What is important to a young patient on a respiratory ward.

This last admission was tough on a lot of fronts. The main one being that I had no idea that coming out of intensive care the ITU team were not happy I was being moved but also that staff who know me on the respiratory ward were all expecting me to be back in ITU pretty quickly as I was not as well as I normally am and not bouncing back like usual. This has really shaken me. Normally staff will laugh and joke with me but when they are worried and making sure I press the buzzer whenever I need anything and not just try and do things myself. I hate pressing the buzzer as I can normally manage to do things myself just takes me a while and a few nebulisers!!

One of the biggest things and hardest things I found with this admission was other people on the ward. Not that other patients meant to be mean or anything but I found it so difficult to lie/sit in bed with patients in the room who were all complaining about how hard it is to breathe yet they all had COPD and 2 of them still smoked. If I had the puff I would have screamed at them that at least they had a reason to not be able to breathe- I haven’t done anything as stupid as smoke and my lungs still don’t work how they are meant to. It is so difficult to sit hearing about how they can’t do anything etc and its unfair they can’t have oxygen at hoe because they smoke. I kept feeling myself get so angry about it, but the icing on the cake was when they asked me to do things because I was young and able to- for some reason, the oxygen, 2 drips were invisible to them- as they seemed to think I could get up sort the windows out etc.

It made me think about what is important to young people on a respiratory ward. Its one thing that is a topic of conversation among a lot of young asthmatics who are in adults wards. I have been fairly lucky in that until he last few years I have mainly been admitted to the CF ward in Edinburgh as its the nearest hospital which is used to catering for young people and has a much better set up, a lot more single rooms, tis, dvd players, fish on the ward, the ability to have different food- including a bacon roll for breakfast etc!! This makes it much easier to spend time when you can’t breathe if you are around people your own age- even if your in a side room there is a younger air about the place and the nurses are used to looking after younger people and know what they will and will not ask for!! Compared with a ward which uses side rooms just for infection which in a busy hospital is totally understandable but there is also the elderly focus, everything is set up for the elderly, physics come and see the old people for stair assessments but kind of leave the younger patients thinking they will be ok. Being home a few days and all my muscles are in agony, they feel like they have been ripped from my legs!! I think there is a lot to be said for the physio seeing you before you go home to make sure your muscles are ready etc. I had gone for walks. The first walk I went for I felt like my lungs were on fire, I needed nebulisers to get my breathing back and this continued until I was discharged home. I remember feeling scared when I was discharged as I wasn’t managing on the ward to do what I do at home let alone get off the ward. The feeling of fear hasn’t gone as I have been home for 3 days now but still nt been out the door. Getting from my bedroom to my front room is hard. I feel like just now I am going from nebuliser to nebuliser waiting for the next one to come and get some relief. I am getting more time between the nebulisers now thank goodness.

During this admission I did notice one thing which I felt was really good but other patients commented saying it was bad. It was that I was left to do what I wanted with my medication. I didnt need to buzz the nurses if I wanted nebulisers, I could just put them in myself as they and the Dr’s know that I know my asthma and will call for help when I need it. There were times when I had to buzz as I had all my nebs and wasn’t getting much relief. They knew when I buzzed I wasn’t great and would often be followed up with a visit from a Dr. But being given the freedom to take meds when I wanted meant a) I got the meds quicker b) often needed less because I was treating symptoms earlier. I do feel that those with severe asthma on a resp ward and who are on a resp ward a lot should be given the freedom to medicate themselves as they see fit but then call if things are not helping. Good asthma control is all about good self management (within reason I try to self manage well but sometimes its hard) and if patients are admitted with asthma they should receive some education and have their action plan checked and left to look after themselves if they are well enough. I only get to do my own stuff because I ask for it otherwise I would just have to buzz all the time I needed a nebuliser and sometimes this could be up to 20 times a day if not more!!!

It is a big change in ward management to make patients being more proactive. It may take more time initially while there is a change but in the long run could this help with asthma statistics and hospital admissions. I was also shocked that I didnt see any of the asthma nurses this admission. Normally you see them and they go over things with you. I think they are a vital service to help prevent hospital admission in the future by making sure asthmatics know what it happening and why they had an attack, but also to know the signs to look out for and what to do about those signs. Despite being a very uncontrolled asthmatic and in the hospital a lot with it I do not have a clear action plan. I fumble my way around in the dark when my chest goes bad. My only option is to increase my oral steroids as already on max treatment of inhaled corticosteroids. I hate steroids but do know that if I take them sooner rather than later I will feel better quicker. Im lucky in that I know that but how many people don’t know this, how many people are out there who don’t know what to do, and just continue in a revolving pattern.

If I can do anything in the up and coming weeks with the various things I am doing is to show how little asthma is understood and how many people are feeling around in the dark not knowing what to do.

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