Returning to work in a fog of smoke.

I have been back at work now on a phased return and it is going fairly well except for one part. When my chest feels tight I do find it a bit of a struggle to get from the car park to the hospital. The staff car park is the furthest out from the hospital and includes crossing the road that circles the hospital. It is not to far only about 400m probably but when your chest is tight it feels like a marathon.

To compound this staff seem incapable of waiting until they are either in their car or off the hospital site before they light up they cigarette and go on their way. I see them walking out the hospital cigarette and lighter in hand before they are even out the building- it is almost like you can see them itching to light it which they do as soon as they are out the building. It appears that they cannot survive without their nicotine that they don’t have a care for who is around them all they are focused on is lighting up and getting their fix not worrying about the effect they have on others as long as their cravings are satisfied.

I guess I am more sensitive to triggers now than I ever was before because of the attacks I have had since the start of the year- they terrified me and still haunt me. My lungs are still twitchy so any trigger will make me feel tight and wheezy. When I was off sick I longed to go back to work to have a purpose to the day and get back to the job I love but how can I do the job I love when getting into work I can only describe as running the gauntlet not knowing what I am going to have to go through just to get from my car and into safety of the hospital. This really hit me yesterday when I had 3 people in front of me smoking as I left the hospital to get to my car. I had to wait outside in the cold until they had moved far enough away that their smoke had dissipated and was no longer a threat. To me smoke is as much of a threat as a dangerous patient if not worse. You can’t call security for help from someone smoking but you can for a dangerous patient. I don’t mean to trivialise a dangerous patient but to me right now smoke is more of a danger to me than anything else. I don’t want an attack triggered- the fear of another asthma attack like I had grips me so hard I can’t shake it off.

I know you can’t go around dictating what people do but what I have huge difficulties with is that the hospital is meant to be a no smoking zone and there are signs everywhere which are just disregarded and no notice is taken of them. Many of the people I see out smoking are nurses. The same caring compassionate profession that I am in yet they really don’t actually care for those around them. There is nothing worse than being a patient and having a nurse come off their break smelling of smoke and you are sitting in a respiratory ward and could quite easily be set off just by the smoke that is lingering in their hair or on their clothes.

I think my issue that I have trouble accepting is that I did not choose to have my lungs like this. I am trying to do all I can to stay well and achieve what I want to do but I see all these people who choose to smoke and are choosing to do damage to their lungs and other peoples lungs. I do remember once I was subject to one persons smoke which caused me to have an asthma attack and go to hospital- the nurse’s smoke that caused the asthma attack was the nurse who ended up looking after me. I found this really hard.

I have rambled a little bit here but I am just so frustrated that by trying to work and get to work I am risking my own health to get inside the building. I have asked to move carpark to one that is closer so that the gauntlet I have to run is shorter and therefore the potential risk is much less but this is yet to happen and Im not sure if it will happen. It is a very small request but it does make me think what is the point of pushing myself to work when those around don’t want to try and help. To put it bluntly if those who smoke think about those around them and perhaps smoke only where they are meant to they would not effect other people, they would reduce the number of people who end up in hospital and therefore reduce their work load making their life easier.

This is a little bit off the deep end but its how I feel.

A big thank you from myself and Karen

Myself and Karen (Captain at Craigmillar Park Golf Club) want to thank all those who participated, volunteered, donated prizes, and helped make the day such a great success. A huge amount of money was raised and it was way above our target but the money everyone donated and help raise will go towards ground breaking developments in asthma research to help produce new medications to help everyone with asthma. A thank you to Lisa who introduced our video and her son for his expert filming!

Everyone knows someone with asthma but not everyone knows that 3 people die every day from an asthma attack. Since the publication of the National Review of Asthma Deaths in 2014 there have been approximately 1600 deaths from asthma in the UK. This number is far to high. I owe a huge thanks to all those who have helped save my life when been admitted to hospital and ended up in intensive care or high dependancy but I have ad some friends who have not been so lucky and have lost their life to asthma. The public perspective of asthma needs to change as many think asthma is just about taking a blue inhaler but it is far more than that. I can control and dictate your life in ways you never think are possible. Even those who have mild asthma and will never think they are at risk of a life threatening asthma attack but they are, anyone with an asthma diagnosis could potentially be at risk from asthma.

Please watch our video below.

Breathing tests every two weeks- every patients nightmare

For any asthmatic or any person who needs to be seen in a clinic or Drs surgery they will more often than not be requested to do some kind of breathing test. In a GP setting this tends to be peak flow measuring your peak expiratory flow rate in litres per minute. Pretty much every asthmatic should have a peak flow device and if not you should be asking your asthma nurse or GP for one. It is one of the most useful home tools to identify how well you condition is.

However as a condition progresses or becomes more challenging to keep in control further testing may be needed. Patients attending any respiratory clinic in a hospital will probably be sent to the dreaded lung function room first to a variety of different breathing tests from FEV, FEV1 or perhaps flow loops.

I hate lung function, mostly because my lung function is not as good as it used to be but also because I have so much pain for some reason in my left hand side at the lower lung area. We are not sure why its sore but most likely muscular but nothing that serious. I find doing my FVC or forced vital capacity is not a problem because breathing out all the way is not too hard unless I am having an attack. My issue comes when I have to do my forced expiratory volume in 1 second. You have to take a big breath in and then blow out as hard and fast as possible until empty. This is where I get sore. I just always get a really sharp stabbing when I move from breathing in to breathing out hard. It stops me in my tracks. It makes me feel like I have been winded or kicked in the ribs- so understandably I don’t like doing it.

More recently there has been a new device introduced into the lung function world and the lung function room which I don’t mind so much, now that I have got the hang of it. It is FeNo or Exhaled nitric oxide. FeNo is measuring the amount of inflammation present in your airways which can identify how well controlled your asthma is. This is an odd test where you have this handheld white box thing which you need to breath in through and out though at a certain rate. I have done this test with a number of different people who all have different strategies. The aim of the test is to keep a cloud between two lines by breathing out through the machine at a certain rate. You can do this by watching yourself in a mirror so you can see the cloud which is on the side of the machine facing away from you or you can have the pulmonary function technician telling you to blow harder or softer which is very amusing and totally puts me off. Even watching myself puts me off as I just laugh. I have got used to the face I make and don’t laugh quite as much and don’t need as many attempts as I used to. I think I would on occasion leave them all shaking their heads when they had a busy clinic and was laughing at myself thus holding proceedings up!!! (I will find/ get a video of myself doing the FeNo test so you can see what I mean!!).

From what you have read so far you can probably guess that I don’t like doing lung function. I don’t think I will ever like doing it, so you can imagine when a few months ago in clinic my consultant suggested coming for lung function every two weeks and then emailing her the result. I was not amused and she went out of the clinic room to speak to lung function to sort it all out before the news really set in. When she was away all sorts of things were going through my head and thinking of ways I could get out of doing lung function every 2 weeks but I couldn’t think of much as I work in the same hospital as I work in so could not say I was too busy and wouldn’t be able to get away!!

I was so relieved when she came back and told me that it would only be the exhaled nitric oxide (FeNo) I would be doing every 2 weeks. I was relieved that none of the other tests would need to be done!! I was a bit skeptical at first about what FeNo every two weeks would achieve but now I am 2 months down the line and can really see where it has been really useful and helped me and my consultant make progress in my prednisilone reduction. Before it was a case of reduce the prednisilone by a few mg and then see how I did. Most of the time I would reduce for a few months, be fine and then have an attack which meant y dose was increased again. This time was different. I would do the FeNo test then email my consultant tell her the result and she would make a recommendation about what to do with my dose. So this way we know what is going on at the point of reduction rather than waiting and seeing what happens. I have repeated the rewards from it as we have managed to stick to the plan and I have been managing to go every two weeks pretty much give the odd day late here or there!!

This is the first time I have felt an element of control in my asthma. Perhaps it is a bit of a psychological result as well because I have had so many failed attempts at medication reduction when we go by the wait and see plan however now with FeNo I know I am good, bad or indifferent so have that reassurance that we are reducing at the right time.

I guess the two weekly lung function or as it turned out FeNo was not as bad as I first thought!!! It has been really good and the benefits certainly are better then the pain of going down to pulmonary function. Fingers crossed for continued progress. I am sure there will be the ups and downs but I guess it keeps like interesting!!

I must recommend FeNo to anyone. More hospitals are bringing it in and give a far better picture of how your lungs are actually doing.

It never gets easier!

Just under 2 weeks ago I had another pretty serious asthma attack which ended up with me being admitted to hospital for over a week. Over the years I have had loads of asthma attacks and all of varying degrees, different situations and surroundings yet this past one is one I am finding the most difficult to process and one I am feeling the most insecure and scared by. As far as asthma attacks go it was not the worst but not the mildest either. So what is bothering me so much?

The weeks preceding the attack I have been slowly but surly going down hill. I was having difficulty fighting off a viral infection which plagued me. Ironically when I got up to go to work the morning I ended up having an attack I actually felt better and thought I had turned a corner and was throwing off the infection. The previous day I felt awful and was debating not going into work. I felt better so I went in.

It didnt take long or much to start me sliding down the slippery slope. I had to go from inside to outside and back in again to see a patient and doing this really hit me. The change in temperature felt like fire in my chest. Walking back to my unit it felt like someone was tying a belt around my chest and not letting any air out. By the time I got back I knew I needed to go home but I didnt want to admit it. I found my charge nurse and told her. I don’t think I needed to tell her I was not well as her reaction was to take me into a treatment room for me to have a neb. I struggled to put it together but didnt want to show how much I was not managing. My charge nurse was great. She asked if I needed to go to A and E at which point I said yes. No sooner had I said yes, I was in a wheelchair and on the move to A and E. We flew through the corridors of the hospital. I don’t remember it at all really. The next thing I was there in triage having obs done. From here on everything moved so quick. I was hoisted up onto a trolley and taken through to the Resus room with a consultant and reg who looked after me. My anticipatory care plan came into its own as I didnt need to say much and all the information the Drs needed was there. I was in Resus for quite a while before I was stabilised and brought back into the main bit of A and E. The Drs were all fantastic. I needed a lot of IV medication this time. IV aminophylline was started in A and E. For me we normally wait a bit and see if lots of nebs etc can get on top of it because of the issues with my heart but the Dr’s decided to start it. I was glad as I was getting very tired and felt like I had no energy to fight anymore. I was moved through to a monitored bed in the assessment unit after that to wait to be seen by Respiratory and a bed in the Resp Ward.

The whole A and E experience was really weird for me. In fact the whole attack was. I don’t know how to feel about it. It was a number of firsts for me. It was the first A and E visit using my anticipatory care plan which worked well so thats good. This time was the first in a very long time I have ever had anyone with me in A and E. I often find it difficult to have people around me because I see how scared they can get and the fear I see in them makes me scared which ends up being a bit of a vicsious circle. I did like having someone with me. It was a comfort when getting stabbed and poked and all sorts to have someone there to distract you and take your mind off it. The other thing about this attack is that it was the first really serious attack I have had at work in front of my colleagues. I have had days where Im chesty and not great but never had a full blown asthma attack in front of any of them. They are all nurses so will have seen people with breathing difficulties but when it is your colleague it is a bit different. Part of my anxiety about this is that sometimes when I have an attack due to being short of breath and oxygen etc I can do and say stupid things (for example I once tried to squeeze through the cot sides of the bed cause I thought this was the way to get out of bed!!). You can do and say stupid things in front of family but work mates is a bit different.

I shouldn’t be surprised that it has happened. I have done pretty well to avoid any major attacks in front of them until now but it has shaken me quite a bit. This whole admission has shaken me quite a lot of a few different levels. I will post about them once I have sorted my thoughts from the rest of the admission out. I have only processed the acute phase of the attack as so much happened.