Copious bleeding from lungs!

[swimmer]

Hi

I have recently been in hospital after a terrifying experience of bringing up copious amounts (about 2 cupfuls) of red, foamy blood. I have bronchiectasis (since 2012) but have NEVER brought up blood at any time before. I had a CT scan but it only showed an exacerbation of the bronchiectasis with a possible pneumonia infection. Am on 200mg doxycycline with a drug clotting medicine - tranexamic acid 300mg daily. Have since stopped the tranexamic acid as was told to do so once the bleeding had ceased. Does anyone have any words of wisdom/advice cos I feel exhausted, breathless and very depressed.....

Thanks as always for 'being there.

Swimmer

[Hidden]

Hi swimmer. I'm so sorry, what a horrible experience. Bleeding fom the lungs can be a feature of bronchiectasis, especially during an exacerbation. I have been lucky in that I haven't had a bleed that bad but I have had small ones. Because they put me on anticoagulants for my AF I had quite a bleed from nowhere and have come off it. The heart doc and my GP are not happy but my bronch expert is very happy.

As it seems that this problem may be a feature of your bronch do make sure that whoever is treating you for the exacerbation and maybe pneumonia ( I have had soooo many radiologists and doctors mistake my bronch on an xray or ct scan for pneumonia) does give you enough of a high enough dose of the right antibiotic for long enough. At least two weeks in bronch. If you feel that it hasn't cleared up do go back. I have never taken doxycyclin so do not know what the dosage should be.

I hope that you are under the care of a bronchiectasis expert, not just a general respiratory consultant. If not, when you come out of this do make sure that you find one.

[swimmer in reply to Hidden]

Hi littlepom

Many thanks for your kind and knowledgeable reply. I didn't realise there were bronchiectasis specialists - I just see a respiratory consultant at my local hospital (about 15 miles away). Will look into seeing if I can get a tertiary referral from my consultant, but am a bit worried that she may feel undermined and I would not want to jeopardise our professional relationship as she has been fantastic in trying to help me. I will run it by her and see how she responds.

Thanks again

swimmer

[Hidden in reply to swimmer]

Hi swimmer. You don't say whether the respiratory consultant was involved during your bleeding episode or if she has yet to be told about it. In my experience, unless you are actually haemorrhaging, all of them, bronch experts included, make quite light of it. They tend to be more concerned about the infection which has caused the bleed, which is absolutely right. I know that being diplomatic and getting the right treatment is very difficult, especially when you don't know yourself what treatment you need. I hope that you are seeing your con soon to discuss the onward plan for getting on top of this infection ( exacerbation) and preventing others. She should then tell your GP what the plan is a Dow to treat you. Good luck

[swimmer in reply to Hidden]

Hi again littlepom

I did not see my usual consultant when I was admitted to A & E. I was driving when my mouth filled with blood and was desperately trying to avoid an accident and ended up swallowing a load of the red stuff... euck... As I was only a couple of miles from the nearest ED, I managed to drive (whilst swallowing and wiping - not to be recommended...) until I reached the hospital where I was immediately trollyed into Majors. I saw one of the resp consultants the following morning (so the team know about the incidents), but not the Consultant that I see regularly. My GP sent her an email though detailing everything and |I have an appointment to see her second week of November. So I am hopeful...

Thanks again for your kindness

Best wishes

swimmer

[Hidden in reply to swimmer]

How absolutely awful and scary for you. It's something I dread. I had a friend with bronch who had been quite a 'bleeder' when she was younger. Once at a bus stop when she was with her children! As she got older and with good treatment for her bronch and exacerbations they stopped happening. She was a very lively lady and lived until she was 80. Even then it wasn't because the bronch got her but because she was in hospital having IVs and was sick in her sleep. They didn't realise until she had choked on it! so there is hope for us yet.

I hope that your con can help with your management so that it doesn't happen again.Very rapid and aggressive treatment of exacerbations needed I reckon.

[cofdrop-UK]

Really sorry to hear this Swimmer - haemoptysis is always very scary.

I echo littlepom's comments.

I guess your 200 mg would be taken as 100mg twice a day - that's a normal dose for BE.

It all gets very complicated doesn't it when you have to throw other medications for other conditions into the mix.

I'm sure I don't need to tell you you have to be your own advocate but sometimes we need a prod to fight our corner when we feel so unwell.

Hope you improve very soon.

love cx

[swimmer in reply to cofdrop-UK]

Hi again cofdrop

Thanks again for replying to my 'call for help'.

Having spent 4 days in hospital and seeing how stretched all the staff seem to be - pushing the limits of human capability in order to give each patient professional and compassionate care, I am reluctant to ask for anything TBH. It's difficult to imagine any of the medics being able to do more - I just don't think it's humanly possible... (I live in an area where there is a very high proportion of elderly residents, who have complex and chronic health needs.)

However, it would appear that my latest symptoms are exceptional and, therefore, require exceptional effort .... starting with my own.

Thanks and kind regards

swimmer

[Fennella02]

That must have been very scary - poor you. As someone who suffers from chronic severe anemia, can I suggest that you keep an eye on your hemaglobin as this may contribute to your weak, shaky feeling.

Hope you feel better soon. Clare xx

[swimmer in reply to Fennella02]

Hi Clare

Thanks so much for your response to my post. Next time I see my doc, I will ask him to check for haemoglobin levels. In the meantime, I guess I could eat lots of iron rich foods - wouldn't hurt, I guess.

Best wishes

swimmer