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NON-INVASIVE VENTILATION AND INTUBATION.
JOHN'S EXPERIENCE OF NON-INVASIVE VENTILATION
A mask covers the nose or the mouth and nose and a tube is attached to a machine that supports your breathing. Patients are usually able to eat and drink and communicate by removing the mask for short periods. This will help you through the worst parts of an exacerbation. NIV users have low rates of mortality (which is good news!) but are however not suitable for everybody. For example if all your organs fail it would not be appropriate!! If you cannot cooperate with the treatment - I suppose that people might freak out or refuse in frustration tearing off the mask etc!- then equally it would not be appropriate. Some patients cannot keep their airways clear of mucus/sputum so again NIV would not be appropriate.
NIV (abbreviation of above) is usually given to patients in hospital who find breathing impossible with drugs and they usually have a severe exacerbation or pneumonia. It may also be given with the carbon dioxide begins to build up in your blood and you become very sleepy or incoherent.
I am on a trial for use at home at night. This is because I have respiratory acidosis - that is the carbon dioxide levels by day are too high. By using it at night it helps to balance the levels by day and also gives my respiratory muscles a rest. The aim here, given I have an FEV1 of just over 15% (see DIAGNOSIS ), is to see if it extends my life! The machine is called the NIPPY 1 and here I am in bed with it at home.
My nose looks red but that was before I adjusted the mask properly! Note the oxygen at 1 litre per minute enters via a green tube, the main tube just before the machine. The other green tube snaking off to the left is the electric wire. Basically the air pressure forces me to breathe in and I try to breathe out through my nose - you might see a small open tube half way down my shirt collar. All the settings are made in hospital & I don't alter them. I've opened the lid for you to see them (not easily visible) but normally it is closed.
What difficulties and satisfaction have you received from this machine?
Make sure that you are given a face mask that fits. Too small and it will pinch the bridge of your nose and an ulcer may form. Too large and it will leak like mad. Unless you are a private patient don't expect one specially made to fit you.
- The straps are very fiddly to adjust. If you suffer from arthritic fingers you will need help from your carer.
- To ensure a good fit it is advisable to keep your false teeth in! This is because the bottom strap needs to stop you from breathing out through your mouth. Breathe in and out through your nose.
- The correct settings will be fixed in hospital and you must not adjust them yourself.
- You may feel claustrophobic at first. In the first week I tore off my mask twice in the night. But persevere if you can. Some patients are just unable to tolerate it.
- You may find that you wake up in the night with a very dry throat. Keep some liquid beside the bed to drink and then replace the mask.
- I can read with the face mask on but with one eye or a bit of both!
- If you have to use it by day then you will have to remove it to eat and drink. The oxygen is easily switched over to your nasal cannula.
- Your breathing must match the pressure from the machine - relax and let the machine take over your breathing. It feels great.
- The machine makes some noise at first for thirty minutes, but then settles down to a steady hum, You quickly get used to.
- Remember that it is doing you good, removing carbon dioxide from your blood, normalising your heart rate and your breathing.
INTUBATION
I know next to nothing about this subject except that if NIV above fails to normalize the blood gases and breathing then you may be intubated. Fortunately for us but unfortunately for Steve G. he is here to tell us all about his experiences. You may have read his piece about asthma/copd and visited his web site www.baycitywalker.blogspot.com. An amazing man !
Asthma affects at least 5-7% of the population of North America and Europe, and is rising . A subgroup of patients with asthma (possibly< 5%) have a more difficult disease reflected by high medication requirements to maintain satisfactory disease control and presistent symptoms, asthma exacerbations or airflow obstruction in spite of all the medications he uses. These are the patients commonly referred to as having refractory asthma. Steve has refractory asthma.
THIS IS STEVE'S EXPERIENCE.
I'm 53 years old and I've had severe asthma since birth . During my lifetime, I've been intubated 13 times for status asthmaticus (refractory asthma). I know the exact number of intubations, because I have almost all of my inpatient medical records dating back nearly 40 years I've been intubated for either respiratory muscle fatigue , clinical respiratory failure (climbing PC02 (carbon dioxide), low Sa02 blood oxygen)) or one time, for a respiratory arrest. My earliest and first recollection of being intubated was at the age of 16. While being taken from my hospital room to the xray dept for a chest xray, I apparently had a respiratory arrest in the elevator. Though it's unclear whether or not my heart stopped as well, they did chest compressions on me which fractured one of my ribs. All I remember prior to that particular intubation , was being in my hospital struggling to breathe and having a mean doctor telling me to calm down. My next intubation occurred at the age of 22 . The day before I got really sick, I remember feeling more sleepy then short of breath. When I got to the ER , I couldn't stay awake. The next thing I remember was waking up in the intensive care unit 5 days later. It turns out that my PCO2 was over 100 the day I went to the ER. The most difficult intubation or should I say difficult "Extubation" occurred just a few years ago.( 2004) The usual scenario, I had a bad exacerbation, ended up in the hospital, got really tired , failed a bipap trial (NIV), and ended up on a ventilator. Two days later after they took me off the ventilator and pulled the tube out, I started experiencing severe shortness of breath again. After being off the ventilator for only 3 hours, my C02 started climbing and my SA02 dropped again .....I felt like I was suffocating. They immediately put me back to sleep , re-intubated me, and place me back on the ventilator. I was on the ventilator for another 48 hours. I remember waking up occasionally while they were suctioning me and also when they were preparing me to breath on my own. Once again, they let me breath on my own while I was still attached to the ventilator, but shortly after they took the tube out, I became very distressed again, and had to be intubated for the 3rd time. Finally after being on and off the ventilator 3 times, and with the help of potent opiate medications ( fentanyl) and non-invasive ( bipap), I was able to stay off the machine completely. After coming off the ventilator for the 3rd time, they told me that if I needed to go back on the ventilator again, that they would have to put a hole in my neck ( tracheostomy). I think that was enough incentive for me to tough it out. In total, I was in the hospital for 3 weeks, ( Two weeks in the intensive care unit and a total of 7 days on the ventilator.) One of the reasons that I had such a difficult time coming off the ventilator, was that in addition to my asthma, I also developed a small pneumonia . Those things in combination with very low lung reserves, made the work of breathing overwhelming and therefore difficult to stay off the ventilator. As my lung disease has progressed over the years, we now reserve intubation as a last resort because we know, that extubation (getting off the intubator) can be tricky. We always try non- invasive ventilation first , and if intubation is absolutely necessary , we try to limit it to 24 hours if possible, that way it easier to wean off.
Stephen G (I'm on the right!!!)
It should be pointed out that some elderly patients or those with other illnesses besides COPD might not want to go through Steve's experience. It has a relatively high mortality rate compared to NIV. Make your wishes known to your GP, consultant & family in advance. You will not be able to communicate under intubation and will be sedated. But as you can see from Steve's account it might be worth considering if you have to decide!!!
STEVE AGAIN
It's been nearly a year since I was intubated, though it's only been 7weeks since I was last hospitalized . In the 10 months since my last intubation, I've walked two full marathons and one half marathon. It hasn't slowed me down at all!! Here is a picture from my last marathon in October (the Portland Marathon). I did this race just 3 weeks after getting out of the hospital and it was my best race ever.
Website Created by John Kirtley BA. Edited by Mol Smith and David Boswell B.Sc