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.

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.

 

Harsh realities hitting hard.

I was reading another blog of someone I know who also suffers from Brittle Asthma which has been so badly controlled by Drs that she has a lot of lung damage as a result requiring oxygen 24/7 now. I found myself in tears reading the posts something which I don’t often find. Its not that I am not emotional but I try and stay detached when reading posts by others who have conditions effecting their lungs. It is purely selfish I do this because I then dwell on my own situation and can relate that to these other people who write about living with Brittle Asthma.

Not only is it a constant battle everyday with our lungs to stay healthy, take medications and just get through the day but there is the other fight. The fight to get the correct medical treatment when it is needed. The fight to get Drs to listen to us and for them to understand how far from normal activity you are. There is not your own personal fight but the bigger fight. The fight to change perception of asthma and how serious it can be.

Frontline staff still don’t understand that asthma they think you can wait before getting treatment. I never forget being taken into hospital laughing with the paramedics because I was not that bad but was bad enough to need hospital. I was left until it was my turn and because no one checked on me despite the paramedics telling the staff I had brittle asthma I was left. When I was seen I was in bad shape and taken into resus and on to high dependancy all this because no one took asthma seriously. A quick once over and a few nebs put on me which I could of done myself and I would have been out of there in under the target time but instead they left it. In the end, they needed more staff to look after me, more drs needed, more nurses, more medications, scans, a critical care bed which cost the NHS a huge amount of money which could have been solved by dealing with the asthma promptly or at least when I told them I was getting worse and needed a nebuliser.

I know people reading this will think that the unit was probably very busy and it couldn’t be helped. I would have understood that but when you ask a passing nurse for a nebuliser because you not feel that great and are told to wait my turn as they need to put someone on a bed pan first who needed it. I am sure the person needed the toilet but what is worse someone having to wait to use the toilet or someone having to wait for what is their life saving treatment. To me it is a no brainer. As a result I will never go actually un well to that unit again.

When you are told to wait when you are fighting for breath is the scariest thing. You don’t know how long the wait is. You sit puffing on your inhaler hoping that eventually after the 20 or so puffs you have had you might just get a little bit of relief but you don’t get any relief until it is past the point of no return and you need proper help in the form of IV and nebuliser drugs.

It is widely known among people with asthma that asthma is not taken seriously enough. But how can we make all those non asthmatics out there realise this to. People die from asthma everyday. I don’t want to be one of those that die but fear it is a very real possibility if front line staff do not change their attitude about asthma. I do a lot of work with Asthma UK and the centre for Applied Research but sometimes I do wonder what it is all for. Will change ever be made. Will we manage to get the word across that asthma won’t go away with a puff of a blue inhaler, there needs to be proper protocols and action plans in place not only for patients but for staff to.

I am terrified of thought of having an asthma attack that might kill me. Not so much about the fear of dying but the fear for my family. I have seen how broken my grandparents were when they had to bury their youngest son, my uncle who suffered a traumatic head injury. No parent needs to do that. This is my fear. My fear of what it will do to them. For me I won’t know about it. I am sure it will be scary but no scarier than any other attack as during every attack there comes a point when you are just too exhausted to keep fighting to breath but somehow you find that extra bit of strength to keep squeezing the air and out those tiny bronchi to keep you alive.

I can only do what I do to try and spread the word about how serious asthma is and how it can kill. I have a bigger platform than most to express how bad asthma is, share my story about living with asthma and where the short comings in asthma treatment are. I have my blog which some people read, I volunteer with Asthma UK but the biggest one is that I am involved with the Asthma UK Centre for Applied Research where some of the greatest asthma researchers around are trying to make life better for us! For as long as I can I will keep doing what I am doing. Know one knows what the future holds for anyone. I take each day as it comes just now as each one if very different and never know what I am going to wake up to!

Spread the word on how serious asthma is and highlight the importance on the need for change.