Ventilation control no thanks

I receive so many exciting questions, which I have answered quietly, painstakingly and lovingly as a private message, and that's a good thing. I will continue to do so. However, I often think to myself afterwards or, as I did yesterday with these three or four questions, why "only" as a pm? Wouldn't it be nice if everyone could benefit from it?

There is interest in topics relating to the care of people with ALS. I can see that from the number of hits and the time spent on these articles in my blog. I wish they were as high for my reports on nature conservation and animal welfare in particular. But life is not a concert of wishes. On the other hand, everything that has to do with care errors or, more generally speaking, problems in care seems to be particularly interesting. I think that's a bit of a shame, because there's a fine line between argumentative personal disappointment and sweeping criticism of "the system". Very thin.

I'm often on the edge, often from the wrong side. But I'm reporting here from my own personal experience, so that's inevitable. I've also successfully built up several companies, managed employees, etc. In other words, I know how to plan and organise properly. And last but not least, I have at least once worked in nursing on a neurological ward and know what it's like. It's not easy on the mind and soul. So when I criticise "the system", it is well-considered. I'm not saying I could do it better. I am saying that I have done it better.

Wo waren wir gleich wieder? Bei den hohen Klickzahlen zu Berichten rund um Probleme in der medizinischen Versorgung, richtig. Wir Menschen sind halt doch schlicht und einfach geil auf schlechte Sensationen. Ob das unsere Schuld ist? Als Mensch in der Gesamtheit denke ich nicht. Jeder einzelne für sich, spannende Frage. Aber nicht die, die mir eine gute Freundin heute gestellt hat. 😉

Roughly speaking, I recently told her that I no longer go to my home ventilation check-ups. The whole thing is probably labelled WEANING. I have no idea what it means and why all the letters are capitalised. Maybe it's an abbreviation for something particularly complicated that I wouldn't understand anyway. Or it's supposed to emphasise the importance of the procedure in this way, which I don't understand either. I could have asked, but that would have required a minimum level of interest. As you can see, questions upon questions. So let's get to the questions.

„Darf ich fragen a) was da alles gemacht werden würde.. und b) weshalb du nicht hingehst und c) gibt es keine Möglichkeit für Hausbesuche? 😘✌🏼“

Klar darfst du fragen, du bekommst sogar Antworten. 😊

A) Three nights of capnometry and ABG (blood gas analysis) to document that everything is OK or that something has been changed at the patient's request. The settings I calculated have always delivered better blood gas values than what the "experts" wanted to set. It's a mystery to me why you don't generally set what the patient feels comfortable with first and then do a cape. But then there would probably be no reason to bill three days of intensive care as an inpatient.

B) It has to be done every three months. With transport and everything, I'm out of action for a fortnight every time and feel six months older.

C) Hausbesuche scheitern am Kapnometer. Die Dinger sind irre teuer. Ich befasse mich schon länger damit, weil mir das Thema auf den Sack geht. Aktuell habe ich das Bedürfnis, den Druck beim Einatmen zu erhöhen. Das Einatmungsvolumen ist mir zu gering, was zu schlechter Zirkulation führt und das wiederum führt zu einer Anreicherung von CO2 im Blut. Das merke ich am Gefühl in den Fingern, ich wette 100 € mit 1:10, dass das so ist. Aber jeder Arzt fragt erfahrungsgemäß erstmal, ob ich tagsüber müde bin – nein, ich kann problemlos bis nachts um 3 Uhr aktiv sein und komme mit 7,5 Stunden Schlaf aus. Die Werte an der Maschine sind im festgelegten Soll Bereich. Mag ja sein, dann muss der Soll Bereich an gepasst werden. Nur darf dummerweise niemand die Parameter ändern. Ich hätte es längst selbst gemacht, aber na ja.. ☹

Side note: I completely isolated myself again over the last few days, lived "offline" and enjoyed the time with my sister, who was visiting from Spain. That did me so much good. I'm sleeping again. I even slept for 6 hours straight a few nights and didn't even wake up when I went to camp. And if I do wake up during storage, I fall asleep again in two or three minutes. And I think this is actually largely due to my winter duvet. Since I started using it again (even during the day), I feel much better overall and I haven't panicked since. Maybe I'm just imagining it and it's a coincidence.

Back to the cape: I will probably buy a SenTec V-Sign. The health insurance company probably won't cover the €14,000 for it, they're so hollow, according to their "economic efficiency principle" it makes more sense to pay for an inpatient stay every three months and hope that I die before the next appointment. And there is no medical necessity. I'm not tired and my respiratory parameters are within the normal range. At the end of the day, I don't care. Last year I had to pay more than twice as much for my hospital stays, I'd rather buy cool toys with that money. I could change the ventilation parameters on my own authority (or have them changed), have the capnometry recorded for three nights plus however long it takes to achieve ideal blood gas values - and if everything fits, my lung specialist comes to check and, if necessary, issue a new prescription for ventilation. Thanks to Spahn and Lauterbach, he has to come every nine months anyway to prove to the health insurance company that I can't suddenly breathe spontaneously again. Actually every six months, but in purely mathematical terms, there aren't enough doctors specially authorised for this and so the legislator turns a blind eye.

Since #RISG and #IPReG, general practitioners caring for ALS patients no longer believe that weaning from ventilation is possible. Even at this three-monthly ventilation check-up appointment, patients are not given a prescription for out-of-hospital 1:1 intensive care at home because "that's not our job".

In this respect... I don't give any clinic money for such nonsense. #noRISG #noIPReG