Itching, burning and needed advice.

Just to say before getting into this post, I attempted to get advice and help for the situation I was in but hit a brick wall. All is semi ok now thank goodness and all is safe.

In previous posts I have talked about allergic reactions and allergies, which of late (last 6 months or so) have been getting worse, more difficult to manage and coming out of the blue. I have had various allergies for a long time, followed a salicylate free diet and always reacted badly to insect bites etc, but nothing quite like this.

Something Im not really that familiar with about myself is really quite scary. I think it is because I just can’t get a hold of them and don’t know what it is that is triggering these reactions.

So anyway the other night I had a fairly bad reaction, I was home alone, it was the evening, I had maxed out on anti histamines and was not sure what else I should do short of scratch my skin off.  My face looked like this despite having 14mg pred, 12mg chlorophenamine, 180mg fexofenadine, 10mg citirizine on board!

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I went red and blotchy all over to so thought I had better call NHS24 just to check out if there was anything else I should be doing or if I should take some extra steroids to help.

So phoning through I spoke to a call handler and explained what has gone on and she asked about various allergies I have and if I could identify what caused this reaction. I wasn’t able to tell what caused it. She tried to get through to a nurse but couldn’t so said I should expect a call back within the next 3 hours from a nurse. So I just waited and with 10 minutes before the 3 hour time I got a call back from a call handler who ran through various questions which included if the reaction had changed or got worse which by this time it had spread all over my body, my face particularly my eye and ear on the left side were quite swollen and I had hives developing too. She must have been relaying this information to a nurse as she came back saying not to do anything different and see how it goes. I asked if I should take some more prednisilone or more antihistamine to help to which she relayed to the nurse and was told no. I was then told that if it didnt get better to call my GP in the morning and take it from there. I was also told to have a cold shower and they went. That was the end of the conversation.

I felt really upset and scared after this. I just wanted some reassurance about what I should be doing and what I shouldn’t do, what to expect etc whereas I was basically told to sit tight and if in 11 hours time (8am GP opening time) things were still the same or worse I should call them. I came off the phone feeling like an idiot. The first call I told them how I had had previous reactions and the last hospital admission I had an allergic reaction that sent me to high dependancy unit.

I thought to myself, clam down and just think what is the logical thing to do. I knew I could take more chlorophenamine soon and would be taking my ranitidine soon too which has antihistamine properties in it, I also had my inhalers to take and various nebulisers so my breathing was going to get a boost but I was still worried so I decided to take some more steroids. Even though they told me not to from previous reactions I have always been given steroids so I thought I should take them. I knew I wouldn’t be overdosing myself or anything by taking a dose and weighed up that it was safer to than not to take them. I got cool flannels to try and cool the hives down and stop my face burning. It was a long process but it eventually settled down about 4am or so. I did not get much sleep that night- infant my fitbit which was on me recorded no sleep that night at all.

I do feel now looking back, why did I bother to call NHS24 when they did nothing to reassure me or offer any advice. They left me feeling scared and vulnerable. I guess I am lucky on two fronts one that I have had reactions before and have had some experience at dealing with them and that I am a nurse so have some knowledge but if I hadn’t had either of those 2 things Im not sure what I would have done. The next step I guess would be to go to A&E but really is that needed for an allergic reaction. I suppose yes as they can be life threatening especially delayed reaction which I sometimes get.

From this I have learnt some good lessons.

  1. you know your own body
  2. im glad i have steroids to increase dose if needed
  3. im a nurse
  4. not to rely on NHS24 and go with my gut

I know my condition is quite complex and maybe I did over react but when you have lungs that are on a knife edge anyway you don’t want to do anything which might just cause them to tip and go overboard- because that is just too much hard work to deal with and a fight I really don’t have the energy for!!

I will be going to the GP and have immunology soon to so things are moving forward with finding out what is going on and if it is just that my body is not as strong so thats why I am having worse allergic reactions than I was before.

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.

How do you get used to to living in a state of instability?

You don’t….

I like my life to be quite ordered. I like to know what I’m doing day to day, week to week. Many think I am stuck in my ways but I like routine. Routine gets me through, it means I know where I am. Recently I have found my asthma has been not to bad but the last month I would say it has been teetering on a knife edge. Never quite knowing when things are going to tip but desperately hanging on.

It is that very difficult period where your just sort of suffering. The nights are long and a little frightening as my asthma always gets worse at night. I finish work at four and have often been in bed by 6 using my nebulisers but just exhausted from getting myself through the day without getting sent home or worse ending up in A&E. Part of me wants to just hold my hands up and admit defeat but I can’t. I have to keep going.

If I am honest I feel alone just now. I sort of feel like I am on my own with this horrible condition even though I know Im not. I have lost a lot of my vital support networks which I didnt realise I heavily relied on even when my breathing is good. Matters out with my control have meant that to protect myself I cannot show true self or leave myself vulnerable to others, in doing this I am protecting myself but I am also isolating myself and I hate this. I loved being part of the support groups being able to help others and receive help and support myself too.

I really hate asthma just now and how little it is understood.

If only it could go away or a cure could be found soon. I try to be strong but today I can’t be. Today I want to hide in my flat and curl up in bed.

One of the other things I hope that by just not doing anything this weekend is that I still have a massive fear of going to A&E again. The fear of not being listened to is still fresh in my mind and that resulted in me going to intensive care because a nurse thought he new best, I was young and was not that bad. I hate to think what would have happened had I not had my own nebuliser with me and had I not know my own chest. I mean even with my own actions I couldn’t stop myself ending up in intensive care and this really terrifies me. I fear that I will end up being looked after by the same nurse again, it may be an irrational fear and the chances are slim but it is still there in my mind at was was already a scary time and it was just made worse. As a result there has been times when I may have had to go to hospital but did because I just stayed at home and would do back to back nebs- maybe more than I should have but the fear was paralysing and I can’t explain that fear to anyone.

I have to look at the positives though. I have had the most amazing summer doing things I never thought I would have. I made some awesome friends and played more lacrosse than I could have dreamt of so while I don’t feel great I can sit and look at the photos and memories of the summer and smile knowing that with hard work I will be able to do this again!!

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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