World Asthma Day

On Tuesday 1st May is was World Asthma Day. I normally do something during the day, or post a video etc raising awareness about asthma, how serious it is, how  critically under funded research into asthma is. This year however I didnt do anything I just wasn’t well enough, my chest was far from good and lacked any ability to concentrate and focus on anything, mainly due to the high doses of prednisilone which leave you with a mind that has been put in a blender and constantly mixing your thoughts up and also due to the lack of sleep again thanks to the prednisilone but also my breathing has been getting worse in the late afternoon, evening and into the night making sleep difficult.

But World Asthma Day 2018 was recognised by Asthma UK with a huge thunderclap on how to deal with asthma attacks which reached far and wide across social media. However there was some very disappointing news also announced which is devastating and really makes you think how, why and when will those in power do something about it.

What Im talking about is the UK’s statistic on asthma deaths.

World Asthma Day 2014 saw the publications of the National Review of Asthma Deaths (NRAD) which showed the devastating numbers of people dying from asthma but also that over 2/3 of those deaths would have been preventable had they received the correct asthma care including having an asthma action plan in place, having regular asthma reviews and also correct inhaler technique. The publication of NRAD was meant to be a turning point in asthma care given the shocking statistics. I remember at the time thinking it was bad and that so many people shouldn’t be dying from asthma so you can imagine my shock, upset, dismay when I woke up to hear that asthma statistics have not got any better in the last 4 years in-fact they have got worse. Asthma deaths are 20% worse than they were 4 years ago making asthma statistics in the UK as the 5th worst across Europe and only one of three countries whose death rate increased rather than decreased. It is really shocking but then I sit and think a bit more about it and am I really surprised? I don’t think I am. I didnt think the rate would have increased as much as it has but if Im honest as a patient I really don’t see any changes that have had a big impact on asthma management, and if there are no changes there then there won’t be much of a change in the statistics.

As a patient who has asthma and does use a variety of NHS services because of my asthma I have not noticed any changes in how asthma is managed and monitored. I know my asthma is not run of the mill asthma and is more complex therefore GP’s and asthma nurses in primary care do not have a lot of input into my care other than my annual asthma review which the asthma nurse does at the GP survey. However the review tends to be me updating them on the new research that is out and what new treatments are available. I am often told that I know my asthma better than anyone so they are going to let me self manage but will be there if I need them. I understand why they do this however as a life long asthmatic and a very difficult to control asthmatic I cannot remember the last time I had my inhaler technique reviewed. I don’t think I am doing it wrong as take my inhaler the same way I always have. I also don’t have a written asthma action plan. I have bugged my (now old) consultant for one because being on maximum doses of inhalers I don’t have room to move should I get a cold or chest infection. Now that I am going to have a different consultant who i hope to have a better relationship with and will work with me rather than against me or just not work with me at all leaving me to do most of my management and hoping for the best (mostly I think i do the right thing!). But this got me thinking, how many other asthmatics like me who are difficult to control are just left to do their own thing because the asthma nurses they see say the same as mine that they are far more knowledgable than they are.

One of the other problems I see often and I think is a potential barrier  to reducing the number of deaths due to asthma is those who have asthma give it the respect it deserves and be sensible with it. Due to the difficulty I have with my asthma and the isolation I feel as a result of it I am in several support groups for asthma, brittle asthma and difficult to control asthma. It is here where you can chat to people who know exactly how you feel, how debilitating it is and the frustration  you feel when you try to do everything right but still your asthma is not behaving.

These groups are a great source of support however there is one very concerning theme which keeps recurring which no doubt is also a factor for so many asthma deaths and this is not getting help early.

I will often see posts made by people saying they have been using whole inhalers in a couple of days, or they are struggling to talk and having an asthma attack and they don’t know what to do. In these groups we do not give any medical advice but would suggest the person concerned follows their asthma action plan to which some would reply saying they don’t have on, or that they go and get seen by a GP or hospital. Again some group members would respond saying the GP does nothing except give them steroids or send them to the hospital. There is also the situation at night when GP practices are closed so you need to phone NHS24 and they will assess if you need to be seen by a Dr. Many people again don’t see the point in going to out of hours because they don’t know you so wouldn’t be able to do much. It really frustrates me when this happens. I can understand that asthma is very tricky to deal with as there are so many different phenotypes so seeing your own GP is preferable but it won’t always happen that way and more than likely it is during the night when you start struggling to breathe.

Now for the last, most serious, and riskiest behaviour that also occurs in these groups which could quite easily cause death. What am I talking about is when people post photos of their oxygen saturations or heart rate accompanied by a comment about how much they are struggling and finding it difficult to talk and don’t know what to do. Again naturally you would offer support and see what they have already taken, followed their action plan and if all this has been done the next step is to go to A&E to be reviewed, have their chest sounded and some treatment if needed to get their chest and asthma back under control. The problem occurs when you have given them some advice and recommendations like they asked for however they don’t take it. Many say that going to A&E is a waste of time because they get told their oxygen saturations are ok and their chest is wheezy but they will be ok. They may be given some nebulisers and prednisilone and allowed home. They see this as a waste of time as some feel they can do everything they are being given in A&E. They don’t see the value of attending as they see it as just getting some medication but actually the Dr or nurses are assessing them to see how much effort they are putting into there breathing and if they are using their accessory muscles to help, they will also have bloods taken which can show if they have any infection and require antibiotics. So it might not seem that much is being done but there is a whole assessment taking place. Then there are another group of severe asthmatics who won’t go to A&E early as they feel they are always up at the hospital being admitted for their asthma or being seen in outpatient clinic so they want to maximise their time at home so will stay there until they are really struggling which is when it gets dangerous as an urgent ambulance is often required and the resus room is on standby for you so you get treated straight away and stabilised before moving to a ward. I don’t think people realise that by staying home longer they are taking a big gamble that they will okish by the time the ambulance arrives and takes  them to the hospital. The longer they leave it the longer and harder it is to get back to baseline and the more medication to help relax the constricted airways. This also means that they will require additional medications to treat the asthma and any infection present plus more medications for the side effects of prednisilone.

By delaying when you decide to go and get help because your asthma has got more difficult is critical because you don’t know how severe the attack may be and if your out with a bad chest you may be exposed to triggers and because your not well your airways are going to be more sensitive.

I guess the message I am trying to get across is that no matter how busy you are in life or how much you feel you spend off work and in the hospital nothing makes up for not having a life which is what will happen if you don’t go and get help early for your asthma.

Patient Centred Care

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.

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.

No wonder asthmatics don’t go to hospital early!

One of my previous posts I titled as the most terrifying experience. At the time I thought it was, but sadly it was not and last week it went to a whole new level of scariness.

I had not been discharged long but I needed up needing to go back to hospital.

It all started well. I was seen in resus and after a few hours was stabilised with IV Magnesium, IV Salbutamol, IV Hydrocortisone and lots of nebulisers driven by oxygen. All was going well. My care plan was being followed and all going well. Maybe a little to well!! Coming out of resus was where it all went downhill and led to the worst time I have ever had.

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Being moved from resus to IC/HD is always a good move so when they said I was moving I was happy. It meant I was getting better and on the road to recovery. This was not the case this time. There was a plan in place for when I was moved. To continue on back to back nebs to keep on top of my attack but this was not done. I had to wait an hour and a half and ask over 6 times to get a neb to be told by a nurse I was fine and he was too busy and would come back to be later. By this time my blood pressure was rising my heart rate was rising and my oxygen was dropping. This was not the time to say I was fine and he would come back to me. I felt the nurse didnt think I was ill. I thought he thought that because I was young I would be ok. I was not ok. I was terrified. It was harder and harder to breathe and I thought by going in early I would be seen early and be back out again. I kept asking for nebulisers and not getting them. writing it like that makes it sound like I was unhappy because I was not getting what I wanted but it was far from it. I was desperate for a neb. My chest was getting tight and I really couldn’t breathe. On top of that I was scared and thinking all this stuff about what might happen. Eventually I got to see a Dr who questioned why I had not had the nebs etc I was meant to. I felt relief at being given a neb but also because I thought the plan would be followed again.

I got two nebs but after that it all slipped away again. I tried to tell the nurse about my care plan but was told he didnt need to see it and wasn’t his concern. I kept asking for nebs but was being told he was too busy. I am sure he was busy but all the times he told me he was busy would have taken up more time than actually giving me a neb and the amount of time he had to look after me in the long run. I ended up using my own supply of nebules to treat myself as I felt so scared and want to get better. By this time I had had enough. I tried to get up so I could get dressed but I fell and really hurt my knee but at this point a combination of lethargy, fear, tiredness and the effects of the asthma attack were taking their toll and I decided it was time to self discharge myself. It was rash but I felt it necessary. It got the attention I needed and the Dr came over to see me with the nurse in tow. I also ended up being reviewed by intensive care. I told the nurse that this was all on him and if I went to ITU or had a prolonged admission it was on him and I strongly believe it was. His attitude was horrible and it has made me really question going into hospital and getting help. If I saw him again as I came into A&E I would refuse to go in as I really thought I may not get out of A&E in his hands.

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After falling and threatening to self discharge I was moved through to the assessment unit where I was in such a state they wanted to give me lorazepam to calm me down. Thankfully the Dr had been filled in on what had happened and knew I just needed out of A&E and I would be ok and they were right. The rest of the admission was fairly uneventful but I shall blog about it another time.

I wanted to concentrate on my experience in A&E. I have had so much time to think about it and the consequences of it. A few years ago the national review of asthma deaths was published highlighting the shocking statistics of asthma death and admissions to hospital. From this I tried my hardest to make sure I was very proactive with my treatment and get help quickly to as to make asthma less of a killer than it is. How can we do this if asthma is not taken seriously in hospital where it is meant to be safe and you are meant to be looked after.

I am lucky in that I have been to hospital a lot and luckily never had such an experience and I knew what I needed. What would have happened had I been new to asthma or not known what was happening. I was able to self medicate to make sure I was ok but others may not have been so lucky and the statistics would just get worse. 

The support I have received from Drs, and the respiratory nurses has been fantastic and I have had the help to come to terms with what has happened and also will get the help to put a complaint in about the treatment I received. It is important that feed back is given because if I have been so scarred by events imagine what someone else could have been. They may have taken themselves out of A&E and died from not getting help for their asthma. Its important to get the message out and get people to see how serious asthma is.

I have never made a complaint to a hospital about the treatment I received but I feel this time it is so important that I do for a number of reasons. I was still trying to come to terms with my previous hospital admission and how I went down hill so quickly in a safe environment, I also had lacrosse trials of Scotland and it was my 30th birthday which I had a number of plans for. All of which I missed as a result of the poor care I was given. I may be unfairly putting all the blame on one person and that person being the nurse but to me it is no
t unfair. The way in which I was spoken to and the lack of respect and care I was given has left a huge black mark and really scarred me. For my own sanity I need to deal with this and make it known what happened and what is being done to resolve it.

It will take a lot for me to get my confidence back and feel safe going to A&E again. I know I will have to go back to A&E at some point and the whole reason I do everything about raising awareness for asthma is to changes opinions of asthma and get people getting help early by taking it seriously. If I don’t feel confident and don’t go to hospital for help then I am a hypocrite and should stop doing all the raising awareness and campaigning I do.

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As you can tell this has left a really black mark on me and I will get over it but it will take time. I do want to add that as a nurse myself I do understand how busy days/nights can get and we can’t do everything the patient wants us to do but when you see them laughing and joking and talking about nights out standing round the computer it is fair to see and hear they are not as busy as they are saying and when I see them as a patient doing this it makes me really angry.

I would hate to be in this situation again which is why I am going to share it with everyone I can. I could have gone home but I managed to stay and ended up receiving some of the best care I have had and did get better. I was not able to trial for lacrosse, or be at home for my birthday or go to any of the planned meals etc but I am now home and will enjoy that.

For now I will continue in the work I am doing to make sure that asthma is taken seriously and awareness raised.

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“Just relax and concentrate on your breathing”

I smile to myself as I write this post for a number of reasons. It seems apt to write this while I can’t sleep because of my asthma and am sitting on the couch hunched over with a neb making it easier to breathe- I wish I could just relax back it would be so nice.

But I have the biggest smile because just about a year ago I was asked if I would be interested in writing an article for the British Medical Journal (BMJ). I agreed. It was for a patient series called “What your patient is thinking!”.

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I obviously focused on asthma, but concentrated on one specific part of asthma and that was during an exacerbation which results in you ending up in Accident and Emergency. The piece was to be written as a learning tool for Dr’s to help them make the patient experience a better one. Sometimes patients may have a bad experience in hospital and it is not because of lack of care but sometimes they way they are spoken to, or they are not listened to etc. There can be a variety of little things that can really make a difference to the outcome for the patient.

I had three key points I wanted to share, and am pleased that so many people have commented on the piece saying they have felt the same but they thought they were the only ones who felt as they did. The points were:

let the patient be comfy- when struggling to breathe there is no comfy position but a patient will have a way they want to sit or find they get some respite. I like to sit bolt up right or brace myself against my knees leaning forward a bit.

Please don’t say “just relax and concentrate on your breathing”- it seems like a very kind an innocent thing to say but it gets really wearing on a patient when everyone they see in A&E tells them this but in reality you can’t relax and the more you concentrate on your breathing the more you focus on how hard and terrifying the situation is and therefore end up making the whole thing worse by adding panic into the mix of an asthma attack. Often as medical practitioners we don’t think how the patient may feel hen we try to say things of comfort like this. It is my pet peeve in hospital and grates on me when someone says that!

Lastly was to give the patient time to talk, it may look difficult and hard work but if the patient is wanting to talk let them, or offer them pen and paper if it looks like it is too much work. Often the patient can tell you vital information about their asthma and things that will help which can help speed the recovery of the attack up. I do find that I want to talk unless I am at the point of exhaustion and even breathing just feels like too big an effort. By focusing on getting my words out I am not focusing on the difficulty breathing and can find talking distracting sometimes. If I don’t want to talk I won’t but I really appreciate it when a Dr will take the time to listen even if it is 2-3 words between breathes.

I hate to think that others go through hard times with their asthma and have rough experiences in A and E but I have really appreciated the comments from people who read the article and that they can relate to it. I didnt only want to write it for me but for everyone who attends anywhere with asthma, or an asthma attack as generally we all feel kind of similar so I hope that more people can read this and maybe perhaps make even just one patients experience of asthma better.

I am also having a small chuckle to myself because I still cannot believe I have published an article in a journal. When I did Sports Science when I first left school I always dreamt about having a journal published but back then never did I think it would be something like this. If I am honest being published was a bit of a pipe dream. Especially as I got an E at my A Level English despite working my ass off but thankfully (i think thats the right word) when I sat an entrance test to do my Nursing they picked up that I am pretty badly dyslexic because I write my letters back to front and some other things. This discovery has been a blessing as it means I may very well get more things published as I have really enjoyed doing it and really enjoy writing wether it is for my blog or PPI stuff or work. I do wonder though what my English teacher would think now after years of despair trying to teach me- it was like teaching the unteachable!

I want to say a massive Thank you to all the kind comments I have received about my piece and if you want to print it and share it with others please do. The more people who read it the better!!

http://www.bmj.com/content/351/bmj.h6185

Signs vs Symptoms

After my last post about pulse oximeters and oxygen saturations some of the comments were interesting and not surprising.

One of the most common things you hear when having an asthma attack is “your sats are fine your ok”.

As a nurse your trained to look at signs first and then symptoms but often we look at the signs and judge a patient by them rather than the whole picture. Which as a patient I know is so frustrating. Especially with asthma you feel so awful as not only you cannot breathe but you are scared and tired and often being told your fine is really hard to hear and can make you feel worse as you have altered judgement due to the situation so it will often make you think they won’t do anything to help your breathing.

I wonder if there is a way we can communicate with nurses and doctors to say that we know our sats may be fine but that doesn’t mean I don’t feel absolutely awful, scared and would like something to help alleviate that. I am wondering about using a cue card type of thing which we could show to the nurses and Drs when they are telling us that our oxygen sats are fine and we are ok. During this time speaking is very difficult so a cue card might be easier to communicate our feelings just so they can understand. I have found that once nurses and Drs understand how I feel they are more sensitive about what they say to you. There are many more ways in which you can be told your sats are fine and are ok without the patient ending up feeling terrified or over reacting afterwards.

Some examples might be:

I know you are really struggling but a good thing is that your oxygen levels are good just now but we will keep an eye on them.

or

We will give you some medication to help with your breathing and make it easier. Your observations look ok just now but we will keep an eye on them while your chest settles and breathing becomes a bit easier.

This is just an example of what I thought could be said but I am sure there are many more ways it could be said.

As a nurse looking after patients and trying to get help from them I have found it hard to get them help when you can tell by looking at them something is not right but their clinical signs are all ok. When you call for help from a Dr you will go through a series of questions many of which are about signs a patient is displaying not what your gut feeling is and that they just don’t look right. Often by the time their signs match your gut feeling the patient is much sicker than before.

It is a real balance between not over reacting and acting as needed. In a way I am privileged as I have seen it from both ways. I am both a patient and a nurse and hope that my experiences as a patient reflect how I conduct myself as a nurse.