Up to the brompton

Been up to the brompton since my downward spiral in December and can’t say they’ve done a lot, even tho my breathing is deteriorating and I feel it getting harder and the persistent wheeze is always there and has been since December all the doc did was do the same as my consultant in my normal hospital has been doing for ages, taking a look at an old ct scan to a new one seeing no change and trying to tell me there’s no progression even tho I massively feel it all that’s there is scarring that been there from an infection as a baby that’s left me with damaged lungs and 65% lung function which I’ve lived a completely normal life with and only 4 years ago in school I could play best part of a rugby game with a little breather but now I can’t run for a bus think about I’m another 4 or 5 years then are they really gonna tell me there’s no progression and when I asked why has it got so bad suddenly she just said “it happens” even when I was at my fittest exercise started getting harder even tho I was constantly boxing and I try tell them and they just rely on there numbers and tests which don’t seem to be showing how I feel what so ever and they have no explanation as to what is happening other then scarring and small airways disease which “isn’t” progressing

[Katinka46]

Hi Ricky

I have been thinking about you and your difficult situation ever since you first posted here. I am so sorry that RBH hasn't been able to help. It is very disappointing. It does sound like a small airways disease and they are notoriously difficult to diagnose. Also they can be quite severe without showing significant abnormalities on lung function tests. For there to be any evidence of disease showing in Spirometry it means the the condition is "advanced and widespread". RBH know this so it is puzzling that they have not been more helpful.

With love from your HU Granny xxx

[Katinka46]

P.S. It is the middle of the night. Go back to bed young man, now...

[Hidden in reply to Katinka46]

So what are you doing up then?

[Caspiana in reply to Hidden]

😀

[Caspiana]

Hello Hidden .

I like Katinka46 and yourself have OB. I hear your frustration. I recently had a lung function test and my currently my FFEV 1 is at 35% no different from a year ago. Now by and large this is welcome news to me, yet, I know in my heart that I find it harder to do things now, compared to a year ago. Numbers do not always reflect how we feel.

What current treatment are you on, and when you went to the RBH, what were your expectations of care from your medical team there?

Sending warm wishes,

Cas xx 🌞🐞

[Hidden in reply to Caspiana]

Been on fostair and montelukast for ages anyway but only new med I’m on is azithromycin and prednisolone but I’m weaning off that now can’t say that even helped massively

[Caspiana in reply to Hidden]

I am on both those drugs, Spiriva and Relvar. I have been on Azithromycin and Predisone for a few years. Were you told you were going to wean off completely? My pulmonary doctor will not let me go off either. Do you mind if I ask what your FEV1 is at the moment?

Thank you.

Cas 🌿

[Hidden in reply to Caspiana]

See how I feel as I come off them and fev 1 is 62 has been for ages tho always has bad lungs the numbers ain’t changing it’s so confusing even tho there’s obviously a severe wheeze that’s persistent and been there months

[Caspiana]

Yes, I understand what you mean. If you go off them and feel like you are better off in them, please talk to your doctor. Keep us posted if you'd like to. Sending warm wishes. xx 🙋🐕

[sassy59]

You’ve had some good replies so I just want to wish you all the very best and maybe staying on Azithromycin and steroids will help you somewhat. See how you feel. Xxxx

[tomc]

I am not long out of hospital.

In June last year I had to have an operation to remove my colon, The Anaesthetist came to see me and said that due to my COPD the operation would be fatal for me ( it was done by another procedure by a very sympathetic surgeon and I survived.

I did a pre op spiromatory the result was ventilatory defect lung function 54%

Rhis time in hospital 5 weeks Professor said "we can only make you comfortable you are only running on 40%... after he left a young lass came in to my room and started chatting, I said Prof said I am running on 40%, she Replied, I have to prove that first!" say what!! a junior doctor overturning Scotland leading pulmologist`s diagnosis!.

I have done nothing but take breathing tests and yet more again next month.

My point here is this, If you are still breathing, have faith in yourself and keep breathing, IT`S ALWAYS A GOOD DAY WHEN YOU WAKE UP.

By taking full ownership of your condition, YOU, will be in control and less stressed by others assumptions..... as the doctors say, the lungs are not a science each is different and know their own body better than we do.

Take heart, have faith and keep on fighting....65% is not bad at all

[mrsmummy in reply to tomc]

Nice to see you around tomc .

[tomc in reply to mrsmummy]

Thank you mrsmummy

[Dedalus]

It is so frustrating to hear that the Brompton's reply to your question was "it happens". I am getting so fed up with people shrugging their shoulders and telling me more or less the same thing, instead of trying to find out that elusive 'why'. I was actually going to be asked to be referred to the Brompton (on the advice of another specialist) and I will still try, but hope I don't get the brush-off too. What is your next step? Are they going to do any more tests etc?

[Hidden in reply to Dedalus]

Got told they’ll keep an eye on me but I mean what can they do? I’ve tried every bronchodilator done a reversibility rest and nothing is revering by still deteriorating they say I got a small airways disease and there’s a lot going on and scarring and stuff but honestly I don’t think there’s anything else to pull out the hat proper nightmare god knows what I’ll be like in 5 years but they can only do so much

[Dedalus in reply to Hidden]

Glad they'll still be keeping an eye on you, and there are always new treatments etc in the offing, so we can't give up (and I know you won't give up). I am still trying to keep up with my exercising and walking (with oxygen) and pray that my breathing will at least stabilise, rather than deteriorating at the rate of knots. I am told mine is due to inflammation after an exacerbation and hospitalisation in November, but nothing helps apart from steroids - and as soon as each course of steroids ends I go into a downward spiral again. We can but try to stay positive though. I sincerely hope you can get your breathing back to a better level. All best wishes x

[Hidden in reply to Dedalus]

Cheers bud, I mean she says there can be improvement but I mean haven’t seen any in 5 yrs under specialists but chin up a? Aha

[Dedalus]

Stay positive. We're all different and they/you may be able to pull something out of the bag - I sincerely hope so. Please keep us updated x

[sarcoid1234]

You say “my breathing is deteriorating and I feel it getting harder and the persistent wheeze is always there and has been since December”. I apologise if this information is not relevant, but I wonder if you think the wheeze is caused by phlegm or mucus on your lungs.

I have a different condition (sarcoidosis with a bit of bronchiectasis) and produce phlegm on my lungs every day. I have to cough it up every day, often morning as well as bedtime, or I would be wheezing especially when I lie down. To enable me to cough it up I do Active Cycle of Breathing – ACBT - (also known as huffing). There are lots of videos to explain how to do it on Youtube. There is also a simple device called a Flutter which vibrates the lungs to help loosen the phlegm. Some people who have a lot of phlegm use a nebuliser with 7% saline solution before they do the ACBT, but a physiotherapist has to assess you first to see if this is suitable. If you do have constant phlegm you could have a word with your doctor about using a nebuliser and prescribing the saline solution.

[Hidden]

Nah there’s not too much phlegm they had me on carbocistein but can’t say there was too much like bits and bobs but not masses to the point it was obstruction my breathing and you can’t really hear it in my chest either, I use a steam room a lot when I head up the gym and that don’t bring up too much either