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

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.

 

Struggling to stay positive

After being seen in neurology I felt kind of positive. I was excited because I was going to be part of a trial for the type of nerve injury I have. I have just received the clinic letter which is eye opening and reading the findings just makes it feel so much more complex. It has also left me feeling really vulnerable and weak. Before I used to get frustrated by people who would stick there nose in if I parked in a disabled parking space because of course you cant see how asthma effects you there is nothing that flags you out as different but now walking with a stick, walking with a big deficit and only being able to wear one pair of shoes that my brace fits in is so visible. I can also feel the pity people have. While in the near waiting room I overheard the people sitting opposite me saying it is so sad when young people have to come in to clinics with such struggles while looking at me with that smile and head tilt. I would right now give anything to go back to just being frustrated by people who like to make judgements.

The most disappointing part of the clinic letter is that I am not suitable for the trial because I have 2 different nerve things going on. If I only had the nerve injury then I would be ok but because of the muscle weakness I have I can no longer be a participant. I have been referred to the neurophysiotherapy team to get them to help me and I also need to go for various tests on my nerves such as nerve conductions studies and EMG done.

The hard part that I find is that this is all so out of my control. Before when I have been unwell it has been my asthma. To be fair I know pretty much all there is to know about asthma or at least my type of asthma so when unwell I can kind of deal with it as I understand what is going on so know how it might pan out. With this I am totally in the dark with it. Nothing is within my control now. I just have to let my nerves heal and do the physio when I am seen. I see the musculoskeletal physio that my GP referred me to tomorrow morning but I’m not sure if I will continue staying there because of the referral to the neuro physio too. I figured I just need to get started and get on the road to recover as best as possible as I cant stay where I am with the brace/splint and wearing trainers out like there is no tomorrow!

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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).

A year on monoclonal antibody treatment

I can’t believe it is a year since I started on mepolizumab (mepo) a monoclonal anti body treatment to suppress my eosinophils in a bid to help my asthma. The big question is as it helped?

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I am not sure. My consultant seems to think it has and I am to continue on it. My eosinophils have dropped dramatically however I am still on the same maintenance prednisolone dose and we have not been able to reduce it down and I am no longer working just now. I was in clinic last month speaking to my consultant as I was having second thoughts about staying on mepolizumab because I cant see a huge amount of improvement but he feels it is worth staying on it and I have been approved to stay on it for the following reasons:

  1. My blood eosinophil count has come down (I’m not sure of the exact figure just now but we are checking again next month)
  2. My peak flow although overall it is lower than it was the variation in peak flow readings is no longer there and it is a lot more consistent- I cant complain about this as now I know where I am each day compared with before where the diurnal variation was huge.
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  3. Although I have had a near fatal attack and several others requiring hospital I have been able to recover from them a lot quicker than before. My consultant described some of my attacks as spectacular (Im not sure how I feel about that).
  4. Chest infections and colds have not quite taken the hold that they were before and again recovering has been a lot quicker.
  5. My quality of life is better (although for me I am still really struggling with the idea of not being at work doing the job I love).

Looking at the reasons my consultant listed I really cannot complain and can see that the mepo has had an impact. It has not had the wonder drug impact that I hoped for and that I have read many have had but I am alive and have a great team behind me so really need to be thankful.

I did some work a good number of years ago for Astra Zeneca where I met some other asthma patients. One young lady I met had their life totally transformed by Xolair going form being intubated numbers times, not being able to work and very disabled by their asthma to having a full time job and minimal asthma issues. I think deep down part of me was desperate to have this effect. I remember thinking after I was told I would start mepo that I might be able to get back to the gym, start running again and playing lacrosse and golf but that has not been the case which is a bit disappointing for me but I was told not to get my hopes up too much.

Even though the mepo has not been the wonder drug that was going to transform my life I am so grateful to my consultant for being willing to try it and keeping me on it. Apart for the hopes of it transforming my life I was worried about the side effects it might have. On the whole I have really not had any significant side effects. I have been finding I get a bit of a local reaction for about 48-72 hours post injection where the skin is red and hot. Initially when I first started getting the injection I did get a really bad headache, backache and just a general feeling of being unwell. After about the 3rd injection this went away. I have found that if I am a bit under the weather in the days leading up to getting the mepo then I tend to get more side effects in terms of headache etc but nothing that has been so bad it is not worth getting the injection especially as I am not having to get up and work set hours etc.

I have come across different stories on social media about peoples experience of biologics but one thing I have found is the number of people weighing up the travel for these treatments. When you asthma gets to the severe end of the spectrum most are referred on to a tertiary centre where their care is managed and their local hospital is there as a support team but do not take the overall control of your management. There are not many tertiary centres so there is often a lot of travel involved. I am lucky that Id not have a huge distance to travel but I think even if I did I wouldn’t mind because I know the team are doing it in my best interests and the least I can do is travel although it may be more difficult when you factor in that you do have severe asthma which is already controlling your life but if there is a chance that this is going to help then the travel is worth it!!

Another discussion I had with my consultant was about new biologics that are coming out. He is hopeful that dupilumab may have its use altered and some asthmatics may qualify for it. Just now it is only used in adult eczema in the UK but in the States there have been people on it who have aspirin sensitive asthma which is what I have except that I am anaphylactic to aspirin and salicylic acid so fingers crossed this gets a green light at some point as we both think this might work well for me.

The use of these monoclonal anti body drugs is dependent on such specific criteria and the patient needs to meet them and the consultant needs to be able to provide evidence for it before you get the green light. Because of this many are not getting the opportunity to try it and see if it has an effect.

For me I did not match the criteria for blood eosinophils but my consultant was able to argue the case. He was able to show that the prednisolone I am on will be surpassing eosinophil production and if i was not on it then my count would be elevated but it is too dangerous to take me off them or down a significant amount just to get the blood result. I would say it is worth asking your consultant to see if there is potentially a way to justify why you need to try this treatment and then be approved for it. It is so frustrating that a drug you are trying to get off is the main factor to many not meeting the criteria, but if you came off it then it is so dangerous as your asthma can go so out of control without it. I can see why they have strict criteria because the drugs are really expensive as they are such targeted drugs but in time they will drop in price and hopefully the criteria for the drugs will also be more flexible too.

Overall I am glad I have had the chance to try mepolizumab and being able to stay on it. If I had not changed consultants I doubt I would even be considered for it which is a scary prospect as I have no idea where I would be with my health.

If anyone has questions about monoclonal antibody treatment please ask!!

Are asthmatics who post on social media one reason why asthma is considered as “just asthma”?

How often do we read or hear that asthma is “just asthma” and an inhaler will fix it all. Everyone knows someone who has asthma but not everyone knows how bad asthma can be and that it kills people. 3 people die each day in the UK compared to the 10 across the United States. I am not saying that 10 is acceptable but compared to the UK it is far better. In fact the UK has the worst asthma death rate for a developed country.

The big question is why do we have such bad statistics?

We have the National Health Service, Asthma UK, 2 dedicated research centres- the Asthma UK Centre for Applied Research and the Asthma UK Centre in Allergic Mechanisms in Asthma which is providing asthmatics with cutting edge technologies and trying to get a better understanding of asthma, the different types of asthma and best ways to manage it. Despite having all this, asthma as a condition is horrendously underfunded when you compare the funding given to cancer or heart disease. Asthma is way more prevalent yet still not fully understood. To begin to understand asthma, and the different phenotypes (types) there needs to be a huge input of money much like there is for other conditions.

Why is money not being given to improve outcomes of those with asthma? 

I believe that we as asthmatics have a role to play in this specifically the role that we play on social media. Over the last decade social media has exploded. Everyone (although there are some exceptions) uses social media of some sorts wether it is Facebook, Twitter, Instagram or LinkedIn. It is used for both social and professional use and although there are some restrictions in place you can post pretty much anything and it can be available to most who are looking for it.

I use social media in a number of different ways. Through Facebook, Instagram and my blog I can share my advocacy work and awareness about the condition, how I deal with it both the negatives and the positives, and also new medications that are coming out as well. Twitter is an excellent vehicle for knowledge exchange specifically for research as you can share snap shots of what is happening and not need to search a website and read through screeds of stuff.

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On Facebook one of my roles is that I moderate and administrate several support groups for those with asthma, severe asthma, difficult to control asthma etc. I feel very honoured that I have been asked to become a member of the admin team for these groups however it is tricky. Many of these groups can be accessible to anyone who wants and people can post what they want, equally they can post what they want on their own pages too. I believe this is where asthma or more specifically asthmatics get a bad reputation and unfortunately when someone reads something in one place then an entire groups can be tarnished with the same brush.

What am I actually talking about? I often get into trouble or arguments with people because they are not acting responsibly and not taking their condition seriously. This would be fine if they were keeping this to themselves but many are not, instead it is being shared on social media. For example:

“my breathing is really bad and having to use way more nebulisers than I should so need to go to hospital but I have stuff to do first”

This type of thing I come across on just about a daily basis and it makes my blood boil. We have a role wether we like it or not to take our asthma seriously and get help when we need it. Part of me feels that anyone on the outside seeing this would think why should be invest lots of money in asthma when those with asthma are not being sensible with it.

I firmly believe if you need to get help you need to get help, a shower, shopping, housework etc can wait. If you don’t wait you might not be there to do it in the future. No one likes going to hospital and many with severe asthma spend a lot of time going to hospital resulting in admissions and plans changing. It is not ideal but it is what it is.

I have had 2 friends die from asthma and know of many others through my work with Asthma UK and being involved in support groups that have also died. For some of them the reason they died most likely could have been avoided had they got help when they first started feeling unwell. I am sure if I was able to ask them they would say they wished they got help sooner as they might still be here now.

I use the examples of these 2 friends in response to comments people leave like above. This will often cause many to get angry with me but if you are unwell you need help there and then. People do not see this and expect sympathy and attention but if you do not act responsibly then you are not going to get sympathy. If you really want to live then you need to go and get help. There have been times when I have just wanted to pretend asthma is fine and I don’t need help because I have something on and don’t want to miss it but then I think of Dawn and it jolts me back to earth forcing me to get help.

Wether we like it or not we are ambassadors for the condition. The outward projection we give I think has a large part of why asthma is not taken seriously. I am blunt and will say to people that if they want their asthma to kill them then they are going about it the right way. It is very blunt but it is the reality.

I know for sure there will be people who read this and have posted irresponsibly  who will be angry. I do care that they will be angry but at the same time I don’t because what we post on social media can influence others with asthma who may be new to the condition and they don’t know any better and think what they read is ok to do. Remember asthma can kill anyone not just those with severe asthma so those new to the condition may see stuff and think because someone who has had asthma longer than they have must know best and it is ok but it is not. We must lead by example and if we are not going to then we must keep this private and to ourselves.

So how much is social media playing a role in the reputation that asthma has. I will continue to try and get people to understand why asthma must be taken seriously and that when you need help for your breathing you need help and should not go and have a shower etc first because you think this is the priority.

I am an ambassador for asthma as we all are. Asthma needs to be respected much like other chronic health conditions are and it is not acceptable to post irresponsibly on social media for others to see and be influenced by. We desperately need more funding to understand asthma better and if we can do our part to help achieve this we might get there quicker than we are now.

Rant over but bottom line is: social media can be toxic in how people view asthma because of what those with asthma post for the public to see.

RIP Dawn

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