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.
How i feel with my new cons is going round in circles too as i been investigated a million times to check that its asthma and all the tests come back with it saying asthma. But when i see the drs they just say that its not asthma something else which they are looking for but cannot find anything?. No allergies no other lung conditions no nothing so just kind of stuck. This is like my 4 th cons for what they call as difficult asthma although i heard them use other terms like brittle and dysfunctional and severe and just doing the same tests over and over again as if we are waiting for some magic to happen
Hope you get better soon
And the thing i hate the most is when we do a lung function comes back ok we taper the steroids and i end up in hospital and then back on the steroids again just a vicious cycle?.
KaylaP (KaylaCP) - so sorry you are having cons trouble. Sometimes it can take time to build a relationship with a cons so that he/she can learn to trust you - and beginnings can be rocky.
That said - NO ONE can make good decisions if they interpret without data or facts. If you feel the cons is not paying attention to facts, test results, history, etc, then it seems to me your concerns are completely legitimate. Same goes it you feel his reasoning is poor.
I generally follow the policy: it isn't my job to draw conclusions, but I do have a right to think about the data and analytical process someone is using. If I don't trust the data or analysis, how am I supposed to trust the conclusion, whatever it might be?
One thing that helped with my current cons: my GP had me prepare a clinical summary outlining all the test results that showed that (a) I had proven variability (b) objective evidence of obstruction (c) exacerbating conditions were being treated (in my case Vitamin D deficiency, mild anemia, post nasal drip) (d) various tests that had been done to rule out other causes of cough, SOB, and the very occasional wheeze.
When I gave the summary to the pulmonolist, I could tell he was a little thrown. He clearly had a standard set of questions. Here I was saying drop your questions and ""read this"" - which he did. Because he could see all the facts laid out , it was easier for him to see the big picture and the diagnosis of asthma was more obvious. On the strength of that summary, he wrote back to my GP that I had asthma and decided to see me weekly for a period.
Every time I came in he did spirometry. Eventually he was able to reproduce in lab the same range of FEV1 and PEFR that I was getting at home. (FEV1 in lab tests ranged from 29% predicted to 120+% predicted). This convinced him that I really did have asthma, with a massive amount of variability. Part of the reason my pulmonologist was able to track down the variability was that we always tested about the same time each visit - it took 6 months(!) to reproduce the home range , but he did it. My pulmonologist was clearly very dedicated to see (and test) me so often.
I think tracking down extreme variability is hard and takes a lot of dedication and patience on the part of the pulmonologist. The usual way of doing things (a test once a month) is akin to trying to price a very volatile penny stock by opening the newspaper once a month and reading the stock price quote page. Any financial advisor that did that would probably bankrupt their clients! yet pulmonologists seem to never question their methodology when they try to assess someone with huge variability using once a month measurements.
Note: like you, during severe attacks, I can also (for short periods) get completely normal peak flow - even as high as 95% of my personal best. You are not alone! The red flag is that I can't maintain that level. Anywhere from 15minutes to 2 hours later PEFR is down below 40% personal best and sometimes as low as 20%.
This can be very confusing for doctors (and me). Most asthmatics, if PEFR is 75% it stays 75% and they can go home. Not me. In my last admission, I took advantage of programming skills I have and put my PEFR data in a spreadsheet. Then I used to spread sheet to generate a chart that showed all my ups and downs. I was lucky to have open minded doctors who were willing to look at the chart.
Seeing a visual with all of the ups and downs in PEFR drove home the point that a single look at me could be very misleading. My chart also showed the average PEFR through the day and the average amount of time I stayed above 60% after each SABA treatment. We ended up using the chart to assess progress rather than just an isolated blow on the peak flow meter.
My thought is that doctors are (sometimes) willing to listen if only they have easy to use data to go by.
As a result of their open mindedness, I left the hospital well on my way to a genuine recovery. When I was hospitalized PEFR was varying 80% daily (!!!), but a week after discharge and 60mg prednisone for a week - I'm staying above 75% all day for the first time in 3 months.
Thank you Yas and Beth,
I am seeing the respiratory nurses next week so your advice and experiences will help with that.
Beth - I hope my cons is as willing as yours to see the variability as this is what my diagnosis is based on. My peak flow varies daily and can be anything from 300 to 450 on a normal day. I do have some evidence of this from an admission as a low peak flow in the morning is what stopped me from being discharged. This also showed reversibility of peak flow from before and after data. Saying that I have only ever done spirometry just before discharge so you would expect it to be nearly normal. I have purchased myself a piko peak flow meter and my home readings show a fair bit of variability in that. I spoke to me GP yesterday who jokingly suggested I should get someone to come and do it first thing in the morning before inhalers etc.
I am getting told I have hyperventilation because I do not wheeze.
I have been working on hyperventilation physiotherapy which involves only breathing through your nose. It not helping as far as I can see. Will keep doing breathing through nose do consultant can access me.
Sigh!
All doctors have different opinions and different treatments and some you learn to trust and some you will never trust, For example one doctor didnt take in consideration of my symptoms and then later that night another doctor was concerned and i ended up in HDU. But what they dont understand is that we know our own body and how we feel as we've experienced it before. And they are just going off the symptoms and there 'knowledge'
And im finding that each doctor doesn't want to define it as asthma as they send you for all these other tests and then they come back negative which results in the condition being asthma.
Im lucky tbh as i get on really well with both of my consultants as they both understand how i feel and also consider the symptoms. However that may change when i get transferred to the adults.
I wish you luck with your consultants and hope things get sorted soon.
Bryony
Thank you Julie and Bryony,
Julie - I have been through the physio who says I only appear to hyperventilate when I have been struggling to breathe for a while. We went through the exercises but I don't find they help much either. It is really frustrating when drs are only listening for a wheeze isn't it? What is interesting is that my attacks have become more wheezy over the past few months and it is amazing how the treatment I get is different when I am wheezy than when I am not.
Bryony - I know cons are different and appreciate different view points. I just find it hard that I spent a year with my old cons exploring options other than asthma, had several investigations requiring a lot of time off work etc and then them being totally ignored!
To update, my GP gave me some really useful tips for explaining my point of view and after a very tearful conversation with the asthma nurse, they decided to get the opinion of a tertiary centre. I know I will have to repeat tests etc again but I am hoping they will look at things like variability and reversibility more rather than spirometry is always find at 3pm! In the mean time, I have been told to carry on going to A&E when needed without being afraid of what they will say - not sure about this but hopefully I won't need to consider it as for once I seem to be doing ok without pred (fingers crossed - it is the first time I have managed a fortnight off it in six months!)
Yes I understand you fully and this is partly why I'm anxious to being transferred to the adults because I know none of the nurses, consultants or doctors there.
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Just a little rant!
Respiratory Consultant wants me to come off asthma meds!
Really uncontrolled ... feeling out of my depth and unsupported
Salbutamol prescription problems.
Just having a vent...
