Help / Advice ! ?

Hi There,

Just wondering if anyone can offer me some form of guidance as to what to do next?, starting to really struggle !

I'm Simon, a 31 year old Computer Consultant.

I was originally diagnosed with Asthma when I was about 11 or 12, and had the usual Ventolin / Becotide combination. This carried on for many years, and was never much of a bother, other than the increased coughing etc whenever i developed some sort of cold or chest infection.

When I was in my mid 20's I had some rather rapid weight loss (about 7 stone in 6 months), and at that point, I was playing football 2 times a week, and going to the gym pretty much every day, without so much as taking any form of inhaler.. So, clearly I thought i'd pretty much got it licked.

As my later 20's and early 30's have come, I’ve plonked on a bit of weight, but not lots..(I blame having a child :o)...) and I’m not AS active as I was, but still reasonably fit, and again, still haven't so much as had to touch an inhaler (other than with a bad chest cold for e.g.) for years.

A couple of weekends ago, I had some kind of Flu / bug, which left me with a high temperature, and quite short of breath, A day or so later still struggling to breath properly, I was advised to go to A&E.

I went to the local A&E department early hours of the Monday morning, and they could tell I was struggling, so pretty much straight away put me on a nebuliser (1st time ever..), and this seemed to at least improve things a little. They prescribed me some “Predisalone” , “Salamol” and some Anti-Biotics, and sent me on my way about 2 hours later (once my peak flow had improved some).

I ended up having to go up to London for some work commitment, and on the Wednesday (after not being able to sleep all the previous night, through shortness of breath, which didn’t seem to be relieved at all by the Salamol.) I ended up in Chelsea and Westminster A&E. Whilst I was there I explained the situation, that normally my Asthma doesn’t even really exist, let alone bother me to this extent, but that I’d been in A&E earlier in the week with the same problem. The doctor on Duty decided to send me for a Chest X-Ray, which apparently showed some “Honeycombing”, I was then asked lots of questions about my work / home environment, in terms of dust etc, but I explained non of that is an issue. The Doctor then wrote out a note for me to pass on to my GP for a Referral to a respiratory specialist..Again, my peak flow improved after the nebuliser, and I was prescribed some “stronger” Anti-Biotics, and sent on my way.

On the Thursday, I went to see my GP, with the referral recommendation, and copy of the Xray, however, was told that this can take quite a few weeks to come back.

On the Friday of that week, I was again struggling, and was back in my home town now (Southampton) and ended up in A&E again, where they put me on a nebuliser again, and took another X-ray of my chest, This time the doctor said it showed nothing, and told me that my chest sounded clear, and to just “take it easy”. (yes, I did feel particularly “fobbed” off this time)

Saturday and Monday, Ended up in Southampton A&E again, with exactly the same results, Nebuliser, more steroids, oh and perhaps a change of Anti-Biotic. Each time, I tried to explain to the doctor / nurse / student / that was dealing with me that, this is NOT normal at all for me and that I can’t go on, keep having to come in to A&E for relief... Each time, simply being told that I need to allow things to start working.

I appreciate that A&E is there to do a job, and that’s stop people from dying I guess... so, as soon as I could breathe more normally, on my way.

On the Tuesday, I’d made an appointment with the GP, and this time the response I received was a lot more sympathetic, The doctor suggested that we took some “sputum” samples and sent those off to be tested. And that she was going to change the Anti-biotics to something “even stronger” and gave me more “Predisalone. She also suggested that I needed to take some time off work to allow things to get better more quickly. I was also asked if I had any private medical cover, to speed up the referral to the respiratory specialist, (which I do have... however as my Asthma is a “pre existing” condition, I’m not covered.)

On the Thursday morning, I was struggling quite badly again, really short of breath, and finding it hard... so, again, I went to A&E in Southampton. I though this was going to head down the exact same route as it had every time before, but the Doctor who saw me was understanding, and could see from my notes that I’d been in and out. After the usual Nebuliser, and Chest X-ray, she could tell I was still struggling, so decided to admit me. After a couple of hours of waiting for a spare bed, I was taken through to a general admissions ward, where I was eventually seen by a doctor, who wanted to put me on regular nebulisers to see if that stabilised things. This doctor believed that my Asthma had been triggered by some sort of viral infection, and although my chest was “clear” my airways were not.

After a wonderful night (full of screams, shouting, delusion, not mine I hasten to add), I was seen by a “specialist” the next day. She very much seemed to know what she was talking about, and was profusely apologetic for the apparent “mismanagement” of my case, and said that I should not have been repeatedly discharged from A&E as I had been. She then went on to change my Becotide Inhaler to “Q-Var”, and told me to use an Aero Chamber. I was then told, that this should really help clear things up... I was to carry on using the nebuliser during the day, but she asked me to try and go the night with just the Salamol, and that if I managed that then they would be happy to discharge me on the Saturday, as clearly I was improving. Someone would come and see me on the Saturday to discuss my progress.

Another wonderful night in a different ward this time (but still plenty of screams, shouts and delusion), I was visited by a chap who, whilst very friendly, I can only assume was a junior doctor. (The ward I was on was organised chaos, people complaining, staff not knowing who was in charge, really was crazy). The Doctor then had a listen to my chest, told me it sounded clear, he then looked at the drug charts, which said I’d had a nebuliser 3 times through the night (which I hadn’t, not even once, there wasn’t even equipment for me to do it with, as I was told to ask for it if I needed it), so he couldn’t discharge me. Clearly you can appreciate my frustration at this point, having hardly slept for 2 nights, and then being told I’ve taken drugs that I hadn’t... Anyway, I ended up “discharging” myself, as clearly I knew the truth, and persuaded the doctor in question to prescribe me the extra anti biotics / steroids that I’d been told I’d need.

I thought, I was starting to get better, Saturday and Sunday weren’t too bad, still short of breath and got tired really easily, but things seemed to be getting better.

On Monday I’d had a bad night again, so arranged to go see my doctor. At my local surgery, I don’t think I’ve seen the same doctor twice, so it’s not so much a GP.. The chap I saw this time was very dismissive, and basically told me that I hadn’t given things enough time. I then started to say about needing to go back to work, and quality of life etc, so he started to pull out the “Sick Note” pad asking me how much time I needed off work.... This wasn’t / isn’t the point... I want to get better, not learn about daytime TV. When this doctor examined me, I wasn’t in particularly bad shape, and my peak flow was quite an improvement from when I’d last been to that surgery. The only thing he was prepared to do was to get in touch with the respiratory clinic to see if there was any way of speeding up the referral.

So, here we are, Early hours of Wednesday morning, I’ve just got up again, really struggling to breath, really tight chest.. the Salamol has given some relief, but I just don’t see how I can go on like this ?

I guess I’m asking if anyone else has been in a similar situation ?, and if so what they did about it ?

This is totally driving me mad.

Thanks for reading all that waffle

Simon

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Hi Simon

Sorry you havre had such a tough time and feel like you have been puched form pillar to post without relay getting much chance to feel better.

As for your referral, they can take a long time but what I would od is find out when and whom the referral was sent to. Once you ahev done that you have two options. You can ask the Gp is its possible to request that you been seen more urgent as you are not getting proper control and suffering continued symptoms. YOu could if you you have mange to find out who the referral ahs been sent to ring the secretary of this consultant and ask how long the waitng list is which will give you some idea hwo long you will have to wait.

Southampton is a specialist center in asthma and has an excellent reserach dept. The consultants are very thorough and excellent as I have been there myself for a second opinion when my own consultant was stuck for what to do next. So once you get to see someone you will be in good hands. There are lots of different types of medication that can help and control asthma so thigns I would hope can be imrpoved for you once you can get to see the right person.

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Thanks a lot for the response..

That's a cracking idea about trying to get the referal details myself.. I'm heading for the phone right now..

Appreciate the support.

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Have just got off the phone from my Doctors surgery... And have been told that the referal is going out with today's date on it.. the referal itself is just to ""General Referals @ Southampton Hospital"".

I am astounded... it was 2 weeks ago that i went in with a copy of a chest xray, and a referal recomendation due to ""honeycombing""..

Do i have any form of redress with my Doctors surgery ? or is this perfectly normal acceptable behaviour ? (i'd be shot if i treated my customers like this)

I'm am so frustrated... I've been in and out of Hospital this last 3 weeks, only to find that the clinic i'm eventually destined to see, doesn't even know of my case yet.

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Hi Simon,

Welcome to Asthma UK; I'm sorry to hear that you've been struggling so much recently, it must be a real shock to be having these sorts of symptoms and having to go to A&E, have nebulisers etc after so many years without problems.

Reading your story, it seems that you've had some bad experiences with the healthcare profession and been a bit unlucky. I'm sorry about that; it must make it quite difficult to trust that you will get the right treatment in future. I hope things improve and that you do at least have one sympathetic GP that you can visit. I'm sorry you've had problems with getting the referral sent through, too - unfortunately that can happen, sometimes, if there are clerical or staffing problems. You might want to raise the problem with the Practice Manager at your GPs to see if steps can be taken to prevent similar problems in future.

Worsening asthma certainly can be triggered by a viral infection in the way that you have experienced; it's not really fully understood why this happens. Your story sounds like a fairly extreme example of this, in that you have gone from having no symptoms to quite nasty symptoms in just a couple of weeks. I have heard of this happening before, though; it's not completely unknown.

If this is 'just' worsening asthma (and the word 'just' is not intended to minimalise or dismiss this possibility), then the good news is that the vast vast majority of asthma (perhaps 95 - 97%) can be fully controlled, with little or no symptoms or interferance with day to day life, once the right combination of medication is found. If I read your story correctly, at the moment you are on Qvar and Salamol, with the addition of presumably short courses of prednisolone and antibiotics. There are many many other treatments for asthma, both inhalers and tablets, so it is highly likely that one or more of these will be effective in controlling things for you. I realise that having been so little troubled by your asthma for so many years, the prospect of being on long term medication probably seems deeply undesirable for you, and you probably want to know *why* this has happened. Investigations may shed some light on the cause, or they may not, but the important thing is that, as you say, you need to get some control and quality of life back. With the right combination of medication, you should be able to do this. Most modern medications for asthma, including inhaled steroids like Qvar, are very well tolerated and have little in the way of side effects. It is also perfectly possible that things will settle down as quickly as they blew up and you will go back to needing little or no medication.

Either way, if you are not settling down with the Qvar (and inhaled steroids can take several weeks to fully 'kick in', although oral steroids like prednisolone usually work within hours to a few days) you should certainly persist with going back to your GP. He or she will certainly be able to add additional treatments that may control things better. As I have said, there are many more treatments available other than just salbutamol (Salamol) and Qvar, and most of these can be given by your GP.

The other consideration is whether there is anything else going on with your lungs. 'Honeycombing' on the chest X ray is not typically seen in asthma. It can be seen in a variety of other lung diseases, which is why the doctor was asking you about risk factors for other lung diseases such as dust exposure. Honeycombing is generally associated with having had quite severe symptoms for quite some time, and also wouldn't be expected to be present on one chest X ray and not on others. Therefore it doesn't quite seem to fit in with your symptoms or story. It's possible that you had some other abnormality on your chest X ray such as evidence of infection, that has been interpreted as honeycombing. There are a few different possibilities that might explain your symptoms, so I think the referral to the chest consultant is a good idea.

As others have said, asking your GP to make the referral urgent and ringing up the consultant's secretary can help to speed things up. If you have not been referred to a named consultant, you could try ringing up and asking for one of the respiratory secretaries - they should be able to direct you to the correct person. If things are taking a long time, it might be worth paying for a one off consultation privately, even though this is not covered by your insurance - a one off out-patients consultation shouldn't be too expensive, and if the consultant does say that he/she suspects another lung disease, rather than asthma, it might be that subsequent investigations would be covered on your insurance. Either way, it would get your foot in the door and might help to put your mind at rest. If the consultant does think that this is 'just' asthma, your GP may well be able to take care of it from then on - most people with even fairly severe asthma can be managed perfectly adequately by their GP.

In the mean time, if you are struggling to breathe, are having difficulty in completing sentences, are getting less relief than usual from the Salamol reliever inhaler or are worried in any other way, please do seek medical attention again urgently by going back to A&E or dialling 999. I know your past experiences probably make it very difficult to consider doing this, but a severe asthma attack could potentially be life-threatening. For all the problems in the NHS, in a true life-threatening situation hospital is the place you need to be.

All the best, and do let us know how you get on.

Em H

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Hi

I cant comment on your treatment as far as hospitals but yoiu sound a bit like me in many ways. I am the same age as you and was daignosed at 10. Always used relievers and had a spell on a preventer but I seemed to grow out of it (thought I had) I have always been sport mad and teach PE now. However, my asthma has gone worse. Preganancy did not help (twice over - I know that is not the same as you) but the other main thing that seems to have changed is that I no longer have time to be sport mad myself. I still have a horse and ride a lot, I swim once a week and play hockey once as week but that is it (and as I say I teach PE) However, I used to swim competetively and swim twice a day most days - in this period, I was off preventers and rarely needed a reliever.

Like you, I have had a viral thing and was off all last week and part of previous week and ended up on pred for the first time in my life and nearly needed a and e on a few occaions but managed myself to control it. I am also back on beclazone preventer and used more salbutomol last week (before the pred) than ever before - shaking on the stuff!

I too have questioned what has changed so drastically (or is it just parenthood!)

hope ya sorted soon

Kat