Asthma has so many misconceptions with severe asthma have even less understanding with those asthmatics just wanting people to understand what its like and what is not in all the text books and literature as most of these are written by those who think they know what asthma is like because they have studied it but they havn’t lived with it. I put a post in a group online asking this and was shocked by how many responses I received and how varied they all were.
Due to the sheer number I am going to split this into two posts one about what we want the medical professionals to know and the second about what we want the general public to know.
My biggest frustration is when Dr’s think your asthma is bad because your not taking your medications as you are meant to and being uncompliant. This happens to me a lot. Recently this happened because my theophylline blood serum level was low. The first reaction the Dr’s had was that I was not taking my medication when I was meant to. My level was only 7 but its meant to be about 15. I tired to tell them I had been on that dose for so long and never had it change and its been trending down but this didnt seem to be a good enough reason. So I felt like I was having to prove to them I had been taking my medication as I was meant to. I know a lot of people have this. The first question following what happened? Is normally and have you been taking your medications then you get the test to go through every medication and give the dose and time of day you take it to prove to the medical staff that you have been compliant.
One of the other subjects that cropped up so often and crops up a lot is about when you attend hospital and the emergency department. If we leave it too late and end up being blue lighted into resus or even worse a crash call goes out we get the lecture after we have recovered from our consultants that we need to go in sooner and get help when things are not so bad (I have had this lecture several time only because of the following experience). But then when we go in early we are left till we get worse or sent away. The line of your sats are ok so your doing fine. The problem is that on the whole with asthma your are pretty healthy in between having attacks therefore you have a good oxygen reserve. So when we have an asthma attack and been working hard a blood gas will show this but because our oxygen saturations are good you won’t often get a blood gas done. But if you did this would show your lactate rising despite good oxygen. Just because the oxygen is good does not mean that your not struggling it just means your compensating well and this compensation will run out and that is when we crash. Being able to tell this Drs this is hard because they are the Drs and we often think they won’t listen to us but Drs will listen to us if we don’t get grumpy with them and just say to them this is what happens. With those of us who don’t have such great reserves we drop our sats quicker so this issue isn’t so much of a problem.
I don’t know if I am fortunate that have have quite a musical chest which when I go in it is fairly wheezy and crackling so there is lots to hear until I get very tired then I get a silent chest as I am not moving much air at all but many people with asthma have asthma where they don’t wheeze or wheeze is not the dominating factor. This is particular in cough variant asthma which often gets dismissed as nothing serious. It must be so frustrating for those with this type of asthma as they just get dismissed but feel awful. My tip would be rather than having to try and tell the Dr’s when your having an attack and coughing so much, have a written care plan which says about your type of asthma, how it presents and just how frustrating you find when Drs think things are not so bad just because your not wheezing.
I have a care plan which is so handy. It explains about me and my treatment and steroid reduction but it also says things about getting blood gases and various other things. I get very scared when I am told I need to go to Intensive Care and will often reject the idea and get upset about it but this care plan says this and says to bring the subject up carefully rather than dictating that I need to. Having this type of plan helps and gives the Dr some understanding about the type of asthma I have but also shows them I know my condition and want to take control over my situation. Having this might help you in your situation if you come up against Drs and nurses not understanding you and your asthma.
Another hot topic for Dr’s and any medical professional to understand and I think this one crosses the board to all chronic conditions is side effects from drugs. Personally I take around 30 odd different medications. Some of them for my asthma including prednisilone. For years I never took it as I should and I wish now at the time I could tell my Drs why. But I didnt I just lied and told them I did. It wasn’t until my consultant before the one I have now was frank with me and I was frank with him, that I was able to explain I hated taking prednisilone because it was always reduced. I would feel great on it and my chest would let me live the sort of life I wanted but because Dr’s know the devastating long term effects of it they want you off it so I felt what was the point of taking something for short term to feel better for it to be taken away. I just didnt see the point as it was a rollercoaster of feeling good and bad, bad when they were taken away so what was the point. So we found a happy medium but this happy medium has meant introducing tablets to counter act the horrific side effects, but to me it was worth it so there adds in some of the 30 odd medications. I also had to be honest about how some tablets made me feel like my theophylline which the benefits out weighed not taking it so to tolerate it I needed to take more medications to make the sickness, reflux, leg cramps, restless legs but taking these extra things really help and the drugs help.
Had I not been honest with my consultant about how I feel I would never have the (some what) control I have now and wouldn’t be as compliant because I let them know how I felt and we worked together to get a good balance. Just now its not so great because side effects are really hitting me hard as I am still recovering from the last exacerbation but I think Drs don’t realise sometimes that we need to live and sometimes taking more medication to counter act side effects is not such a bad thing if it lets us have a life and have the life we want to some degree. Obviously the Drs need to step in sometimes and put their foot down with medication to some degree but as long as we work together (something I must remember as a nurse myself when patients complain about medication and treatment).
This is only the tip of the iceberg when it comes to what we want medics and people in the medical field to know.
I did write an article over a year ago now called “Just relax and concentrate on your breathing” in the British Medical Journal for a series called What is your patient thinking. The link is: BMJ Article.
If anyone has any other comments or ideas they want to share about what Drs and Nurses don’t understand about Asthma.
Next will be a post about what asthmatics want the general public to understand about having severe asthma.