Severe asthma- family and friends misconceptions.

I was asked to write this blog post by Asthma UK as their report about severe and difficult asthma has just been published and the statistics are shocking. Asthma is not taken seriously or respected, some people don’t take their medication as they are meant to for a variety of reasons but this can be fatal. Those with asthma and those who know people with asthma need to understand just how serious it can be.

I consider myself very up to date with the latest asthma treatments, ensure I taken my medication as I am meant to and when I am meant to. I ensure I step up and step down my medication as my symptoms ebb and flow according to my personal asthma action plan. Even with my diligence to treatment and keeping myself well it is sometimes no where near enough and asthma wins over you, leaving devastating consequences such as death, the need for life support machine, very toxic drugs to relax the smooth muscle int he airways.

I have lived with asthma almost all my life. Over the years it has progressively become more difficult to control and severe which has impacted my own life and also my families lives as well.

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To manage my asthma I am in the very fortunate to have a team of specialists at the hospital who work hard to ensure I am on the best medication and most appropriate treatment aiming to control my severe asthma as best as possible. Despite this support and regular contact with the team my asthma remains severe to the extent I was put in a medically induced coma and was on a life support machine just under a month ago. I am sure if I did not have the team of specialists then there is a high chance my life would be very different if I was to have a life at all.

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Having severe asthma has resulted in many life changing circumstances from the sheer number of medications I require to control my severe asthma but then also medications to treat or prevent the side effects caused by the medication required to help my breathing. I currently take a total of 37 different medications, 14 of them are for asthma and 23 are for the side effects mainly caused by years of oral corticosteroids. I have also had to give up playing sport, change my career and now have had to give up my career, but the biggest impact has been on my family and close friends.

Living with severe asthma most of my life also means my friends and family have also lived with it too. They see how I try to manage my condition day to day, witness asthma attacks, call 999 for me when I don’t have the puff to call them myself, watch as helpless onlookers while an ambulance, with lights flashing and siren going, takes me to hospital as quickly as possible to stabilise the attack and make my breathing easier and then finally visiting me either in hospital or once I am discharged home. They see all this as well as my determination to manage my asthma desperately trying to ensure it does not take over and dictate my life. Despite witnessing all the above they accepted that this is what my asthma is like and that is that. An assumption was made that my asthma is as bad as it would get and my breathing wouldn’t get any worse than they have all witnessed. They thought this because I am under the care of a specialist asthma team who I can phone for advice whenever I am struggling which in my family and friend’s eyes means my asthma cannot get so bad that I may have a near fatal asthma attack.

My brother commented that he had become used to my asthma and almost complacent about how bad it could be. He said he has heard me speak recently of others who have died from asthma or friends who have been in a very serious condition but because I now have such a specialist team then I would be ok. It was everyday life me having severe asthma with the potential for requiring hospitalisation. He had taken this as normal and accepted it. So events earlier in the month were a huge shock and wake up call for the whole family because they had assumed I was safe with my asthma because I have some of the best people in the country looking after me and my asthma.

I look back now and see how my family normalised me being in hospital and me going to ICU so often which is really shocking. Going to hospital often should not occur let alone going to HDU or ICU that often. In any other health situation or if this was one of my siblings then it would not be just run of the mill and would be a life-altering event for the entire family.

My best friend who has known me my entire life and has been through thick and thin with me, seen me have asthma attacks and visited me in hospital never thought asthma could get as serious as it did during my last admission because I was under the care of specialists. She could not understand how asthma could get so bad when you are taking the latest medication that is available and have access to a team of specialists. She said she had never seen me look so unwell and vulnerable, not being able to do anything for myself reliant on others for everything.

The new report about severe and difficult asthma, which has launched by Asthma UK, makes me feel so fortunate to have such a good team and access to specialist asthma services to manage my asthma. Even with everything I have available my friends and family don’t fully understand how severe and life threatening asthma can be. I am sure if I did not have access to the specialists then asthma would have killed me. Everyone who may have severe asthma or difficult to control asthma needs to have access to specialists to help them live the lives they deserve to.

No-one is immune from a near fatal asthma attack.

Once again asthma has been in the press for all the wrong reasons. Despite the National Review of Asthma Deaths (NRAD) in 2014 it appears nothing has got much better. It was announced that asthma deaths in England and Wales (Scotland was not mentioned) are at their highest in over a decade. Over the years I have always asked why, why does asthma kill, why is asthma not well managed.

Well the other week I was reminded just how bad asthma can be and how it can never be under estimated. If asthma wants to win it will win despite all you do.

All the weather we have had recently has taken its toll on my asthma control. I tried so hard to ensure I was listening to my body, and make any changes that it required to ensure my lungs and asthma were stable. I found it very tricky to know what to do because unlike when you have a bad infection or cold you know roughly how long they will last and how much to step up medication to keep your asthma in check. This time it was different, it was the weather than was making life hard but it was not consistent. In the morning I was finding the weather was very muggy and humidity high making it feel like I was breathing through cotton wool but as the day went on the air cleared and I found it a lot easier to breath when the humidity dropped. It was like this for several days in a row and then perhaps there was a day where the humidity was ok. This made it a bit of a conundrum as to how to treat my breathing as I was not convinced an increase in steroids was going to help.

I reached out and spoke to my asthma nurse specialist at the hospital on the Monday. She gave me a plan which I followed however by Wednesday I was really struggling so I reached out to my consultant and spoke to his secretary to get some advice. I felt like I was in that limbo phase. I had increased my steroids on the Wednesday morning as per advice I got on Monday. I was finding it really hard going but was not at the stage of needing to call and ambulance and go to hospital but I need some help. Long story short I couldn’t get through to my consultant and then it was too late for me GP and there was no appointments so I was seen by the out of hours Dr who then sent me up to the hospital. From then it went downhill and went downhill very very quickly resulting in going to ITU.

I am going to do a separate post about the ins and outs of what happened when I deteriorated but with this post I wanted to focus on the importance of getting help.

Initially when I got better I was going over and over in my head trying to figure out what I missed or what went wrong for things to go downhill so quickly and escalate beyond measure. But there was nothing. I could not have tried to get any more help than I did, even getting help earlier would not have made a difference because the days before I spoke to the nurses the weather was ok and my breathing was not too bad (not great but not awful). The advice they would have given me would have been the same and that was to increase my prednisolone if my peak flow got to a certain level which I implemented when it did drop.

I consider myself to be some who has a good knowledge of asthma. I know about as much as I can about the condition. I take my medication religiously and don’t miss doses ever yet I was still able to have an asthma attack which was considered near fatal. There is a big push trying to ensure that people take their medications as prescribed and be vigilant with their asthma. Asthma is a disease that needs to be respected it does not stop and wait for anyone. It is important to remember that just taking your medication as prescribed does not make you immune from having asthma attacks. Getting to know your asthma, what triggers it, and what actions to take are so important. Had I not known all I do I am pretty sure that I would not be here.

I would urge everyone with asthma to make sure they take their medication as prescribed, know what triggers your asthma, have an asthma action plan and know when to get help and who to get help from. This really can save your life.

(I will be doing a further few posts about recent events. One which I will have password protected as it will go into detail about events in ICU etc and I know some may not want to read it. IF you want the password please do message me for it).