Trauma of ICU

Finally I am able to sit down without getting upset or terrifying myself about my latest hospital admission specifically experience in ICU. The photo below may not look like much and you may think its a window and building but this is what has caused me to much trauma.

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Before anyone reads on please note this is just my feelings from it and my experience. The staff: nurses, support workers, physios and Dr’s were all fantastic and could not do anymore to help me.

This admission has rocked me so much. A lot more than any other has and I hope that I won’t ever get like this again.

There was a series of events I think which led to it all becoming too much once I got back to the ward and I guess basically I just broke down with fear that my asthma will kill me.

The lead up to being admitted was really rapid, as I said in my previous post where I spoke about the admission and how it went broadly speaking. What I didnt speak about was the true mental toll it took on me.

As with any trip to ICU in the back of your mind you know its not good because ICU is the end of the road in terms of hospital care you cant get any more treatment beyond what they an offer. I have been to ICU so many times, I cant even count the number of times I have been admitted there and come out the other end.

Once up in ICU there was the usual battle of trying to get a arterial line in which again failed and we decided to stop short of a cut down thank goodness as this caused me to lose the feeling in my left thumb and part of palm. High flow oxygen running various IV infusions and I had this feeling of being safe. I was in ICU and would be ok. Next came review from the consultant who said if things did settle next step is being intubated and ventilated.  I have had the said to me several times so I didnt think much more about it.

It was not until I came back to the respiratory ward that mentally I really found it tough. After starting to feel much better and access being an issue I was keen to be weaned off some of the infusions I was on. This didnt go to plan and a few hours after I really didnt feel to great so I let them know. Junior drs came to review and were concerned. It was late on in the day and about 7pm my own consultant came round to review me- that in itself freaked me as he was not even on the ward team but he came through. He wanted everything put back to the previous doses, have a whole load of nebulisers and be moved to the high care bay for close observations.

It was the move to the high care bay that brought so much flooding back and I felt that I just couldn’t cope at all. I have been in the high care bay before and never had any issues. I already felt quite on edge because by this point I had been seen by 2 consultants out of hours who came to listen to my chest and see how I was, have all my medications increased again and being moved. The move was what was enough to tip me over the edge. Once moved and settled I looked up and out the window and could see the ICU. The photo from above is below and I have marked where the ICU is.

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The combination of what the consultant said in ICU, and then getting worse on the ward and having consultants review me when they would not normally see you come in to review you and then seeing ICU again and the Dr’s talking about taking you back there was just too much. I think it was also because on the ward I was on the maximum treatment for my chest and just not getting better. The consultant was worried because I had been given 36mg of salbutamol via nebulisers with little effect. Thankfully they kept persevering and my airways did slowly start to open and breathing became easier.

Its fine when you are acutely unwell and everyone is buzzing around you making sure your ok, listening to your chest, giving you nebulisers, doing your observations you dont get much time to think or worry about not being able to breathe. Its once your that bit better and left alone and normally left with the parting words- “rest and try to get some sleep” and the lights go out. That is when it hits you. Still feeling not great and still finding breathing a real challenge sleep is the last thing you are able to do. Its a very strange feeling when you are so exhausted you want to sleep but scared to sleep at the same time. Being in the dark makes everything much worse and I just got so scared. I couldn’t help but break down. I was able to speak to a nurse but they could not offer much as its not like there is a magic pill that makes fear go away and because of my chest not being great they cant give you anything to help you sleep. At night with less staff around at night they don’t have the time to stop and speak to you and make sure your ok. but at that time it was all I wanted. They did then send a nurse practitioner up who was great but even he said that the psychological support at night was awful and as nurses we are not good at dealing with things unless numbers tell us something.

Over the course of that night as my chest came and went some nurses kept coming and saying to me all my numbers were looking better so I am doing ok. I think this is one of the statements I hate more than anything. I don’t care that my numbers may be ok or better I still feel like crap and having good numbers does not help with the crippling fear I am experiencing.

Once morning finally came around I felt really stupid for getting so upset but was able to have a chat with the Dr about it. I knew it was a vicious cycle of being upset, makes my breathing worse, which makes me more upset as I get scared it means going back to ICU but it is so hard to get out of that cycle.

The fear of what happened is still plaguing me. More so than normal. I can rationalise going to ICU and the need for their help but this time is just different and I cant get it all out my head.

I am a week out of hospital now and really feel like I am no further forward than I was day 1 post discharge. Everything feels just as hard. I have no idea why. Part of me wonders is it because of the biologic therapy that is making it harder to recover or has this all taken a much larger toll on me than I expected.

I have clinic next week and I hope to go through everything with my consultant and make sense of it all. I also hope he will have a reason for me feeling so rubbish despite being home from hospital.

I think this whole thing has just highlighted that no matter how many asthma attacks you have, or how many hospital admissions you never know when you will hit breaking point or when you just cant keep fighting.

Snow week: lessons learnt

This past week the UK has been hit with some awful weather. In the whole scheme of things around the world the weather was not too bad compared to the likes of Canada but the snow fall was enough to bring the transport system to its knees, shops ran out of food, no milk could be found anywhere. The entire country was suffering. Mainly the suffering came because as a country we are ill equipped to deal with any snow other than a light dusting.

Schools were shut, offices were shut as well, public transport couldn’t run. If you had any vehicle other than a 4×4 you would struggle to make even the shortest of journeys. The news bulletins spoke about the red warning where only essential travel should be done and if possible everyone should stay at home. This is all very well if you have an office job, or work in a shop. When you work in an essential service like the police, fire service, ambulance service or in the hospital there is no snow day for you. Health doesn’t get better or standstill and wait for the weather to get better so people can get into work and get their job done.

As I work as a nurse we don’t automatically get to stay home because the hospital never shuts, healthcare continues. I was fortunate that I have a 4×4 so I could move around the city with relative ease however I heard fo colleagues taking 3 hours to get to work as they had to walk the 8km to get in while dealing with blizzard conditions. I could only commend those who put such effort in. I could do my bit and take the night shift from the renal ward home and pick up some people who were stranded on their way to the hospital. It was a great sense of team work and really what the NHS is about. As I walked through the ward there were Dr’s taking beds helping with washes, consultants taking bloods and everyone just mucking in to help. Some nurses were staying in the hospital over night to ensure they could work the next day. I have utmost respect for those who did that.

For me my role in the snow was returning to a role I loved. In our department we have a certain number of patients we have to see everyday and set their dialysis machines up at home. Since my breathing has got worse I have been hospital based and not been able to visit patients at home but for 2 days last week we had to use my car to get to patients as the pool cars which are Vauxhall Corsa’s didnt stand a chance in the snow, so for me to drive and allow the nurses to get the machines set up was a no brainer. I was able to pop in and say Hi to some of the patients who I haven’t seen in ages which was really nice.

I have mixed feelings now about the snow melting. When it was really snowy my asthma was a little better as the air felt so much clearer and fresh. That damp feeling had gone but as the weather improves the damp feeling has returned and breathing is not as great.  I m also glad that the snow is melting because I was having to do a lot more hours than I had previously been doing. I was essentially working 8-4/5 rather than 9-3:15. At the time I didnt feel like it was  a struggle however this weekend has been a right off. I have felt exhausted. My chest has been bothering me. I haven’t been able to sleep because of my chest and I really do think it is a mix of doing a lot more at work and the change in weather. I need to remember this feeling and ensure I don’t forget why I am only working shorter hours than I had previously. Part of me always wondered if I would be able to work longer hours but this has confirmed that I really cant. I wouldn’t change what I did at all but it is something to take note of.

Leaving from work on Friday late afternoon nearly caused me a huge problem and I was so thankful that I have a portable nebuliser which I could use. I do go on about smoking and the effects of people smoking has on my chest but the snow days have been even worse and made it very dangerous for me essentially leaving me questioning why I continue to try and keep working when just getting into or leaving work can pose such a risk (but that is for another post).

Fingers crossed this week everything will return to normal, public transport will be back up and running and the snow will melt away without causing huge floods around the city and country.

Taking time helps to heal

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!!!!

Achieving Dreams!

Back when I was at school all I wanted to do was play sport. I lived and breathed sport. I really couldn’t see myself doing anything else. I look back at the start of my blog way back when it was in its infancy in 2008. I was in distress at the though of having to give up sport. At that time I thought everything was over. I was doing things I shouldn’t have and was just pushing myself to the edge to try and hang on to any amount of normality and just be a normal sports students who could go and play football, rugby or hockey when I wanted and not when my chest dictated.

Easter

(my last ever football match at uni with my coach, captain and best mate)

I fast forward to now where I have accepted that sport is not what I will always be able to do now. I have adapted and play sport with some limitations but play a position that accommodates my chest- in goal!!! But also know that every training session I go to or every game I play is a bonus and is something that a few years ago I didnt have. I have dealt with the grief of losing my sport but now I am finding everything I ever wanted is coming back to me but without me really going out and trying to get it and putting my health at risk in the process.

Since being back involved in lacrosse from really the U19 World Championships last summer I have loved every minute of it and not looked back. I still kind of pinch myself to think that this year I have done so much without my breathing putting up to much of a fight. Perhaps it was because it started at an all time low spending New Year in intensive care and really building up from nothing! It couldn’t get any worse that fighting to breath and every breath feeling like it was running a marathon.

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But anyway moving on. After qualifying in nursing I thought my career in sport and sports development was over and to be honest I didnt miss it. I love nursing and wouldn’t do another job.

However now I am doing the development role at my lacrosse club and have just become development director for Lacrosse Scotland. I am really looking forward to trying to build lacrosse in Scotland and get more people playing. We have already started by setting up a new after school club at the Royal High School in Edinburgh.

I can’t say it was an easy run to become development director. There was a lot of opposition to me running and the fact that more members from our club would be on the board. To be honest the sand bagging that took place only drove me on more than it did deter me from running. Karma always comes around and it is going to hit in big doses so I am pretty sure that it was not worth their bother in the end. I got the role I was running and they…well we will just wait and see.

For me it is all about getting more people playing lacrosse and in a strange way I am coming full circle and able to do the job I love as a nurse but also the job I once wished for as doing sports development. I now get to do this in my own time. I really can’t wait to get stuck in.

I just really hope my chest holds up. Its been pretty unsteady recently and have found I am up and down on my steroids like a yoyo and have more sleepless nights than I do ones where I sleep soundly. I will continue to try and get on top of it but I think it will keep being a never ending battle and just when you start getting on top of it things will go peat tong again.

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.

Breathing tests every two weeks- every patients nightmare

For any asthmatic or any person who needs to be seen in a clinic or Drs surgery they will more often than not be requested to do some kind of breathing test. In a GP setting this tends to be peak flow measuring your peak expiratory flow rate in litres per minute. Pretty much every asthmatic should have a peak flow device and if not you should be asking your asthma nurse or GP for one. It is one of the most useful home tools to identify how well you condition is.

However as a condition progresses or becomes more challenging to keep in control further testing may be needed. Patients attending any respiratory clinic in a hospital will probably be sent to the dreaded lung function room first to a variety of different breathing tests from FEV, FEV1 or perhaps flow loops.

I hate lung function, mostly because my lung function is not as good as it used to be but also because I have so much pain for some reason in my left hand side at the lower lung area. We are not sure why its sore but most likely muscular but nothing that serious. I find doing my FVC or forced vital capacity is not a problem because breathing out all the way is not too hard unless I am having an attack. My issue comes when I have to do my forced expiratory volume in 1 second. You have to take a big breath in and then blow out as hard and fast as possible until empty. This is where I get sore. I just always get a really sharp stabbing when I move from breathing in to breathing out hard. It stops me in my tracks. It makes me feel like I have been winded or kicked in the ribs- so understandably I don’t like doing it.

More recently there has been a new device introduced into the lung function world and the lung function room which I don’t mind so much, now that I have got the hang of it. It is FeNo or Exhaled nitric oxide. FeNo is measuring the amount of inflammation present in your airways which can identify how well controlled your asthma is. This is an odd test where you have this handheld white box thing which you need to breath in through and out though at a certain rate. I have done this test with a number of different people who all have different strategies. The aim of the test is to keep a cloud between two lines by breathing out through the machine at a certain rate. You can do this by watching yourself in a mirror so you can see the cloud which is on the side of the machine facing away from you or you can have the pulmonary function technician telling you to blow harder or softer which is very amusing and totally puts me off. Even watching myself puts me off as I just laugh. I have got used to the face I make and don’t laugh quite as much and don’t need as many attempts as I used to. I think I would on occasion leave them all shaking their heads when they had a busy clinic and was laughing at myself thus holding proceedings up!!! (I will find/ get a video of myself doing the FeNo test so you can see what I mean!!).

From what you have read so far you can probably guess that I don’t like doing lung function. I don’t think I will ever like doing it, so you can imagine when a few months ago in clinic my consultant suggested coming for lung function every two weeks and then emailing her the result. I was not amused and she went out of the clinic room to speak to lung function to sort it all out before the news really set in. When she was away all sorts of things were going through my head and thinking of ways I could get out of doing lung function every 2 weeks but I couldn’t think of much as I work in the same hospital as I work in so could not say I was too busy and wouldn’t be able to get away!!

I was so relieved when she came back and told me that it would only be the exhaled nitric oxide (FeNo) I would be doing every 2 weeks. I was relieved that none of the other tests would need to be done!! I was a bit skeptical at first about what FeNo every two weeks would achieve but now I am 2 months down the line and can really see where it has been really useful and helped me and my consultant make progress in my prednisilone reduction. Before it was a case of reduce the prednisilone by a few mg and then see how I did. Most of the time I would reduce for a few months, be fine and then have an attack which meant y dose was increased again. This time was different. I would do the FeNo test then email my consultant tell her the result and she would make a recommendation about what to do with my dose. So this way we know what is going on at the point of reduction rather than waiting and seeing what happens. I have repeated the rewards from it as we have managed to stick to the plan and I have been managing to go every two weeks pretty much give the odd day late here or there!!

This is the first time I have felt an element of control in my asthma. Perhaps it is a bit of a psychological result as well because I have had so many failed attempts at medication reduction when we go by the wait and see plan however now with FeNo I know I am good, bad or indifferent so have that reassurance that we are reducing at the right time.

I guess the two weekly lung function or as it turned out FeNo was not as bad as I first thought!!! It has been really good and the benefits certainly are better then the pain of going down to pulmonary function. Fingers crossed for continued progress. I am sure there will be the ups and downs but I guess it keeps like interesting!!

I must recommend FeNo to anyone. More hospitals are bringing it in and give a far better picture of how your lungs are actually doing.

All consuming

What do you do when everything you hate in life is everywhere you go??

This is what my asthma feels like just now. It doesn’t even leave me alone when Im asleep. I get woken up coughing, wheezing and gasping for breath. When Im awake its the same. I try to blank the tight feeling in my chest, or the low whistle that seems stuck in my head but it is ever present in my chest just now. When you have a bad day you can run away, hide in a darkened room and leave your fears and stresses behind but as I run into a darkened room my fears and stresses follow me and sit right next door to me. I just can’t get away from it.

Many ask me why I get involved in the research centre so much if my asthma bothers me so much but that is exactly why I get involved with AUKCAR so much because for asthma is everywhere and if I can use my experience to the benefit of research and others then fewer will have to suffer a life dictated by asthma.

Even if I was not putting my experience to good use I would still be all consumed by it as I can’t get away from it. If not away from the asthma then I still have the side effects of the medication used to control my chest. It is just never ending. One wish I would really like just now to to get away from it. But even that can’t be done. I often think if I do nothing then i won’t feel the effects of shortness of breath or being wheezy but even when doing nothing I find I need to reach for my inhaler or get woken up needing relief. It feels like my lungs hate me as much as I hate them.

I am on the count down to seeing my consultant on Monday. I am filled with apprehension, excitement, nervousness, and a slight bit of fear. I guess I want so much to change and hope for something to change but am very scared that there will be no change.