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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Never say never again!!!

I think about 15 years ago perhaps even more I moved schools and with that move I was leaving part of my sports career you may say with it. I thought moving to a new school I could finally play the position I liked and wanted to rather than the position I ended up playing because I was good at it. I am talking about lacrosse. At my first school I played goalkeeper and it was quite by chance. I had inter-house team competitions so someone always pulled the short straw and ended in goal. For me I felt I pulled the shortest straw because not only was I playing for the house team in goal I was also playing for the school team in goal too after putting up a good performance in house games!!! Moving schools was my opportunity to hang up my goalie stick and pads etc and pretend I had never played in goal and could start playing out field. From that moment on I never thought I would play in goal again.

That was until today!!!

Realistically I know I am not going to get back to the fitness I once had and be able to play sport like I would love it. I had almost resigned myself to either co-ordinating the subbing gate or player periodically in tournaments when the weather was not to bad etc. Today we had just that. It was the Scottish Clubs Mixed Tournament in St Andrews so I thought I would go- knowing full well I am not fit and am still really sore from my chest issues- but as usual I decided pain killers would be fine and I could have fun. I defiantly had fun but not in the way I thought.

Our goalie couldn’t play, then our stand in goalie was injured in training on Thursday so goalkeeping duties was split between a few of us. I ended up back in the crease with pads on and holding a stick with a giant head. As soon as I stood in the goal everything came flooding back to me- it was in a way like I had never not stopped. I got into the circle and made my foot marks so I knew where my posts were etc and off we went. I made a few saves, assisted a goal off a clear and conceded 2 goals I think (could be 3 but not sure). I was impressed and I even have to admit I really enjoyed it to the point I think I may go back to that position if I can get some really good padding for my chest so I don’t risk to much injury.

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Going in goal was so worth it. As a team we won our pool by winning all our matches which meant we went forward to the final…and won the final. My lacrosse club are the Scottish Clubs Tournament Champions and got silverware to take away.

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It was such great fun and well worth the risk of feeling sore and perhaps not great now but I have not felt part of the team for a long time as I was never able to contribute but today I did and it felt great. It was a real positive boost which I hope will do me good as I have decided to not play golf for the next year and not renew my membership to my golf club which I was feeling really low about- but I really was not enjoying golf last year as it was such a physical effort to get round the whole course. So today has given me a much needed boost.

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I am even thinking about going to the Scotland Lacrosse Development weekend which is run monthly.

I never thought I would ever be putting on goalie kit and standing inside the crease again. I will defiantly not be saying never again this time!!