Making asthma visible

Today my youngest brother published an article for the Daily Record. Out of all my siblings he has probably seen me at my worst. He has been there when I have been in tears because registrars cant get an arterial blood gas and they are getting stroppy because I kept flinching when they hit the nerve or worse the bone or visited me when I was in hospital down south and he was still a school boy. He has known about my passion for the issue of smoking on hospital sites as it has caused me so many issues and latterly when my asthma has stopped me doing more he has taken an interested in the work I have been doing to try and raise awareness about asthma and how severe it can be.

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It is a really hard read. Seeing everything down in black and white in one place about how asthma has controlled so much of my life. I feel bad that this article has upset so many. I know my mum was fairly upset as she has obviously been through it all with me and then Nick as well. He has lived with me and yet he didnt know or understand just how bad it can get.

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I know others who have asthma just like mine and have asked if it is ok for them to share this article. I want everyone to share it. If it can show people just how serious asthma can get then I want everyone to see it.

I have kept this blog for so long and written about how asthma has affected me, what being in hospital has been like etc but I never read back over my posts. Not one post has been proof read and thats how I like it. It keeps the emotion real and honest.

I am really proud that my brother has decided to take this on and try to help people realise how serious asthma is and that you cant always see the true effects that asthma has on someones life. It is sad that it takes shocking stories to highlight the devastation that asthma can cause.

 

Recovery- its not easy and so frustrating!!

One thing I have become very aware of is how we adapt to recovery in different ways. This last hospital admission has really highlighted that to me as recovery has been far from straight forward and a totally new experience for me- even after getting my knee operated on was easier than this.

Previously when discharged from hospital  including critical care admission I have been focused on rehabbing my lungs and getting myself back to my baseline so I can get back to work and back to doing the things (I know there will be many reading this laughing saying I run back to do all sorts before I am ready and need to take more time- my family mostly).

The physical insults on my body as a result of a severe asthma attack are normal. The dot to dot of bruises were there have been attempts at bloods being taken, injections, arterial stabs and then of course the cannulation attempts and the effects of keeping that cannula in for 10 days (7 days longer than meant to but it still worked so it was staying put) because despite the burning while the potassium, magnesium, salbutamol or aminophylline going through it still worked and you could take a decent rate of fluid going through it, but these all fade. The battle wounds disappear not long after getting home. They cause no real pain and do not last (except a few scars but you don’t notice them).

This time it feels like everything has been flipped on its head. The physical insult is still with me and will no doubt be with me for months and as many people have told me it is likely to be a painful recovery. This is a totally new experience for me. The physical insult is still visible as well. My leg is black and blue which seems to be getting better now but it is taking its sorry time. This is the only outward sign from my last admission.

To look on the positive side of having a foot which I have no feeling or sensation in, a leg that has this burning nerve pain that sears through it any time I move has meant I have been resting….ALOT. I have been confined to sitting or lying as much as possible. This has been fantastic for my lungs and post hospital lethargy. My mum commented how much my lungs have recovered from this admission but it did not escape her that i have had an enforced rest due to my leg being in such a state.

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It has really broken me not being able to just bounce back, even being able to just get back and have independence. When you are unwell in hospital it is ok to ask for help for things like getting about, up to the toilet or even help with a wash but once home these are tasks I feel I should be able to do without thinking. If I need to get something I now need to think about it:

  • what am I getting up for
  • do I have my leg brace/ splint on
  • is my stick near by
  • what else do I need to do while I am up so i can limit the pain that is induced by moving

Mentally having to think about everything you do it tiring. Small things like going for a walk are exhausting. I have to concentrate so hard paying attention to what the ground it like I am walking on, where I am putting my foot and if there is a handrail or something else to hold on to while going up or down a slope or stairs.

I know I need to be really thankful I am alive and able to be at home etc but it is so hard some days watching the world go by, friends moving up the career ladder, going on wonderful holidays, starting families and I see myself going backwards. I have less and less freedom, reliant on so many people, yet back away from so many people because who wants to be around a 33 year old who cant even look after themselves properly and do the things that every other 33 year olds do.

But I have a lot of things to be positive about and have ideas in the pipeline about how to improve my life, get myself back on track and really do some work to try and get more people to understand asthma and all that goes with it. I never thought asthma could do what it does. It is all the secondary impacts it has on your life that are not spoken about and are not known.

I need to keep finding the positive each day and go to bed knowing I have done something productive with my day even if I have not gone outside or interacted with anyone.

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While I breathe I hope.

We need to stop Mepolizumab

Under a month ago I was writing about how I had been a year on mepolizumab. The drug that I thought was going to be my wonder drug and make my asthma easy to control or so I thought. You can read the post here.

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Part of me wonders did I know deep down that I would be stopping this treatment? I know in my last clinic I had asked my consultant if he thought I was benefiting from getting the drug. He outlined why he thought it was worth staying on it so we agreed I would stay on.

In just a few short weeks after that clinic and chat the words came out my consultants mouth that I didnt want to hear. He said “we are going to stop the mepolizumab treatment because I was not getting the results he wants and while on it I have had some of my most severe attacks”. He felt he could not justify me staying on it as I was still struggling so much and my attacks were getting worse again. He is also concerned about all the other issues I am having with my body which he cant say are due to the mepolizumab but equally he cant say they are not. He is worried about the unknown side effects from the drug due to it being so new.

To say I am gutted is an under statement. It was meant to be my wonder drug. It wasn’t as much as I try to convince myself it was working I cant be sure. It did reduce my eosinophil count which is the only result we can see conclusively that changed once starting it. Otherwise the things like recovering from attacks and bouncing back from colds quicker I cant say are due to the mepolizumab or if they are due to not working in the hospital. I cant say either way. I wish I could say it was due to the mepolizumab but I cant.

So what now??

This was the first question I asked my consultant as once again I feel like I am in a constant state of limbo, reliant on oral corticosteroids which have the be reduced but any reduction exacerbates my asthma again so I will be searching for that drug which can offer me stability. If only prednisolone did not have such awful side effects and you could stay on them with no worries- that would be magic!!

The good news is that there are new biologic treatments out there. There is Fasenra (benralizumab) which I doubt I will be eligible for. I am excited about the results people have been getting from Dupixent (dupilumab). In the UK dupixent is currently only allowed to be used in patients with skin conditions but over in the States there has been a lot of success for people with aspirin sensitive asthma. I hope that perhaps dupixent might be approved for use in asthma because I think the main issue which makes asthma control so hard to achieve is being anaphylactic to salicylic acid- a compound of aspirin which naturally occurs in just about everything.

Until then I just need to sit tight, do the best I can to keep my body as healthy as possible, minimising the risk of attacks and focus on getting better and have a positive mental attitude.

Severe asthma- family and friends misconceptions.

I was asked to write this blog post by Asthma UK as their report about severe and difficult asthma has just been published and the statistics are shocking. Asthma is not taken seriously or respected, some people don’t take their medication as they are meant to for a variety of reasons but this can be fatal. Those with asthma and those who know people with asthma need to understand just how serious it can be.

I consider myself very up to date with the latest asthma treatments, ensure I taken my medication as I am meant to and when I am meant to. I ensure I step up and step down my medication as my symptoms ebb and flow according to my personal asthma action plan. Even with my diligence to treatment and keeping myself well it is sometimes no where near enough and asthma wins over you, leaving devastating consequences such as death, the need for life support machine, very toxic drugs to relax the smooth muscle int he airways.

I have lived with asthma almost all my life. Over the years it has progressively become more difficult to control and severe which has impacted my own life and also my families lives as well.

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To manage my asthma I am in the very fortunate to have a team of specialists at the hospital who work hard to ensure I am on the best medication and most appropriate treatment aiming to control my severe asthma as best as possible. Despite this support and regular contact with the team my asthma remains severe to the extent I was put in a medically induced coma and was on a life support machine just under a month ago. I am sure if I did not have the team of specialists then there is a high chance my life would be very different if I was to have a life at all.

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Having severe asthma has resulted in many life changing circumstances from the sheer number of medications I require to control my severe asthma but then also medications to treat or prevent the side effects caused by the medication required to help my breathing. I currently take a total of 37 different medications, 14 of them are for asthma and 23 are for the side effects mainly caused by years of oral corticosteroids. I have also had to give up playing sport, change my career and now have had to give up my career, but the biggest impact has been on my family and close friends.

Living with severe asthma most of my life also means my friends and family have also lived with it too. They see how I try to manage my condition day to day, witness asthma attacks, call 999 for me when I don’t have the puff to call them myself, watch as helpless onlookers while an ambulance, with lights flashing and siren going, takes me to hospital as quickly as possible to stabilise the attack and make my breathing easier and then finally visiting me either in hospital or once I am discharged home. They see all this as well as my determination to manage my asthma desperately trying to ensure it does not take over and dictate my life. Despite witnessing all the above they accepted that this is what my asthma is like and that is that. An assumption was made that my asthma is as bad as it would get and my breathing wouldn’t get any worse than they have all witnessed. They thought this because I am under the care of a specialist asthma team who I can phone for advice whenever I am struggling which in my family and friend’s eyes means my asthma cannot get so bad that I may have a near fatal asthma attack.

My brother commented that he had become used to my asthma and almost complacent about how bad it could be. He said he has heard me speak recently of others who have died from asthma or friends who have been in a very serious condition but because I now have such a specialist team then I would be ok. It was everyday life me having severe asthma with the potential for requiring hospitalisation. He had taken this as normal and accepted it. So events earlier in the month were a huge shock and wake up call for the whole family because they had assumed I was safe with my asthma because I have some of the best people in the country looking after me and my asthma.

I look back now and see how my family normalised me being in hospital and me going to ICU so often which is really shocking. Going to hospital often should not occur let alone going to HDU or ICU that often. In any other health situation or if this was one of my siblings then it would not be just run of the mill and would be a life-altering event for the entire family.

My best friend who has known me my entire life and has been through thick and thin with me, seen me have asthma attacks and visited me in hospital never thought asthma could get as serious as it did during my last admission because I was under the care of specialists. She could not understand how asthma could get so bad when you are taking the latest medication that is available and have access to a team of specialists. She said she had never seen me look so unwell and vulnerable, not being able to do anything for myself reliant on others for everything.

The new report about severe and difficult asthma, which has launched by Asthma UK, makes me feel so fortunate to have such a good team and access to specialist asthma services to manage my asthma. Even with everything I have available my friends and family don’t fully understand how severe and life threatening asthma can be. I am sure if I did not have access to the specialists then asthma would have killed me. Everyone who may have severe asthma or difficult to control asthma needs to have access to specialists to help them live the lives they deserve to.

What do you do on days when there is no air??

Today has been one of those days where it feels like there is no air. You are left gasping for breath just moving a few meters and even sitting still feels like you are trying to breathe through a pillow. It is horrible and unrelenting. Not only is there no air and very humid the pollen count is through the roof, pollution is high- just about everything thrown in that an asthmatic does not want to see in the weather report.

I feel like I have clock watched all day willing the hours to go by until it is night and there might be some relief as the sun goes down.

But what do you do on days like this?? What can you do to take your mind off the effort that breathing brings when even eating and drinking is an effort.

Today I have just made sure I have everything within my reach, nebulisers, tv remote, phone, water. Trying to limit the activity and not making any movements that can be avoided. It is tough as you always think you have everything to hadn’t and then you don’t.

I have been lucky today that I can watch the lacrosse European Championships as it is being streamed live which has passed the time very well. I have found I have been dozing on and off too. I am still so grateful that I have my electric bed so I can prop myself up, and relax easing my chest sightly. I am also super fortunate to have a Dyson Cool Air Fan with filter which has been life saving today and on previous warm days. I have had it on pretty much permanently when I am in as it does offer a lot of relief and is not just blowing warm air around. It is actually cold air it blows out!!

When the weather is this hot and muggy I find eating a huge difficulty. I have no appetite and anything substantial that I do eat I find myself feeling like I am choking as I just can’t breathe properly. This is not isolated to when the weather is like it is but also when I am unwell with a chest infection or in hospital post acute exacerbation. I have found my solution to this though!!!

Strawberry Yazoo is my go to drink. Whenever I am not great this is what I like to have. It has all the pick me ups you need but also does provide you with some nutritional benefits too- although you should not use them as a meal replacement I do find that when my breathing is bad these are the best things. I also always have a fridge and freezer full of fruit pre cut or ave berries etc so I have eat them easily and they are not too bulky, the freezer always also has ice pops, ice cream, ice lollies because you just need them to cool down but also nebulising a lot dries my mouth out and makes everything feel funny so the coldness is really nice on my mouth too.

A lot of people have been messaging me today with their tips and tricks for the hot weather. These include:

  • Bowl of ice in front of a fan
  • cold showers or bath
  • driving in the car with the air con on
  • a cold towel on the back of your neck

Others have also suggested going to hospital but I just think that would be as bad except they could give me IV mediation to make my lungs happier but it will still be airless and really hot in the wards- in fact probably even hotter than it is in my flat and then you add in lying on a plastic mattress. I think I will stay put unless things do get very difficult and I am getting close to my limit of what I am allowed to do at home. One friend did say hospital wouldn’t be that bad because ICU has air con!!! I would hope that I would not need ICU (even if air con seems like a nice idea)!

Any other ideas people have for staying cool and making the lungs feel a bit happier please share!!

Smoking on NHS sites- it is STILL happening!!

I know many of you will think I sound like a broken record particularly as I have written several blog posts around the issue of the smoking ban on NHS premises. The first of my posts was back in 2015 on April 2nd. written after legislation was passed by the Scottish Government to implement a ban on smoking on NHS hospital sites. This came into force on the 1st April and must have been an april fool as it is still not been addressed. The links to other posts surrounding smoking on NHS sites are:

Over the course of time I have been in touch with various different outlets and services to try and get action taken on the issue of continued smoking on NHS sites. The situation for me has only go worse. It appeared that every day there were more and more people congregating outside the main doors of the hospital smoking. This could be a mix of patients, visitors and most shockingly people who worked in the hospital.

For me it got to the point that even coming to work half an hour early was not enough to avoid the people smoking. Eventually it made the choice on stopping doing clinical work easy as it meant I would not be putting my life at risk just to get into work. In fact the other week I had to go to the Royal for a ECHO of my heart, I called to have this rearranged because already feeling very chesty and unsure if I was going to need to be admitted, I saw this huge group of people smoking right outside the doors. I couldn’t risk going past. It may have cost the NHS some money by me cancelling last minute my appointment but it is far less money than the amount of money that would be required for me to go to A&E, +/- ICU, and the ward all because I tried to get into the hospital (a plan of safety I might add) to attend an appointment. In an extreme view the select patients that are smoking are preventing a group of patients accessing healthcare safely. What will it cost for this to be addressed.

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(Photo above was me after having an attack trying to get in to work a few years back)

Clearly legislation being passed in the Scottish Government is not enough. I am unsure why the issue is so much worse at the Royal Infirmary of Edinburgh than other sites in Edinburgh.

If the smoke did not have such a bad effect on my lungs physically I would go up to people and tell them they cant smoke there and they need to move off hospital property but that is just asking for a hospital admission for me. I think what makes me really angry and disappointed is that no one is willing to address the smoking issue.

I took the opportunity when there was uproar about parking and parking provision to use this to voice my concerns about the smoking. I got in touch with various MSP’s and had some great feedback from them and help from them however I am totally disgusted by NHS Lothians response. They wrote a letter to my MSP which basically says what they do just now is enough and no more can be done. What they said they have done is:

  1. Provision of support for patients, staff and visitors who wish to give up smoking
  2. Provision of advice regarding medication which helps manage nicotine withdrawal
  3. Promotion of education and training for managers and front line staff in the implementation of the policy

What strikes me with these actions is that it is all about what they are doing to help those that smoke nothing is there to help those who do not smoke and are being affected by those smoking. The actions are also leaving it up to the smokers to get the help. They are not actually doing anything to stop the smoking in places that are meant to be no smoking. The letter also sited the design of the hospital means that people are likely to congregate at the doors to smoke.

To say I was shocked, appalled at the letter is an understatement. The over riding emotion though was disappointment. My MSP had put that one of the reasons for me not working at the hospital just now was due to the issue of people smoking but this was not even mentioned in the response. There was a line that said they were sorry I felt the need to report this complaint and they apologise for the distress and inconvenience this has caused. Distress and inconvenience is an understatement- they clearly have no idea about what going to intensive care is like, what fighting for your life is like and knowing that the very place that saves your life is also the very place that could take your life too.

I have no idea what to do now. Will I be able to return to work in the hospital if this issue is not resolved? I don’t think so. I love my job, but I love my life (most of the time) and if doing my job is going to kill me can I really justify going back to work.

I will spend as much time as possible to try and get this situation the attention it deserves because there is no way it can only be me that is suffering. There must be hundreds if not thousands of other people being bothered by this.

Below are links to some posts I have written around about the issues I have dealt with to do with smoking and people smoking on NHS sites.

23 days on and its only got worse is a post I wrote 23 days after the so called smoking ban came into force. It appears to have only made things worse. I am not one for advocating smoking but the removal of the smoking shelters has made things so bad.

Returning to work in a fog of smoke is about returning to work after having an asthma attack as a result of second hand smoke. Reading it back I get quite emotional as I was struggling to accept that I had done nothing to myself to end up with lungs like this- often I wish I had done something like smoked as then at least there is a reason for my lungs being so bad.

Smoking on hospital sites reflecting back and just finding the issue getting worse and worse. Also thinking of ideas of things I could do that would maybe have some effect on those smoking that they would not like much like their smoke has on others.

Bad weather makes smoking worse

Passive smoking what does it mean

The NHS long term plan

Parking is not the only issue at the RIE

 

Looking back at #HealtheVoices19

The past few weeks have been really tough, Im not going to lie but there have been some very dark times and hard times. Although my lungs and breathing have been manageable it has been bad enough to limit what I am doing and I have had to increase my steroids again to get me though. Mentally it has been tough. Getting new diagnosis’s is tough. My last post I spoke about how steroids are the gift that keeps on giving but they are also giving me life so I have to take them.

Social media has been such a good support network for me particularly on days when I just can’t get out and about.

One thing I have noticed is the friends I made while in Dallas are the ones who are always there with comments or free to chat. I cant believe that I only met most of these people for 3 short days but to me I feel like I ave known many of them for ages. I am so thankful for the friendships I have made and just wish I was not the other side of the pond from them as I would desperately love to see them all again. Their support is unwavering. I wish I could give them the same support they give me. I am not sure if they know the impact they have had on me. Every single one of them has their own story to tell, own problems and challenges yet they still find the time to look out for others and wit their advocacy work they are improving the lives of others.

I realised I have not posted many of the photos from Dallas so below are some of the photos from HealtheVoices!!

This is just a small selection of the photos I have from HealtheVoices but they are all part of my tribe. They get me, they know what to say and they accept me for being me and who I am.

Thank you everyone!!