No diagnoses just meds thrown at me
Posted , 10 users are following.
I have had various PEs and my severe breathlessness was always put down to this and anemia (although breathing probs started long before anemia)
Recently (6mths ago) i was diagnised with acute bronchitis, severe wheezing and put on steroids (lots of them) and inhaler after inhaler as much as 10 puffs in one go and also nebulisers.
However I went for a Spirometry, In the waiting room, I had to relieve by taking my prescribed ten puffs as the walk to the office had left me unbearably out of breath and wheezing and coughing..settled down a little but not alot and eventually managed the spirometry which came back no COPD or asthma as my reading was 89% but I had fluctuating readings - I was told by a friend of mine I should not have taken the salbutamol ten times before the test - I should have advised them I used my reliever - but it didnt say on my appt letter refrain from taking reliever prior...there were no instructions to follow
anyway two mths on from the spirometry, I still wheeze badly worse than my mother who smokes over 30 cigs a day, Ive never smoked
I cant walk more than ten yards without severe discomfort and again Ive just been thrown another inhaler to add in to the mix..so you can see my frustration, something is causing my problems - the inhalers "Clenin and salbutamol dont work for long" and as much use a a chocolate fire guard - you can hear my chest wheeze as I walk or sit, I cant talk for long sentences and I am at a loss - My nephew was recently diagnosed asthmatic with no spirometry and no wheezing, just pains in his chest and yet I cant get a diagnosis when you can obviously hear me before I even arrive ...anyone else in the same boat ???
1 like, 18 replies
anr675 23deedee66
Posted
By the sounds of it, you have a lot of risk factors that could be contributing to your condition. It sounds as though you may have gotten a lot of second-hand smoke from your mother, which does put you at increased risk of chronic bronchitis and COPD - these can cause breathlessness and chronic cough where you bring up phlegm.
You mentioned that you have been diagnosed with anaemia in the past. If this is not monitored and controlled, anaemia can lead to breathlessness, because your blood isn't able to carry oxygen in it as well as it should.
You mentioned also that you've had multiple PEs - pulmonary emboli - in the past. Pulmonary emboli block off blood vessels in the lung, and can kill off small areas of lung tissue. This can be quite concerning, as multiple small pulmonary emboli over time can lead to a condition called 'pulmonary hypertension', where the blood pressure in the lungs is very high, because so many of the small blood vessels have been 'shut off' by the emboli (blockages). Pulmonary hypertension is a very serious condition, and can lead to other complications - such as heart problems, which may be evidenced by swelling in the ankles, for instance.
The lung problems involved in pulmonary hypertension can also lead to breathlessness, because not enough of the lung is functioning properly, so you need to breathe faster in order to get the amount of oxygen that your bosy needs.
Asthma is always a possibility, however, if you are taking a salbutamol inhaler, this should help with it. However, sometimes asthma can get so bad that it no longer responds adequately to salbutamol alone, which is when doctors introduce a 'preventer' inhaler - an inhaler than reduces the 'inflammation' of the airways, helps to settle down mucous production, and reduce any swelling in the air tubes. This makes it easier for the salbutamol to do its job of properly opening up your airways, and making it easier to breathe.
Essentially, your spirometry results will not be an accurate reflection of your lung function, because you had to use your inhaler so much before taking the test. You should definitely discuss this with you GP as soon as possible to arrange for a repeat spirometry without inhalers before hand. This may take some organisation from you GP, as it doesn't sound like you can get around easily without them.
If your GP has said they will refer you to respiratory specialist, this is good, as this is definitely what you need. Unfortunately for you, the wait is quite long...
Other parts of your lifestyle should also be taken into account - how old are you? what is your weight? what do you / did you do for a living? Exposure to any pollutants can cause lung problems, being overweight can make lung problems worse, and your age can give a good indication about what conditions are more or less likely to be affecting you.
Essentially, I would not trust your condition to be fixed by any spot diagnoses conducted over the internet, and I am certainly concerned about the extent to which your breathlessness is effective your life. It is always a warning sign that things are getting quite bad when you start to get breathless with minimal / no physical activity.
Your first point of call is to see your GP, or a new GP, and request a repeat spirometry. They will need to arrange it in such a way that enables you to take the test without using your inhalers first. Good luck.
karen78573 23deedee66
Posted
I'm sorry what your going through it is very frustrating when you know there's something wrong but haven't got a name to it even,there is definatly something very wrong that needs seeing to urgently if need be I'd go directly to a hospital & mention you've been to see a GP at your surgery & your not getting any answers & tell them how you feel how your condition is effecting you definatly if you can take someone with you, if you don't have anyone then an advocate will they support you & speak up for you! I don't know if you have a laptop or a mobile phone with internet if you have then please for yourself look up advocacy & what they do you can self refer your self you ring their number & if not available some one will get backin touch with you to find out how they can help you & take some details & arrange an appointment, very good they are I have one myself I'dbe like a headless chicken without one! I wish you the very best please don't wait another day this is urgent! Please let us know how you get on we are allhere for you! Godbless