You should talk to your doctor, and other people experiencing leukodystrophy, about the benefits and costs of this equipment before you do anything suggested here.
As the leukodystrophy progresses, the person affected may begin to find it harder to cough and to clear their throat and nose of mucus. This is a problem, because coughing, clearing the throat, swallowing and blowing mucus out the nose is the only way the airway can stay bacteria free. Therefore being unable to do these things often enough can lead to pneumonia. There are four things that will provide the best quality lung care. The NHS may feel it is unnecessary to use all of these, but of the accounts of leukodystrophy I have read, the people that did survived the longest and had the fewest infections.
- Vibrating vest: Loosens mucus in the lungs, so it can easily be brought up
- Cough assist machine: Brings up the loosened mucus to where it can be sucked out
- Suction machine: Because people with leukodystrophy can't swallow well, mucus must
be brought out by suction instead
- Nebuliser and face mask: This is a machine that turns breathing medicines into a fine mist that flows into the face mask. The person breathes the mist into their lungs, where the medicine takes effect.
- Oxygen cylinder, hose and face mask: An oxygen cylinder holds liquid oxygen which is delivered as a gas through a tap at the top. You can attach a thin rubber hose to this to carry the oxygen into the face mask, which the person wears and breathes in the oxygen. This should not be used in excess, the reason being explained in the next paragraph, but it is useful if oxygen levels are low, and a top-up is needed quickly.
- Bipap machine, nasal mask with head gear, and air hose: The bipap machine is a noninvasive form of ventilation that need not completely replace breathing; the person can breathe on their own and just be assisted by the machine. Because it is noninvasive, there is no trauma from surgery, and no risk of infecting an open wound site. The machine both pushes air into the lungs and helps draw it out again. Most bipap machines have computers that can figure out how much it needs to help the person to breathe - so it doesn't do more than is needed. Extra oxygen can be used with a bipap machine, but usually it just uses air. This is because when you give extra oxygen the body thinks it doesn't need to breathe. When this happens carbon dioxide builds up and causes problems, such as difficulty sleeping. The bipap machine is very easily portable in a wheelchair and car, so does not restrict quality of life. I would recommend a nasal mask, rather than a full face mask to people with leukodystrophy, because these people tend to dribble saliva, which could pool in a mask that covers the whole face. From a lung point of view it helps avoid the lungs getting deflated and forming puddles of moisture which could grow bacteria.
It is important to get these pieces of equipment as early as possible, because it allows for time to gradually get used to the breathing regime before it needs to become rigorous. It also means that there is no window in which therapy is needed but equipment is being waited on, when an infection may slip in and begin to grow. One last reason - some doctors believe that once a person's terminal illness has progressed enough, preventative treatment is 'not worth it'. Right at the very end of some terminal illnesses, such as certain types of brain tumour that cause loss of awareness and coma, this may be true: Treatment would do nothing to alter the course of illness, alleviate suffering or prolong life. But with leukodystrophy, life can be prolonged and suffering alleviated, because in many cases it is only movement that is affected - not intellect, consciousness or ability to feel pain and discomfort. The quality of life of the person with leukodystrophy can also be greatly enhanced by parents, carers, friends and family.
It is also important later on to get monitors for times such as in the car or at night.
- Baby monitor, preferably with monitoring screen as well as speaker: Lets you hear and see the person at night, and amplifies the sound of any distress or alarms.
- Apnoea alarm: This detects breathing movement, or lack of it, and sounds a loud alarm, which allows the carer or parent to come to the person's rescue. There are apnoea alarms available which will also sound if a seizure is detected
- Pulse-ox monitor: This is a device which is fitted over one finger, and displays oxygen saturation (100% in those with full breathing function) and pulse rate. It can be used all the time, or just to check breathing and heart each day, or if the person looks ill or breathing sounds bad.
LINKS
BIPAP Machine
http://bipapvision.respironics.com/ = non invasive breathing assistance machine
Vibrating Vest
The Vest® Airway Clearance System = vibrating vest to help loosen mucus
Cough Assist
Features, CoughAssist, Philips Respironics = cough assist to help bring up mucus
Suction Machine
AW Suction Pump Mini Aspirator : Beaucare Medical = suction machine to extract mucus
Child’s Nebuliser
http://www.nebulizermask.com/ = child friendly nebulisers and masks for breathing treatments when congested or tight in the chest
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