The Verdict!!

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I have been fairly quiet recently mainly because I was terrified. I have had 3 doses of Mepolizumab and was due to attend clinic and see my consultant for the verdict and find out if I am staying on it or not.

The good news is that I am staying on it for now.

Clinic went well. I am so glad that I had that horrific hospital admission that made me decide to change consultant because it has been the best thing I have ever done. It has come with some issues but overall it has been one of the best things I have done.

I had lung function and FeNo both of which were marginally better but what I have noticed is that I am more stable overall. Recording my peak flow has been super helpful and I can identify what causes were when they dropped whereas before I had no idea and it was all over the place. I would love my peak flow to increase but I am happy for stability over gains (gains are unlikely due to the fibrosis in my lungs now).

The other difference this consultant has decided on is with regard to my steroids. Previously it has been a rush to get me down to the lowest dose possible and see how I go but that has always ended up badly and I spend more time on higher doses and it felt like I was on a rollercoaster all the time. Now, as much as we want to get me down to a reasonable dose and hopefully off prednisolone (wish me luck) we are acknowledging what has happened in the past and he kept me on 20mg which felt like ages (3 months) and then alternating 20mg and 15mg daily (2 months) and now I am to stay on 15mg until February March time and then we will readdress reducing it further.

So many people have asked me if I think the mepolizumab is helping. It is so hard to stay. I think it must be as I have been more stable but I worry that this is due to the prolonged prednisolone and super slow reduction but what I am hoping that it is a combination of both. I guess the time to tell what is doing what is if I get unwell (touch wood I don’t) and I can see how quickly I can respond to treatment and not need invasive treatment. I am aiming for this as know hospital is going to happen as my consultant has said this. He said he would have no worries about admitting me to hospital if either he or myself thought my asthma was not great.

We are also changing one of my inhalers. For the first time in as long as I can remember I had an outpatient clinic where my medications were reviewed and we looked at what I needed to keep taking and what could get binned. The only change he wants to make just now is removing the seretide inhaler and replacing it with Relvar a newer once daily preventer inhaler. He wants me to continue taking some extra fluticasone at night to tide me over as I still have quite significant dips in my breathing at night.

Im happy I now have a plan. Know roughly what is happening with my asthma and asthma care. Over the winter period I will be seen every 2 weeks. Monthly clinics with my consultant and then in-between I will be up with the asthma nurse specialists getting my injection and review there. Also should there be an issue I just have to call in.

The one thing out of all of this which I cannot let go of is why did it take throwing my toys out the pram and move consultants to be able to get in control of my asthma or have a plan to get control of it. I just want answers and I know I won’t get them but I am now trying the treatments I have been asking about for a good number of years. I know dwelling on it won’t help but when its your life that has been suffering it is hard.

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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New drugs, new start?

I haven’t written in ages and I apologise for that but I really did not know what to write and how to write without getting myself angry and upset as I feel the last 8 years have just been a total waste.

I wrote a while back about changing consultant and hospital because I was really finding the relationship I previously had with my consultant was no more and my health was getting worse, I was getting put on more and more drugs and constantly riding a rollercoaster of feeling well and being on high dose steroids to feeling rubbish because my steroids were reduced.

So lots has happened since switching consultant. My first appointment I finally felt someone was going to do something to help. I was put forward by my consultant at their MDT meeting to see if another consultant would agree to me being a candidate for mepolizumab. Due to the cost of the drug you need meet certain criteria and have a second consultant agree to it. Thankfully another consultant agreed and the wheels were in motion for me to start.

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I didnt really know what to expect. Its not like other drugs you get by injection like any sickness or steroids where you notice a difference pretty quickly. This one it can take a few weeks before you notice positive effects from it but Im not sure what I will feel and what the positive effects will be. Will it be the nights are better and I won’t wake up so much needing meds or will my peak flow be increased or able to do more during the day with less symptoms??

Time will tell how it goes. For me because of the steroids I am on they are going to use my maintenance dose of steroid a marker for effect of the mepolizumab so if I can reduce this then we can move forward and continue on the mepolizumab but if I cant reduce them without my chest getting worse then I won’t stay on it and will be back to square one and trying to find something else to help me.

Speaking to the nurse they seem to have had really positive effects and not many people have had to stop. Also the side effects have not been too bad apparently. A bit of a headache and back pain seem to be the most common. My head has been killing me but it is easing off and if that is the only side effect I cant really complain because a headache is the least of my worries as the pain and suffering from my chest over all these years far out weighs a sore head!!!

There is deep seated feeling of anger in me which I need to get over but I just cant shake this feeling of having wasted my time with my old consultant. Everyone told me she was the best but I guess the best is not always what works and it really didn’t for me. I asked so often to try different things anything to try and get some stability even asked to stay on the higher dose of steroid as I knew this was what my lungs were happy with but it was always a no and just had to persevere and would get there. Clearly that didnt work as every attack I ended up in ICU or HDU and so much time off work. If it was not for understanding bosses I would be out a job and have no purpose or aim to try and get myself well. I am really angry that it took a horrible admission to hospital and me essentially getting so upset that I was getting no where and people asking me if I had tried x,y and z and all I could say was no and they look quizzically at me like I am mad because my asthma is so uncontrolled yet I have not even been considered to trial some of the more medications till now.

I need to keep myself grounded though. Even though the results of this drug in others has been fantastic I really don’t want to be disappointed and pin all my hopes on it to then be totally devastated that it doesn’t work or it doesn’t work well enough to justify keeping me on it. Even with the best results there can be from the mepolizumab my lung issues won’t totally be cured as the years of uncontrolled asthma have caused a lot of airway remodelling and scarring which cant be reversed.

Fingers crossed the next three months are full of good things and I can stay on the mepolizumab as I desperately want my life back or even just some of my life back where I don’t have to spend all the time I am not working resting to make sure I am then able to work the next day.

Will keep updating as I go and if I see effects from it.

Whats your reality??

The other day I picked up my medication from the pharmacy and laughed when the handed me over a shopping back but then went back for another one!!! I know all the people in my pharmacy well and will always have a chat with them but I have never really told them whats wrong with me. They know I have asthma but they don’t know much about it etc, until the other day when I hadn’t been in for a while. I collect my dosette box weekly from them and will get a top up of inhalers etc every so often. She asked where I had been so I told her I had been in hospital and thats hy hadn’t been in. She was shocked. She said she didnt realise just asthma could do that to someone. I went on to explain a bit more about it and how it impacts me and explained what all the meds I take are for. She said she ha wondered as didnt think asthma could be like that. She said it must be hard but its life. Life for everyone is hard at times but it is what you make out of it.

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I have days where I really resent having asthma and wish I could go back to primary school I think P3 was when I was on just one preventer and a reliever and that was it. That would be wonderful but then what would I have achieved in life if I didnt have the difficult asthma. I am sure I would be proud of my life but Im not sure I would have done nearly half of what I have done and a lot of it is because of my asthma such as publishing an article in the BMJ, playing for Scotland in the Home Internationals, be back as a goal keeper in lacrosse, speaking at so many events, speaking on a masters course at Edinburgh Uni, being a nurse, being development director for Lacrosse Scotland, being a PPI lead for AUKCAR, being a RaP volunteer at Asthma UK. None of these things I would have done and I also would not have met some fantastic people on my way and made some great friends. I am thankful for my asthma to have given me these oppeturnities inspire of also giving me some of the hardest times in my life and living with the fear that it could kill me one day. (but then as my mum says you could cross the road and get knocked down by a bus so you never know what is runs the corner!!!!

I would love for a day when my breathing is a little less challenging and a little less limiting but I think in a small way I am glad it has shaped me the way it has.

The reason I wrote this out was because I just picked up my meds as I wrote in the start and I organised them into my cupboard to make them all neat and so I know what is where. I was getting lost with the meds and what I was taking when. It was over whelming but my pharmacist has reduced that a lot by sorting my meds out weekly but they were also all in a box just chucked in so never knew what I had and what I was running out of. Now they are neat in a cupboard which I can close the door on. Closing the door- after some carful tetris packing because it wouldn’t shut the first time round, made me think about what we hide from the outside. What is our own reality and what is the reality that we allow people to see. My life on the outside is very different to life in my flat. I find when I am at home I am resting and doing treatment to allow myself to go out and about and be with friends or coach or something else. It is like two polar worlds- one which is in preparation of going out or the recovery of being out and then the being out and doing things. Its keep the private and the public separate until you read this and realise that asthma is not just asthma but it is much bigger. It is life changing, life threatening, life limiting.

 

But take each day as it comes and rise to the challenges that are thrown at you and achieve what you dream of achieving as it is always possible it just has to be achieved in different ways with some imagination sometimes. For instance I always wanted to play lacrosse for Scotland but never did I think it would be achieved by being in the goal, I thought if it was to happen it would be playing out field.

Good things come to those who wait.

Life is for living not watching it go by in front of you!

 

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.

There are some amazing people out there!!

Asthma UK logoThis end of this week is a really special day. Not only is it my Dad’s birthday but it is also the Craigmillar Park Charity Golf Day to raise money for Asthma UK. I never imagined the amount of money it would raise but have been bowled over today when I learnt that over £6500 has been raised so far and there is still 4 days until the actual day. Karen, Janet and the team from Craigmillar Park Golf Club have done amazing work to get this day to together and I hope it will be a great day and we will get decent weather for the day too!

Everyone knows someone with asthma but not everyone knows someone that has died from asthma. Recently in the press it was announced that The Apprentice star Stuart Baggs died as a result of an asthma attack at just 27 years old. I have several friends who died from asthma attacks or complications as a result of one. Asthma should not kill people and it should not dictate peoples lives the way it can for many. The money being raised at this golf day is invaluable and vital to continue funding ground breaking research to help one day find a cure for asthma.

A cure to me would mean freedom. It would mean a life with no medication, a life with no fear that I might do something that can cause me an asthma attack, a life playing sport again. It would just be the life I so desperately want but really struggle to have sometimes.

I am really looking forward to Friday and seeing the day unfold.

All consuming

What do you do when everything you hate in life is everywhere you go??

This is what my asthma feels like just now. It doesn’t even leave me alone when Im asleep. I get woken up coughing, wheezing and gasping for breath. When Im awake its the same. I try to blank the tight feeling in my chest, or the low whistle that seems stuck in my head but it is ever present in my chest just now. When you have a bad day you can run away, hide in a darkened room and leave your fears and stresses behind but as I run into a darkened room my fears and stresses follow me and sit right next door to me. I just can’t get away from it.

Many ask me why I get involved in the research centre so much if my asthma bothers me so much but that is exactly why I get involved with AUKCAR so much because for asthma is everywhere and if I can use my experience to the benefit of research and others then fewer will have to suffer a life dictated by asthma.

Even if I was not putting my experience to good use I would still be all consumed by it as I can’t get away from it. If not away from the asthma then I still have the side effects of the medication used to control my chest. It is just never ending. One wish I would really like just now to to get away from it. But even that can’t be done. I often think if I do nothing then i won’t feel the effects of shortness of breath or being wheezy but even when doing nothing I find I need to reach for my inhaler or get woken up needing relief. It feels like my lungs hate me as much as I hate them.

I am on the count down to seeing my consultant on Monday. I am filled with apprehension, excitement, nervousness, and a slight bit of fear. I guess I want so much to change and hope for something to change but am very scared that there will be no change.