had handmade chocolates sent to the ward for €300. The thanks I got? Exactly the same ridiculous excuses as every time. Once again, they didn't even manage to give me an adequate mattress. It could only be ordered for me once I had been admitted and a patient number had been assigned. Honestly, I can't hear it any more, what a load of bullshit. I have a written copy of my last complaint:
Dear Mr. Ruppelt, I think we have found an IT solution for this, how we can already generate a case number before admission and order the mattress with it, I hope everything will run smoothly next time, thank you very much for your input!
Best regards
●●●●●●●●,Professor Dr. med. ●●●●●●●●, M.A.
E-mail from 2 November 2021
Neurologist, Nutritional Medicine (DAEM/DGEM)
Friedrich Baur Institute
Neurological Clinic and Polyclinic
LMU Hospital
So much for that. It worked out great. Not at all. I would have been surprised too. On the second day, at least a little bit happened, such highly important things as an ECG. A finding that I am paralysed in all four extremities and that I have problems with food intake. Wait, what was the reason for my stay? LOL. Nothing worthy of reporting, but at least the wait doesn't feel so unspeakably long anymore. So. I have to stay sober now, I'm off in the morning. Then it's "PEG... in bed with Paddy.".
Further on here.
