First Hospital Appointment

[MelAidJack]

Well I had my first appointment with a consultant/ chest specialist yesterday since being told I had bronchiectasis. from reading other posts I think it was similar to others, had to breath into some tube and had 10 blood samples taken also informed that its in both my lungs, feeling a little down today (sorry for myself) but whats really upsetting me is how lathargic i am. I find it really hard to get up and do things my get up and go seams to have got up and gone. Hoping this feeling will pass soon. After all I know i am lucky the outcome could have been a lot worse. Sorry for being so glum.

[Titchy52]

MelAidJack your allowed to feel down cause wen you go down you will come back up with a lot more energy you body's telling you to rest huggs an XXXX

[Hidden]

Hi MelAidJack

Welcome to the bronch club. I am presuming that you had a scan before being given a diagnosis as that is the only sure way of diagnosing bronchiectasis. As you say that you had a visit to the consultant after diagnosis I guess that you must have.

So here you are. The down side is that you have a lung condition which you will live with (NOT suffer from) for the rest of your life. You will have to become the expert in its vagaries and treatment because there is a woeful amount of ignorance about it amongst GPs. You will find masses of knowledge and experience on here.

The up side is that now that you know what it is you can take control and make sure that you live as full a life as possible. I feel that you aren't quite ready to discuss lifestyle, drugs, gunk fighting and drug regimes at present. When you are there are quite a few of us on here who will be happy to help with support and advice.

Don't feel badly for being lethargic and down. You have had serious news and it is natural to feel like that when the bronch is sapping your energy. I would be fibbing if I said that I didn't get depressed when it makes me exhausted or prevents me from doing my normal activities

As you get treatment and a daily routine, together with understanding more and more about your condition, you will feel more like enjoying life again.

So be kind to yourself and we are here for you.

[MelAidJack in reply to Hidden]

Thank you for taking the time to explain things to me, it really does help. Yes I have had xray and ct scans. I am normally very positive but feel like I want to scream out loud, I am a carer and I look after people who require oxygen and people who are on ventilators to aid their breathing and hope this is not my future? I will be honest I am scared. On the up side the consultant did seem very nice and is trying to find out how/why this has developed at my age? (50) but looking on here some people have had this from being children. I am still needing answers etc looks like this is the place to find them. So thank you very much for taking the time x

[Hidden in reply to MelAidJack]

It is difficult for you as you spend so much time with people who have such severe difficulties. It certainly does not mean that this is the furure for you.

I have had extensive bronchiectasis since I was 3 and am now 66. I have never had to have oxygen and until my heart developed AF and left ventricular cardiomyopathy 3 years ago ( not caused by the bronch) I could keep up with most of my contemporaries. Better than many actually as I don't have dodgy hips, knees etc. Now I pace myself, making sure to walk my dog, use stairs when I can and I have just ordered yet another exercise machine ( I get bored). My latest spirometry tests were a tiny bit worse, which is expected as I age but my volume and gas exchange were better than last time. When I have an exacerbation I do need to give my body a chance to rest whilst the antibiotics work, remembering always to get that gunk out!

As for developing it at an early age. You have probably been living with it coming on gradually for a long time in a mild form as opposed to us old stagers who had catastrophic lung damage at an early age. Slowly, as successive chest infections added to your damage you noticed it. Have you been tested for A1A antitrypsin deficiency? This is a hereditory condition where the body does not coat the lungs with the substance which normally protects them from damage caused by the proteins which rush to the lungs to battle infection. These proteins then damage the lungs and with A1A it happens more quickly than in the lifetime of people without that deficiency. About one sixth of the population have it and it can result in bronchiectasis. About one third, which includes me, never find out why they have it. I had pneumonias as a child which did the damage but do not know why I had them.

My advice is not to judge your own condition or prognosis by other lung conditions, many of which progress more quickly and give a different type of breathlessness in different ways to bronchiectasis and best not to compare with other bronchs as we are all vary so much.

I hope that your consultant gave you a treatment plan which will guide you through whilst you are learning to respond to the different signs that your body gives you. If not, call and ask for one. Your GP will only have a plan for COPD and will need the advice of your consultant. I am going now so that you can absorb all of that.xx

[belabbasl in reply to Hidden]

Thank you so much for your explanation.

[Hidden in reply to MelAidJack]

sorry Mel 6% of the population, not one sixth have A1A Antitrypsin Deficiency!

[Hidden]

I felt exactly the same 20+yrs ago, even though I was glad to get a diagnosis at last, rather than not knowing what was making me so ill. But once you have a treatment plan, you can start feeling better & gain control of your bronch, rather than it controlling you. I think of it as a bloody nuisance! Like Hidden I hate that word "suffer", as I refuse to be a victim, but I spend a lot of time & effort managing it, and sometimes (especially when I get some other problem on top) I do get fed up & depressed. But mostly I enjoy life & don't dwell on the bronch. I just deal with it and get on with more important things, and recognise I'm lucky in being able to do that

[MelAidJack]

Thank you for your reply x I think I am confused because I didnt believe I had anything wrong with my lungs, I went to GPs because I thought I had a hernia no one in my family have had a lung problem but it was identified on my scan but theres nothing I can do about it its out of my control, so hopefully i will stop feeling like this once i understand it better and learn how to manage it. thank you for your wise words x

[Hidden in reply to MelAidJack]

Understandably, it's all a bit overwhelming right now, but you will learn to manage it. You're just the same person as you were yesterday, except that now you know what you're up against & can do something about it.

You mention above that you're scared about needing O2 or a ventilator in the future. Well I can assure you I've absolutely no intention of needing either, ever, and really can't see why I should. It's a shame your job brings you into contact with such ill people, but try to remember they have entirely different problems from yours so there's really no comparison.

Also, although consultants always try to find the cause, sometimes they can't. They think the measles + pneumonia I had as a child caused lung damage, and then a series of lung infections led to bronchiectasis - but that's just their best guess, having (for the moment) discounted everything else. They don't really know though!

[Hidden in reply to Hidden]

Well said Hanne62.

[Caspiana]

Hello MelAidJack . Oh you should never, ever apologize for feeling down and glum. You've just been through tests and hospital visits that tire us out no end and have had rather depressing news so of course no one is going to expect you to be all bubbly. It is perfectly natural to feel glum. Have a cup of tea and put your feet up knowing that you have this very good forum to come to anytime for a chat or to vent. Looking forward to hearing more from you. Sending love and light.

Cas xx 🌴🌳

[Hidden]

Don't be sad. Your get up and go will return once your meds have been sorted, and in the meantime I think your body is just saying take it easy for now - it's not forever

[veg58]

Hi,

I fully understand your distress and confusion. I was diagnosed when I was around 47. I think mine came on after a bad chest infection. Despite that I have travelled, I cycle and I continue to work. It does make you tired and it does seem to take longer to get over infections. I went through bouts of depression and lots of "why me".

I guess I have come to realize that we are all vulnerable and it is not a question of "fairness". Nevertheless there will be lots of happy and healthy times ahead for you so try not to dwell on the negative.

[Charliegeorge]

That is how I feel, but days do occur when I can do more,I go overboard with cleaning, then I'm back to square one again, but plod on xx

[inhaler1]

Welcome,

Yes it is very tiring keeping on top of condition.

I find its a constant battle getting people to listen, but once you have got into a routine and have the right medication including rescue pack your energy levels will improve.

Try to get plenty of fresh air and keep away from dust if you can it has taken me years to get a grip of managing the condition but things are changing all the time, I have just seen a new consultant and had more tests which has shown that I have Asthma as well, started a new inhaler which has made a big dirrerence.

This sire is great as here is always someone who can answer questions .

[Shimmysue]

I too was diagnosed with Bronchiectasis ten months ago at the age of 43. After constant chest infections for the last few years and a nasty bout of pneumonia and pleurisy that landed me in hospital I finally got the diagnosis. It all finally made sense why I had felt so unwell for the last few years. I'm on the right combination of medication, breathing exercises and I keep myself fit by going to the gym. The tiredness has never left me but I've learned to cope with it and not overdo it on my good days! I've had to reduce my working days from 5 days to 3 but it gives me the work/life balance to cope with my condition and a young family. I hope you start to feel a bit better soon.

[MelAidJack]

Thank you all for the wonderful advice and support it does help knowing people understand what i am going through x The consultant said he would write to my GP and advice on my treatment? I remember he said I would need antibiotics to be stored at home. Stillstanding63 I dont remember what the bloods were testing for other than cystic fibrosis? and they took 10 samples, he also told me I would get appointment to see physio and another appointment to see him again in 2-3 months time. So probably get results from the bloods then? I need to start thinking positive and stop mopping around, So thank you for listening to me hopefully my next post will be brighter x

[scorpiolass]

Sorry you are feeeling down; I don't have bronchiectasis but I think most of us get glum periods. I think in the post-diagnosis early period we feel worse. It is a shock & we need to accept & get into a routine of living with lung conditions. I hope you feel better soon . Take Care, Margaret x

[MelAidJack in reply to scorpiolass]

Thank you Margaret for your kind words x

[Guillaume123]

Guillaume,

I'm close to 85 and recently diagnosed with bronchiectasis.

I was born with a chest problem and have had chest problems all my life.

The midwife even thought that my mother would not be able to raise me; I am the youngest of eight.

I suppose that I could have had mild bronchiectasis all of my life.

The only debilitating feature is that I now cough up more phlegm than in previous years.

Although the doctor said that I had bronchiectasis he didn't suggest a visit to a specialist. His only comments were that I would have the same state for the rest of my life, and "you're not doing so bad for an 85 year old".

Because I have found a treatment myself for, asthma, osteoarthritis, and night cramp, I shall be looking for some alternative treatment for bronchiectasis. Ipecacuanha appears to offer some hope; I have seen no mention of it as a palliative.

I am a great believer in the need of our bodies for adequate trace elements and try to provide all of the necessary trace elements, and necessary nutrients in the soil of my vegetable patch. I grow a great range of vegetables and fruit; all of the highest nutritional quality.

Guillaume

[Beth1949]

Welcome to this forum! As you can see, you are not alone. You will learn a lot from this forum from other people who have the same condition, which is comforting to know that other people are going thru the same as you.

Last Fall, after feeling so sick for so long, even under a doctor's care, I thought: Am I missing something in my care? In November I came across this website. It has been a blessing.

I learned to 'think outside the box'. From information from this forum: I had my specialist put me on a long term low dosage antibiotic. I take Turmeric (with pepper) that has anti-inflammatory properties, and Manuka honey (antibiotic properties) every day.

This year I have felt better and have done better than the past several years.

Learn as much as you can about your condition and most doctors/specialists are open to suggestions/treatment that you may offer from your findings,

Beth

[MelAidJack in reply to Beth1949]

Thank you Beth I will try the honey x

[B0xermad]

Hi Melaidjack,I feel for you as i also have Bronchiectasis its the mucus build up that makes you feel so lethargic it has taken me two years to get right until you get a bacterial infection.see the hospital respiritory physio for classes and devices to help you through this awkward time as a newbie,It can be managed and you will get back to some degree of yourself much luck to you

[MelAidJack in reply to B0xermad]

Thanks you for taking the time to write it means a lot

[Guillaume123]

Like many others, I find that the comments on this forum are of great help.

Just the fact that many people have been living with bronchiectasis for many years gives me hope. At 85 I surely can't have that many years to have to put up with bronchiectasis. Two other nuisances are that I am close to diabetic and therefore have to be careful taking honey, with its effect of increasing my weight.

Also I suffer from arthritis in my knees, so walking exercise is difficult.

One thing that I am grateful for, I can spend most of the day in the garden in the fresh air. Digging the garden presents little in the way of problems. I live in the country, surrounded by fields, so I have little in the way of problems from city pollution.

Compared to the thousands of other people suffering from bronchiectasis I feel that I am lucky.

Guillaume

[MelAidJack]

Thank you for your reply I think you are very lucky to live in the country side however i would miss the shopping x

[hoping2improve]

It's nice to be able to share experiences and know that we're not on our own. After 2 years of infections on and off. Bronchiectasis and Asthma seem to be in control. On week 3 of no energy and therefore no work, have 2-3 months before I see the consultant again. How do I get this under better control?