Is severe asthma different to asthma?

In my last blog post I mentioned how I met some other people with severe asthma at a BLF-AUK event where we had a conversation about asthma and severe asthma.

It may have the same mechanisms in that it is a condition where the airways become inflamed and irritated causing difficulty breathing but here ends the similarities. The way it displays itself is different. The way it is managed is different. The way it impacts your life is different. There are too many differences to name them all so this is why we came to the conclusion that it needs a different name.

When someone hears  severe asthma they think its that common everyday condition that every second person has. The part they have not heard is the “severe” that went in front of the asthma which makes it very different, but because asthma is so common people are very relaxed so don’t take it too seriously or act urgently when dealing with it. This leads us to become so frustrated. I can think of so many times where I could potentially have not needed to go to ICU if the Dr I saw at the front door when arriving in A&E took my severe asthma for what it is and not treat it just like asthma.

One of the challenges that people with the condition severe asthma face is that so many in the medical profession refer to those with asthma that is not in control as having severe asthma or brittle asthma when they actually don’t. There are so many terms floating around to describe asthma that is not controlled for example

  • brittle asthma
  • severe asthma
  • difficult severe asthma
  • difficult asthma
  • severe brittle asthma

That is just a few. The issue arises is that some of these terms are used incorrectly and we have GP’s or nurses in the GP surgery telling someone with asthma that is not in control that they have brittle asthma when they don’t. They just don’t have their asthma in control at that moment and need some medication tweaks.

The types of asthma such as brittle asthma can only be diagnosed by a specialist asthma consultant at a specialist hospital. Not even asthma consultant at local hospitals can diagnose it as there is a raft of specialist testing and multi disciplinary input to ensure that everything is ruled out before you are diagnosed with this very rare type of asthma like severe asthma or type 1 or type 2 brittle asthma.

This is why I and others have been thinking that perhaps these extremely rare forms of asthma need a different name that perhaps does not even have the term asthma in its name to save us as patients from not being treated correctly. Maybe just then we won’t suffer so much when in hospital.

Another big issue for some with severe asthma is that we can look ok one minute and the next we are fighting for our life or we look ok but actually we are working incredibly hard to breathe but don’t want people to know. You cant see severe asthma unless you are having an attack which makes it so hard for people to understand just how debilitating it can be. How every aspect of your life is dictated by your condition, that even taking every medication that is there for asthma it is still not enough to give you a quality of life. It is hard to think that despite taking 30 different medications each day I still don’t have control of my health or my breathing to where I would like it.

I wish my lung condition could be covered by the term asthma but severe asthma is far more complex to manage, treat, control, and understand. No 2 people with severe asthma are the same which makes the condition so much more complex to diagnose and manage. This often leads to very frustrated patients and frustrated healthcare practitioners because despite everyones best efforts life is not good, hospital admissions are just part of life, even ICU becomes part of life which should never be the case.

This is why I think severe asthma needs to be totally separated from asthma and doing this could be achieved by changing its name to stop people from being complacent when treating you in an emergency situation.

I hate living with severe asthma and hate that it is so poorly understood. Maybe one day there will be a huge break through and suddenly all of us whose life is dictated by their severe asthma is no longer like that. Until then I will continue to try and raise awareness of what it is like and just how serious a condition it is.

What happens when there is nothing else?

During my last hospital admission I was very apprehensive about seeing my old consultant. I had recently changed consultant out of frustration and fear of losing my job. Just reducing prednisilone and seeing how I go was not working for me when all I wanted was to get better.

My current consultant is now based in another hospital in the City. The hospital I was admitted to was where my old consultant was based. Luck would have it that I was put under my old con too!!! I was really nervous about seeing her. I had not left things in a good way and didnt really say to her why I had left. I have told the nurses etc on the ward but not the consultant.

Ward round came and my old con was there in the team reviewing me. She was really nice and I asked to speak to her without the rest of the team. We had a good chat about a variety of things. I ended up in tears. We had a chat about why I found a different consultant and it helped us both. I explained I couldn’t keep going with the reducing prednisilone and seeing how I would go as I was missing to much work and ending up in hospital too much. It was taking too big a toll on me.

I asked if there was anything I could do to stop these attacks getting so bad. Part of me really wanted her to say yes there was something I could do so then I had the hope of changing something to make myself better but she said no. She said I was doing everything I could to manage my condition the best I could. This has left me feeling really deflated. As she said it she gave me a hug. I don’t want my life to be like this. Its like being on a knife edge never knowing which way Im going to go.

One good thing that has come out of it is that she is going to take my case to a big respiratory meeting where a whole host of asthma specialists get together to discuss difficult cases. I hope with this something will happen and someone might come up with an idea of how to make my life a bit better and have some more control of my asthma. I know I will never be free from it but just now every asthma attack lands me in hospital as I can’t control them and to be able to control them a bit better is the one wish I really want to come true.

I just need to be patient and see what comes of this meeting. Im in a quandary now as to which consultant to go with. If I’m honest I prefer my old consultant and not much has changed with this new one and she did offer me so much help so I don’t know what to do. I need to sit and think about it and see what is best for me!

Work

This is really just a post to get something off my chest. I am getting so irritated by people who say they can’t work because their asthma is too severe. I understand that some can’t work because of this and due to complications of medication such as osteoporosis.

Recently I had someone message me about this and tell me my asthma can’t be as bad as I make out because I still work. Little do they know how hard I fight to continue working. I have a fantastic boss who is really accommodating and I know if I had any other boss I would not still have a job.

The main thing that got to me is the was the huge assumption they made without actually asking me. I have been forced to move consultant to try and get the best care I can for my condition and try and maximise my time out of hospital. I really hated leaving my old consultant as she was great but I was just not managing to get anywhere to extend the length of time I was spending out of hospital between attacks.

I mention about being seen at a tertiary centre for difficult asthma but they had not. IF your asthma is so severe you will do anything to try and get it under control and will travel any length to do this. I don’t think people realise just how debilitating it can be but as debilitating as it can be it can be life changing to the positive. I have done so many things I would never have done had I not had severe asthma. I get frustrated seeing people wallow in self pity all the time about how hard they have it. We all have moments of self pity but using them and working out why you feel down can make changes and help understand your condition more.

Stay positive to stay strong.