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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Pollution and its effect on my asthma

It is well known that pollution makes asthma worse. There has been a lot of information in the press about this and how there needs to be low emission zones in major cities to try and increase the air quality. Recently an inquest ruled that the death of a young girl from asthma was due to pollution exacerbating her asthma which resulted in an attack that killed her. It is scary to see just what pollution can do.

I can see the effects of pollution on my own asthma. Since getting my smart peak flow meter I have been able to track my peak flow for a prolonged period of time. Previously I have always done my peak flow but did not record it (mainly because I am lazy and printing off a peak flow chart on paper was a faff and when I did print it off it would get wet as I keep my peak flow etc in the bathroom with my medication so I just gave up) so having the result blue tooth to my phone has been great.

I have had to ability to print off the charts month at a time or even week at a time if I want. The most useful thing I have found by doing this is the ability to identify points where my peak flow may have dropped or increased and then refer to my diary and see if there was anything that may have caused the dip.

For example the picture below shows my peak flow. The 2 yellow arrows mark when I went to London which shows a significant drop in my peak flow which then increased again once I returned home to Edinburgh. This drop was despite wearing a carbon filter mask to try and protect myself as much as possible.

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I am not sure what else I can do to try and protect my lungs from the pollution in London other than not travel there. The mask I use is high grade, I take my medication, I also try to make sure the windows are shut and I am outside as little as possible so I am not breathing in too much toxic air.

Conversely to this I was recently up in Thurso- just about as far north in mainland Scotland that you can go (except Dunnet Head) where pollution levels are very low I noticed my peak flow actually increased. Perhaps a combination of being at the far north of Scotland, away from major roads, away from major cities with large amounts of traffic and being right on the coast with sea air (sea air has historically been promoted as good for the lungs- it might be an old wives tale).

The chart below is my peak flow and the yellow arrow is when I was up in Thurso.

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I think from this I can clearly see the impact of air quality on my lungs. Edinburgh is a real mixed city as there are some areas which have horrific levels of pollution and other areas that are not so bad. I am fortunate in that I live fairly near the coast and not right in the city centre but it is still fairly polluted where I am.

What steps can I take to improve my lung health and avoid pollution?

  1. I would love to move away to the country somewhere near Loch Tay as I love it up there and the clean air would really benefit me. There is little traffic and no big industrial sites near by. Unfortunately due to the nature of my asthma this would not be feasible as there is no major hospital near me so if I was to have an attack it would be a long wait/trip to get help and to a hpspital
  2. Try and ensure I wear my mask when I need to so I am breathing the best air I can. Despite having a complex about wearing my mask I need to protect my lungs at all costs and if this means wearing a mask then I must.
  3. Keep an eye on the pollution levels and act accordingly. If I know the pollution levels are rising I should perhaps increase my inhalers to counter act the symptoms I may get (I will check this with my team before acting on this).
  4. Get out and about as much as possible down to the coast to breath in good clean air and not stay stuck in the city all the time.

Essentially there is no easy way to avoid pollution but I can see the detrimental effect pollution has on my lungs via my peak flow results. It would be wrong of me to recognise this and not act on it. I must get a plan and put it in place to protect my lungs from more damage which breathing in toxic air might do.

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(Me on the left wearing my Cambridge mask while in London at the Asthma UK Centre for Applied Research Annual Scientific Meeting)

World Asthma Day

On Tuesday 1st May is was World Asthma Day. I normally do something during the day, or post a video etc raising awareness about asthma, how serious it is, how  critically under funded research into asthma is. This year however I didnt do anything I just wasn’t well enough, my chest was far from good and lacked any ability to concentrate and focus on anything, mainly due to the high doses of prednisilone which leave you with a mind that has been put in a blender and constantly mixing your thoughts up and also due to the lack of sleep again thanks to the prednisilone but also my breathing has been getting worse in the late afternoon, evening and into the night making sleep difficult.

But World Asthma Day 2018 was recognised by Asthma UK with a huge thunderclap on how to deal with asthma attacks which reached far and wide across social media. However there was some very disappointing news also announced which is devastating and really makes you think how, why and when will those in power do something about it.

What Im talking about is the UK’s statistic on asthma deaths.

World Asthma Day 2014 saw the publications of the National Review of Asthma Deaths (NRAD) which showed the devastating numbers of people dying from asthma but also that over 2/3 of those deaths would have been preventable had they received the correct asthma care including having an asthma action plan in place, having regular asthma reviews and also correct inhaler technique. The publication of NRAD was meant to be a turning point in asthma care given the shocking statistics. I remember at the time thinking it was bad and that so many people shouldn’t be dying from asthma so you can imagine my shock, upset, dismay when I woke up to hear that asthma statistics have not got any better in the last 4 years in-fact they have got worse. Asthma deaths are 20% worse than they were 4 years ago making asthma statistics in the UK as the 5th worst across Europe and only one of three countries whose death rate increased rather than decreased. It is really shocking but then I sit and think a bit more about it and am I really surprised? I don’t think I am. I didnt think the rate would have increased as much as it has but if Im honest as a patient I really don’t see any changes that have had a big impact on asthma management, and if there are no changes there then there won’t be much of a change in the statistics.

As a patient who has asthma and does use a variety of NHS services because of my asthma I have not noticed any changes in how asthma is managed and monitored. I know my asthma is not run of the mill asthma and is more complex therefore GP’s and asthma nurses in primary care do not have a lot of input into my care other than my annual asthma review which the asthma nurse does at the GP survey. However the review tends to be me updating them on the new research that is out and what new treatments are available. I am often told that I know my asthma better than anyone so they are going to let me self manage but will be there if I need them. I understand why they do this however as a life long asthmatic and a very difficult to control asthmatic I cannot remember the last time I had my inhaler technique reviewed. I don’t think I am doing it wrong as take my inhaler the same way I always have. I also don’t have a written asthma action plan. I have bugged my (now old) consultant for one because being on maximum doses of inhalers I don’t have room to move should I get a cold or chest infection. Now that I am going to have a different consultant who i hope to have a better relationship with and will work with me rather than against me or just not work with me at all leaving me to do most of my management and hoping for the best (mostly I think i do the right thing!). But this got me thinking, how many other asthmatics like me who are difficult to control are just left to do their own thing because the asthma nurses they see say the same as mine that they are far more knowledgable than they are.

One of the other problems I see often and I think is a potential barrier  to reducing the number of deaths due to asthma is those who have asthma give it the respect it deserves and be sensible with it. Due to the difficulty I have with my asthma and the isolation I feel as a result of it I am in several support groups for asthma, brittle asthma and difficult to control asthma. It is here where you can chat to people who know exactly how you feel, how debilitating it is and the frustration  you feel when you try to do everything right but still your asthma is not behaving.

These groups are a great source of support however there is one very concerning theme which keeps recurring which no doubt is also a factor for so many asthma deaths and this is not getting help early.

I will often see posts made by people saying they have been using whole inhalers in a couple of days, or they are struggling to talk and having an asthma attack and they don’t know what to do. In these groups we do not give any medical advice but would suggest the person concerned follows their asthma action plan to which some would reply saying they don’t have on, or that they go and get seen by a GP or hospital. Again some group members would respond saying the GP does nothing except give them steroids or send them to the hospital. There is also the situation at night when GP practices are closed so you need to phone NHS24 and they will assess if you need to be seen by a Dr. Many people again don’t see the point in going to out of hours because they don’t know you so wouldn’t be able to do much. It really frustrates me when this happens. I can understand that asthma is very tricky to deal with as there are so many different phenotypes so seeing your own GP is preferable but it won’t always happen that way and more than likely it is during the night when you start struggling to breathe.

Now for the last, most serious, and riskiest behaviour that also occurs in these groups which could quite easily cause death. What am I talking about is when people post photos of their oxygen saturations or heart rate accompanied by a comment about how much they are struggling and finding it difficult to talk and don’t know what to do. Again naturally you would offer support and see what they have already taken, followed their action plan and if all this has been done the next step is to go to A&E to be reviewed, have their chest sounded and some treatment if needed to get their chest and asthma back under control. The problem occurs when you have given them some advice and recommendations like they asked for however they don’t take it. Many say that going to A&E is a waste of time because they get told their oxygen saturations are ok and their chest is wheezy but they will be ok. They may be given some nebulisers and prednisilone and allowed home. They see this as a waste of time as some feel they can do everything they are being given in A&E. They don’t see the value of attending as they see it as just getting some medication but actually the Dr or nurses are assessing them to see how much effort they are putting into there breathing and if they are using their accessory muscles to help, they will also have bloods taken which can show if they have any infection and require antibiotics. So it might not seem that much is being done but there is a whole assessment taking place. Then there are another group of severe asthmatics who won’t go to A&E early as they feel they are always up at the hospital being admitted for their asthma or being seen in outpatient clinic so they want to maximise their time at home so will stay there until they are really struggling which is when it gets dangerous as an urgent ambulance is often required and the resus room is on standby for you so you get treated straight away and stabilised before moving to a ward. I don’t think people realise that by staying home longer they are taking a big gamble that they will okish by the time the ambulance arrives and takes  them to the hospital. The longer they leave it the longer and harder it is to get back to baseline and the more medication to help relax the constricted airways. This also means that they will require additional medications to treat the asthma and any infection present plus more medications for the side effects of prednisilone.

By delaying when you decide to go and get help because your asthma has got more difficult is critical because you don’t know how severe the attack may be and if your out with a bad chest you may be exposed to triggers and because your not well your airways are going to be more sensitive.

I guess the message I am trying to get across is that no matter how busy you are in life or how much you feel you spend off work and in the hospital nothing makes up for not having a life which is what will happen if you don’t go and get help early for your asthma.

Patient Centred Care

I have quite a few different blogs in my head after my last hospital admission due to a variety of things that happened.

Where better than to start at the beginning.

It was the usual start= difficulty breathing so did I usual nebuliser treatments and thought I should probably call 999 as I wasn’t getting much relief. The call handler was great. I normally just hang up but she stayed on the phone with me until the paramedics arrived which was good as it took a wee bit longer for them to come so she was able to distract me from focusing on being scared that I couldn’t breathe.

The paramedics did their usual. Although my blood pressure was through the roof which normally happens but later on. I think it just shows that I had been struggling for a while given how quickly it went up but also how quickly my heart rate was going too. Apparently the Western General doesn’t take emergency asthma attacks anymore as they are not equipped (despite going there in February) so I had to go over to the Royal Infirmary which isn’t my favourite but as it turns out it was a good thing I went there. So blue lights across town which is something I can never get my head round, part of me would love to be feeling well when going across town with the blue lights to see where they go and stuff but to have blue lights is really not a good thing so not being able to remember it is not good either. I would prefer to get myself across town to the hospital without needing an ambulance or not require the hospital at all.

The guys in A&E are fantastic straight into resus and getting sorted out. The challenge of getting a cannula in started and once they got it in the radiographer who was less than pleasant trying to get me into odd positions and not sympathetic to the situation did her best to pull it out and almost succeeded but for the quick hand of the Dr.

I did laugh though as the Consultant who I saw first uttered those words all asthmatics hate ‘just relax and concentrate on your breathing’. I wanted to throttle him. He was a really chatty guy so I couldn’t at the time get a word in to say to him what I wanted to but after they got some magnesium, hydrocortisone and aminophylline running I was starting to feel a bit better and could talk a bit more. When he next came in I was able to wave at him and tell him about the BMJ article I wrote. He said he found it really good as he had never thought of asthma in that way and he thought that it looked so difficult for us to talk so we just shouldn’t. I explained that if an asthmatic didnt want to talk they probably wouldn’t rather than try to fit their words in around their breathing. There was a noticeable change in how he treated me after he read the article and was obviously applying new learning which s really rewarding to see.

The slightly negative part of the whole time in A&E was that they sent ITU to come see me as they felt I needed to be there rather than going to a monitored bed in the assessment unit. Thankfully an ITU Dr who has seen me before was the one to review me and gave me more time to try and get on top of things. I did manage this and was significantly better but was shocked when a nurse came and told me that I was going to Intensive Care. If I’m honest this freaked me out a bit. I had assorts of things flying round my head. I though I was doing better and I was wondering what they knew that I didnt, were my numbers worse, was I tiring and the adrenaline of the attack was keeping me going. I was quite upset by the thought of it. I said to the nurse I didnt want to go, who then got a junior Dr who told me I needed to be there. The junior Dr got the consultant who by this time was a different one from earlier as the shifts changed.

This is where I cannot thank the A&E Dr enough. I thought I was in for it and going to be told I was unreasonable, and didnt know what was best for me because the Dr walked in looking at me carrying a chair, shut the curtains and sat down. At this point I thought she was going to tell me I had to go to ITU and had no choice etc. I was so wrong. She sat down and asked me how I felt and gave me her rationale for going to ITU. But I was able to tell her my fears of going to ITU and just that I felt significantly better from when ITU came and reviewed me. But also I was able to share my fears about ITU. Every attack I have now I end up in ITU or HDU. I honestly thought this time I was doing better and didnt need to go. The Consultant spoke to the on call Resp Reg about me and my concerns etc. It was agreed that I didnt need to go to ITU and could go to a monitored bed but should anything change and I get a little bit worse at all then there was a really low threshold for me to be moved to ITU.

What I really liked about the A&E Consultant was that she was all about the patient, and what is best for the patient, and involving the patient in the decisions about their care. When first taken into Resus you don’t get a say in what is happening as they are running around trying to save your life and that is their sole focus rather than if you want that or the next but the move out of resus and into the high care area sort of signals the change in care and is a move when the patient can be involved in their treatment and have input into what they think best and have discussion with Dr’s.

I was and still am so grateful for the Dr who took the time to speak to me and listen to me about my concerns of going to ITU and why I felt I didnt need to go there. I understand that if I need to go then I need to go and ultimately if after that chat the Dr still said I had to go to ITU I would go as I am not going to go against what the Dr’s say but being heard and listened to makes such a difference.

As it happens I needed up going to Critical Care anyway but that was due to an anaphylactic reaction which caused my chest to deteriorate rather than just an isolated deterioration in my asthma.

I must say this really was an excellent example of patient centred care and when patient centred care is appropriate and when it is not.

Tired of this now!

After a busy time away in Manchester and having a bit of an attack on the train back up to Edinburgh I was ready to just drop in a heap and I did for a couple of day. Thursday and Friday I really didnt do much other than using my nebuliser a bit to try and get over this chest thing I seem to have caught.

Friday night into Saturday I really didnt feel great but thought it was just the weather because it was awful and it just kept changing. Atmospherics can really effect my chest so I thought maybe it was that. I went to bed early and was tossing and turning. I ended up getting up at 1 am and went to Tesco to get something to soothe me. I got some ice fruit stuff which kind of helped but I felt like the air was stuffy. I eventually settled after a few nebs about 6am but woke at 9am with my heart thumbing. It was going nuts. It was up at 140 and I honestly thought it was about to come out my chest.

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I called NHS24 which I always think is a bit of a gamble as I worry they will hear my history and will just send an ambulance. I had a really good nurse who I explained what was happening and was wanting to see if I could see a GP in out go hours to get some atrovent for my chest. I hoped this would mean I could stop the salbutamol an then my heart rate would just settle down. I saw a GP but she was worried as my heart was up at 180 and my breathing was not good- probably due to my tachyness. I have never seen a GP so worried. All set for a blue light 300 yards up the road. Thats happened. I felt like an idiot but then the paramedic was concerned and managed to get 2 cannulas in me. I was starting to worry myself at this point as I really didnt think I was that unwell and all I wanted was some atrovent. But my ECG was showing prolonged QT waves again so it had to be checked and we did need to get my heart rate down. By evening time it was down and I was home and could relax. Of course I couldn’t and was paranoid that if I moved then my chest would get bad and then I would need a neb and then I would make my heart rate go back up. It was down to a low 120 by the night.

Yesterday was the first time I have felt kind of scared as I had no control of what was happening and had no idea how to stop it. I know with my asthma I am in control (to an extent), I can ask for the nebs when I need them. I know what I can do and can’t do, I know how to sit to make it easier to breathe, but this was something different- there was no way to control it. It was out of my hands and the Drs hands to some extent as it was a bit of a waiting game to let the meds and fluid work to bring it down. It did scare me. I get scared with my asthma my it is a different scared. I am scared because I can’t breathe but I know I am in safe hands and will be ok- but this was different.

Sitting today reflecting back I am just fed up. I keep wondering what next is going to go wrong and will my body give me a break. I have been fairly well recently. I have not been in hospital nearly as much but at the same time I have not been doing as much. I thought my not pushing my body so much I would not make more things go wrong but maybe Im not right. Maybe it is just more challenges to try and over come. I am so greatful to all my friends who stick by me and give me wee messages of encouragement.

Back to work tomorrow after a week off but I feel I could do with more time off as just a bit tired after the last few days. What a way to end annual leave!!