What was your first asthma attack like?

Short answer: the most terrifying thing I had ever been through.

So often I get asked what is it like to have an asthma attack, how does it feel during the attack, how do you feel after, what does the medication do. The questions are endless and sometimes bizarre.

One I get asked most often is when did I have my first asthma attack and what was it like?

I don’t remember the first attack I ever had. I was very young and it was when I was diagnosed with asthma.

What I can tell you about is the first attack I can remember that put me in hospital- it is one that is pretty hard to forget particularly when waiting to be discharged!!

I was at boarding school and must have been about 13 or 14. My asthma was causing me problems which resulted in an attack during the night. Having an asthma attack in a dorm with 5 other girls is scary. I didnt want to wake anyone up because I was having an attack and thought I could handle it myself. Eventually after lying in the dark for what seemed like ages I woke someone up who got my house mistress to come and see me. She also got the school nurse who took me to the med centre. The attack didnt ease up so I had to go to the hospital. Trouble is the town my school was in didnt have a major hospital so I had to go via ambulance to the  nearest city.

I remember the ambulance ride vaguely. The main thing I remember was my house mistress also in the ambulance trying to comfort me and tell me I would be ok while the paramedics kept hooking me up to machines, giving me oxygen and nebulisers. It was the middle of the night and I remember the blue lights flashing and the siren going off periodically.

It is strange because the actual attack I don’t remember much once I got to the hospital except for a few things.

First was being given IV hydrocortisone. The side effects of IV hydrocortisone are different now but back then I remember a hot flush all over my body and then the feeling of needing to pee and it felt like I had wet myself. I was young and embarrassed so I couldn’t say anything to anyone. I was sitting there thinking I had wet myself and praying for a moment when I was on my own and I could check if I had. No one told me about this side effect, in fact no one told me about any side effects.

Once my chest had settled down my housemistress went back to school and I was told to try and get some sleep. Sleep in a hospital. No chance that was happening. I was on an acute medical ward with mixed sex bays, very young (I’m not sure why I was not in paediatrics) and very scared. I really wanted someone to be with me, when my housemistress was chatting to me I longed for some peace and to be on my own but once she went I wanted to have that mindless awkward chat back. My mum was coming up from Edinburgh in the morning. I don’t think I got any sleep that night but then over the years I don’t think there is ever a time that you get a full night sleep when you are in hospital!

Waiting for ward round is  always apprehensive as you are hoping for good news. Hoping that the Dr’s don’t hear a whistle in your chest, hoping that your peak flow has increased and that they think you can good to go home. Hospital is full of all walks of life and all things happen. Etched into my brain was a site I sat that I was not able to unsee. At the time I found it quite traumatising but now I don’t find it as bad and more feel sorry for the person. The sight was seeing a man trying to escape the ward running down he corridor in a gown which was not tied up showing everything for all to see. If that was not bad enough he was also trailing a catheter bag (at the time I didnt know what having a catheter really meant but now I do and I know just how painful it is if it get tugs and I am female) and was also attached to a drop that was also being dragged along behind him. It was really traumatising and because of this I was allowed to be discharged home when the Drs saw me. I did have to go and be seen in Respiratory clinic in Dundee though fairly regularly but that is a small compromise to getting home.

Although this was not my first asthma attack it is the main one that comes to mind when i think back and also the first one that I remember being in hospital for and recalling details about it. The photo at the bottom of this post was one of the only photos I could find from school that I could post. It was just after I won the 1500m race at school sports day but I think the look on my face is pretty similar to the look on my face when I was recalling the man running down the ward.

One emotion that is present when I think back to my different asthma attacks is fear. No matter how mild or how severe the attacks are I always have a fear that I cant breathe. To be able to have an asthma attack and not be scared is impossible. Often people tell me how great I am because I overcome my attacks and their attacks are not nearly so bad so cant complain to me about them but every attack is scary. For each individual person their worst attack is their worst attack and you can only compare attacks against yourself, you cannot compare your attacks to anyone else’s. Yes some people my have had their worst attack but that didnt result in hospital but it does not mean it is any less scary than one that puts me in ICU. It is all relative.

No one should compare their attacks to someone else’s. Your experience is your experience and no one elses. You can again knowledge and coping skills when speaking to others about attacks but it is not good to compare severity.

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Why does a journalist want to do a feature on his sister with asthma??

Recently I shared a link to a story my brother wrote. It was about me living my life with severe asthma.  He is a journalist with the Daily Record and is doing some pieces on asthma, smoking on hospital sites (one of my hobby horses) and some other things.

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(I apparently don’t have many photos of us together so this will have to do. Taking me off the ward when in hospital. I was lucky to get back to the ward alive with his driving of the hospital wheelchair!!)

I wanted to ask him a few questions (it turned out to literally be a few) on why he wanted to do a piece about me and my story of living with severe asthma. I am really proud of him for doing this especially as asthma is destroying so many peoples lives yet asthma is dismissed and not thought to be that serious by the majority of the population.

Below is his answers to my questions!

Why did you want to do the piece?

Without a doubt it was from seeing what you have gone through over the years, particularly in the last few when I have been around it more. It’s really not a well-understood condition from a layman’s point of view. People just think it’s ‘a bad cough’ or getting out of breathe when you play sport, but nobody sees the sinister way it can affect someone’s life.

Health stories are such a massive and important part of the media, particularly in how it can help activism and help push the conversation surrounding policy. I don’t think asthma gets the coverage it deserves. Talking to people who face a daily struggle with illness and putting their journeys in the public eye helps others open up and deal with their own conditions. But asthma suffers don’t have that voice like other illnesses like cancer or MS. Obviously as your annoying wee brother I have seen you at your best and worst with asthma, and it’s so inspiring. I wanted your journey to help others above all else.

On the other hand, it was so important to include the work you do behind the scenes for Asthma UK and other charities. Covering topics like correct techniques for taking medication and attitudes towards asthma help stimulate conversation, even on a day-to-day basis, from a light natter over Sunday lunch to discussions between health professionals.

How did covering the story affect your understanding of asthma?

Without a shadow of a doubt the amount of medication someone with severe asthma – and knock-on conditions – must take on a daily basis. I knew your asthma was bad through years of hospital visits and attacks, as well as using it to my advantage to beat you at golf (still not sorry). That hit home in a big way when you were placed on a ventilator recently – it was actually what prompted me to want to do the story. So I guess you could say that I knew how bad it could get before doing the piece, but only just before I sat down to write it.

But the medication routine was what really hit me hard. The sheer volume of treatments you have to take every single day was staggering, and shocked many of my colleagues. Knowing how you still get on with your life, throw yourself into activism and sport wherever you can, makes that even more staggering. To be taking 38 treatments daily at the age of 33 is mind blowing. I think getting that across to people really helps them to take it just as seriously as other, more talked about conditions

How do you write a blog post?

A phone call with author of Stumbling in Flats turned from working with pharma to writing in blog posts. A blogger for 13/14 years I have never thought about my blog posts and I have made it known that I just let my fingers do the work letting the words flow from brain to the page. I learnt some valuable information from that phone call.

A witty captive opening statement “Chocolate haunts me. Last night I dreamt a giant Jaffa  Cake chased me down the road

Im not sure I can do the witty part but I need to think about the opening statement. Something that draws people in and sets the scene of my post. I guess it is like basic story telling, a beginning a middle and an end. A story is only as good as its first sentence. If you don’t like it then you probably are not going to keep reading. A blog is just the same.

I also learnt that a post should be able to read stand alone and the reader will know what  you are talking about and not need to read every blog post you have ever written to know who you are and what your story is!

A good about page is also essential. I must update mine ASAP. The fact that I cant remember when I last updated it means it needs updated urgently!!!

The last point was post length. Set a limit. 400-500 words is about right. There are some posts where I ramble on- often when I am trying to tell a story to get stuff off my chest or just to get something off my chest!! Strange to be saying that I write to get stuff off my chest when all my problems occur because of my chest!!!

Here’s hoping for some new and captivating blog posts that I can still get the same positive relief from personally and that people might read.

I started my blog because I was struggling to deal with the impact my asthma was having only life. This was a time when blogging was not such a big thing, social media was in its infancy and smart phones did not exist. As technology evolves so must we. Blogs have so much impact on people within the chronic health community and also those who are affected by it wether that be family, friends or even those working in the medical field. The one thing that is still the same to some extent is that I still blog to help myself deal with the impact asthma has on my life.

Making asthma visible

Today my youngest brother published an article for the Daily Record. Out of all my siblings he has probably seen me at my worst. He has been there when I have been in tears because registrars cant get an arterial blood gas and they are getting stroppy because I kept flinching when they hit the nerve or worse the bone or visited me when I was in hospital down south and he was still a school boy. He has known about my passion for the issue of smoking on hospital sites as it has caused me so many issues and latterly when my asthma has stopped me doing more he has taken an interested in the work I have been doing to try and raise awareness about asthma and how severe it can be.

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It is a really hard read. Seeing everything down in black and white in one place about how asthma has controlled so much of my life. I feel bad that this article has upset so many. I know my mum was fairly upset as she has obviously been through it all with me and then Nick as well. He has lived with me and yet he didnt know or understand just how bad it can get.

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I know others who have asthma just like mine and have asked if it is ok for them to share this article. I want everyone to share it. If it can show people just how serious asthma can get then I want everyone to see it.

I have kept this blog for so long and written about how asthma has affected me, what being in hospital has been like etc but I never read back over my posts. Not one post has been proof read and thats how I like it. It keeps the emotion real and honest.

I am really proud that my brother has decided to take this on and try to help people realise how serious asthma is and that you cant always see the true effects that asthma has on someones life. It is sad that it takes shocking stories to highlight the devastation that asthma can cause.

 

Recovery- its not easy and so frustrating!!

One thing I have become very aware of is how we adapt to recovery in different ways. This last hospital admission has really highlighted that to me as recovery has been far from straight forward and a totally new experience for me- even after getting my knee operated on was easier than this.

Previously when discharged from hospital  including critical care admission I have been focused on rehabbing my lungs and getting myself back to my baseline so I can get back to work and back to doing the things (I know there will be many reading this laughing saying I run back to do all sorts before I am ready and need to take more time- my family mostly).

The physical insults on my body as a result of a severe asthma attack are normal. The dot to dot of bruises were there have been attempts at bloods being taken, injections, arterial stabs and then of course the cannulation attempts and the effects of keeping that cannula in for 10 days (7 days longer than meant to but it still worked so it was staying put) because despite the burning while the potassium, magnesium, salbutamol or aminophylline going through it still worked and you could take a decent rate of fluid going through it, but these all fade. The battle wounds disappear not long after getting home. They cause no real pain and do not last (except a few scars but you don’t notice them).

This time it feels like everything has been flipped on its head. The physical insult is still with me and will no doubt be with me for months and as many people have told me it is likely to be a painful recovery. This is a totally new experience for me. The physical insult is still visible as well. My leg is black and blue which seems to be getting better now but it is taking its sorry time. This is the only outward sign from my last admission.

To look on the positive side of having a foot which I have no feeling or sensation in, a leg that has this burning nerve pain that sears through it any time I move has meant I have been resting….ALOT. I have been confined to sitting or lying as much as possible. This has been fantastic for my lungs and post hospital lethargy. My mum commented how much my lungs have recovered from this admission but it did not escape her that i have had an enforced rest due to my leg being in such a state.

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It has really broken me not being able to just bounce back, even being able to just get back and have independence. When you are unwell in hospital it is ok to ask for help for things like getting about, up to the toilet or even help with a wash but once home these are tasks I feel I should be able to do without thinking. If I need to get something I now need to think about it:

  • what am I getting up for
  • do I have my leg brace/ splint on
  • is my stick near by
  • what else do I need to do while I am up so i can limit the pain that is induced by moving

Mentally having to think about everything you do it tiring. Small things like going for a walk are exhausting. I have to concentrate so hard paying attention to what the ground it like I am walking on, where I am putting my foot and if there is a handrail or something else to hold on to while going up or down a slope or stairs.

I know I need to be really thankful I am alive and able to be at home etc but it is so hard some days watching the world go by, friends moving up the career ladder, going on wonderful holidays, starting families and I see myself going backwards. I have less and less freedom, reliant on so many people, yet back away from so many people because who wants to be around a 33 year old who cant even look after themselves properly and do the things that every other 33 year olds do.

But I have a lot of things to be positive about and have ideas in the pipeline about how to improve my life, get myself back on track and really do some work to try and get more people to understand asthma and all that goes with it. I never thought asthma could do what it does. It is all the secondary impacts it has on your life that are not spoken about and are not known.

I need to keep finding the positive each day and go to bed knowing I have done something productive with my day even if I have not gone outside or interacted with anyone.

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While I breathe I hope.

We need to stop Mepolizumab

Under a month ago I was writing about how I had been a year on mepolizumab. The drug that I thought was going to be my wonder drug and make my asthma easy to control or so I thought. You can read the post here.

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Part of me wonders did I know deep down that I would be stopping this treatment? I know in my last clinic I had asked my consultant if he thought I was benefiting from getting the drug. He outlined why he thought it was worth staying on it so we agreed I would stay on.

In just a few short weeks after that clinic and chat the words came out my consultants mouth that I didnt want to hear. He said “we are going to stop the mepolizumab treatment because I was not getting the results he wants and while on it I have had some of my most severe attacks”. He felt he could not justify me staying on it as I was still struggling so much and my attacks were getting worse again. He is also concerned about all the other issues I am having with my body which he cant say are due to the mepolizumab but equally he cant say they are not. He is worried about the unknown side effects from the drug due to it being so new.

To say I am gutted is an under statement. It was meant to be my wonder drug. It wasn’t as much as I try to convince myself it was working I cant be sure. It did reduce my eosinophil count which is the only result we can see conclusively that changed once starting it. Otherwise the things like recovering from attacks and bouncing back from colds quicker I cant say are due to the mepolizumab or if they are due to not working in the hospital. I cant say either way. I wish I could say it was due to the mepolizumab but I cant.

So what now??

This was the first question I asked my consultant as once again I feel like I am in a constant state of limbo, reliant on oral corticosteroids which have the be reduced but any reduction exacerbates my asthma again so I will be searching for that drug which can offer me stability. If only prednisolone did not have such awful side effects and you could stay on them with no worries- that would be magic!!

The good news is that there are new biologic treatments out there. There is Fasenra (benralizumab) which I doubt I will be eligible for. I am excited about the results people have been getting from Dupixent (dupilumab). In the UK dupixent is currently only allowed to be used in patients with skin conditions but over in the States there has been a lot of success for people with aspirin sensitive asthma. I hope that perhaps dupixent might be approved for use in asthma because I think the main issue which makes asthma control so hard to achieve is being anaphylactic to salicylic acid- a compound of aspirin which naturally occurs in just about everything.

Until then I just need to sit tight, do the best I can to keep my body as healthy as possible, minimising the risk of attacks and focus on getting better and have a positive mental attitude.

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.