ABPA and bronchestasis ... exhaustion .... Please help

[jaynebshp]

Hi. Is there anyone on here that has ABPA and bronchectasis as suffers with extreme exhaustion and cannot work. My husband is 48 and no energy what so ever and been signed off again !! Please help

[Hidden]

Hello Jayne, I noticed that nobody has replied to you and I think that this is because their are several of us on here who have bronchiectasis but very few who have aspergilla reaction with it. I have lifelong bronchiectasis (64 years) and so I know exactly what it is to live with it. I had ABPA briefly but my immune system fought it off. Bronchiectasis can be very debilitating indeed. Also there are times when you feel totally 'normal'. Usually the extreme fatigue comes when there is an exacerbation ( infection) which needs treating with antibiotics. Different ones according to the bug that is in the lungs, in a high enough dose for long enough. There are also different delivery systems. For example, I nebulise an ab every day to keep the bugs in my lungs down to a manageable level rather than ride the roller coaster of frequent exacerbations.

It is also vital that any mucus in the lungs is scrupulously emptied from the lungs every day to stop the bugs having a party down there and starting an exacerbation.

Does your husband have a bronchiectasis specialist? GPs do their best but unfortunately they have very little to no training in bronch and are hopeless with it. They don't like to admit it though. Also, many respiratory consultants do not specialise in bronch so you need to make sure that you find one who has a clinic near to you. They are usually based in large teaching hospitals. Once he is under their care your husband should have access to a physio who can help him to learn how to get the mucus up. Bronchiectasis is very complex. It needs a programme of medication and self management to keep it under control. Go to your GP armed with a name and don't take no for an answer until your husband gets a referral.

My main relationship is with my consultant. I discuss how the bronch is going with them and they tell the GP which abs etc to give me. I insist that the consultant sends me copies of all letters. If your husband does have a bronch specialist, call his/her secretary and tell them how ill he feels. Most of the secretaries are very good and will talk to the consultant or fit you in to see them.

Working with bronch is very difficult because of the good days and bad days and the awful fatigue. Your husband's employers should know of his condition because they have a duty to accomodate his disability and his needs.

I hope that I have helped a bit.

[Hidden]

I've both those, yes it can be very exhausting. Bronch is exhausting anyway, but ABPA makes the sputum even stickier, hence longer physio, more effort to cough up & more night-time congestion. But it is possible to get it under control, with the right programme, as Hidden says. Is he taking anti-fungals & maintenance prednisone for the ABPA? I was able to work part-time for quite a few years, once things were under control, but now I'm 65 I do have to pace myself & doing physio takes me a long time. Despite the exhaustion though, exercise is SO important. Nothing like it for clearing the lungs.

[Nanny49]

I have bronch and ABPA. I was treated with itraconazole for the ABPA for 4 months. This was very successful but unfortunately the side effects meant it had to be stopped. I wonder what treatment your husband is on as my main side effect was exhaustion, low blood pressure (60/40) and raised blood oxygen (98/99). I also suffered fluid retention so badly I had to use a wheelchair. All these issues resolved once the Itraconazole was stopped but the ABPA is back with a vengeance. Seems like a catch 22 situation. I see my consultant in a couple of weeks and hopefully he'll have a plan! I do hope your husband gets some resolution also. Will keep you posted on what consultant comes up with.

[Hidden in reply to Nanny49]

What a pity, nanny. I was on it for years with minimal side effects, though my adrenal glands stopped working because of the pred, but I just take hydrocortisone instead. It's back now though & new consultant is reluctant to put me back on them, can't remember his reasoning but am seeing him later this month. Good luck with yours!

[Nanny49 in reply to Hidden]

Please let me know if you are given a substitute. I've also been put on hydrocortisone but on half the original dose as caused fluid retention and tremors. I'm fine on the lower dose. Still being tested by endo as they're not happy with some of my levels.

[jaynebshp]

Hi all thanks for your replies. He was put on steriods initially for 3 months now nothing. He us now being tested for sleep apnea. All such a nightmare xx