Confusion

[Shonkie]

One of the things most interesting about using this site is the variety of different experiences people have with the same problem, in my case bronchiectasis. I have been diagnosed for 12 years and see my consultant regularly. She is a bit unforthcoming and big on science. In that time I have had one scan and a lung capacity test at the beginning and not a great deal else apart from the odd chest x ray. I started using a saline nebuliser which was disastrous and damaged my throat but otherwise have no medication to use. I have had pseudomonas recently and believe I have aspergillosis which I have been told is too risky to treat as the treatment is pretty drastic and I am decrepit. I am about to have another lung test, not sure what. This all seems quite different from other people’s experience! Confusing!

[eleanordigby]

Decrepit sounds a bit drastic, in what way are you too decrepit? I take itraconazole for aspergillosis, permanently, but you might only need it for a month or two. I know it’s not a great drug to be on but on the other hand, untreated aspergillosis can really damage the lungs. And like many of us I’m permanently on nebulised antibiotics for pseudomonas.

If you feel you’re not getting the best treatment, or your consultant doesn’t involve you in decisions about the management of your bronchiectasis, I’d urge you to find a different one. You need someone you have confidence in. There are some excellent bronch specialists around, look for a big teaching hospital or tertiary unit and do some googling

[Ern007]

Hi Shonkie.

Have I read your post correctly.? "but otherwise have no medication to use"

I don't understand why?? You have no inhalers? No rescue pack?

You have "bronchiectasis. " and Shortage of breath and Wheeze are part of the symptoms..

You have no medication, I am flabbergasted, ]

You say some of us have "different experiences"

Well you have nothing!!

I have

Salbutamol

Ipratropium

Fostair.

The above are inhalers.

Also rescue pack of

Prednisolone and Doxycycline

I have lung scarring and emphysema.

My point being I have above medication -

You have "bronchiectasis." and have no medication.

Have I read your post correctly - I know little about bronchiectasis. other than short of Breath, Wheeze and coughing up blood.

Why have you no meds, does not sound right.

[Egpa]

Hi, I have bronciactsis and asthma. Both need medication to keep under control. My consultant gave my ventolin, fostair, saline nebs and my rescue pack is now co-amoziclav, it changes some times when I have send a sputem test in to my GP or I have had lung tests at the hospital. I also see a physio every 6 months for breathing exercises, then gave me an AerobiKA and a nebuliser to help bring up the muck as I don't get on very well with the breathing exercises. You need to ask for another consultant that knows what they are going mine is a bronciactsis specialist not just a ordinary doctor. Good luck, take care and stay safe.

[GintyFerguson]

Asthma and bronchectasis here and fortunately have great doc. Seems to vary; a proverbial post code lottery. Incruse and Fostair only. Cold , paint, smoke and perfume are my enemies! I've had an annual 'service' at the hospital with x Ray's and breathing tests apart from two years during covid when it was a phone chat. I have rescue abs in the house, doxycycline. Co- amoxvlav stopped working. Ask and hopefully you will be given.

[Phill1]

i have to agree with all the above responders

You should be seen by a Consultant that specializes in Bronchiectasis .

I too have pseudomonas ... It's important that you have annual CT scans and lung function tests which are stipulated in the guidelines for all BE patients & should be followed

And you should have been taught how to do daily lung / mucus clearance? ... Which is vital to keep pseudomonas at bay .. Hope you have 🤞

[Shonkie]

Thank you to everyone for the very useful posts. Besides the bronchiectasis I have RA, AS, polyneuropathy and a leaking heart valve. I am 75. I take no regular medication for the lungs only strong antibiotics when things get out of hand. I do feel that more could be done as my lungs have considerably deteriorated over the last few years. My not very forthcoming lung specialist is starting to do some testing but in honesty the best help and advice I have had lately was from the HU specialist nurse by phone. I would very much appreciate specialist bronchiectasis care but I live in Sussex and going to a London hospital is not realistic. Clearly I need to be more assertive but the power over decisions is always in the hands of the medics. Thanks again.

[eleanordigby in reply to Shonkie]

Could you get to Brighton? Can’t remember who it was but I mentioned to someone here recently that there’s a very good bronch specialist at the Royal Sussex. I go to the Brompton & came across her because she worked there for quite a while. I don’t know what the waiting lists are like in Brighton. I can send you her details in a message if you’re interested?

[Shonkie in reply to eleanordigby]

Thanks, I already see Dr Hurt there as my consultant. Not sure where that leaves us! I wasn't aware she is a bronch specialist, I shall enquire further.

[Shonkie in reply to Shonkie]

Just to add that I think the other autoimmune issues I have make treatment more problematic, for instance there are a lot of medications I can't take for RA like biologics. My local surgery is great so I can get antibiotics very quickly if needed.

[eleanordigby in reply to Shonkie]

Oh I see! Yes, at the Brompton about 10 years ago she worked with a Professor in bronchiectasis and adult cystic fibrosis. I thought she was really good. I’m the kind of patient who likes to be very involved in my treatment & I ask a lot of questions. I always found her very responsive to that. Maybe you do need to be more assertive.

[Shonkie in reply to eleanordigby]

You are right I need to get more answers about my condition, it is such a short time that the discussion can wander about and not get anywhere. Writing questions will probably help and I shall try to pin things down more. Thanks for your help.

[Karenanne61 in reply to Shonkie]

For appointments at Harefield they do suggest you write down any questions/items you want to discuss. For my first app at their tx clinic I had, understandably, loads! The tx co ordinator sat down with me and my husband and said "right, fire away"! It was great!

[Oshgosh]

I think that the drugs for aspergillosis’ can affect people to different degrees.

When I was diagnosed I was on a ward next to a lady with Aspergergollosis.

She was on 24 hour oxygen,generally unwell. She taught me a lot in the way she dealt with her conditions.

She was on drugs for Aspergillosis,she told me that she was getting more side effects than benefits,she was going to discuss it with her consultant.

I’ve lost touch with her,I suspect that she is no longer with us.

I remember her telling me that to her quality of life came first.

Perhaps you could ask your consultant to explain why she thinks you’re too old for the drugs.

I’m a bit confused you have no medication.

I know nothing about bronchiectasis,but surely you should have a rescue pack so that you can start treatment as soon as you are ill.

I’m 70 I have diagnosed of auto immune conditions non Specific Interstitial Pneumatic.and lung fibrosis.

I have steroids daily.

Carbocysteine- helps me cough up secretions.

Immunosuppressants.

Antihistamines

Vitamin D

Lansansaprole for acid reflux

Nintendanib for lung fibrosis

Stuff for pain relief plus morphine

Amitryptline for back pain.

I commented to my husband that even though I still feel unwell since I’ve been diagnosed and medicated I feel more stable,as long as I nebulise twice daily I can cope.

Apologies for the long post good luck,keep warm

[MoyB]

My experience is very different from yours. I have asthma and bronchiectasis and am seen annually by a consultant in Eastbourne who has done his very best for me. Since 2015 I have had two CT scans, several chest x-rays, changes of medication, spirometry tests at each meeting (except during the Pandemic). I have two daily inhalers plus ventolin as and when. I take Carbosisteine to loosen the mucous and also have montelukast, antihistimine and beconase spray, these last three being for the asthma.

I have attended two NHS pulmonary rehab courses and I have access to the wonderful Community Respiratory team 365 days a year.

I could not ask for more.

I think your consultant needs a kick up the proverbial!

I do know that not everyone is as fortunate as I am . I believe you need to be as informed as possible and pro-active. Please don't wait to be offered things. I think the medics sometimes get stuck in a bit of a rut and it's easy to just repeat the same treatment without exploring something else.

Having said that, I appreciate they have years of training and experience and I just have eyes, ears and the internet! But I have found that my GP and my consultant are both open minded and willing to discuss the pros and cons of why something may or may not work

I'm sure you're not decrepit! 🤣 xx Moy

[Shonkie]

Thank you so much for your comments I certainly get nothing like the care you have though I am on the list for a Pulmonary Rehab course, from what I have heard I should live so long! I find it odd not to have ever had medication as I could certainly do with something to help with clearing my lungs which I am bad at. I do read a lot but it seems that I need to be.more assertive about getting help. Glad to hear you have such good care.

[JulyAugust]

Shonkie, you probably would be decrepit with no proper medication and by that I mean inhalers etc. My GP was hopeless and I had to push for everything myself in terms of referrals etc. The pulmonary rehabilitation course turned my life around. I could barely walk up the stairs but now have no problem doing so. Don’t wait to come to the top of the waiting list. You can do exercise at home. Walk for 30 mins each day or at least three times per week - get a treadmill if you can but if not, walk around your house for 30 mins (or two x fifteen mins if you tire too easily); lift weights 3 x 10 for legs and ditto for arms. Don’t think it won’t work for you…it takes about three weeks of doing a ‘workout’ three or four times a week to start noticing a significant improvement but you have to do it religiously. You will no longer feel “decrepit”. Re your consultant, can you not ask your GP to refer you to another specialist? Best wishes, Jan.

[Shonkie in reply to JulyAugust]

Thank you for your very good advice.