I went to see my respiratory consultant the week before Christmas, and basically, even though I feel that I am in a better place (psychologically) than I was 18 months ago, albeit with no improvement (or worsening) in lung function (relatively constant at around 63-65% FEV1/FVC, I received a letter today discharging me back to my GP because my breathlessness remains an enigma to him. It has been suggested, in some of the literature I have received from him, that my lung function tests indicate obliterative bronchiolitis (and then three weeks later, another piece of literature stating that that there is no evidence of obliterative bronchiolitis.............hmmmmm me thinks that the left arm doesnn't really know what the right.........!).
I'm not always fastidious about things, but after all, it is my life that we are talking about here. I'm about to lose my livelihood as a teacher (for the last 21 years); there is no guarantee I will even be eligible for a pension, despite a trail of medical reports (some of which conflict with one another!). Should I be seeking other medical opinions, or should I even consider complaining about the mismanagement of my treatment from day one? How do I go about getting to see a really good respiratory consultant who is prepared to invest time and money in trying to find out why my breathlessness has worsened in recent months, and why I rarely now have a heart rate below 90-95 bpm at rest. Climbing stairs or walking in the strong headwinds experienced recently renders me almost totally breathless, and it takes me several minutes to regain some relative degree of normaiity.
Is it that common a practice in the days of austerity that an uncertain diagnosis means that we shall leave the patient with no diagnosis, and no methodical approach to treatment to alleviate some of the symptoms I have? I have been on various inhaler therapies for over 18 months, and now I am being told to wean off these, and be left to fend for myself. Is this normal practice in the light of no diagnosis (after 26 months), or misdiagnosis? I have ankylosing spondylitis, and I am getting conflicting information regarding the possible impact that this disease can have on lung function; it is something of an enigma that I present with obstructive small airways disease - COPD (although no hypoxia and good gas transfer at around 97-98%) and yet one would normally associate ankylosing spondylitis with a lung disease of a restrictive nature. I feel a little let down by the whole situation.
I started on Humira anti-TNF treatment in October 2014, and only this week, it has been suggested (by my rheumatologist) that perhaps I should stop taking this as there is no real inflammation in my body as seen from my blood tests - they also seem to have lost my previous three sets of blood tests which showed extremely high levels of inflammation in the body; so maybe the Humira is actually slowing down the progression of the ankylosing spondylitis. God forbid a treatment that might actually be benefiting me! And they want to take that away from me too. 2016 - looking forward to it already.
Incidentally, happy new year to anyone on here who has the patience to read through my drivel, but I was wondering if anyone else feels that they have been let down by an NHS that is overworked, understaffed and sometimes, dare I say it, inefficient and incompetent. YOur thoughts would be most welcome.