2nd dose of Mepolizumab in the bag

Thats the second dose of mepolizumab done and dusted. Now to wait till next month for my next injection next month.

So many people have been asking me how I feel and if the new drug is helping or making a difference, or ask me when I will start noticing the benefits. Its really hard to tell. I am feeling some positive effects from it I think and there have been a few side effects but nothing major.

The most telling sign is that I have noticed my peak flow has been increasing and I have not been in my red zone since the 19th September. That is a full 10 days. It may not seem like a great achievement and many will not agree with me for being excited that I have gone ten days and not dropped my peak flow but the nature of my asthma has meant that my peak flow is all over the place and so has my control been. I must say my asthma control has not been poor through my own choice and I have tried desperately hard to keep it n control. I have not managed to get into my green zone since June but I am happy with that. Better to be stable and sitting in my amber zone stable than jumping up and down with readings all over the place. I think slow and steady is the way to improve….it has after all only taken 14 plus years to get to this point.

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Other than looking at peak flow results and keeping track of how much salbutamol (both nebuliser and inhaler) I am using how do I actually feel? DoI feel different?? It is hard to say. My prednisolone dose has not been reduced and has been kept at the same dose since I was discharged from hospital in April. I am finding it hard to identify if feeling well and pretty stable is because of the steroids or due to the introduction of the mepolizumab. Once I have my 3rd injection I am hoping my consultant sticks with his plan and we can start the slow process of reducing the prednisolone. I am aware I won’t get off it (or may get off it and converted to hydrocortisone due to adrenal failure) but lower will suit me just fine.

Since starting the mepo I have not been to bad with side effects. After the first I had a bad headache the first time but the second dose was not as bad. A bit of a sore head but nothing to major. The one thing I have noticed and I am not sure if it is coincidence or what but I have been waking up in the morning feeling like I am drowning or choking on the amount of phlegm I have on my chest. I have always had a bit of a productive chest- it goes with the territory of having lung disease but this is different. I am still not sleeping super well but I am wondering if that because I am sleeping slightly better and not waking up so much the phlegm is building up rather than me waking having a cough moving all the stuff and then settling back down. I guess the good thing is that all the movement of phlegm means I (fingers crossed) won’t be as susceptible to a chest infection and may notice them quicker as everything is moving so will see the colour changes. Although this is good that I am moving stuff in my chest I find in the morning I am having to do more saline nebulisers and a lot of physio to move it and it has often made me sick because of it. This is a minor price to pay though in terms of side effects.

With this medication as I have said before I won’t see improvements over night but will over time and I think I am starting to see them. The other thing I have noticed and finding it more and more is that people are telling me how well I look and don’t sound as bad which is probably the best part. The past 3 weekends have been jam packed full of different things- mainly lacrosse and by the end of each weekend I have been on my knees longing for my bed but I have managed them. I have managed to spend these weekends on the side lines of a lacrosse field, or in the middle of a lacrosse field coaching  with either Edinburgh Uni or Scotland (Scotland is just goalkeepers and assistant manager). A lie in over a weekend would be lovely and in the past weekends have been all about recovering and getting myself prepared for the next week of work but I have been able to use these weekends to do what I love and not suffer at work. Don’t get me wrong it was so hard to get up on Monday but I think most people find it hard to get up on a Monday morning for work so being what I called “normal” person tired is awesome.

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One thing I am very thankful for is having people around me who can keep me grounded and don’t let me get ahead of myself. I have always been someone who will try and do the long distance run before I can jog let alone walk so even though I may get grumpy at people holding me back I do appreciate it. Coach Dave at Scotland Lacrosse knows when to reign me in and make sure I just take it easy and ensures I just walk or rest when I perhaps am going full steam.

I have an excitement in my life just now something that I have not had in a long time. I look forward to being able to plan things in advance and not worry that I may need to cancel or not be well enough to attend. I am aware that there will still be times when my lungs just stop me from doing what I want but through this I have also learnt to appreciate life, not take it for granted and just live for the moment.

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Asthma Rule 1: ALWAYS have your reliever with you.

On twitter recently you may have seen that I had a small rant about something that happened the other day and I am still reeling over it. I think what got me most is that how are we ever going to change attitudes towards asthma if those with asthma are so cavalier about it.

I was at a Design Informatics Collider with a variety of industry partners, researchers, clinicians, researchers and patients. The theme of the event was ‘Design Support for Asthma’ and what can be done to help asthmatics or those who care for asthmatics which in turn would help asthmatics. There was a group of us patients there from the patient an public involvement group at the Asthma UK Centre for Applied Research. I have met most of the patients before who were there and as always it is great to meet new people in the group too.

So what happened??

One of the patients there was chatting about their asthma and their asthma control but then announced and announced proudly that they had not brought a reliever inhaler with them for the trip (baring in mind they came up by train and stayed overnight). They had their preventer inhaler but stated that their asthma was so well controlled that they knew they would not need their reliever. I was gobsmacked by this, and even quite angry about it especially the pride that the statement was delivered with.

Asthma is such a dangerous condition and there has been so much in the press recently about how many people die from asthma, how under funded asthma research is and just generally how bad the asthma situation is. The national review of asthma deaths (NRAD) which was published 2014 highlighted just how dangerous asthma is and how it is those with relatively mild asthma that are at the biggest risk from death and this year the news broke that rather than there being an improvement in the asthma death rate it has in fact got 20% worse not better.

I feel really passionately that even if you are so confident in your asthma and asthma control as an asthmatic you should never leave without a reliever inhaler especially if you are away overnight. For me my inhaler is my security blanket. I always have a ventolin (reliever) in my pocket, even when in hospital and on oxygen and nebulisers I still have my ventolin in my pocket too!! Asthma is such a fickle disease and you never know when a trigger is going to cause your airways to react and tighten up. The reason that was given for not having a reliever with them was that the weather was ok and they would not be affected by any triggers despite saying in the next breath last time they were up they had to climb stairs and were in a really bad way after this- there was no guarantee that there would be no stairs this time round.

I think the main thing that got me was that being involved in AUKCAR and being a member of the PPI group you would think that those in the group are those who are proactive about their condition, wanting to set a good example and manage their condition to the best of their ability. To do this one of the key things is to have all your medications with you. It may end up that you don’t need it, but its better having it all with you and not require it then need your reliever and not have it. Asthma and our airways don’t stop and think that they better not tighten up and become symptomatic because your don’t have your inhaler. They are going to do what they want when they want.

I am still reeling over it and so glad that there were no members of the children and young persons group there because they are impressionable and may think that because someone older than them is not carrying their reliever with them so they don’t need to either. I feel really passionately that if you are part of a group and forward facing attending groups where there are a mix of different professions who are putting a lot of time, dedication and effort into a career of helping those with asthma then you need to be acting in a responsible manner and not bragging that you don’t carry a reliever inhaler because what researchers or clinicians are going to want to help asthmatics when those they are consulting with are not being sensible and taking their condition seriously.

Acknowledging one man and his team.

For years I have found I have had to battle and prove myself to my sports coaches if I am wanting to play in a team, also prove myself to teammates that I won’t let them down if they pick me over another player who would 100% be able to last an entire match.

I guess this fight started when I remember as far back as 2003 when the team was being selected for the school tour over to the east coast of America. I was taken aside and spoken to that if I was selected I had to prove I was well enough to go and play the matches. Until then I never thought my position in a team was judged by my health rather it was my ability and skill playing the game. I guess the only exception to this was ski racing where without sounding arrogant and big headed there was no one in school who could come close to my times. Now looking back on it I can see that my position was always given to someone else if I had recently had an asthma attack even if I was given the green light to play again. I would often be missed off team lists altogether. Despite turning up to all training sessions even putting in extra hours of skill work and extra hours of fitness it felt like it was never good enough.

Even playing club sport I would be questioned about if I was fit enough to play and if I was sure. Even if I had the green light from respiratory I would still be questioned and people didnt feel safe me playing. It really made me feel pretty down as I would do all I could to get the green light from Dr’s, attend training but still it was questioned.

But I must say that all changed and it all changed for the good!!!

I wrote a while back that I found myself in goal again after 18 years playing out field in lacrosse I was once again between the pipes. After that first tournament  when I wore all the goalie kit we had and looked like an american footballer (i do not do this now as found it actually made less mobile).

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I found myself enjoying being in goal and found I could play and play a full hour with no bother on my chest and not be a risk to the team. As I knew this was a position I could play and the enjoyment I got from being part of the team again was great, I knew this was for me but I needed practice! Thankfully there was a Development day led by the Scotland national coach which I went along to as the more time I could get to practice was only going to make me better (and a bit more bruised). I was shocked when I was asked to stay for the second day which was for people trailing so I stayed. The weekends to come I stayed for the second day with the aim of trialling for the B team. I had to be upfront about my chest as this was not the place to hide it and there was no way I could do the fitness or keep up with the fitness that the rest of them were doing. For once the coaches were alright about it and understood. It was the first time a group of coaches understood where I was coming from and didnt force me to do something I knew I would fail at. I was really excited at the prospect of trialling and felt it gave me a purpose again to get better and try and keep on top of my asthma and not let it dictate my life.

The final trialling weekend I was devastated when I ended up in hospital. I think I was more upset at the prospect of being on hospital for the trial weekend than I was about my birthday, this was how much it meant to me. I didnt tell anyone this but I guess i can now because it all turned out alright in the end. I accepted that once again my asthma had stopped me doing something and it was good while it lasted so had to be happy with that. In all honesty I don’t think i really dealt with the emotion of it all but because the previous admission was so scary and also the start of this admission has led to a formal complaint going in so my thoughts were all with this rather than the fact that I missed the trial day.

I was over the moon to see that I had been picked to represent Scotland in the B team for Home Internationals down in Surrey in April. I thought it was all over when I was in hospital so to say I was over the moon would be an under statement.

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I owe a huge thanks to the coaching team at Scotland for giving me a chance. This is the first time in as long as I can remember that despite my asthma I am being given a chance to play and the what if’s are not being asked. I guess this has given me a new lease of positivity and renewed fight where before there really was not much to fight for. Next weekend there is a coaching weekend which i am looking forward to as really starting to feel better after the start of the year which was interesting but having positive news and a goal makes it so much easier to get back to it.

Tomorrow I go back to work for the first time in 2016 which I am looking forward to as have been very bored. It is a quicker return to work than normal after only being discharged just under 2 weeks whereas normally I am home 3 weeks as recovery takes a wee while but its time to go back before I go barmy with cabin fever!!!

If I am honest I have not got my head around what has happened at the start of this year but knowing that someone has faith in me keeps it going. I owe a huge thanks for  this but also the inspiration that the Scotland coach his. His passion for the sport makes you want to do your best and play well. It is like its contagious and totally infectious you cannot help but love lacrosse when you are around him and his team of coaches.

The rest of 2016 is going to be a good year!!!

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.