Opinions please 😊

[Treed12]

Im 32 with adult on set asthma, quite severe and newly diagnosed with bronchiectasis. Im constantly back and forth to the gp and asthma nurse as things are not well controlled and im under consultant care at my local hospital. Im being proactive, the doctors are being proactive. I've researched lots and fairly confident im on the right track. Currently maxed out on 'normal meds' next steps maintence pred... Now my query is. My caring parents cant quite accept all im going through and disregard all of the above. They think i can be instantly fixed. Im just not seeing the right people. They like to throw money at things and dont understand its trial amd error and fitting criteria for treatment. They want to pay for me ' to go private at the best london hospital' i dont even know if the best resp doctors are in london! Anyway. If they keep badgering, can anyone recommend or see the point of paying privately when im already in the mix? Thanks for reading.

[Hidden]

There is no point in paying with bronchiectasis. It cannot be ‘fixed’. It is a matter of managing it long term so that you can lead a full and productive life, as I have. ( 66 years extensive bronch)This is achieved much better by finding a true bronchiectasis specialist working in the NHS who will have specialist physios and hopefully a specialist bronchiectasis nurse and of course, a super secretary to form the bridge between you and your con when you are in trouble. These specialists are usually at large teaching hospitals and no, they are not all in London. One of the best is in Birmingham. She co wrote the latest guidelines on managing bronch. At these hospitals they have access to the latest tecnology for investigations, and are up to date with the latest treatments and management stategies. Private hospitals do not all have these facilities and the number of ongoing tests is very expensive and unnecessary when it can all be done in house at a large NHS hospital.

Unfortunately there are a lot of general respiratory consultants out there who see patients privately but do not have the expertise or experience in bronch that a true bronch specialist has. Avoid them like the plague.

A bronch specialist will tell your GP how to support your treatment and as many GPs know virtually nothing about bronch they are usually grateful for the support.

Look on the internet for a true bronch specialist in your area. As I said, they are usually at large teaching hospitals. Take the name to your GP and insist on a referral. Do not take no for an answer. General respiratory consultants are primarily trained in copd. They have very little knowledge or experience of bronch so do not agree to be treated by one.

What I have said would also apply to your asthma. They are 2 very different conditions and need their own specialists. So you have work to do. I’m afraid that we have to be very pro active in our own interests and vociferous in sourcing the right treatment and management.

There are several of us on here who have been succesfully managing bronch and our medics for many years and when you are ready for day to day support with that we are here for you. I am sure that applies to asthma too.

As for your parents. It would be better if instead of panicking like headless chickens, they do some reading on both conditions The Guidelines NOT Dr Google and support you whilst you find expert help through which you will be able to control both conditions and continue with a long and happy life. Good luck.

[sassy59 in reply to Hidden]

Wonderful reply with lots of great info Littlepom. Xxx

[cofdrop-UK]

Excellent reply from Littlepom.

H Treading and a very warm welcome to you, although I am sorry to hear of your health issues.

Like LP I am another lifelong bronch from babyhood at the start of the NHS and more reecently asthma.

As LP has already said you need to make sure you have a consultant who is a respiratory consultant with a special interest in cf/bronchiectasis. You should expect them to do all the usual stuff eg lung function, history, etc but also to refer you to a respiratory physio. They should go through all the techniques and PEP gadgets to help you find the most suitable for you, in order for you to do your own lung clearance. They would also arrange for you to see an immunologist. I have talked to consultants at meetings and one thought you do not necessarily need a consultant who has a special interest in cf, but as I expained to him I did not agree, as for example, at my hospital if you are unde the care of a general resp con then if you need IVs you would have to be in hospital for 14 days. However if you are unde the care of CF/Bronch con then the cf unit will arrange if you are confident and able to do so, then you can do your own IVs at home. Much better and more cost effective. One of our cf con is also an expert in asthma and asthma is a more widely known about, I think it much more likely your bronch con would be more than able to treat your asthma, than an asthma con would be able to treat bronch.

I feel for you obviously but I also feel for your poor parents. My dearest late Mum was just so relieved that as a 5 month old baby in the 40s I survived double pneumonia and whooping cough, albeit with severely damaged lungs. That is not to say she had it easy, far from it. It is never easy for parents with a sick child and I would say especially hard in those days for various reasons.

So your Mum and Dad love you so very much and have always been able to protect and ‘put things right for you’, and I totally understand their frustration and desire to take all this away from you. The most help they can give you is to trust that you are a grown up woman who sounds like you have got a good handle on what you are dealing with. They will also have to understand that bronchiectasis is damage which has already been done and therefore the best treatment, at present, is proactive management, which you sound more than willing to be compliant with. They need to show their love by being there for you, especially when you have an exacerbation and help you in a practical way, trusting your judgement re the medical side of things.

I used to have an involvement with ERS as one of the patient representatives and I will put up a link on Patient Priorities - Bronchiectasis which is one of the best, in my opinion, information on BE and is constantly being updated. Sadly I had to leave because of other medical issues and it saddended me so much, although I am fine with it now. My ugly mug is on the about - Sue. As all BE patient are diverse some will just want to know the basic stuff and some want to read all the latest scientific papers. You will find basic stuff right through to interviews from one clinician to another (all specialists in BE). As you will see all the BE consultants know each other - they meet at all the conferences and congress worldwide.

europeanlunginfo.org/bronch...

Wishing you well and of course your lovely parents. It might be helpful for them to read the link and the comments here.

Love cx

[Hidden in reply to cofdrop-UK]

Fabulous reply cofdrop! I’m sure that Treed12 will get lots of help from all of that.

[Patsy164]

Hi Treed I’m sorry to hear you have Bronchiectasis and Asthma and so young. I have the same but only found out a couple of years ago. Littlepom is a very valued person on this site and especially regarding Bronchiectasis.

I suffered for many years without being diagnosed but now we have found a treatment that suits me.

I think you are totally on the right track and you have researched and understood what the implications are. The hospitals in London can be obtained through the NHS just by referral from your GP. I quite understand where your parents are coming from they are worried but I would show them our responses and maybe they don’t need to spend money on private healthcare. Speak to your GP about referral to a London hospital I am told this a good hospital.

rbhh-specialistcare.co.uk/d...

Still at the end of the day it’s up to you what you wish to do.

Keep us updated with your progress x

[Treed12]

Thanks for all the replies. Lots to think about x

[Oshgosh]

It’s hard for parents.even when your children are grown,your instinct is to do the best for them.

The prevailing attitude theses days bias that there is a cure for everything.

I just wish that was so.

Just give your parents the links and let them read through.

Then give each other a big hug!