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).

New horizons- not knowing how to feel!

In March/April for me my asthma care hit a wall and I could no longer continue as I  was. Despite my consultant being one of the best in the field of difficult to control asthma I was getting no where, I was feeling lost, totally out of control and no idea what I was doing other than trying to keep myself as well as possible. Something had to change and in my opinion it could only be change for the good because I felt things couldn’t get much worse.

That hospital admission changed everything back in April time. By the time I was discharged I had a new team and although I had not met with them yet I felt more confident about my care, who was looking after me and positive about the future. Once discharged home I eagerly awaited my outpatient clinic appointment to find out what would be happening and where I would be going with my care. It took a while to come but yesterday I had my clinic appointment. I spoke with my new consultant on the phone and discussed various things including monoclonal antibody treatment which the allergy people were also keen on. It was decided I would wait and see the consultant once a decision was made on it.

I pinned a lot on yesterdays appointment and the new treatment I would be starting. I kept trying to tell myself to not put all my eggs in this basket as things may not change at all and I might yet end up the same as I am and no further forward in getting my asthma under control. Recently I have felt well and managing my asthma quite well. It is because of the high dose of oral steroids I am on and using nebulisers fairly regularly but it has kept me well. People have commented on how well I look and sound. Again the security blanket of prednisolone the drug we all love to hate but right now I am loving it because I feel so well (come 3am when I am up with insomnia and restless legs I am not so fond of it but cant win them all).

So what happened yesterday….

Well not what I wanted but despite this it was a positive appointment. We did not start new treatment. 2 reasons- my chest was not quite good enough. The recent weather has caused a bit of havoc and I have found it more difficult to remain stable but also he wants to use a different drug but the same type of medication.

He is hopeful that my asthma will get better. He did say and many consultants have said it before I will never be free of asthma and may still need hospital help but I should not have to rely on steroids like I am to be able to function and live some sort of life. I long to just be able to plan things and know where I am with my health from week to week or day to day.

Having faith in a tea is so important and to feel listened to. I went with a list of questions and things I wanted more information on such as a plan of what to do when I am not well because being on unlicensed doses of inhalers and oral steroids there is no where to go when things get bad other than the hospital and that is not needed just for extra medication so to have a plan for this at home would be really helpful.

It may not be perfect but I feel more confident in having someone who I can speak to, I almost ended up crying when I was there as I am so frustrated at my asthma and everything it has cost me and stopped me doing. I try to find the positive and focus on the positives things I have done as a result of asthma but there is the still wonder of what would life be like if my health was to become stable.

I was really shocked when after my appointment I felt so drained and then in the middle of the night I woke up and was so angry. I think it sunk in that there is going to be a change. It may or may not work but something is being tried and nothing has been tried in as long as I can remember. I felt so angry that I have been left sitting for years just going in and out of hospital, up and down on steroids and nothing more was being done so had resigned myself to the forever of life being like that until the attack came that would finish it all. I was angry that only because of a bad admission and really throwing my toys out the pram that something has changed and may help. Im not sure how I will feel about the last decade if this new treatment has a positive effect.

Life has been very busy with various things particularly research and PPI which I love and so thankful to have it to fall on when I asthma is stopping me from doing everything else in my life!!!

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.