On the subject of filling the humidifier with water, I have a very big request. I emphasise this so clearly because I hope you will be the first to comply with my request.
Special request: fill up at least 50%
The humidifier must always, at all times, without exception, be filled to at least 50% with water.
If there is less water in the humidifier, this has the following effects:
- The air you breathe becomes uncomfortably hot.
- Water condenses in the hose. This creates gurgling noises that discourage sleeping, especially at night.
- The condensation hinders breathing considerably because the triggering of the breaths no longer works. The ventilation then switches to the emergency programme, which in my case is 6 breaths. In a situation where I already have difficulty breathing because of the water in the tube, this is too few and provokes fear and, in the worst case, panic in me.
- My mucous membranes dry out. You are welcome to try it out for yourself on my second respirator. The airways dry up, the saliva blisters and can no longer be swallowed, the secretion becomes sticky like three-hour-old porridge and clogs the bronchial tubes. The last two times (the last time was on 30 July) we were able to solve the problem ourselves after 9.5 hours of constant suctioning, Cough Assist, a half-hour change of position, ACC akut'(taken lying down, 2 litres of oxygen continuously, morphine and Tavor Expedit. The one time before that we were not so lucky. I was allowed to go directly to the intensive care unit for a few days with a crew of eight (emergency doctors, paramedics, nurses, paramedics) and blue lights. Only a bronchoscopy could help.
Why am I writing this in such detail?
Because my previous carers didn't believe me and every time they forgot to refill the water in the humidifier, they claimed that the problems weren't caused by that. Instead, I was told hundreds of times that I needed a PEG and a tracheal cannula, then I wouldn't have all these problems any more. Well, almost a year after the first edition of this book, I have a PEG. So? Has that changed anything about the humidification? In the negative, yes. The lack of oral hydration very often leaves me with a completely parched mouth and throat, despite considerable mucus production. And it's funny that I don't have all these problems even when they just do me the small favour of refilling the water every three to four hours.
Fill up humidifier
Please refill the humidifier during operation.
Aqua dest can be found in abundance in the large closet in the bedroom. Whenever the supply has fallen below 18 bottles, please let me know. Several times if you like. I have to pay for the water myself, so I order it from an online pharmacy that sometimes has a delivery time of two to three weeks, but charges less than ¼ of the price of Vivisol, WKM and my medicine cabinet.
To fill the humidifier, you always check with me first. As soon as I give you the OK with my eyes, you open the lid of the humidifier, quickly fill it with water and close the lid again. Don't pause the alarm of the ventilator. About once a week it happens that the lid is not put on properly and the air escapes from the humidifier instead of into my mask. In that case, it is very helpful if you also notice this because of the alarm.
Just a side note because I am asked this question so often:
- IN: The short grey tube coming from the ventilation is connected here ("input").
- OUT: Here the long grey tube with tube cover is connected, which leads to the breathing mask ("output").
