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).

Feel like that duck…

Feel like that duck you see calmly swimming in the pond but take a look under the water and his feet are paddling furiously just to keep a float.

Chest wise I feel that I am managing to keep the outside world seeing me as ok but when I leave work and get back home I just collapse into a heap and the outside shell comes off to reveal total exhaustion, pain, fear and the fight for breath. More and more now I can’t keep up this persona of all being ok. More and more people say to me I look tired, i sound awful, should I be at work. The reality is that perhaps somedays I shouldn’t be in work. But I love my work, my work gives me a purpose, its gives me something to do with my day which otherwise would be spent moving from bed to sofa to a stroll outside to perhaps the sofa again. It would not be the life for me which is why I push and fight a daily battle to get up, get dressed, have my meds and put on that face that can take on the world.

It is a difficult one because I know my colleagues all care for me (mostly) and don’t want to see me suffer, and if Im not well I should be at home. But my mentality is that if I call in sick I am not failing but adapting to a life I really don’t want. Fighting to stay well, have a job and live a life I have earned keeps me going. If I stopped this I would give up. There would be nothing to drive me on to get that health and wellness I really want.

In my job I can relate to my patients. I can understand the frustrations of waiting for Dr’s, or getting the wrong prescription, being told you can’t go on holiday, getting the news you need to start a life changing and life altering treatment, having to accept you now have a tube coming out of you or a great big blood vessel created- I can understand these fears, frustrations, anxieties that they go through. Even the little things like holidays, working, friends, altering a diet. I have experience of this. I can share my experiences of dealing with these things and how to navigate the world of hospitals, Drs, nurses and all the other allied health professionals you see. This is why I love my job. I can help my patients adapt to living with a chronic illness and appreciate their frustrations at having their illness forced upon them through no fault of their own.

As my health has got worse recently I don’t work as long as I once did but there are times that working the hours I work it is not possible to do everything I need to do in the time allocated. So what do I do?? I don’t go home when I should. I stay until the job is done. This happened tonight and I suffered from it. I stayed late went to pick my bag up from my office which had been sprayed with some god awful deodorant or perfume. I had quite a bad asthma attack which I got control of and got help and I am getting back on the right track. Many ask why I stayed, I should have left and the person whose patients they are should have dealt with them. I knew this wouldnt happen so I wanted to stay and make sure they had everything they needed and would receive the correct treatment etc.

Why did I do this??

I had a community matron when I lived down in England who went above and beyond the call of duty. I was on a rather complex regime of stuff including a sub cut syringe driver of terbutaline. Like PD sub cut drivers for anything other than palliative care are rarely seen so most of the staff don’t take an interest and the patient suffers. This happened to me. I didnt get y 24/7 driver renewed, ran out and ended up becoming quite unwell and going to HDU. For several admissions after that my community matron would come to the hospital if she knew I was being admitted (she normally did as she was the one sending me in) and have all the stuff there for me with a plan. This meant I didnt suffer. I got the treatment I needed and often this meant I would be in hospital a shorter time than had I not had my treatment.

So I guess that from the experience I had with my community matron it has stuck with me. She inspires me to be the nurse I am. If I can be half as good as her it would be fantastic. Even if at times I thought she nagged the hell out of me, often wanted to slam the phone down on her, not answer the door bell because I knew there was something she was going to tell me to do or some appointment she wanted me to go to or the worst being she would admit me to hospital. But she did all this because she cared and wanted the best for her patients. I didnt see it always at the time but after a few days and feeling better I would get that “told you so look” from her- I could never win!!!

Having this experience is why I do the things I do. I want the best for my patients. I am lucky that I still have this reciprocated by my medical team who want the best for me.

If I get through the day doing all this then I can flop once home. I can sit down and concentrate on myself. Trying to look forward and plan for the days when I won’t be this duck paddling frantically under water will be great but being able to live just now as I am is getting me through the day. Only those close to me see the real fight that goes on and even then they don’t see the half of it. One day things will be different but for now it is one day as it comes. Over coming obstacles no matter how big or how small.

The only slight good thing about today is that I have a real reason and trigger which caused an asthma attack. Normally Im never really sure what has been the definite thing to cause an attack as there is so many things ranging from dust, pollen or food. Today I can nail it. It was that horrendous perfume or body spray or whatever. It may not seem like a positive but you need to find positives in all situations and this was it. I identified the trigger. May need to wander around with a mask on in future to avoid any toxic smells again!!!IMG_2619

 

This is my night. Some nebs and fingers crossed some sleep!

Botched asthma diagnosis…

Nothing like the sun newspaper to come up with a good headline:

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I may not be totally accurate in my view that for a long time asthma was a bit of a buzz word within the medical world. From reading and talking to different people it appeared that often people would go to their Dr because of a prolonged cough of some viral wheeze and come home with an inhaler and asthma diagnosis. I admit this is a huge assumption and there will have been more supporting evidence but it almost seems over recent years there has been an epidemic of asthma diagnosis

However last week NICE (National Institute for health and Care Excellence) published a draft report suggesting that over 1 million people in the UK had been wrongly diagnosed with asthma. That is 1/5 of the 5.4 million people who have asthma could actually not have asthma. I feel that if asthma statistics are not shocking enough lets just add some more stats and make it even worse.

The problem with asthma is that there are so many sub types, different phenotypes, different symptoms, triggers and so on and so forth. There is also no hard and fast rule of how to diagnose asthma. There are rough outlines for example recording a peak flow diary for a few weeks to see patterns and changes and depending on the result of this an asthma diagnosis can be made. However many people will present acutely with breathing difficulties which need to be treated first and not wait to do a peak flow diary. Due to the pressures on GP’s they do not have the time to spend with a patient making regular appointments to monitor them over a period of time before coming to the conclusion that the patient has asthma. You can read a small bit about this in one of my guest blogs by Laura (can be found in left side tab under Guest blogs) where she talks briefly about being diagnosed with asthma.

When I heard about the draft report from NICE part of me thought perhaps I could be one of those wrongly diagnose but that is very much wishful thinking. I think after 27 years of asthma, 11 years of brittle asthma, countless hospital and critical care admissions they would have worked out if I did not have asthma. But one can dream in the hope of one day not having asthma!!!

I can’t imagine the emotion and thoughts going through some peoples mind about wether they have asthma or not. I worry that many who are not particularly symptomatic and use inhalers regularly will stop using their inhalers because they may assume they don’t have asthma. This could potentially cause a huge problem and the aim of reducing hospital admissions due to asthma and deaths due to asthma may not decrease but might in fact increase as a result of many people hearing or reading shock headlines such as the Sun produced.

Asthma is such a difficult condition to have and to monitor because of the sheer numbers of people who have asthma.  My thoughts about why statistics surrounding asthma are so bad because it is a condition which does not cause a immediate deterioration if medication is not taken. To pick another condition such as diabetes, there is a very measurable way to see impact of medication. If a diabetic does not take insulin they will see very quickly their blood sugars increase and develop unwanted symptoms whereas with asthma if someone who is well controlled stops taking their inhaler there is no immediate effect which I believe could contribute to poor compliance as the effects of the inhaler would only be seen if the patient was subjected to a trigger.

When NICE put out the draft report about the possibility of so many people being wrongly diagnosed with asthma I was called by Asthma UK to do a radio interview about it. I was not able to participate in this unfortunately as it would be a chance to emphasise the importance of continuing medication even if you are not bothered by your asthma as the reason you are not bothered by it is because you are taking inhalers. I am glad in a way I was not able to participate in the interview because once I gave the report some thought it dawned on me that here in Scotland we do not use NICE guidelines for conditions and management but instead use SIGN who have not issued any reports about the possibility of inaccurate asthma diagnosis.

There does need to be a more robust and universal method of diagnosing asthma but I think this is a very difficult task to succeed on. Due to the nature of asthma as I said before there would need to be numerous different guides depending on the subtype, triggers or symptoms an individual suffered from.

in the meantime I can only hope that those who are in two minds about their asthma seek medical advice before stopping taking their treatment. It is a huge fear that this report will cause a lot of people to become unwell and possibly end up needing hospital treatment due to not taking their medication. It will be interesting to see in the future the impact that this has had.

Out on a saturday night

It was lovely tonight to have some normality. You may think it very odd to be writing a post about being out on saturday night but it was a big deal for me. I still ended up in bed by quarter past ten but have been out since 6pm. I feel really good that I managed it.

It was the Lacrosse Scotland fundraiser for their tour to America. They put on a pub quiz and a raffle. It was great fun. We at Capital Lacrosse Club have a few people who are in the squad going to America on the tour so it is great to support them. It was even better because I was able to put all the useless knowledge I seem to store to good use. Our team the “Astro Burns” (we, well our club train on astro) came in first place!!! A tin of biscuits and 2 bottles of wine to the good. It was a great laugh.

The team probably don’t realise just how much of a big deal it was for me. It is the first time in ages I have actually been out. I find my asthma gets worse at night and as I normally am doing things in the day by the time night comes I am so exhausted I just want to flop. So instead today I had a peaceful day so I would be good for tonight and I am so glad I did.

In preparation I had a few nebs during the day and one just before I left to make sure I didnt get wheezy as I knew I would be around strong perfumes, people smoking outside and a dusty pub too. I am glad I did all that. It sounds way over board but I would rather be over prepared than under and have to go home early.

I hope now that I have managed to do that I will be able to do more as I know I can do things in the evenings without having to leave too early.

I have a busy few days coming up. It is my birthday on monday so sunday I am out for lunch with family and then dinner on monday with the other side of my family!!!