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.

Getting it right for a newly diagnosed asthmatic.

Having a conversation with a friend this evening and I was so shocked to hear about her recent experience being diagnosed with asthma. A prolonged cough, wheezing and breathlessness the GP was unable to get on top of things so she was referred on to the hospital to see what was going on. Lung function was not too bad but a very high exhaled nitric oxide test resulted in a diagnosis of asthma.

My first thought was that it was good as she had been started on a preventer and reliever. I didn’t think to ask anymore questions really. She was finding her chest much easier after using the preventer for a few weeks and had very little need for her reliever.

I had made the assumption that once diagnosed she would be given asthma education, told about what signs and symptoms to look out for, what to do should you feel unwell and above all be shown how to take the inhalers both of which are meter dose inhalers (MDI) or the skoosh down inhaler that most people will think of when they think inhaler.

Anyway tonight after a quick question I discovered how badly the diagnosis and management was done. I realised that no asthma education was done, no inhaler technique and she had to ask for a spacer to use her inhaler with as one was not prescribed in the first place. I was horrified that she had not been shown how to take the inhaler. It is an MDI notoriously the most difficult inhaler to get the correct technique and the correct dose into the lungs!

It is so shocking that still new people are being diagnosed with asthma and not given the correct education or support. I am more than happy for friends and anyone really to ask me questions about asthma but surely it should be the asthma nurses or GP’s that give this information when diagnosing. Asthma is in the press enough just now as the asthma death statistics in the UK seem to be getting worse not better and it is among the mild to moderate asthmatics who are dying and most likely due to one of a few factors:

  1. poor inhaler technique
  2. not regularly taking there inhaler as prescribed
  3. not knowing the signs to look out for and take action when asthma control is deteriorating.

I keep going that the research being done will soon filter down into actual practice and asthma management will change. Time spent at the start can help reduce work load in the long run.

Asthma UK has a variety of different documents that can be downloaded to help asthma management and there is no charge so really there is no excuse for people with asthma to not be given the asthma action plan personalised to their needs.

Basic asthma care is essential is we want to achieve the aim of zero tolerance to asthma attacks.

 

Asthma a rare disease??

On the 29th February there was an awareness day for rare diseases. Asthma is one of the most common rare diseases out there. Its rare in its own very special way. It is not in the same category as some of the obscure disease like EB or Battens which are rare due to so few people suffering from them.

You may think asthma is not rare.

One in twelve people suffer from it, every day 3 people die from it, every hour someone is admitted to hospital having a severe asthma attack…so how can it be rare.

I class asthma as rare because despite the prevalence of asthma it is the most complex and poorly understood condition around. Academics spend careers trying to find a cure for asthma, or a new medication to help in the management of asthma but they often never fulfil those ambitions. It is not through lack of trying but due to a lack of funding and awareness of what actually is asthma and what can it do to people.

The common misconception is that a blue inhaler is all you need and all will go away but this is so wrong. Attitudes need to change. Despite the huge numbers of people who suffer from asthma there is the least amount of funding for it. In the research world it is not a sexy enough condition to warrant huge funding grants yet it can be just as devastating as someone who has cancer. The difference being that with cancer there is the option of surgery, chemo or radiation but for asthma there is none of these things. There is nothing that could potentially make it go away. I am not trivialising cancer as it too is devastating but from the outside there are some options to some patients but for asthma it is all about management not cure.

For many with asthma fortunately they will go large periods of their life without much bother from their asthma but there are those who fight each day, have a strict regime if medication to keep well, have to avoid certain things and adapt their lives to fit their asthma.

What is it that needs to happen to make asthma be noticed, and the general public take note and start fundraising, or insititues allocate as much money to asthma research as they do cancer, stroke or cardiac issues.

I long for the day where people stop saying I know someone with asthma they just have a blue inhaler and thats all you need. I get frustrated with people who drown themselves in perfume and then say they are feel asthmatic, they have no idea but sadly until even those with asthma take steps things are never going to change and how can we expect them to.

I guess this is why I think asthma is rare because it is so complex and so poorly understood. I submerse myself in all information I can find yet I still don’t fully understand my condition- a condition I have had for 28 years.

 

In other news I have been back to work now and managing ok. I feel exhausted at the end of the day but enjoying being back around my colleagues and having a purpose to my day again. I have found it tough but onwards and upwards and I am sure all will be ok.

Next week there is the Cross Party Group meeting at the Scottish Parliament for Asthma which will be good to go to. It will be nice to see people from Asthma UK again as well as listen to speakers from the FARR Institute and listen to Aziz from AUKCAR and Sam from Asthma UK. I am looking forward to seeing the MacDonald’s again. I met them at the end of last year after their daughter tragically died from an asthma attack in her sleep leaving her wee boy in their house. he is now looked after by her parents his grandparents. I am looking forward to seeing them although I did find it hard last time listening to their story about Lydia and her asthma attacks as they are so like my own. I am not sure how I will be at the CPG as still coming to terms with the attacks from the start of this year but I must be strong and think I am still here and they don’t need to see me upset.

Anyway here is a photo from today with a wee chappy who never fails to make me smile!!!

 

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#aukcarASM15

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The last few days I have been down in Manchester at the Annual Scientific Meeting for the Asthma UK Centre for Applied Research. It was a great few days. all kicked off by an entertaining dinner with the centre director and post grad and network co-ordinator who learnt the value of Twitter and what you can do with it. It was with delight that one member found they were my top media tweet and wanted to retain this title for the whole meeting. (no one really knew what top media tweet was but battle had commenced).

I was particularly excited about the meeting for two main reasons because I was co presenting about @SPEAKAsthma and also I was going to hear Prof Iain Pavord talk who is in my eyes the asthma guru and brought Bronchial Thermoplasty to the UK. Listening to him talk was amazing. It gave me a renewed sense of hope that there were different treatments coming out for asthma, namely Mepolizumab. His different views on the use of oral steroids was interesting as I had always thought steroids would treat all aspects of asthma but now I know otherwise. It does make me question the role of oral steroids for myself. I have never been convinced that they are as good as medics make out. It will be interesting when I am next in clinic brining this information I have learned. Prof Pavord also knows my consultant and spoke highly of her. I think highly of her but that is because she has helped me so much, but when you get the top guy in asthma saying your consultant is good, she must be good.

Our talk about @SPEAKAsthma and a new project was great and we were able to show our recruitment video and a flipagram that we put together. I did get a bit nervous and stumbled over my words sometimes but I think the PPI Research Fellow I was presenting with caught my bad bits and saved me.

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Otherwise the meeting was good. It was different this year from last year in Oxford. I was very new last year and really didnt know many people but this year I have had the chance to work with a lot of people and met them over the year. This year we also had a big PPI presence as there were 7 of us attending. The great thing about the meeting and the centre is that they value PPI input so much and are really inclusive of it. There is no one who didnt make us feel welcome. Even at breakfast and  other meals they would stop conversation and welcome us and speak to us wanting out advice and input on their various projects.

There is so much to talk about in the meeting and way too much to put down on paper but my titter feed sums up the meeting as I tweeted throughout it. If you want to see go to @just_TUX to see my tweets.

The second day was really frustrating for me. It was really interesting but I couldn’t contribute as much as I wanted because I was up most of the night coughing and feeling really tight chested. It was horrible. I was determined not to let people know I didnt feel great but by the end of the day I felt exhausted and the effort of breathing was so much. I am really annoyed at myself for pushing through and not just excusing myself and resting somewhere. I have this bad mentality where I won’t let my health stop me doing things at any cost. By the end of the day at the train station on the way home I didnt have the energy to hide how I felt anymore and had to just sit on a bench and try catch my breathe. Once on the train it was impossible I felt slumped and had my neb. I must have appeared so anti social but I was spent and on empty. It was such a shame as the end of the last meeting was such a high and the train journey on the way back was full of chatting and discussing different things we were going to be doing in the near future.

I am really looking forward to the next few months. There have been lots of different projects that people want PPI input for and also the SPEAKAsthma group to which is exciting as they are still really new so the group is only just starting out but it bodes well if people are keen to speak with them and also have a group set up in London too!!! The future is looking good for SPEAKAsthma and PPI!!!

A mutual understanding with Asthma UK

A while ago I posted about how angry and disgruntled I was with Asthma UK. They had taken the decision to close their offices in Scotland, Wales and Northern Ireland. To say I went off the deep end would be a small under statement. I felt hurt as it was the Asthma UK Scotland office who effectively without knowing changed my life around. You can read my blog post here 

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But now I feel I need to post with where things are now. The offices have closed but after the weekend in Manchester and meeting with people from Asthma UK at various different events over the past few weeks it has given me the opportunity to speak to them about how I feel and where everything is going.

I think and I hope Asthma UK believe we have a mutual understanding. I am very upset that the office had to shut but now understand why they had to do it. The economic climate in the UK is not favourable for charities particularly small charities like Asthma UK. I had not appreciated the cost in running a charity and having offices in outlying countries. It is extortionate. A charity which generates on £9 million a year for a condition/ disease which effects 1 in 10 people is shocking and there is no wonder why they struggle to do all they want for asthma and those who have asthma. Until yesterday I never realised the KICK Asthma weekend I went on when I was younger would cost £20K just to put that on. These are figures you don’t see. I took Kick Asthma for granted- I got so much out of it but never appreciated the work that went into it and the running cost.

The opportunity to speak to various different people from the charity was really beneficial. They reassured me that Scotland would not be forgotten about and they will look after Scotland. My understanding is that there were more than just me who were upset but I hope that the energies of those who are upset can be used to the positive and be the people in Scotland to raise the profile of asthma and Asthma UK. I want to make sure that Asthma UK know what is happening in Scotland and in doing so this may generate more income and enable Asthma UK to have an office in Scotland again.

What we need to be aware of is that there is nothing to be gained by being annoyed or upset at what has happened as it is now fact but use this and change the situation to the good. Put asthma on the map and it may put Asthma UK back in Scotland with added income and resource. By understanding the whys I can clearly see there was a massive gap in resources- I am still sad and always will be but I can’t let this sadness cause a rift between me and Asthma UK and therefore be detrimental to all aspects of asthma awareness etc as I want to continue in doing all I do and maintain a good relationship with the charity.

I am very grateful for having the opportunity to speak to various members of the charity over the last few weeks and hope others can join with me in Scotland and continue to support Asthma UK.

A big thank you from myself and Karen

Myself and Karen (Captain at Craigmillar Park Golf Club) want to thank all those who participated, volunteered, donated prizes, and helped make the day such a great success. A huge amount of money was raised and it was way above our target but the money everyone donated and help raise will go towards ground breaking developments in asthma research to help produce new medications to help everyone with asthma. A thank you to Lisa who introduced our video and her son for his expert filming!

Everyone knows someone with asthma but not everyone knows that 3 people die every day from an asthma attack. Since the publication of the National Review of Asthma Deaths in 2014 there have been approximately 1600 deaths from asthma in the UK. This number is far to high. I owe a huge thanks to all those who have helped save my life when been admitted to hospital and ended up in intensive care or high dependancy but I have ad some friends who have not been so lucky and have lost their life to asthma. The public perspective of asthma needs to change as many think asthma is just about taking a blue inhaler but it is far more than that. I can control and dictate your life in ways you never think are possible. Even those who have mild asthma and will never think they are at risk of a life threatening asthma attack but they are, anyone with an asthma diagnosis could potentially be at risk from asthma.

Please watch our video below.

Craigmillar Park Charity Golf Day 14th August

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On Friday Craigmillar Park Golf Club hosted a charity golf day to raise money for Asthma UK. Golf club Captain Karen wanted to host a charity day and the fact that she chose Asthma UK was brilliant. She had said she never knew how bad asthma could be until she met me. I still can’t quite believe that the chosen charity chosen was Asthma UK.

Despite some very wet weather the day went ahead and it was very successful. With players arriving at 8am for bacon rolls before taking to the course to compete in a variety of different challenges- ranging from closest to the wiggly line to beat the pro. Raffle tickets were purchased by the dozen and the mulligans on offer were a very successful sale with just about every player buying them (only 3 per player and not to be used on the green!!). Golf was followed by a balloon raffle, lunch and presentation of prizes.

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For me the day was a real mix of emotion. I was so proud of my club hosting the charity golf day, proud of my captain for choosing Asthma UK and all the help which members of the club put in either by setting up the night before, rules official, manning desks, selling raffle tickets, car parking attendant, entering teams, getting prizes the list is endless and there are not enough thank you’s I can give to let you know how grateful I am.

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The day also brought sadness. After the lunch a video was shown about a young girl who died of an asthma attack and why it is vital to raise money for new treatments and the potential to find a cure. The video brought back my own experiences of life threatening asthma attacks, ending up in intensive care and fearing I have no more energy to continue breathing. It not only brought back my own fears but the memories of friends who I have made but have then died of asthma attacks or the consequences of. One particular person Dawn (pictured below) who taught me to follow my dreams and gave me so much encouragement when times were not great and I had long spells in hospital. She sadly died and it was such a waste of such a caring, charming, compassionate person. Asthma should not have killed her but it did and it is people like her I do all I can to raise awareness of asthma and just how much destruction it can do.

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I briefly spoke about my relationship with Asthma UK and asthma. I find it easier to show my relationship in pictures. You don’t always look ill with asthma unless in an attack. You can’t see diminished lung capacity and function, or the medications needed to keep you going. Instead I showed it in pictures. A collection of pictures from being in hospital, being at home and also my medication. Its a side of asthma that is kept behind a closed door. I think this is the most powerful way to show just what asthma can do.

When setting out the host a charity golf day we had a target of about £4000-£5000 and part of me didn’t want to put my hopes high. Asthma is not one the “sexy” diseases which gets loads of funding from donations. The lack of money in asthma research has meant that in my lifetime there has only been 2 new medications developed which I take but I still end up in hospital. No one really knows how serious it can be unless you know someone or have witnessed someone suffer a severe attack. I don’t think it has sunk in just how much money everyone donated on the day. It was not only the monetary donations but also the time put in by everyone. The total amount raised has not yet been calculated but we have superseded our target.

 

 

 

 

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(setting the balloon with AUK sticker smiley face into the air (not successfully) but I thought of those who I know who have died from asthma attacks and wished something too!)

The emotions from the day have been playing on my mind a lot. It has brought up a lot of memories I had intentionally buried and not want to deal with as they are too scary and also bring the reality of my situation to the forefront. My asthma is so much better now but is it better because I am not doing anything anymore or is it better because it is actually better and I can start pushing my body. It is like testing the water and seeing what I can and cannot manage.

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I owe a huge thanks to Janet (pictured left) and her PA who went above and beyond with entering teams, printing flyers, getting prizes donated. Thank you Janet!!

 

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Me and Captain KB at the end of a very successful day.

Thank you all once again. Look out for the final total raised.