Pulse oximeters and asthma

Just now I have been peer reviewing a study for the Cochrane Collaboration as part of the Cochrane Airways Groups. It has been fascinating doing this as it is the first time I am part of something from the early stages to now where the study has been carried out and dissemination will occur. Im not sure I can say much about the paper at all but this is not the reason for the post. While reading the paper I kept coming up with questions, thoughts, my own opinions and opinions shared by many who suffer from asthma. The paper was broadly about the use of pulse oximeters in asthma.

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What got me thinking reading this was how often either people will post about how they have low oxygen saturations yet will fail to get and seek medical help or those who have got help but don’t understand the Dr’s lack of urgency when they feel rubbish but have relatively good oxygen saturations.

Having had a tricky time with my asthma for a while now I have seen and felt a lot of different oxygen saturations and the effects it can have on your body. About 10 years ago the Sister of the respiratory ward I used to attend took time and explained all about oxygen saturations, asthma and young people.

I go by numbers- or at least try to. I find if I can see a number and see that it is ok then I am ok and I can relax a little. If I see a bad number I find it almost makes me worse because I know things are not good. However I learned that in asthma particularly in young people a high oxygen saturation for a prolonged time can be a sign of worse to come. I never realised younger people had a bigger oxygen reserve and could have an asthma attack but maintain good oxygenation for a longer period of time. As good as having a reserve is many nurses will worry. I remember this so well, my nurse was in a little panic. I was quite happy as I was in a side room however had said my chest was feeling tight and the effort of breathing getting harder but I knew my jobs were ok as just had them done. I thought I would have a nebuliser and hat would be that. I was shocked when the nurse rushed out and got her colleague and they moved me straight away to the high care bay. The reason being the nurse recognised that I was using up my reserve and she was right. It was not long before my oxygen saturations dropped and I was taken to ICU and put on a non invasive ventilator. Thank goodness for her experience and recognising the signs and a bad situation was averted.

This is what so many people don’t understand with asthma though and probably why the statistics of hospital admissions for exacerbations of asthma and asthma deaths are so bad. Most consultants or GPs will not advocate for their patients to have a portable pulse oximeter at home because by the time oxygen saturations drop in an asthma attack you should be seeking medical help. The first sign of a severe asthma attack is a drop in peak flow but also a slight drop in carbon dioxide level on an ABG. When struggling to breathe your first instinct is to gasp and breathe more causing this initial drop in CO2 but as your airways become tighter and tighter your struggle to get rid of the air you breathe in and your CO2 will start to rise and oxygen will drop. Therefore if you are waiting at home till your oxygen levels drop your taking your life in your hands and risking serious consequences.

The other problem with pulse oximeters is that they are highly unreliable and can be effected by so many external factors. When in hospital you will always have your oxygen levels measured with a pulse ox however they will also be  confirmed by having an arterial blood gas which will give your true oxygen levels in your blood. An ABG can also tell medical staff about how unwell you are and how hard you are having to work with your breathing.

I can totally understand why many people will delay going into hospital despite feeling awful and really struggling to breathe. My feeling is that many Drs and Nurses will take a set of observations and will show the patient the machine and comment that their oxygen levels are good so they are doing ok. They may have good oxygen sats but you can still feel terrible. This comment about having good sats can often make many feel that maybe they shouldn’t be in A and E because the staff have said they are ok. The staff will be saying this to reassure the patient and not suggesting that they shouldn’t be there but it will often feel like that to a patient. This highlights how simple phrases can be taken in so many different ways and different interpretations made from them.

I guess the point of this post is that I want to highlight just how bad asthma can get and how not to rely on a pulse oximeter at home and get help once your oxygen levels start dropping. Even if you hate hospital (as practically everyone does) or are fed up going it is better to go often and get a small amount of treatment to regain control of your asthma than wait till your really ill and in grave danger which requires a huge amount of medication and interventions from Drs and Nurses to get you back to feeling well. It would probably turn out that if you add the hours up that you spend going to hospital or a Dr to treat a mild to moderate asthma attack may very well still equal less hours spent in the hospital than you would if you waited till you were really un well.

Having said all this I must confess I do have a pulse oximeter of my own at home. A previous consultant gave me one but I now use it to monitor my heart rate which seems to go from anything around 110 to 180 when it feels like. Most of the time I have no idea where my pulse ox is and don’t use it very often at all.

If anyone takes anything away from this post it is to get help early for your asthma attacks. Don’t wait until you think a Dr might take you more seriously because your oxygen levels are bad. They would prefer you to come early and get treatment and get home (the cynical side in me would say that this makes Drs lives easier and they don’t need to do so much work this way too!!!).

Was it just an April fool or are the NHS sites going smoke free?

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Driving into work yesterday a lot of the news on the radio was about the NHS sites are going smoke free, meaning no one is allowed to smoke in or around the hospital sites. For me this was great. It meant going into to work and not worrying about walking round the entire site to find a door where no one was smoking outside it and having to walk through a fog of smoke potentially causing me a life threatening asthma attack.

But…

As I left my car in the cap park to walk into the hospital I wondered if it was a big April fool. I passed more people smoking as they left the hospital to the car park than normal. Going from the hospital to the car park is all hospital site. No one seemed bothered that they were smoking. No one was patrolling to stop people smoking. Maybe it is just a big April fool giving so many people false hope. The hope that they can move around there work place without navigating and avoiding all the smokers hot spots.

At lunch a few were saying it is ridiculous they have to go of the site to smoke because it is hard to go without a cigarette when you smoke. My argument is that smoking is a choice. You choose to smoke. You choose to risk addiction, you choose to smell of stale smoke, you choose to waste your money, you choose to risk long term damage to your health.

But ultimately you choose to risk the lives of other people who you subject to your smoking or stale smoke left on your clothes.

When you have a condition that effects your breathing through no fault of your own, you have not inhaled toxic substances or abused your lungs, but your lungs are just rubbish you do all you can to look after those lungs and protect your breathing.

I don’t have a choice about how my lungs are. They are just that way.

You do have a choice, you have a choice to preserve your own lungs but also the lungs of others.

You can’t see chronic breathing conditions. You don’t know if the person walking past you may end up in the high dependancy because of the smoke from your cigarette. You don’t think about that. All you think about is getting your nicotine fix, and that trumps all your other thoughts, thoughts that you have when at work about saving people or getting them better or what it may have been that caused them to become so poorly.

I know some who read this will think it is totally over the top and I should not get so wound up about people smoking on or off a hospital site but this is the real way I feel. Living in fear knowing someone else actions which won’t effect them can be devastating for someone else shouldn’t happen. It does and will continue into the future.

I have many friends who smoke, family members who smoke and have had partners who smoke and none of them really understand the full impact their habit has on me. Even the smoke lingering on their clothes can leave me needing my inhaler. I hate making a fuss about it and in this post it is the only real time I can express exactly how I feel about it and its impact on me. Many just think take your inhaler it will be fine but its not. And if those closest to me don’t understand the risks then how will anyone else.

My main point is that smokers have a choice no one forced them, those with difficult asthma and CF etc do not have a choice. I often ask why did I get the rubbish lungs. Why not give them to someone who smokes..its what their lungs will end up like in the end. A smoking habit will leave you gasping for breath, chronic chest infections, a persistent cough, and lungs which are so poor at turning oxygen into carbon dioxide that too much oxygen can be more dangerous than low oxygen. I do not wish this on anyone but in my dark moments when I struggle to breathe and every little thing takes so much effort I do think why me? what did I do? Part of me sometimes wonders that perhaps if I had smoked or inhaled a toxic chemical or something then at least there would be a reason and a cause for my asthma being as it is but there is not. Most of the time I can deal with this but on some occasions it is really hard.

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(do you want your lungs to look like the ones on the right??)

If you smoke, try jumping ahead 30 years and see what your breathing will be like- put a close peg or something on your nose to stop you breathing through your nose and get a small plastic straw to put in your mouth and breathe through, now run as far as you can and see how difficult this is. You can take the close peg off, you ca take the straw out your mouth, you can breathe normally do you want to have a future where you can’t escape from breathing like that?

 

(I apologise for the way this post has come out. I am not aiming to attack smokers although reading back it does seem that way. But these are my true feelings and I have to be honest. With all my posts I never alter what I have written other than correct any spelling mistakes and grammar but thats it. I don’t change what I have written as what I have written comes from the heart)

Guest Blog from Wendy

Continuing with the guest blogs this next one comes from Wendy. Wendy too suffers from more severe asthma aka Brittle asthma. I got to know Wendy I think initially through AUK perhaps and latterly on asthma groups. I think Wendy’s blog was one of the first blogs I started reading many many years ago and took comfort knowing I was not alone in my struggle with my asthma. Here Wendy shares her story.

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When you see me in the street, what is the first thing you notice about me? Is it something cosmetic like my eyes, hair, facial piercings and tattoos? Is it my style of dress? Or, is it that I am sat in my wheelchair and wear an oxygen cannula? Many people stop and stare at me in my chair and whisper to themselves. Sometimes though, people ask me about what it is, what it does and why I have to wear such a thing. The simple answer is this, I have severe asthma.

When I was first diagnosed that my asthma had well and truly returned (as my asthma followed a rather atypical pattern though my childhood and only started to re-emerge when I was about 15, then it went away again for a few years) I was 18 years old. I had developed this weird cough, which never went away, and sometimes I got out of breath just doing what was normal for me back then, things like singing in a band or walking around to the local guitar shop/practice rooms. Back then I never realised just what path my life was about to take. I remember taking the first ever puff from the blue inhaler I was given and thinking “OK, so this is going to be part of my life from now on” and for a while, I was constantly back and forth to the doctors to find the right treatment. I was sent to a consultant who did tests to see what my lung function was (back then, it was 89% which is very good) and I was given better inhalers and Singulair tablets, and for many years, that was enough and I was able to enjoy the rest of my teenage years.

Although, sometimes, as hard as I tried, I still had severe attacks every so often but there were only 2-3 of these in a year. I’d go to A&E, given nebulisers and sometimes the odd steroid injection, pred and other medication and I would be fine. I even used to work as a cleaner at the local hospital and for a time at a bowling alley with dreams of starting my HND in Media Studies and getting my own place. At age 20, I finally started on that path and I remember the day I moved in to the first flat of my own. I’d been to view the place and had fallen in love with it. It was an attic room with its own separate bathroom (which was almost as big as my room but was weirdly laid out, also I used to pile my washing up in there and do it on the weekends, which was always a bit weird but hey, for nearly a year it worked). The view from my bedroom window (well, the big one) was always a stunning lookout at the woodlands. I was so happy and I was so ready for my life to begin.

Unfortunately it wasn’t to be. I won’t bore you with the intricacies of who did (or didn’t) do what and when or what could have happened/should have happened. Those things aren’t important now, all that is important is that due to poor care in the beginning, consultants not understanding and trying to deny asthma as a disease and chronic infections my life is so different to what a typical 27 year old would be. I am on over 20 different medications, including oxygen, nebulisers and countless tablets a day. My lung function is 30-40% on a good day and I am reliant on carers to look after myself effectively.

The problem is that a lot of doctors are dismissive of asthma and how it can affect the lives of us who live on it. It’s a horrible and limiting condition and has changed my life so much over the last 7 years. Had I known sooner any way of preventing this, be it from pushing for better diagnosis sooner (all too often, people are too intimidated by doctors because they believe that the doctor knows best) then maybe I would have been spared the end result. It took me years to get my voice heard and it wasn’t even noticed until I had an attack which could have killed me.

I will never forget the first ever “life- threatening” asthma attack I ever had, well what I know about it. The first time I ever had a “life-threatening” attack, I was 21 and I had been staying in a squalid flat with my boyfriend at the time (we found out later that I had severe bilateral pneumonia which had been caused by this place). I remember during the day, we went out to town and I brought some models, whenever I see them I remember that day, and we were returning to the place when I was showing signs of not being well. I had decided to take a nap and then I woke up in a white room. I had a team of doctors around me, all talking indistinctively. My top had been cut off and my chest was bruised from compressions. A nurse was behind the bed holding a mask on my face and squeezing a bag to breathe for me. I found out later that they were moments from intubating me; I’d stopped breathing in the ambulance and they were worried that my heart was going to stop. The next thing I remember, I woke up properly a couple of days later on a ward with a nasal cannula on and being told that I was lucky to be alive. I’d apparently slept straight through and they were looking to move me from HDU to ITU. When I eventually left the hospital, I remember how it took ages to build my strength up and I had missed 2 months of college. But it opened my eyes.

Asthma is a real condition. It devastates lives and can kill. If doctors looked at it and saw it the way the people who live with it see it, then I honestly believe that the mortality rate and negative impact the illness leaves us with would be significantly reduced. Please read this as a cautionary tale. Don’t ignore asthma.

Wendy Bostock

(Author of “My Journey Every Step of the Way.”)

Go and visit Wendy’s blog at: http://myjourneyeverystepoftheway.blogspot.co.uk