I've been meaning to write a post for a few weeks now but couldn't bring myself to for a while with everything going on but after seeing how great the community is on here I think it would be good for me to share what is going on and hear from people who can shed some light on a things.
I'm 23 years old and have been struggling with my health for a few years now. I've had asthma since being hospitalised with bronchiolitis when an infant but until 2016 this had never caused a real issue. In 2016 I battled with near constant chest infections (I think I had around 12 lots of antibiotics and 3 lots of steroids) and got positive sputum samples for haemophilus influenzae and pseudomonas. However, after receiving a 2nd vaccination for haemophilus influenzae, I received clear results for both bugs. In January this year after getting a whacking chest infection needing antibiotics and steroids I've had a positive result for pseudomonas again and not felt well since, although after searching the posts on here I don't think pseudomonas ever really went away!
Even when feeling well (which is rare at the moment) I am constantly coughing stuff off my lungs and always feel like I have a chest infection and as soon as I get tired and my immunity drops I get really ill again. I've recently been passed over to a new respiratory consultant who is finally going to try and get to the bottom of things rather than just giving out antibiotics. At my last hospital appointment I had various bloods taken to check for cystic fibrosis and a chest x-ray with a CT scan pending. I also have an immunology appointment coming up in April. I had the sweat test as a baby to test for CF but the consultant wants to rule it out as a possibility. He was saying he thinks it sounds like it could be bronchiectasis. However he did say there was also the possibility it could be something immunology related because after the 2nd HIB vaccine I was well for a good 7-8 months so will be interesting to see if I have built up a resistance to the bug.
So currently I'm just waiting for the results from everything but after searching on here most of my symptoms seems to point towards bronchiectasis and pseudomonas which seem to come hand in hand. I have other health issues on top of this with spondylolithesis in my L5 S1 and an anaphylactic nut allergy and finding it hard to stay positive because of all the scary information out there. I'm just finding myself getting upset and really worried about the future. I'm an active person (own a horse) and nearly finished my primary ed degree so I'm extremely concerned my health might stop me from my hobby and my future career. I'd just love to hear from people who can offer information on living with bronchiectasis and pseudomonas because the great unknown is a bit daunting at the moment!
Sorry for the essay. Didn't realise how long this would end up when I started!
Jess
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JNagle123
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Hello Jess, and welcome to the group. I'm sorry that I can't help on this occasion, but I'm sure that someone will be along soon who can give you the benefit of their experience. Wishing you well. XXX
Hi Jess, the CT scan will tell them a lot, sounds like you should have had one a while back. If it is Bronchiectasis and I stress If as it might not be, but if that's the case then you can get the right treatment, breathing exercises and a rescue pack of meds. Once they know exactly what's causing your problems they can have a plan for you and that will help immensely.
Ensure you have a respiratory physio for the breathing exercises as it's all about clearing your lungs daily.
Lots of people on here have had these conditions for many years and live a long and quality life, so I'm sure you can carry on with your hobbies and live you life. It's all about getting the right treatment so you can get on with your life.
Good luck, I'm sure things will improve for you when they get to the bottom of the cause.
Thank you for your message. Definitely helped reassure me that things aren't as bleak as they seemed at first! Hopefully I won't wait too long for the CT scan as it sounds like that should get to the bottom of things.
I'll post an update when I know what the cause is x
I can't reply fully now Jess but this is a link to a helpful booklet about bronchiectasis. See if it rings any bells. chss.org.uk/documents/2013/...
Welcome Jess. I hope the ongoing investigations give you and the doctors caring for you, all the answers you need for you to live that life you planned, teaching and riding.
Hi Jess I’m 52 and just been diagnosed with bronchiectasis ans pseudomonas and no you can’t always get rid of it, I can’t. It took a year for them to diagnose me with a CT scan because I pushed it as was told over and over it’s only a chest infection as I’m a severe asthmatic. I was diagnosed in January just sonits a new diagnosis and however old you are it’s scary as I’m active too, but where I live there is a service called OPAT at the hospital and they can prescribe antibiotics orally or IV. I had to have mine IV in the end and I’m still not stabilised and may have to have more but the main thing is I feel better knowing what it is and how to manage it. Wait until you know for sure. I live a normal life, I work and yes I get tired more but then I’m older than you! 😊 it’s not a life sentence you can live with it very normally it’s as others have said too it’s the management of it. Good luck and take care Michaela x
I can relate on the doctors constantly blaming asthma! It's taken a good two years to finally start getting answers to things. Yes I can imagine whatever age you get the diagnosis it's never easy but as you say knowing what is it means you know how to manage it - hopefully I get a diagnosis before long! So reassured that you still manage to live a normal life. I was definitely scared it was a life sentence haha. Thank you, hope you manage to get yours stabilised soon x
Hi Jess, You are having a bad time with your chest problems . I am 76 this month and like you when I was a child I had one infection after the other, If it’s any encouragement to you the last flare up of asthma I had was when I was 20 . It just went away and I enjoyed my life until 3 years ago when as part of my work I inhaled a very fine wood dust and was shocked when the doctor informed me that I had COPD. Had never heard of it before! Just as an observation you mentioned that you have a horse . I love horses but when grooming dust comes of them and also if you feed it hay the dust of it is well known to be a trigger for asthma. JJust in case . Hope like me you grow out of it. Regards.
Hi thank you for your message. That's really reassuring that you hadn't had a flare up for so long until a few years ago! Yes thinking about it there is so much dust down the yard with my horse. I've been riding since I was 4 and only started having issues with my chest in the past few years. Hopefully my horse isn't the cause although it probably isn't helping my chest now x
Hi Jess. You've had a rough time of it. I've had lung problems all my life too, initially severe asthma & pneumonias & then diagnosed with bronchiectasis at 43. They think I probably had it before that though. I'm so glad you've been referred to a proactive consultant, who is arranging a CT scan, investigating you for CF, and referring you to an immunologist. These are all crucial in reaching an accurate diagnosis, without which you can't move forward. If it is bronchiectasis, I want to reassure you this is very manageable and you'll still be able to live a normal life. Those of us here who've had it for decades, or since childhood in some cases, have still had successful careers, travelled, brought up families & so on.
If it is bronch, you'll be given a medication regime tailored to you, and also instructed in how to keep your lungs clear of mucus with daily physiotherapy (this is the most important thing you can do to keep lung infections at bay.) You'll then have regular check-ups to monitor your condition and deal with any complications as they arise (eg, the pseudomonas.) Even if you're colonised with pseudo, it's controllable with oral ciprofloxacin or nebulised antibiotics. I've been nebulising colomycin for it for about 10yrs and have only had a couple of flare-ups. Some people with CF have been nebulising colomycin nearly all their lives.
Your main task is to keep lung infections at bay, so you stay well and avoid further lung damage. You need to eat & sleep well, get lots of exercise, and be obsessive about hand hygiene (eg not touching doorknobs in shops - pull your sleeve over your hand.) I think Crankshaft makes a good point about horses, all that dust is terribly bad for your lungs. I'd love a pet, but am very allergic to anything furry or hairy - dogs, cats and in fact horses too - so it's a no-no. I realise parting with your horse would be a wrench, & may not be necessary, but you need to find out whether it's causing some of your problems.
Don't google - too much scary & inaccurate information out there. Stick to reputable UK websites eg NHS, Patient, BLF etc. BLF has a great telephone helpline where you can chat to knowledgeable people about your lung condition - 03000 030 555
Many of us are testament to having good, happy lives with bronchiectasis, and you will too. You need to get a diagnosis, learn how to control & manage your condition, put some work into the physiotherapy, and then get on with your life. Don't panic
ps just an idea - could you wear a mask when you're spending time with your horse?
Hi thank you for spending the time to type out all this message!
Yes, I'm really pleased I'm finally being taken seriously. For ages the doctor was trying to convince me my coughing was all down to acid reflux and I was absolutely convinced it wasn't! Think he got sick of seeing me eventually and referred me to a respiratory consultant. I'm glad you've mentioned travelling and families as they were big future concerns of mine!
I'm going to look into seeing a physiotherapist to learn daily physio exercises that I can do to help get the mucus up. At the moment I'm finding inhalations with oregano, eucalyptus or peppermint help loosen it but it never seems to clear it completely.
I'm already turning obsessive about hand hygiene but I find working in primary schools so hard to try and avoid germs. As my dad says little kids are poisonous haha!
I'm actually a very allergic person so what you say about animals does make a lot of sense. My IGE is over 200 I think. I used to be seriously allergic to horses (face swelled up, rashes, the lot!) but my mum took me to see an immunologist when young and he said I'd build up a resistance if I kept having contact with them. The past 10 years I've had no noticeable allergy issues or needed antihistamines. The point about dust is very valid because doing haynets and mucking out can churn out a huge amount of dust so might need to rethink how I do these in the future! My horse is a huge part of my life so hopefully he isn't the cause of things.
Thank you again for the message. I'll post an update when I get a diagnosis x
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