Has anyone had an embolisation for Haemoptysis?
If you're happy to could you share your experience?
Many thanks
Embolisation: Has anyone had an... - Lung Conditions C...
Embolisation
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Yess1e
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Hi Yess1e
I haven’t had embolisation but could have sometime . I too would love to hear from someone who had
My lungs bleed regularly & I find it very difficult to cope with . Most people have never heard of it . How do you cope ?
Hi Jk1957, thanks for replying. Gosh that's awful for you. My bleeding is caused by anything that increases my blood pressure or swimming or lying on my back to click my spine etc. I pulled a mattress upstairs (with great effort) but only say 12 steps and started coughing up clots of fresh blood. Then my lungs hurt for a few days after. I've got two bacterial infections in there apparently but, not sure how to clear that up.
I find it really scary to be honest and feel lonely with it as like you, not many people see have it. It makes me anxious. Do they know what causes yours?
Hi Yess1e
Mine is caused by bronchiectasis which I’ve had since getting whooping cough or measles as a child . For years I was prone to infections & then when I was about 35 I started to get lung bleeds .
They have increased but they settle . I’m 66 now . My consultant feels it’s best to treat with antibiotics & rest
I have had occasion IV antibiotics
I’m for & can walk walk daily etc but get many flare ups it’s a lonely condition for sure
Thank you for reply & I wish you well
HiI had Hodgkins Lymphoma and radiation/chemo as a child. Not sure why my Bronciectasis began, but it was during 2020. I'd always had infection prone lungs, if I got a cold etc. They think they've located a possible artery for the bleeding. But I'm worried my lungs are as they called it 'fried' from radiation. Does your bleeding restrict what you can do, like lifting heavier things, stretching, swimming etc?
I was making sure I walk and things and was pretty active in terms of general life bits (not active like gym and running) but I've got a heart rhythm thing going on for two weeks, so that's adding to the scary.
Thanks again for replying. Wishing you as well as can be too.
Hi Yess1e
Like you I am restricted what I can do . Just walking but not too much
When I’m well I manage 10,000 steps a day over a few walks . Hills kill me & I wouldn’t be able for gyms or swimming or any fitness classes
Heavy lifting or even standing on my feet too long can bring on a bleed . I really have to pace myself now & planning beyond day to day is out as I’ve had to cancel out last minute due to a bleed too often
When my lungs bleed only thing that helps is to lie down & almost complete rest , sometimes to even put a foot on the floor can start it off again or turn in the bed . It’s an awful disease to live with & good to talk to anyone who understands as we are few & far between
Today is a good day for me so I am meeting friends for a coffee . We have to keep going for our mental health .
All the best & good to talk to anyone who understands . I would love to keep in touch & see how you get on with embolisation as it may be down the road for me also
Best of luck to you & yours
Hi Yess1eI am sorry to hear about your Haemoptysis and possible embolization.
I have had ongoing lung bleeds for 4 months now with ongoing antibiotics and tranexamic acid which halts the bleed temporarily but then starts again. I've recently been hospitalised with this problem and embolisation was discussed. However they have not put me forward as the consultant said my bronchial artery was too thin and it wouldn't be successful. I hope you have a successful experience and would love to hear how you get on. Wishing you the very best of luck xx
Hi Metal-legs, gosh I'm sorry to hear about your bleeding, it's horrible. What have they suggested next for you? They can't leave you having bleeds surely?
I'll def let you know how I get on, I've two bacterial infections to sort out before they'll do it. They said I'd need to speak to a radiographer about it and what method. I've read that if they use beads they can migrate and cause paralysis! So that's pretty terrifying. I'd love the bleeds to stop though and be able to do normal activities and lift things etc. I really hope yours settles down and you get the care you need. X
Thank you for your understanding and support. I am on a continuous cycle of antibiotics and tranexamic acid but I have another assessment coming up so I hope there is a better plan.I've read about the beads causing paralysis too, that's a huge risk? Have they offered you any other alternatives? Also do you mind me asking what triggers your bleeds and how often it happens..? It's such a difficult situation to deal with.
I hope you can clear the two infections. Sending you positive thoughts and support.
Of course, I just wish none of us were in this situation. My lungs bleed at random sometimes, but if I lie on the floor bend my knees and lean in to click my back, so sometimes lying flat in a harder surface. If I swim, if I lift heavy things, intimacy shall we say, it used to happen if I cried, it doesn't always happen now if I cry, but I never know when it will. My Mum died a few weeks ago and so that's been even harder.
I'm also having cardiac issues and ectopic beats so I'm pretty scared/anxious by all these things at the mo.
They said I'd have to clear my infections (though also said maybe I could leave them if I'm not feeling so ill with them) before a referral to radiology for the Embolisation. I'd have liked to talk options, I hear there's a coil and stent, foam and the beads, unless the beads are in the foam. That all sounds horrendous frankly.
It is really tricky. I hope they are forthcoming with ideas to help you. Woods you mind sharing here any thoughts, suggestions and info if they give you any?
I'll do the same when I get a chance.
Thank you loads for the positive vibes. I send them to you too. X
