Haven’t posted in a while but I would love a friendly reply as I’m feeling very sorry for myself!
Have had 3 weeks of hacking cough, no energy, shortness of breath, no sleep whatsoever, and two lots of antibiotics and steroids haven’t done a thing.
I’m utterly fed up. Even more so I now find myself admitted into the hospital. I was trying to treat myself at home so this wouldn’t happen, but alas! It has.
My question is; where do I go from here? I’m 37 years of age, yet I worryingly feel like sometimes this is how I’m going to die. I’m struggling more and more to fight these off. They called me brittle asthmatic for the first time yesterday.
I feel I need to go back to a resp consultant.
What do you guys think?
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Barbie999
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They have only ever said asthma. They always pump me full of steroids and antibiotics but they have stopped working now, and I’m struggling to fight off infection. I’m worried.
You are already in the right place, no doubt they are trying to pin down which bacteria yo have and looking for the right antibiotic with which will kill it off. Hard to be a patient, patient when feeling yucky. You will get through this and back home soon.
Sorry to hear you’re so poorly Barbie but I would suggest they get a respiratory doctor round while you’re in the hospital. You need to be checked over properly now and where better place to be for that to happen.
Wishing you well and do let us know how you get on. Xxxxx
Thank you guys for your replies. I’ve been suffering since I was 3 years old and normally I just take it in my stride, but this time I just feel utterly low, and feel like I will never be myself again.
They are coming to do the ward round at 8 so I will hopefully speak to someone then if they can spare me two mins!
Thanks again x
When you get home go to your GP and INSIST on a referral to a respiratory consultant. What on earth has your GP been doing! You should at least have been under the care of an asthma consultant since childhood and now it seems as though there is something else in the mix. Long standing asthma often develops bronchiectasis. You need an xray and ct scan interpreted by an expert to find out what is going on.
There is no point in hoping that you are going to end up in the care of a resp cobsultant from this hospital stay. Their interest is in getting you on your feet and getting you out of there. Very rarely do they follow this up with transferring you to a respiratory clinic.
Your GP has been totally derelict in their duty of care towards you and should get off their backside.
You are very young and need to get your treatment and management on track with someone who knows what they are talking about so that you can lead a full and active life.
I’m afraid that if we sit around hoping for doctors to do the right thing they will simply do nothing. We have to be very proactive in our own interests and vociferous in getting the right care. Look on the internet for a good consultant locally who specialises in asthma and general respiratory conditions. Take the name to your GP and do not take no for an answer.
Yes! I agree. I believe this is more than just asthma now. They have even had me on a copd drug for a few years yet no real information or diagnosis or even tests!!!
I hate it because I’m not a pushy person but I agree you have to be as doctors don’t really give two hoots!
If all else fails I may have to go down the private route, even though I’m very pro nhs, sometimes you have to just do it.
On a brighter note, I have a dear friend who was in your position with brittle asthma until she managed to find a decent consultant who knew what he was looking at. She was treated in Birmingham. She keeps pretty well now, and is very active in the music world. She is almost 76! Littlepom is quite right, research a decent consultant and insist on a referral. Your GP has no right to refuse as it is your legal entitlement. I do hope you get this sorted out, feeling ill all the time is no fun, and hospitals are very tedious, especially when you get back to the beginning of the menu once more. Many blessings, and I hope you can resolve your problems once and for all xxx
Hi barbie999. I really feel for you, hospitals are pants !! It sounds like that from your very first diagnosis the medical proffesionals have let you down, but now you have to try and ask for what you want and need, the lovely and very knowledgable people on here will give you advice on what to ask for, have you someone who could be with you when you see the docs in case you dont feel well enough to engage with them? I hope you feel well soon. Hugs and much love xxx burs xxx
Hi Barbie999 just thought I’d say hello. I know how difficult it can be to be in hospital with no answers and recurrent infections. I’m about to be 37, and it’s horrible feeling like you should have lots of energy but just being ill. After my last hospital visit and going under a different resp consultant it still took nearly 2 years to get my asthma properly under control. I do find it easier having someone with me when I go to my appointments, it is hard to fight when you’re ill and tired. Also I always go prepared with my book detailing what’s happened recently and all
my questions. I get it out at the start of the appointment and it often sets the tone letting the dr know I’m prepared, engaged and and not to be fobbed off! I also often ask the same question again on the next appt if I wasn’t happy with the answer first time. really hope you get a resp consultant to take you on, for me it’s made all the difference and I’d ask every dr (however junior) at every opportunity while you’re in hospital see one. I’ve found GP referrals are a lot slower than consultant to consultant. I really hope you start feeling better and get the help you need and deserve xx
Thank you all. You have all made me feel much less alone. Here’s to the modern day world hey!?
Doc said it’s brittle asthma. Keeping me on antibiotics, back to back nebs, steroids and have to stay in for another two days! Oh my god. I will go nuts in here.
Good morning I’m sorry to hear your feeling so poorly ☹️, I hope they get you the right treatment and your nasty cough clears up and you get proper on going treatment from a specialist dr. Sending hugs 🤗 get better soon 🌹🌹
I am so, so sorry you are poorly and in hospital. Everyone has given you excellent advice so I just want to send you loads of love and a big *HUG*. Please hang in there.
Hi Barbie, sorry to hear of you situation. Hope they are giving you intravenous anti biotics and steroids if there is a need as you are in hospital.
Yes definitely ask for referral back to the respiratory consultant, give the British Lung Foundation helpline a call when you are feeling up to it see what they say.
You need to be able to manage things so any help and advice from the consultant and respiratory nurses at the hospital will be a good idea. Start making your list of questions. Have a pad by the bed and write them down when you think of them.
Hi so sorry to hear that you aren't well, I hope things improve for you soon. Please try to stay positive and t smiling you are only young and have a lot of life left in you. You are a really special person who is loved and cared about very much. If ever you need to talk please don't hesitate to contact me, even if it's just for a rant I'm good listener. You take care of yourself, 😊 Bernadette xx
You certainly need to become your own health advocate, and that is difficult when suffering from the disease you are advocating for. We tend to rely on doctors. Antibiotics and steroids seem to be usual approach to respiratory issues copd related. Viruses and mycoplasms (fungi) are not treated with antibiotics, only bacteria. And these antibiotics tend to kill off good flora in your intestine that is part of body's immune system. Perhaps check into alternative therapies, herbal or Chinese, that also destroy pathogens. I have also found thyme tea to be soothing and help clear throat and lungs.
Resp nurse came round - she said about the CT when I said I get the same lobe of my long continually infected and I’m sob just walking up stairs etc whether or not this happens I’m not sure. She also said about allergy testing again, as I haven’t had this done since I was a child, and also spirometery - again.
One thing that does worry me though is could I have caught whooping cough again from one of my patients? I had it four years ago - it took three months to go, and I am not vaccinated. Thoughts anyone ?? X
Dont know about whooping cough, but yes it can reoccur i think u can get a vaccine at any age, ask the dr.
You can go on your local hospitals website and look up the.consultants, there should be a short bio about what they specialise in. You have every right to ask to see a specific one.
Have the hospital offered a ct scan to see exactly what is going on? You are in the best place to ask for one at the moment and also to be seen by a respiratory physician .
get H2O2 therapy going . its amazing . I've been reading up on it for months and finally got some . on my 3 day I noticed I was breathi.g from the bottom of my lungs again ..for the first time in decades it didn't hurt to take a breath and my allergies were all gone. I started it for something else and didn't think it through about my lung health but it makes sense . anyway it needs to be.food grade and 35% using only a drop three times a.day increasing a drop a day until 25 days at 25 drops and then back off it same way . I'm only on day 10 but I'm sure glad I tried this . very effective and my.lungs today feel amazing. you must educate yourself on this well before jumping in to it though . just Google search it and watch the videos and read the studies . it's the best kept secret . itll fix you right up .. it did me.
Aww Barbie999 what a nightmare of a time your having .. keep asking question after question even if you thing there daft still ask them .. huge hugs xx
So bit of an update. Ok so doc just come back to me
She spoke to the consultant who stated he thinks what it all sounds like is definitely “brittle asthma” and has decided to start me on a prophylactic antibiotic azythromycin Mon wed fri
And referring me to resp clinic as an outpatient
Won’t be going home until peak flow is up to about 80%
She is hoping for me tomorrow though however I’ve not responded to steroids or the antibiotics hence trying the new treatment x
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and have to stay in for another two days! Oh my god. I will go nuts in here. 
Oxygen?
How do you cope with your diagnosis?
feeling very doen
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