Following on from my previous post (Feeling sorry for myself), I have done something today that I have always strongly advised against doing and that is going against what the experts say. I strongly believe that you should always tell your medical team if you disagree with what they tell you but ultimately you should always follow their advice (unless we are talking about doctors in A & E who know nothing about severe asthma at all and only try and treat / manage you by numbers).
Today I attended hospital for my Xolair injections (which I do every 4 weeks), this was on the back of a bad weekend which has seen my sats all over the place (but mainly bad), a tight chest, shortness of breath, a bad cough and unusually for me some wheeze. Despite still feeling pretty rough my pre injection sats were slightly improved on what they were over the weekend (but still not great). I had the injections and much to my disappointment and frustration I was told that they wanted to keep me in for a few hours for observation (I do have a history of suffering side effects and reactions following the injections). During this longer than planned stay my breathing was up and down as were my sats, this caused concern to my asthma nurse and I ended up having a total of 4 lots of nebs. By mid afternoon my nurse told me that she thought that I should go to A & E and then be admitted. I refused, I just couldn’t face sitting for hours in a rammed A & E and I just can’t cope with an hospital admission at the moment. As I told the nurse, despite not feeling well I didn’t feel too unwell to be admitted, however if I felt this bad and I had already been admitted I accept that I would be too unwell to be discharged. In the end with my SP02 at 89, my peak flow at 50% and my blood pressure through the roof I was allowed on the strict understanding that I would return should I not improve or if I deteriorated.
This is only the 2nd big disagreement that I have had with my respiratory team, the other was when they wanted to stop my Xolair injections last summer because of the side effects. I won that argument (just) and I just hope that I don’t prove to be wrong today.
I am feeling pretty down at the minute and another hospital admission would probably do me more harm than good. I am quite sensible, I know what to do with myself and obviously I have my trusty nebuliser, hopefully that will be enough until the benefits of my Xolair injection kicks in. I am sure that my next appointment with my consultant will be ‘interesting’.
In the meantime I would advise everybody to do what I say rather than what I do. Please listen to the experts and take their advice!