Brittle Asthma

[DuchessofMalfi]

Sorry this is a long post - looking for some reassurance from anyone else out there who has or has a family member with brittle asthma.

DH has just been diagnosed with brittle asthma. He has been asthmatic since he was a child, but he had grown out of it and, as an adult, had managed to keep it under control until about five years ago.

He is generally fit - he's a former marathon runner, and runs to keep his lungs clear but in the past five years has needed to have inhalers. It has been steadily getting worse. About a month ago he collapsed with a sudden and severe asthma attack, and was blue-lighted into hospital on the advice of the paramedic attending him. He was falling unconscious. We were both terrified that he wasn't going to make it. Fortunately he did, but he hasn't been well since - he can't keep his asthma under control any longer and is back and forth to the doctor and asthma clinic for regular monitoring.

I've been reading up about it on the Asthma UK website, and scared myself silly over it. DS appears to have inherited the asthma gene from DH too - he's 5 and has both the blue and the brown inhalers, although we're currently trying (on the asthma nurse's advice) to reduce the steroid intake to see if we can stabilise him.

What really scares me is that we live about an hour's drive from the nearest A&E and have to rely on the paramedic getting to us quickly with the nebuliser (which fortunately he can do).

I just need some reassurance that all will be well

hello :) I have brittle asthma - although currently they are queering that diagnosis and looking in to other lung problems but regardless of that I have experience of the condition.

Is he seeing a consultant at asthma clinic? How often does he need to be nebulised? I was prescribed one at home because of how bad I get, might be an option. Also ten puffs of ventolin through a spacer can help. Assume he has had spirometery tests?

Asthma Uk are great, their phone line can be really helpful.

Thanks for replying giraffe. He was nebulised twice in the evening of the day he was blue-lighted in, but not before that or since (except when he was in hospital). The severity of his asthma is all very new to him.

He sees the asthma nurse at the clinic, and GP when necessary (it's at the doctor's surgery) and is booked in for the spirometry tests in three weeks' time.

At the moment it feels like we're living on a knife edge. His peak flow varies from 400 down to 290 daily (it's up and down all day). He has his inhaler with him at all times, and quite often reaches the "maximum" dosage although he's been told that that can be exceeded safely when he needs it. We were given loads of advice by the paramedic in attendance, who was wonderful, but it still isn't reassuring when he wakes at 2 or 3 in the morning coughing, and starts to worry that we're on a downward spiral again.

It sounds as if it would be absolutely reasonable to ask for a home nebuliser give me the severity of his asthma and the distance to A&E. Good luck and fingers crossed for an improvement.

I agree with you Matilda - I think a home nebuliser would give us peace of mind. Have suggested to DH that he ask when he next goes to clinic.

Hi I have brittle asthma too :( you can go online and buy home nebulisers. NHL rarely give them out anymore. I have an omeron one and a handheld omeron one too. It is very scary at first I have come round in ICUs more often than I would like to remember. But as time goes on you just learn not to stress. Sorting out the tight medication and inhalers will take a while and bautako breathing exercises are useful. Good luck

I have an NHS one and also my own back up one and a portable one. You need a consultant to agree to prescribe you the meds for it though. Some really don't like you to have them at all, will depend on your own consultants views.

I think it can be hard to trust your body when you have had a close call, and its just as hard for partners- perhaps harder. You do get used to it, and adapt. I have a nebuliser at home, but GPs in the UK don't seem to like prescribing nebules unless the consultant OKs it.

Hi DuchessofMalfi, it sounds v stressful for you and your DH right now

Consultants are often not keen to give home nebulisers as they can give a false sense of security - people have died because they stayed at home giving themselves nebulisers when they should have been in hospital having high flow oxygen, iv steroids, magnesium etc and the whole host of things and assessments that can't be done at home. I've met patients who think that because they have a nebuliser there's no point going to hospital so it is a real risk.

That doesn't mean they never do it, just there is a good reason they don't give them to everybody, it isn't just about saving money for example.

It would be a good idea for your DH to discuss this with his consultant at the next visit, including the info that you are an hour from A+E. Your consultant may or may not feel it would be helpful to have a home neb, or could suggest something like 'after 2 nebs if not settled get paramedic' for example.

I agree with having a clear written plan, of what to do when. I wanted also to say that things may settle down, once the best treatment for your dh has been decided on.