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
Gosh I'm sorry yours is so bad. I feel the same and I'm very happy to hear you're having a good day and seeing friends. Yes, I'd love to keep in touch. X
Hi Jk1957 I was wondering how you were getting on? As we said before, we seem to be a bit of a rare bunch, so I just thought I'd see how you were. I've no updates yet, I have had more bleeds, I could feel my blood pressure go up which was odd and then it started, it was a bit of stressful conversation at the time, so I don't understand why it caused all that. I hope you're as well as you can be. X
Hi Yess1e
Thank you for keeping in touch . I actually have a bleed at moment . I feel when my lungs / breathing get very tired it’s inevitable my lungs bleed .
This is so hard to monitor as we all get tired so easily . I’m going from infection to infection also & may need an IV soon It’s a most debilitating disease & no real medical solutions available
I am registered to join via zoom with annual European lung foundation bronchiectasis conference this Saturday to hear the latest research etc on the disease
Many thanks for keeping in touch
Oh no, I'm so sorry to hear that. It's just awful, I'm hoping to start nebulising Colomycin and see if that helps with the infections and reduces the bleeding, but they're in no rush. It' quite debilitating. Meanwhile I'm getting really de-conditioned as I just sit all day. I'm attending that conference too. It'll be interesting to see what they say. Maybe we can share thoughts...
I really really hope things settle down for you and you find some support. X
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.
Hi Metal-legs I was wondering how you're getting on? I also wondered how helpful you find the Tranexamic acid, do you take it constantly to try and stop any bleeding happening, what dose? I replied to your previous questions but it might not have let you know. I hope you're as well as you can be.
Hi Yess1eThank you so much for your message and asking how I'm getting on. Well, good news I've had no more bleeds since last November. I just take the tranexamic acid when there is a bleed for a week. I am still very nervous clearing mucus as It's such a relief when it is yellow and not bright red . I have been told it will happen again when infection rears up. It's not a nice prospect.
How are you getting on, have you managed to clear your infections and any more news on the dreaded embolization? I read you had another bleed 3 months ago, it is so frightening. Let me know how you coping.
Best wishes xx
Hi Metal-legs oh that is good to hear! I'd say what a relief but I can imagine it's on your mind, especially as you say when you're clearing your chest. I find it's such an anxiety inducing condition. I had a random bleed last Wednesday and managed to stem it by calming down as much as I could (it was a slightly heated conversation and I felt my blood pressure randomly spike and had thumping heart, very odd) and when it felt safe I opened the door and got myself cold to hope that my vessels all were less dilated due to the cold. Then course I'm coughing up blood for a 4 or 5 days and still have some with the green. I think I have a mild infection at the moment, but I'm trundling along, very breathless and run down though. It really doesn't help having to worry about bleeding and not being able to lift anything or feel more carefree.
No more news re emobilization, I find that so scary. My rheumatologist suggested I try a low dose Tranexamic acid constantly for a while. I worry about all medications and side effects. But I think he's train of thought was so I can do more and that the blood should clot and not be a bleed. These things all sound like sticky plasters and not longer term plans. The next thing is to try nebulising Colomycin (I think that's how you spell it) and see if that keeps infection down and calms bleeding. I'm just amazed one of the main hospitals for lungs in the UK isn't more helpful/proactive. I've had to ask for all of these things.
Sorry, I sound a right moaner. I'm so please to hear no bleeds since November for you though, long may that continue!
Thanks for messaging and updating me. I do appreciate it as it's quite a lonely condition at times. XX
I'd put a specimen in Yess1e and start rescue pack - lung infection clears up quicker treating it early x
Thanks Patk1 I'm not sur eif it's my normal. I seem to always have some green sputum and the hospital aren't remotely bothered or interested, so I think I'll try and ride it out and I'll take some if it progresses. I totally understand what you mean about treating it early but I've had so many antibiotic courses, it's made me pretty unwell too. I am tempted to start the 3x per week Azithromycin and see how I fair, it's meant to be more effective that Colomycin and has anti-inflammatory properties...
I hope things are as good as can be with you. X
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
IPHi Jk1957 and Metal-legs how are you both? I had another large bleed yesterday afternoon and had to call an ambulance. It's so frightening that amount of blood and not being sure it'll stop. It did stop pouring up and out after 35 mins and then was just slowly bleeding into my lungs making them rattle etc. I've had a fever all night, I guess from blood having been in my lungs? I've called the hospital team to see what they say.Sorry for the multiple questions:
How bad are your bleeds, how long do they take to stop?
Any progress for either of you re further help?
I'm still so surprised they just leave you like it.
I've not been given tranxemic acid, how quickly does is work?
Do you know where you're bleeding from?
Best wishes to you both
X
