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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Review of 2014

It has been quite a year this year. So much has happened!!!

January- I started working in the Community Dialysis Team and it has been fantastic. It has not gone quite as planned. I had hoped that moving to CDT would mean my health would be much better and I would be able to get my old life back. This has not quite bent he case. I have had to reduce my hours to part time which has made a big difference. January also was the turning point where I realised that I would not be able to get back playing lacrosse or running the half marathon in May. This photo is from my birthday with my nephew!

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February- I was admitted to hospital. It was what I thought at the time one of my most terrifying hospital admissions. A nurse on one of the wards I am admitted to regularly told me I knew what it was like to be dealing with asthma and I shouldn’t be scared. I was terrified and exhausted and told be told this was enough to tip me over the edge. I never thought I would experience this especially from people who knew me and know my asthma. I ended up discharging myself. How can you stay somewhere when you have to hear stuff like this.

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March- this was a great month. I went Canada. A massive turing point. 10 years since my asthma really started going down hill which was precipitated  by pneumonia I got when I was out in Canada ski instructing. I had not been out in Canada since then. Emotionally it was really tough going back somewhere which turned my life around. I was going back there on my own. I was staying with family which did make it easier but it did also show just how much my life has changed. 10 years ago I was able to  ski a whole day and not need to take breaks or finish after a few hours!!!But it was fantastic to go back there and in a way face my demons I left there. I did though miss my nephews first birthday as I was flying.

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I also got to catch up with an old school friend while I was in Canada. Its strange when we were at school together we never really got on that well. But Angela came over to stay with a mutual friend Jenni and we grew to be great friends drink that year and when I was over in Canada I had to go see her and we had a great time!! It was just a pity that it was such a short time I had to see her!!

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April- I went to the respiratory nurse specialist clinic for the first time. I did think this would be a turning point in my asthma but it turns out it wasn’t. April really was essentially a non eventful month. I did have a few asthma attacks. had to miss some golf but all in all it went by with no specific events I can recall!

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May- this was a massive month and one I will remember for years to come. Infact it was 2 days which I will remember as they did change my life. It started on the 5th where posted a video for world asthma day which is on the 6th. It was seen by Asthma UK and I was asked to do an interview for the Guardian about asthma and Dr’s not listening to their patients. I was playing golf with my step dad and step brother when a photographer followed us round th golf course for pictures to go in the newspaper. It was published on the 6th which was also my step dads 60th birthday. That morning I got a phone call to do a phone interview and speak on the radio as the National Review of Asthma Deaths had been released. As a result of the interview I was asked to attend parliament for the launch of the new research centre of excellence for Asthma. Here I met some fantastic people and was asked if I wanted to become involved in the PPI section of this centre and I said yes. The rest you can read in my blog.

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June- I had an appointment with Cardiology as was having problems with my heart. It all turned out to be a side effect of my asthma meds. June was a stressful month as my Granny got taken ill and we thought the worse. She was very poorly and we thought the worst. Remarkably she is still here and doing not to badly. My step sister also got married down in Wales. It was a fantastic day and she had a lovely day!

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July- I had a week away playing golf in the Highland Open. It is a fantastic week. I love it. Getting to see friends and have a bit of competition. The weather was amazing. I again qualified for the scratch but got knocked out in the quarter final! It was a good rest.

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August- I had some wonderful trips to different golf courses in Scotland such as Kingsbarns which was rather eventful- thunder and lightening!!! I also thought this was the month that I would manage to taper my prednisilone down to eventually get off it but as the year moved on this was not the case. It was nice to think though that I might have got off it!!

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September- a family holiday to Portugal!! The usual golf holiday with my Dad and Stepmum but this time my brother, his fiancé and my nephew came too. It was a lovely break away!! This holiday however was also point in which I would go from working full time to working part time. On a more positive note though I did see as it turns out my new consultant. I had originally gone to him for a second opinion and Im not sure how it happened but it seems now he is my consultant and my old consultant is no longer my consultant.

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October- In february I thought I had the worst hospital experience I would ever have. How wrong I was. October was the worst experience I have ever had and hope no one ever has a similar experience. I did make a blog post about it and it was protected with a password but now I have taken the password off it. I want all to read it and understand that this must never happen. It makes me realise that no wonder the statistics about about asthma are so bad if this is how asthma is treated.

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November- I had a the experience of a life time. I went to Oxford with AUKCAR for the academic launch. I was able to speak to some fantastic people and have made so many contacts as a result of it. I have got a few projects to be involved with which is fantastic as now it means that rather than fundraising for asthma and to try and make a change by giving money I can now help make a change to asthma by helping with research. This is why May was such a big month for me. Had I not done that video for World Asthma Day I would not be involved with AUKCAR and I love every minute of it.

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December- has been more of a reflective month for me. There has not been much going on. Mainly I have been gearing up for Christmas and trying to keep myself well. I also started a new project where I have asked various people I know if they would like to write a guest blog about their experience with asthma. I have a few more to post which will be done in the new year.

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2014 has been a mixed year. A year of highs and lows, ups and downs. I have learned a lot over the year about myself and my asthma. By being involved in AUKCAR it has made me change my attitude towards how I approach my own health. I used to try and avoid going to hospital, or increasing my medication and often would do things because I wanted to even if I was not well enough. However now I think I take my condition more seriously. I also know that being involved in AUKCAR with one of their aims to be to improve self management and reduce hospital admissions I need to act responsibly and take action when I start feeling unwell following my own self management plan. Medication adherence and compliance is one of the big issues and I would be contradicting the ethos of AUKCAR if I did not act as I do now. I used to act totally the opposite and would do all I could not to increase medication and often to y detriment.

I am looking forward to 2015 and all it brings.