The Verdict!!

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I have been fairly quiet recently mainly because I was terrified. I have had 3 doses of Mepolizumab and was due to attend clinic and see my consultant for the verdict and find out if I am staying on it or not.

The good news is that I am staying on it for now.

Clinic went well. I am so glad that I had that horrific hospital admission that made me decide to change consultant because it has been the best thing I have ever done. It has come with some issues but overall it has been one of the best things I have done.

I had lung function and FeNo both of which were marginally better but what I have noticed is that I am more stable overall. Recording my peak flow has been super helpful and I can identify what causes were when they dropped whereas before I had no idea and it was all over the place. I would love my peak flow to increase but I am happy for stability over gains (gains are unlikely due to the fibrosis in my lungs now).

The other difference this consultant has decided on is with regard to my steroids. Previously it has been a rush to get me down to the lowest dose possible and see how I go but that has always ended up badly and I spend more time on higher doses and it felt like I was on a rollercoaster all the time. Now, as much as we want to get me down to a reasonable dose and hopefully off prednisolone (wish me luck) we are acknowledging what has happened in the past and he kept me on 20mg which felt like ages (3 months) and then alternating 20mg and 15mg daily (2 months) and now I am to stay on 15mg until February March time and then we will readdress reducing it further.

So many people have asked me if I think the mepolizumab is helping. It is so hard to stay. I think it must be as I have been more stable but I worry that this is due to the prolonged prednisolone and super slow reduction but what I am hoping that it is a combination of both. I guess the time to tell what is doing what is if I get unwell (touch wood I don’t) and I can see how quickly I can respond to treatment and not need invasive treatment. I am aiming for this as know hospital is going to happen as my consultant has said this. He said he would have no worries about admitting me to hospital if either he or myself thought my asthma was not great.

We are also changing one of my inhalers. For the first time in as long as I can remember I had an outpatient clinic where my medications were reviewed and we looked at what I needed to keep taking and what could get binned. The only change he wants to make just now is removing the seretide inhaler and replacing it with Relvar a newer once daily preventer inhaler. He wants me to continue taking some extra fluticasone at night to tide me over as I still have quite significant dips in my breathing at night.

Im happy I now have a plan. Know roughly what is happening with my asthma and asthma care. Over the winter period I will be seen every 2 weeks. Monthly clinics with my consultant and then in-between I will be up with the asthma nurse specialists getting my injection and review there. Also should there be an issue I just have to call in.

The one thing out of all of this which I cannot let go of is why did it take throwing my toys out the pram and move consultants to be able to get in control of my asthma or have a plan to get control of it. I just want answers and I know I won’t get them but I am now trying the treatments I have been asking about for a good number of years. I know dwelling on it won’t help but when its your life that has been suffering it is hard.

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!!!).

A cure would be great but control would be better.

Anyone with asthma or even any long term condition wants a cure to be found for their condition. A cure would mean so much, less medication, no hospital appointments, less time miss off work, ability to get travel insurance, do the work you want, play the sport you want, sleep a full night, not feel isolated, be independent, no hospital admissions, able to not live in fear, have no fear of dying or friends dying, being able to have a life again.

However, as anyone with a complex long term condition knows a cure is not just around the corner. In my lifetime there has been one asthma specific new drug and another which can be used for asthma and allergies. That is 2 medications in 29 years. On average it takes 17 years just now to produce a new medication to treat asthma.

Yesterday I was at the Cross Party Group meeting for Asthma with Asthma UK at the Scottish Parliament which was a great meeting. It was focusing on the need for more research into asthma. It has been chronically underfunded for years and years. However after the NRAD report into asthma deaths there have been some fantastic opportunities for Asthma Research. The Asthma UK Centre for Applied Research was launched, Asthma UK is involved in the European Asthma Research and Innovation Partnership (EARIP) and asthma has become a condition which the FARR Institute is going to use as a blueprint for the way in which long term conditions are diagnosed, monitored and treated.

It is fantastic that there are some world leading researchers wanting to make a difference to lives of people with asthma. One thing I did notice yesterday was the focus on a cure which was talked about by one speaker. I would love for there to be a cure and for a reason to be found of why asthma is so complex and difficult to treat in some people. The more pressing thing is to find a better way to manage asthma. By managing asthma better the quality of many asthmatics life is greatly improved.

This is what I love about AUKCAR. I may be biased but they recognise the immediate need for asthmatics rather than focusing on discovering a cure. The need for better management, reducing hospital admissions due to asthma and the most important reducing asthma deaths.

By being part of the CPG and AUKCAR I can help make a difference. It may be small but small is better than nothing!