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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Cleaning products and lung health

Reading the BBC news online I came across an article about cleaning products and lung health. A study carried out in Norway found that using a micro fibre cloth and water was suitable for most purposes rather than the products full of chemicals which advertise themselves as killing 99.9% of all bacteria etc.

Cleaning particularly house work is something that has to be done in all homes, offices, public places etc. There is no getting away from it unless you prefer to be in an area which is not cleaned. Not many people enjoy cleaning and it is a chore rather than a hobby or enjoyable past time (forgive me as I know there are some people who do enjoy cleaning and find it therapeutic) with needs to be done. Many will leave it as long as they can possibly get away with before they get the mop, bucket and all the different cleaning products out to make everything sparkle and smell nice while removing the limescale, grease, dust etc from surfaces.

The reason I am writing about this is because for some people like myself cleaning and cleaning products can be life threatening causing acute breathing difficulties and allergic reactions. A study highlighting that water and micro fibre clothes are just as good as Mr Muscle, Cif, Cilit Bang and all the other products which you end up buying which all have a different job to do in the house is fantastic and could potentially remove a massive risk to my health.

You wouldn’t think that cleaning products could cause such big issues. You may be thinking that of course some products particularly those containing bleach will set my asthma off and why am I making a whole blog post dedicated to cleaning products. Well for me other than the strong chemicals posing a risk to my asthma most cleaning products also contain salicylic acid which I am very allergic to.

At home it is ok and I can avoid things that pose a risk by just not using them and finding alternatives. I am in control of what is and what is not used to clean my flat (whether I am doing it or my Mum) so I can eliminate as many risks as possible. However out with my safe haven of home, there are cleaning products everywhere- work, restaurants shops, hospitals etc. I do not know what is being used or what has been used on the objects I touch however with this new evidence suggesting that there is not always a need for chemical products, there is some hope that places may adopt this and change their cleaning regime to water and microfibre clothes.

For those who are not allergic and don’t have difficulties with their breathing must think what am I going on about and why am I making a big deal. Well cleaning products have been life threatening. Once I was not aware that my nebuliser mask had been cleaned by a member of staff on the ward when I had been admitted to hospital. They thought they were being helpful and even the staff member admitted she had assumed you cant be that allergic to even mild cleaning products and she thought it was mainly food stuffs. The result of the clean nebuliser mask was this:

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This photo I took after I had been given oral and IV anti histamine, IV steroids, a number of back to back nebulisers and about 4 hours after the initial reaction. You can clearly see were the nebuliser was on my face and where I have reacted to whatever it was cleaned with and the residual cleaning product left behind.

In hospitals it becomes even trickier to try and avoid cleaning products and many of them seem very toxic given some of the bugs they need to kill to prevent the spread of infection and increasing the number of people having to stay in hospital longer because they have not been able to recover from their initial illness due to developing another illness from exposure to bacteria. I would never expect the NHS or hospitals to change their cleaning regimes as the infection control teams will have assessed the best possible way to ensure the wards are kept clean and safe. Having said that the products used to achieve this do pose a really big threat to me and have resulted as fair few times in me staying longer in hospital due to having an allergic reaction to some sort of cleaning product being used. It has once been such a bad reaction when I was in hospital that I had to be moved to the critical care unit to be stabilised.

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Above is the remains of an allergic reaction. I think this was a good 8-9 hours after the reaction. I was in hospital due to a chest infection which had my asthma worse. I had narrowly avoided going to critical care when I was admitted but did have to be in a monitored bed and attached to all the machines. This meant I wasn’t allowed up to the toilet and had to use a commode- which I used but when I stood back up to get back into bed I felt awful. My skin was burning, itchier than hundreds of midge bites, my heart rate jumped up to 180 ish and breathing was very difficult. Thankfully the respiratory team had just arrived to review me anyway when I had this reaction. The Dr’s were looking at the monitor as my heart was going mad, and my oxygen saturations dropping but the respiratory nurse specialist who was also with them was talking to me from the end of the bed. She said she could just see the bright red rash spread before her eyes and soon I was scarlet all over with parts of it blotchy. Again I was given everything to treat it and quickly moved to the critical care unit. It turned out the commode I had used was cleaned with some other product rather than the normal one so the contact of it on my skin was enough to spark a reaction.

There have been other situation where cleaning products have caused a reaction for example my youngest brother gave me a hug once but the washing powder he used I met have been sensitive to as where bare skin touched his jumper I had a blotchy reaction which looked very bizarre- almost like a golfers tan except the tan was red inflamed irritated skin and not a nice bronze colour.

From this you can see that for me cleaning products pose a huge risk but not predominantly from an asthma point of view but an allergy side. Of course the allergic reaction in turn sets my asthma off due to the irritation to my airways from the chemical etc etc. It would be fantastic if more studies were done which further proved that chemical based cleaning products are not required and water with a micro fibre cloth is just as good.

This would make the risks to many not just myself but other who have allergies or asthma which is triggered by strong smells from cleaning products or the chemicals themselves much less and mean that we are able to preserve our lung function and lung health by not exposing them to harmful triggers. Until the time comes and chemical based products which cause me harm are less widely available I have my own way to try and protect myself. I have a vogmask which many other brittle asthmatics, ILD or CF patients recommended to me. This mask has a filter to can protect me from inhaling the chemicals which could cause a reaction. This won’t eliminate all the risk as there is still the risk from contact. This is the vogmask which can be bought online. I do feel pretty self conscious in it just now if I wear it in public but I am sure as I get used to it and reap the benefits from it then I won’t notice it so much.

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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.

Great Expectations

Yesterday I saw my consultant in clinic. His secretary actually called in the morning to cancel it as Consultant wanted to have a joint appointment in a few weeks to finalise the emergency care plan that was being written should I end up in hospital. However recently I have not been really really unwell but not being doing great either just bobbing along below par. So I spoke to him on the phone to ask what to do about my steroids and that I had not been feeling great. He heard me and said I was to come up and see him in clinic to see if I needed admitting. I was to keep the appointment for  a few weeks time as well.

After my last clinic appointment I was really happy. I had a goal that if my lung function remained stable then I would be able to do some light exercise and go to the gym to do some weights ad core stuff. I have missed the gym so much. I don’t know what i expected when I did lung function yesterday. But it was worse. It was 52% of predicted last time it was 47% today. Less than half. It has been about 5 years since my lung function was this low. Part of me is not surprised and part of me is devastated. I left the lung function room not knowing what to think really. I saw consultant who said I was ok but we were not continuing with plan to reduce steroids and he would see me in a few weeks. I can go to the gym but no cardio just do light weights and core stuff nothing that will push me too hard. At least its something. Not what I was wanting but I can’t be greedy and expect to be able to do things when my lungs are worse than they were a month ago.

I am hoping that with just a little bit of exercise I will improve my core and perhaps my posture which may help my breathing.

My next clinic is in 3 weeks so not long but will aim to see a better lung function then.

Below is a post I wrote and never published but wanted to include in it today. I wrote it after a my New Years post where I had said I did not want to set goals and targets for this year. In actual fact I had. I set them everyday. Just tho post above shows I set targets. I do it without thinking. Everyone has goals and targets even if they are not consciously making them.

Almost contradicting my last post (post from Dec 31st 2014) where I said I didnt want to set goals to achieve for 2015 in the back of my head I did have some goals and aspirations because it is who I am. I can’t move away from the competitive nature I have.

I wanted to try and stay away from hospital and feeling unwell confined to my sofa for what feels like days on end. I have so far avoided hospital other than for work but since Hogmanay I have been on my sofa struggling with shortness of breath and wheezing.

It is so frustrating because just as I think I am getting somewhere and getting stability back in my life. I was so buoyed up from my last consultant appointment where he said that if my lung function was stable by the next time I see him on the 21st of January then I can start going back to the gym and some light cardio work and some weights. The main thing for me is to get some exercise back into my life. It has been a huge part of it even through everything with my chest. For the first time I see a lack of muscle definition in my arms and legs which is something I have always maintained but now it is slipped away.

I am scared that these past few days are an insight of what may follow. Will this be how the rest of the year will play out. Am I going to get my life back. Or not even get my life totally back but just a little bit of it.

On the other side as much as I am frustrated about how my asthma is and how it is dictating my life I have an underlying fear that if I do go back to the gym how much will I be able to do. While not in the gym I know I will not be able to do what I did once before but that competitive mentality I think may slip back and I will push myself because it is what comes naturally to me. I am also really scared that when I do go back to the gym I will cause myself to have asthma attacks and will have that exercise induced part of asthma back in my life. Just now I try and lead my life in such a way that I minimise any chance of putting myself in a position where I might risk an asthma attack. Part of this means I am not living my life to the maximum but it is a balance of good and bad. For me by not living my life to the full means that I am also not risking my life.

I can see that so many people want to live their life to the fullest. I see those who have had transplants and have been given that second chance at life. With this second chance they don’t want to waste a single day which is admirable and I understand why they take that approach to life. I wish I could take that approach. But I have a massive fear of going back to the yoyo of in and out of hospital.

By not pushing my self to my limits I have significantly reduced the amount of time I am being admitted to hospital, the length of hospital stays is shorter and I no longer end up having to go to critical care with every admission.

It is a really difficult balance. Getting the balance between living life and not jeopardising life.

Guest Blog from Wendy

Continuing with the guest blogs this next one comes from Wendy. Wendy too suffers from more severe asthma aka Brittle asthma. I got to know Wendy I think initially through AUK perhaps and latterly on asthma groups. I think Wendy’s blog was one of the first blogs I started reading many many years ago and took comfort knowing I was not alone in my struggle with my asthma. Here Wendy shares her story.

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When you see me in the street, what is the first thing you notice about me? Is it something cosmetic like my eyes, hair, facial piercings and tattoos? Is it my style of dress? Or, is it that I am sat in my wheelchair and wear an oxygen cannula? Many people stop and stare at me in my chair and whisper to themselves. Sometimes though, people ask me about what it is, what it does and why I have to wear such a thing. The simple answer is this, I have severe asthma.

When I was first diagnosed that my asthma had well and truly returned (as my asthma followed a rather atypical pattern though my childhood and only started to re-emerge when I was about 15, then it went away again for a few years) I was 18 years old. I had developed this weird cough, which never went away, and sometimes I got out of breath just doing what was normal for me back then, things like singing in a band or walking around to the local guitar shop/practice rooms. Back then I never realised just what path my life was about to take. I remember taking the first ever puff from the blue inhaler I was given and thinking “OK, so this is going to be part of my life from now on” and for a while, I was constantly back and forth to the doctors to find the right treatment. I was sent to a consultant who did tests to see what my lung function was (back then, it was 89% which is very good) and I was given better inhalers and Singulair tablets, and for many years, that was enough and I was able to enjoy the rest of my teenage years.

Although, sometimes, as hard as I tried, I still had severe attacks every so often but there were only 2-3 of these in a year. I’d go to A&E, given nebulisers and sometimes the odd steroid injection, pred and other medication and I would be fine. I even used to work as a cleaner at the local hospital and for a time at a bowling alley with dreams of starting my HND in Media Studies and getting my own place. At age 20, I finally started on that path and I remember the day I moved in to the first flat of my own. I’d been to view the place and had fallen in love with it. It was an attic room with its own separate bathroom (which was almost as big as my room but was weirdly laid out, also I used to pile my washing up in there and do it on the weekends, which was always a bit weird but hey, for nearly a year it worked). The view from my bedroom window (well, the big one) was always a stunning lookout at the woodlands. I was so happy and I was so ready for my life to begin.

Unfortunately it wasn’t to be. I won’t bore you with the intricacies of who did (or didn’t) do what and when or what could have happened/should have happened. Those things aren’t important now, all that is important is that due to poor care in the beginning, consultants not understanding and trying to deny asthma as a disease and chronic infections my life is so different to what a typical 27 year old would be. I am on over 20 different medications, including oxygen, nebulisers and countless tablets a day. My lung function is 30-40% on a good day and I am reliant on carers to look after myself effectively.

The problem is that a lot of doctors are dismissive of asthma and how it can affect the lives of us who live on it. It’s a horrible and limiting condition and has changed my life so much over the last 7 years. Had I known sooner any way of preventing this, be it from pushing for better diagnosis sooner (all too often, people are too intimidated by doctors because they believe that the doctor knows best) then maybe I would have been spared the end result. It took me years to get my voice heard and it wasn’t even noticed until I had an attack which could have killed me.

I will never forget the first ever “life- threatening” asthma attack I ever had, well what I know about it. The first time I ever had a “life-threatening” attack, I was 21 and I had been staying in a squalid flat with my boyfriend at the time (we found out later that I had severe bilateral pneumonia which had been caused by this place). I remember during the day, we went out to town and I brought some models, whenever I see them I remember that day, and we were returning to the place when I was showing signs of not being well. I had decided to take a nap and then I woke up in a white room. I had a team of doctors around me, all talking indistinctively. My top had been cut off and my chest was bruised from compressions. A nurse was behind the bed holding a mask on my face and squeezing a bag to breathe for me. I found out later that they were moments from intubating me; I’d stopped breathing in the ambulance and they were worried that my heart was going to stop. The next thing I remember, I woke up properly a couple of days later on a ward with a nasal cannula on and being told that I was lucky to be alive. I’d apparently slept straight through and they were looking to move me from HDU to ITU. When I eventually left the hospital, I remember how it took ages to build my strength up and I had missed 2 months of college. But it opened my eyes.

Asthma is a real condition. It devastates lives and can kill. If doctors looked at it and saw it the way the people who live with it see it, then I honestly believe that the mortality rate and negative impact the illness leaves us with would be significantly reduced. Please read this as a cautionary tale. Don’t ignore asthma.

Wendy Bostock

(Author of “My Journey Every Step of the Way.”)

Go and visit Wendy’s blog at: http://myjourneyeverystepoftheway.blogspot.co.uk

con appointment!!!

Today I had my consultants appointment. It wasn’t entirely productive in some aspects but pretty good in others. It started off with weigh in and i have lost weight again bringing my BMI down to 18 now. I have been trying hard to keep my weight up but have been trying to be quite healthy too and don’t think I have got the balance quite right so far.Will need to put a bit more effort in.

Had lung function in their fancy new machine. Its not like the old vitelograph one with the pencil that goes and it goes along as you breathe. It is a fancy one and it is tiny. Each blow comes up in a different coloured line which is pretty cool. It also works all the %’s out for you too. I have used spirometry machines before that are different but it is mainly in peads where you have to try and blow out candles. I guess it makes it easier for kids to understand what to do! So my lung function has decreased a bit. I kind of expected that as my peak flows have been lower and I have been more symptomatic recently I think just doing more than I was before.

But anyway I saw my con and didn’t have to wait any time at all. I normally wait for a while so i came prepared with my i pod and a film on it. But i hardly had to watch any of it. I was seen bang on time!!! It went ok. We are trying to sort something out for the night so just now my theo has been increased at night in the hope it makes the nights a bit easier. Otherwise not much has changed and we not said much else. There was other stuff I wanted to talk to him about but I just never got round to it. I think i will need to go and see my GP to try and sort things out a wee bit.

I dont got back for another few months which is good. Feel a bit lost still with  the whole asthma stuff just now.