I've been away from the forum for a while and had problems with my email so have had to create a new login - my old username was KaylaCP. I've had a lot of trouble with poorly controlled asthma and have had several admissions over the last six months. I was diagnosed as a child, had very severe asthma in my teens which settled down in my twenties and has got progressively worse over the past 5 years (now in my early 30s). I am currently concerned about my outpatient care and wondered if anyone has any experience of similar issues or adivice.
Earlier this year my old cons was carrying out a range of investigations to see if something other than asthma was driving my symptoms. Lung function was a bit odd but essentially normal although I do have low diffusion. I had a ct scan, ph monitoring, a range of blood tests etc and the only real finding was a high IGE and confirmation of a number of allergies. It was concluded that with my family history, experiences of attacks and responsiveness to salbutamol and steriods (even though a high dose is often needed) that I do in fact have asthma (driven mainly by allergies). It was noted that this is on the severe side and cough predominant (CVA was questioned but I do sometimes wheeze). I was started on uniphyllin, had my ICS doubled to try to reduce the amount of pred needed and the possibility of Xolair was mentioned. Since then my asthma has become more unstable with countless trips to A&E, hospital admissions and one HDU. I have wheezed more than usual and had unchaaracteristic acute attacks. However, I have been seen by a new cons who does not agree with the diagnosis and has suggested that my treatment is disproportionate to my symptoms. I haven't had the opportunity to discuss this as it wasn't mentioned to me at the time and I only found out when my GP showed me the clinic letter. Iin retrospect it explains some poor treatment I received in A&E a few weeks ago. He talks of stopping treatment as he believes this is due to hyperventilation.
I am all for a new perspective on my treatment and agree my asthma does not tick normal boxes - often absence of wheeze, my peak flow varies massively in the day but during an attack I can get around 75% (I think a lot of the variability is down to salbutamol use), FEV1 is about predicted range - but a number of things concern me:
1 There doesn't appear to be any transparency (if that is the best word). The clinc letter could almost be about another appointment and states at least one admission was due to hyperventilation when all my discharge notes make no reference to this.
2 all the medication I am on made some difference (any that didn't were stopped quite quickly) so they must be doing something (not that I want to be on everything but I don't want to end up limiting my lifestyle even more)
3 While I admit there is an element on hyperventilation (and some blood gases show this), I have seen a physio twice who concluded it is secondary to asthma so you are SOB so really struggle and end up breathing too fast. I was taught techniques to avoid this and discharged. I have no symtoms of hyperventilation like pins and needles or stomach cramps.
4 I fear that repeating tests is going round in circles and delaying further treatment. My lungs are interfering with my relationships, my work and my once active lifestyle.
5 I believe I am being treated by numbers rather than listening to my symtoms or indeed looking at why I have been treated for acute asthma attacks so many times.
Thank you for reading this long post and sorry for the rant.
I never complain about anything but am rather annoyed by this treatment. I have an appointment with the cons later this week and don't know how to approach it. On advice from the helpline, I have got copies of the letter from my GP which do have a short tone to them. I know several people on here have similar issues and have had the diagnosis questioned so wondered if I could do anything to get my concerns across without seeming irrational. My asthma nurse is on AL so can't even speak to her before the appointment.