Hi everyone my first post and I really need advice. I have bronchiectasis. New illness for me been ok ish until this year.Had chest infection which basically wasn't manged properly and resulted in me ending up in a +e dept coughing up lots and lots of blood.
However 5 times this has happened with me being sent home with antibiotics again and again awaiting ct scans. In the meanwhile I am terrified. No one seems overly worried about the vast amounts of blood I cough up.
Can anyone tell me have you experienced this. I am so scared. I live on a knife edge waiting for ct and wondering when the next lot is going to come. Will this stop?
Would really appreciate advice.
Thank you.
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Pianolady_1
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Hello and welcome. Coughing some blood is not unknown (though I don't know anything about bronchiectasis). It can be caused by a burst blood vessel. Are you on anticoagulants or blood thinners? That would make it worse. However, lots and lots of blood sounds alarming. When is your CT scan? I'm really sorry to know you're going through such a worrying time. Hopefully the scan will give you some answers.
Yes. It's very scary especially when I feel I'm just being ignored. I'm don't know when ct scan is. I keep ringing to chase and I'm getting nowhere. I spend all day in a e just to be sent home saying it's a bronchiectasis flare up. I just have to belive surely they wouldn't send me home if it was life threatening.... But I'm getting very low and I'm very scared. I feel list and really don't know what to do to hurry up things. I obviously need meds but they won't give to me without scan. I'm very confused.
Hello Pianolady. There are several of us on here who have been living with and managing bronch for most of our lives. 66 years in my case. We will do our best to help and support you.
You do not say if you are normally under the care of a bronchiectasis specialist or whether your GP or a general respiratory consultant have been trying to manage it. Also, were you diagnosed originally by ct scan and are waiting for another one to find out why you keep having the bleeds.
Bleeds are not uncommon in bronchiectasis. As we are all different some have quite a few, and some hardly anything. They can also be a sign of an unresolved exacerbation.
Are you taking an anti coagulant? I had to stop taking them because they caused bleeds from my lungs.
A&E is not the best place to get help for bronch. The doctors whom you come up against there, in common with most GPs and general respiratory consultants have next to no knowledge of bronchiectasis. They are not trained in it and have no experience of it.
It certainly sounds as though your bronchiectasis is not being managed properly. If you have a bronch specialist give their secretary a call and ask them to tell your consultant that you need help now.
I suspect that you do not have a bronch specialist. If this is the case look on the internet for one in your area. They are usually at big teaching hospitals. Take the name to your GP and insist on a referral. Don’t take no for an answer. Be very frank with your GP and tell them that your bronch is not being managed properly and now needs specialist help to prevent it getting worse.
I’m afraid that we have to be very firm in our own interests and vociferous in sourcing the right treatment.
You shouldn’t need to go private to get specialist bronch help. However, maybe they can transfer you to their NHS clinic. With bronch the costs of ongoing tests and meds can be prohibitive.
It sounds as though the abs you have been given are the wrong ones in the wrong dose etc.
Hopefully this specialist can reassure you and set you on the right track.
Sorry you are not well. Did anyone take a Sputum sample? It occurred to me that if you have been on antibiotics for a month without improvement then maybe you are not on the right one. I hope you get the right help soon.
I think u are right and I think all the advice abd support I've had, i now understand that I really need this appmt with the specialist to come urgently.
My bronchiectasis is not being managed and I'm going down hill fast, so I need to get assertive!! 😁
Hard when you feel yuk but I will.
Just hoping these antibiotics I'm on now do some good.
Yes one sputum was taken 4weeks ago, antibiotics changed to suit but only gave me 7 days shld had 14 so guess what,.. Once I finished it all started again 😥
So bit of a battle at mo but with all you marvelous folk out there it's giving me a strength that I really need.
Missy scarlet is right,I eventually rang my consultants secretary after 18 months of a nasty bug in my lung .Explained what dosage and antibiotics I’d been on ,she promptly emailed my bronch specialist and I have an appointment on Tuesday.My consultant also emailed my dr and upped my dosage of doxycycline temporarily until I see him next week.I think sometimes we just put up with things and don’t want to become nuisances but unfortunately we are in control of our own bodies and we know how ill we feel at times,again I’m fairly new to all this as was only diagnosed 2 years ago .Good Luck
You are right. I feel that ive got to start to take control instead of always accepting what is told to me.
I'm going to start to ask more questions instead of being a 'yes ok ' patient.
This episode has left me very scared but I want to say to everyone just in the short time I have been talking to you all, I'm getting a strength from you all.
Oh I know it’s so overwhelming at first .I went into a state of panic but thanks to the amazing people on this site I would’ve suffered in silence.As they say it’s good to talk!
Excellent advice from Missyscarlet. I agree you are probably on the wrong antibiotic or being given the wrong dose. I would ask your GP to send a mucus sample to the lab in the meantime, so that they and you will know what bacteria you are growing and what it is sensitive to.
OMG a little blood goes a long way and after a lifetime of bronch I can honestly say on the odd occasions when I cough up blood I find it scary. There are many reasons for coughing up blood, many are not serious but that is not to say they need to be taking this more serious.
I hope you get to see a respiratory consultant with a special interest in cf/bronchiectasis very soon and they start the treatment you deserve. Don’t give up - be you own advocate.
Hi and welcome to the site, I don't know anything about your condition so can't comment. But I would certainly go and see your GP and get some advice. Hope you get the answers you need and please keep posting. You take care of yourself and have a good day 😊 Bernadette xx
Just to wish you all the best, it is hard to be assertive when feeling so unwell and vulnerable but I agree it is essential. Hope you get access to the right practitioner very soon.
Sounds awful & very frightening Pianolady, hopefully you're feeling a little more peaceful today.
From what you describe it's as if the infections never completely clear up, maybe the wrong antibiotic or not enough or like me you may need combination antibiotics.
That's the 2 I am prescribed. Your problems sound long standing so I hope you've been prescribed plenty. If you feel no better coming to the end of the course get on the case quickly.
Hi Pianolady_1 . I have a different condition from yours but I just wanted to say hang in . And talk to us here often. You aren't alone. 😁 Thinking of you,
A musous sample is a good idea, GP can prescribe dose of prednisolone and either Clarithromycin or co-amoxyclav ( if Amoxcillin not clearing, depending on the results. If you have lots of blood then you may need a camera down throat so they can see what is going on, and not just some burst capillaries due to coughing. These are worst case scenarios tho, so do not be alarmed.Bleeds are not uncommon in bronchiectasis and leads to slightly more lung scarring as a result.
I've had Bronchiectasis for 10 years or so. There is a chance that you have developed Pseudomonas and this is the reason for the blood. Ask if there's any sign of this. I hope you have seen a physio re how to remove the mucus that builds up. This is very important. Even so, I am coughing blood at the moment and it's not uncommon occasionally. If you have Pseudomonas you will probably need a specific antibiotic to deal with that, maybe just through the winter months or even year round. It's certainly a learning process! Take care and good luck.
I will defo ask. Thankyou for replying. It's a big help. 👍
Hope u feel better. Take care.
😀
I have bronchiectasis. You've had lots of good advice in the comments already. The mainstay for treatment is antibiotics (sometimes multiple, ideally to treat whatever is identified in your sputum sample), steroids and mucus clearance. ABs should be for 14 days but I've found that recommendation isn't necessarily in the crib sheets doctors use so remind them. Your consultant should refer you to a respiratory physio to teach you drainage techniques to help you clear the mucus. A CT scan is the tool to diagnose bronchiectasis. Coughing blood isn't usually a problem but you need to let your team know when it happens.
You really have to be your own advocate with this disease, many doctors / consultants don't understand it. You need a GP and consultant who do understand it and don't be frightened of changing until you get there.
This disease really sucks, when it's bad it's really bad. Battling through a flare is one thing but I find the hardest part is managing other peoples expectations of what I can / can't do when I'm ill especially as it becomes an extended period.
Once you are in control and over this latest flare you will have good times and feel great again. You will get over this once you are on the right treatment, hang in there.
There is a 'Bronchiectasis Support' group on this site too.
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