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.
Where were we again? With the high number of clicks on reports about problems in medical care, right. We humans are simply horny for bad sensations. Is that our fault? As human beings as a whole, I don't think so. Individually, that's an interesting question. But not the one a good friend asked me today 😉
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.
"May I ask a) what all would be done there... and b) why you don't go and c) is there no possibility for home visits? 😘✌🏼"
Of course you can ask, you'll even get answers. 😊
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) Home visits fail because of the capnometer. These things are crazy expensive. I've been looking into it for a while because it's a pain in the arse. I currently feel the need to increase the pressure when I breathe in. My inhalation volume is too low, which leads to poor circulation and this in turn leads to an accumulation of CO2 in the blood. I can tell by the feeling in my fingers, I bet €100 at 1:10 that this is the case. But experience shows that every doctor first asks if I'm tired during the day - no, I can be active until 3 a.m. without any problems and get by on 7.5 hours of sleep. The values on the machine are within the specified target range. Maybe so, but then the target range has to be adjusted. Unfortunately, nobody is allowed to change the parameters. I would have done it myself a long time ago, but oh well... ☹
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
