The Ventilator is in ICU

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I briefly mentioned this in my previous post but it has preyed on my mind. During my last admission I had a bit of a rough patch where if I am honest I was terrified to the point my youngest brother came in to see me and help me sort things out. I just kept being exposed to triggers on the ward and there was a huge lack of communication until things got bad and finally action was taken.

Eventually being seen by the respiratory registrar who was a bit brutal on two counts. First trying to get an arterial blood gas and being pretty arrogant with it. The whole admission everyone has failed at getting a gas- from junior Drs, A&E Dr’s, ICU Dr’s, ICU Advanced Nurse practitioners and the ultrasound machine, no one could get a gas but this reg seemed to think she would be the one to get it and of course she failed and hit a nerve prompting her to tell me that i had to stay still otherwise she wold get stabbed with the needle….when you hit a nerve its hard to stay still and the pain was excruciating so I didnt let her try again to which I was told I was refusing treatment. After my brother showed her the care plan in which it says about the difficulty in getting an arterial blood gas she changed her tone and was totally different. I think she saw I wasn’t just being difficult despite the arms which were covered in bruises which kind of showed I was being compliant in letting them stab me numerous times.

Anyway after all this she told me my asthma was so uncontrollable and brittle that the next step if I deteriorated was to go to Intensive Care because there was ventilators there if I should go down hill that much, and that we all know asthma can be very dangerous.

This has really prayed on my mind. I think because it was so bluntly verbalised with what to me felt like no real care or compassion. It was just said like a throw away comment. I have been thinking a lot about it over the past few weeks and it does scare me. I kind of have this fear now whenever I get a bit chesty and sort of don’t do something incase it could cause an attack which in turn could land me in hospital etc etc.

Trying not to live in the past.

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I try not to live in the past but its hard when you come across photos like the above. Excuse the dodgy hair which looks like I have just stuck my fingers in a socket. I had not but just run in one of the long distance running races during a school sports day. A common appearance was the slightly wind swept look given that my school was situated on the east coast of Scotland in one of the windiest towns St Andrews.

But seeing photos like this does bring me back and have a thought of how life could have been different and what would I be doing now. Don’t get me wrong bar the trips to hospital and intensive care stays and numerous needle pokes trying to find veins I really don’t begrudge my life and really do enjoy what I do and all the opportunities I have had but if things hadn’t been bad with my lungs I do wonder what life may have become. I used to be able to run and run and run. Once I got my pace I felt really comfy and could just keep running. I loved cross country, long distance and middle distance. I used to be not bad either and would win the 1500m at school sports day…maybe because I was the only one crazy enough to voluntarily enter but I really did enjoy it.

I still had asthma back then and would still go to hospital for attacks but it wasn’t nearly so debilitating. It would be more of a inconvenience but having an attack meant a couple days of games and then I could go back to it where as now there is no question about sport or any exercise its just not feasible…well there is some exercise as going up a flight of stairs raises my heart rate to what most people get in the gym so I guess thats my workout.

Its strange to think how much life has changed. I haven’t looked at these photos for years. I forgot I had them. The one below is the Sports Captains photo. I was School Ski Captain. I loved skiing, would ski at any opportunity and really proud to be ski Captain. I felt I sort of achieved things and look back on them with good thoughts but there is a small part of me that would like to be back there and pull on running shoes with no worries about being able to breathe etc.

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Again dodgy hair. I think I went around permanently with bad hair.

All these memories I guess make me up. Everyone has a path and mine wasn’t to be playing sport. I can’t say I didnt get enough sport at school or after school. I think I got enough sport played and things done before my asthma went bad and stopped me so I can’t complain and now I still get to be involved in sport particularly lacrosse and I love what I do. Back in the day when at school I would never have thought I would be so involved in lacrosse and help with the national team. I will play golf again one day I am sure of it when will be a question mark but I will try and I will succeed!!!

Sorry state of affairs in Asthma management

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It is gut wrenching when you read in the news all these medical advances in a variety of different conditions such as advancements in type 1 diabetes management, new techniques for donor nephrectomies in kidney transplants. better understanding treatment of HIV but then you see that since NRAD (National Review of Asthma Deaths) nothing has changed infant things have got worse. In Edinburgh the Lothians and Fife 34 people have died from asthma attacks in the last year alone. A record high. It is really scary to see that after a national report was released nothing has changed infact its got worse.

Its hard to sit back and watch these other chronic conditions have advancements which potentially could benefit the majority of those with the condition but with asthma there hasn’t been a widely available drug since the 90’s which is montelukast or singulair. there have been drugs such and omalizumab (Xolair) which if you are lucky or unlucky enough to have an IgE between 30 and 700, but it has to be between those levels. Its not licences if they are over or under, and its the same with mepolizumab (Nucala) except it is based on eosinophils and again you need very specific blood markers to qualify for these drugs. You also don know that they are going work and at £250-£500 per injection which you need every 2-4 weeks its an expensive process to not be guaranteed if its going to work or not.

In all chronic conditions monoclonal therapies seem to be the way pharmaceuticals are going. It is where the money is at but its not where the best treatment is at in conditions so complex as asthma. If you are an allergic asthmatic you stand a good chance of getting a treatment which will suit your asthma and phenotype. There are a number of new monoclonal treatments in the pipeline which hopefully will be approved by NICE if they are not too expensive.

But where does that leave the rest of us?? I really can’t see any change happening soon. Its been 20 years now since montelukast came out and yes it is good but its only so good. For me it is just another tablet I take which I know has some effect but I am not really sure how much it is contributing to my treatment. My consultant wants me to keep taking it so she must have some faith in it so I must to.

I can’t imagine how similar asthmatics in my situation feel. I know many though support groups and we share tips etc about how best to try and live “normal” life and we can share our trials, tribulations, accomplishments, but also fears of how bad asthma can get and seeing people die from it because after all 3 people die each day from it in the UK. It scary.

It prays on my mind a lot about the severity of asthma and what it can do. Especially when you have a Respiratory Registrar tell you in front of your youngest brother that you need to be in ICU because you need to be near a ventilator because thats how brittle your asthma is. But that is for another blog post.

I do think I am lucky and don’t lose all hope in asthma treatment but I think thats because I work so closely with researchers who are dedicating their lives to asthma and to improve the lives of people with asthma that I can see people are trying. I am also dipping my toes in the basic science world so will see what they are doing besides monoclonal therapies.

Atopy

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During this last admission to hospital I had an extra thing to contend with and this was allergic reactions. I have a severe aspirin allergy which tips over and causes me to be very allergic to salicylic acid which is in everything, from food, to toothpaste, to moisturiser. I follow a fairly strict diet excluding a lot of fruit and vegetables due to allergic reactions developing which in turn set my asthma off.

During the last admission for some reason I was more hyper sensitive to salicylic acid than I normally am. I started developing reaction to peoples perfumes, cleaning products, and certain foods which I considered safe due to their very low salicylic acid content.

It was really scary but weirdly I was kind of glad that I was having reactions because I had probably my worst reaction ever but it was in front of the respiratory team. The Dr’s were staring at my cardiac monitor because my heart rate went flying up to 180, but it was the asthma nurse who was standing at the end of the bed who saw the redness spreading over me. I looked like I had cremated myself in the sun and I felt that way to. The heat, burning, and itching was awful. The Drs acted so quickly and we got the reaction under control but it did mean I had to go to high dependancy which I desperately was trying to avoid!!! But I probably needed to as needed to have more treatment for the reactions.

Once on the respiratory ward it was a nightmare as perfume was setting me off and I would look like I had red man syndrome crossed with an oompa loompa! It wasn’t good! To make it worse the room on the respiratory ward was a 4 bedded bay so the patients kept spraying deodorants and perfume which would make my chest worse but to compound everything where the room was situated meant I couldn’t have the windows open because of all the patients smoking below in the courtyard bit where there is a huge number of signs saying no smoking but clearly no one wants to enforce this and those patients who are smoking are prepared to cause harm to other patients. The room was stifling hot but the amount of smoke was a nightmare. I feel so passionately about people smoking on hospital grounds and particularly at the doors that you have to use to get into the hospital. It is like running the gauntlet every time I have to go into work because you have to dodge the smokers who give you disgusting looks when you cover your nose and mouth with your jacket to try and avoid inhaling their second hand smoke.

But I digress. I continued having a variety of reactions to a variety of things. My consultant thought it was because my body was fighting so hard to breathe with the bad asthma that it couldn’t cope when exposed to allergens. I could have dealt with one or the other but not both at that time.

I now have a new medication regime and rely on a combination of anti histamines which includes taking chlorphenamine 4 times a day as well as using it if I have an reaction, along with 2 other anti histamines. This I hope will be temporary and only until I see the immunologist when they start in Edinburgh. Currently you have to go to dermatology when dealing with allergies so having a dedicated immunologist will be a huge benefit to Edinburgh and hopefully they will be able to do something for me so I don’t need to keep taking anti histamines all day everyday.

I have had to become super strict with my diet and make sure I am not eating anything with salicylic acid in it or using any products which has it in it to. The allergy side of things is kind of new territory for me as I have never really had to deal with reactions to this extent to such trivial things and things which contain hardly any salicylic acid in them. For me I know all the ins and out of asthma but this is new and something I really don’t want to get to know to well.

For the time being I just need to sit tight and see what happens.

Patient Centred Care

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I have quite a few different blogs in my head after my last hospital admission due to a variety of things that happened.

Where better than to start at the beginning.

It was the usual start= difficulty breathing so did I usual nebuliser treatments and thought I should probably call 999 as I wasn’t getting much relief. The call handler was great. I normally just hang up but she stayed on the phone with me until the paramedics arrived which was good as it took a wee bit longer for them to come so she was able to distract me from focusing on being scared that I couldn’t breathe.

The paramedics did their usual. Although my blood pressure was through the roof which normally happens but later on. I think it just shows that I had been struggling for a while given how quickly it went up but also how quickly my heart rate was going too. Apparently the Western General doesn’t take emergency asthma attacks anymore as they are not equipped (despite going there in February) so I had to go over to the Royal Infirmary which isn’t my favourite but as it turns out it was a good thing I went there. So blue lights across town which is something I can never get my head round, part of me would love to be feeling well when going across town with the blue lights to see where they go and stuff but to have blue lights is really not a good thing so not being able to remember it is not good either. I would prefer to get myself across town to the hospital without needing an ambulance or not require the hospital at all.

The guys in A&E are fantastic straight into resus and getting sorted out. The challenge of getting a cannula in started and once they got it in the radiographer who was less than pleasant trying to get me into odd positions and not sympathetic to the situation did her best to pull it out and almost succeeded but for the quick hand of the Dr.

I did laugh though as the Consultant who I saw first uttered those words all asthmatics hate ‘just relax and concentrate on your breathing’. I wanted to throttle him. He was a really chatty guy so I couldn’t at the time get a word in to say to him what I wanted to but after they got some magnesium, hydrocortisone and aminophylline running I was starting to feel a bit better and could talk a bit more. When he next came in I was able to wave at him and tell him about the BMJ article I wrote. He said he found it really good as he had never thought of asthma in that way and he thought that it looked so difficult for us to talk so we just shouldn’t. I explained that if an asthmatic didnt want to talk they probably wouldn’t rather than try to fit their words in around their breathing. There was a noticeable change in how he treated me after he read the article and was obviously applying new learning which s really rewarding to see.

The slightly negative part of the whole time in A&E was that they sent ITU to come see me as they felt I needed to be there rather than going to a monitored bed in the assessment unit. Thankfully an ITU Dr who has seen me before was the one to review me and gave me more time to try and get on top of things. I did manage this and was significantly better but was shocked when a nurse came and told me that I was going to Intensive Care. If I’m honest this freaked me out a bit. I had assorts of things flying round my head. I though I was doing better and I was wondering what they knew that I didnt, were my numbers worse, was I tiring and the adrenaline of the attack was keeping me going. I was quite upset by the thought of it. I said to the nurse I didnt want to go, who then got a junior Dr who told me I needed to be there. The junior Dr got the consultant who by this time was a different one from earlier as the shifts changed.

This is where I cannot thank the A&E Dr enough. I thought I was in for it and going to be told I was unreasonable, and didnt know what was best for me because the Dr walked in looking at me carrying a chair, shut the curtains and sat down. At this point I thought she was going to tell me I had to go to ITU and had no choice etc. I was so wrong. She sat down and asked me how I felt and gave me her rationale for going to ITU. But I was able to tell her my fears of going to ITU and just that I felt significantly better from when ITU came and reviewed me. But also I was able to share my fears about ITU. Every attack I have now I end up in ITU or HDU. I honestly thought this time I was doing better and didnt need to go. The Consultant spoke to the on call Resp Reg about me and my concerns etc. It was agreed that I didnt need to go to ITU and could go to a monitored bed but should anything change and I get a little bit worse at all then there was a really low threshold for me to be moved to ITU.

What I really liked about the A&E Consultant was that she was all about the patient, and what is best for the patient, and involving the patient in the decisions about their care. When first taken into Resus you don’t get a say in what is happening as they are running around trying to save your life and that is their sole focus rather than if you want that or the next but the move out of resus and into the high care area sort of signals the change in care and is a move when the patient can be involved in their treatment and have input into what they think best and have discussion with Dr’s.

I was and still am so grateful for the Dr who took the time to speak to me and listen to me about my concerns of going to ITU and why I felt I didnt need to go there. I understand that if I need to go then I need to go and ultimately if after that chat the Dr still said I had to go to ITU I would go as I am not going to go against what the Dr’s say but being heard and listened to makes such a difference.

As it happens I needed up going to Critical Care anyway but that was due to an anaphylactic reaction which caused my chest to deteriorate rather than just an isolated deterioration in my asthma.

I must say this really was an excellent example of patient centred care and when patient centred care is appropriate and when it is not.

Disgusted, disappointed and angry.

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I have a couple of posts lined up to be published after the past few weeks discussing my most recent hospital admission but this post I need to get down and off my chest before it eats me up and hampers my recovery.

I know that there will be people who read  this post and won’t like it but at the end of the day this is my blog, my writings, my feelings so I will use it how I see fit. I have kept this blog for long enough without being told what I can and cannot post so am not going to start hiding now.

This last hospital admission was really tough and I am now terrified of my asthma especially when you are told by a respiratory registrar that the reason you needed to be going to ICU was to be near a ventilator as your asthma is so brittle and difficult to manage. Whats worse is they said this in front of my youngest brother who was up seeing me because I was really upset about how my asthma was and scared it was going to get worse.

I was discharged perhaps earlier than I would normally have been but I had a family dinner which was important for me to go to, to celebrate and have a really enjoyable evening. I am now partially regretting pushing to get out due to the way in which some of my brothers behaved towards me. I know they have never respected me and the dinner really highlighted just how much they don’t care for me in their family.

There have been various things going on in the family recently that have pretty much ripped it apart and I doubt it will be resolved but what happened the other night disgusted me and will disgust a lot of the asthma community and I am sure charities as well.

2 of my three brothers (there are 4 but one couldn’t make dinner) arrived stinking of smoke as they had been smoking before they came into the restaurant. I sat quietly and didnt say anything, just took my inhaler and stayed calm. After the first course they went out and came back in stinking of smoke again which really bothered me this time and I felt really wheezy and chesty- so more inhaler. They were going to go out again at which point my older sister said no to them to which they swore and really didnt care. I piped up and said I was just out of hospital and could they really not as didnt want to get bad again given I was already feeling chesty and pushing myself being out for dinner.

I was disgusted at their response which was they needed a fag because they had been working all day. I couldn’t believe it. They were justifying them “needing” a cigarette because they have been working and have no care for their sibling who last New Year was put in ICU because of second hand cigarette smoke and who has just come out of hospital having been in critical care. I am still so shocked that they think that little of me they could say that and then create a stink about it. They didnt even ask how I was which is how little they care, but then they are self absorbed and I guess to them my asthma doesn’t bother them so why should they care.

The bit that bothers me more than this is that one of the brothers that was not caring about inflicting his second hand smoke on me was the one who ran the London marathon raising money for Asthma UK. I just feel this is so hypocritical raising money for a charity which directly helps your sibling yet you are prepared to put them at risk to satisfy your own “want”. My youngest brother stuck up for me but then he has seen me at my worst and was there at the end of that last admission when I was feeling very scared and vulnerable. He was there to give me a hug (despite causing me to have an allergic reaction- more about that in another post) and comfort me until things settled down and he could leave me in the ward. I am so so thankful to him for being there and for trying to make the other boys at leasts to thinking of themselves and think about someone else. It is not like I was making a fuss about nothing- it was a legitimate reason as it could have had the potential to cause a lot of problems. If I did have an attack I don’t think I would have had the energy to fight it as I had just been fighting for the previous week.

I would never wish brittle asthma on anyone but right now I wish those 2 could experience an attack just to see how scary, frightening, exhausting it is when you can’t breathe and nothing you can do will make it better. I spend my life trying to avoid triggers and you would think those closest to you would understand and try and protect those who are not well and shield them from harm, but that night it felt like they really didnt care and were bringing harm straight to me. Maybe I should have just stayed quiet, had an attack and then they would have been the ones directly responsible.

The reason I am posting about this and going into the small detail about it is because I am so disgusted by their behaviour and want people to know. Its not ok to behave like this, it has left me more scared than before. What is the point of trying to change peoples attitudes to asthma when those closest to you don’t care.

I need to make some tough choices and really think about if putting myself at risk is worth it because I can’t see them changing their views. I can see now they will say they were drunk and it was coz of the drink but thats not a good enough excuse. I need to start being selfish and think of myself to keep myself well.

I can never thank my other brother enough for sticking up for me but i think it is a losing battle with them but I do appreciate the attempt.

You wouldn’t think you would need to protect yourself from your own family.

Taking time helps to heal

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The first week of annual leave I really felt a little bit of a mess and just didnt know what to do with myself and everything seemed really negative and falling apart around me, but a week in and half way through my annual leave I feel things are starting to get back together and I feel much better for it.

I have had time this week to sit, think and evaluate what it important, what I should prioritise and what I shouldn’t but also to look at what is important to me both in terms of what I like and want to do but also in terms of what is going to keep me healthy and well.

I didnt go to the World Cup to volunteer and to say I was down in the dumps about it would be an under statement. I didnt think I would feel as down about it as I did. It shocked me just how much it effected me but its been for the good. I have been able to watch all the games live over a web stream which if i sit back and think about it I wouldn’t have got to watch all the games if I was there volunteering as would be working and doing stats rather than watching the lacrosse for sheer enjoyment and trying to work out plays and watch how decisions are made and coaches change their tactics according to how games are progressing has been great fun so there are positives of not being there.

I also got a lovely message from the Scotland team today as well thanking me for what I have done which brought a wee tear to my eye. That team are a really special one and each member I really value and glad to be part of their prep to the World Cup so I hope each and everyone of them is enjoying the experience.

This next week I am going to London on Sunday and doing a talk along with some other bits and pieces then coming back home again.

I will be able to spend the rest of my time up north at the cottage for a few days working on various bits of research I am doing and have a new role as part of a patient advisory group for the European Lung Foundation too which is exciting. I am already a patient advisor for a study they are leading but really looking forward to something different with this role.

I thought the 2 weeks were really going to drag as I wasn’t doing what I had planned a while ago and I sort of put it to the back of my mind my annual leave as I knew thinking about it would also bring about thoughts of what I should have been doing but wasn’t able to but I have had so much support from friends that the week flew by and I am sure the next one will to and I will be moaning about wanting to be back on annual leave rather than working!

I need to do some resting as chest wise its been a wee struggle this last week more so than has been for a while but I think thats because the weather has been quite muggy and humid never an asthmatics friend! So hopefully the rain that is pelting down just now will clear the air to make for happy lungs and happy breathing!!!!