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Thread: Dad is coughing up black lumps of blood, awaiting results, absolutely terrified.

  1. #1
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    Oct 2017
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    Dad is coughing up blood, awaiting results, absolutely terrified.

    Hi all,


    My dad has Alpha 1 lung disease, a nasty disease that makes his lungs fill with fluid and it will eventually kill him. He has about 3-5 years left. He's 67.

    For 3 months, every week or two he coughs up small black clumps of blood. His shortness of breath (hopefully from his COPD) is so bad he has to lie down after climbing the stairs. He can walk miles if it's flat, up, no.

    He managed to get in at his docs and they urgently referred him, today he has a a CT scan and on Tuesday he will have camera into the lungs.

    The consultant said I don't think it's cancer, as you have no other symptoms whatsoever. No weight loss, no chest pain, no night sweats, nothing, he feels fine in himself apart from the cough and shortness of breath. She said she has a list of things she has to rule out, it could be asbestos related, which is also terrifying. I am hoping and praying it's just his COPD.

    I have lost the plot today.

    Does anyone have any experience? Or reassurance? Can't say anything here as don't want to worry my son

    Help :'(
    Last edited by JValentine; 12-05-21 at 22:21.

  2. #2
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    Re: Dad is coughing up black lumps of blood, awaiting results, absolutely terrified.

    Sorry to hear of this awful worry, I think it might be really hard to find anyone with experience of this exact situation as it seems very individual based on your Dad's health. Clearly he has things that do have to be ruled out, so its only really the medics who can help with finding out the cause and they who can give you accurate and realistic information. I know its terrifically hard waiting on these hospital tests and being in the dark about the cause of your Dad's symptoms, which are clearly not normal and must be concerning for you. How old is your son ? Most children can hear things like this in an age-appropriate way, tailored to their level of understanding. I just wonder if it would be easier for you to not have to 'keep things in'. The facts are that your Dad is having some tests done to find out what is causing his problem, the worries about cancer are worries you have only at the moment, so your boy wouldn't need to know those. If your Dad does need treatment then for most children its easier to hear things as they go along sequentially, and process them bit by bit rather than have to face it all in one go. If it turns out to be nothing of concern after all the tests, then he was honestly communicated with and sees the positive end result, if it is something that needs treatment then he can then hear about that.

    I know a little about COPD as have worked with a few people with it, so I know that coughing blood can be a less common symptom of the lung condition, but of course it can also be from other problems so it is really good that the medics are working at checking everything out. In situations like this, no amount of fear or worrying will make any difference and the best thing you can do is to reiterate to yourself that no matter what the outcome is, there are good medical teams who will treat anything diagnosed. You can and will face it, hopefully the 'it' will just be the COPD, or a chest infection, but even if the 'it' was something else as a family you will be strong enough to deal with it. Terror is something that strikes when you are in the dark (emotionally) and have no answers, once there are answers and plans terror diminishes and people get on with anything that needs to be done. What I'm trying to say is that the waiting and thinking now will be the worst part for you, over the next few days, and things don't stay at this fear level.

  3. #3
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    Re: Dad is coughing up black lumps of blood, awaiting results, absolutely terrified.

    Hello there,


    Thank you so so much for your lovely reply.

    My son is 16. He lost a Nan to cancer a couple of years ago.

    My Dad is feeling much more positive after being so well looked after by the top lung surgeon at our hospital.

    I completely understand and agree that children will take things better bit by bit than rather in one go. He knows his grandads lungs are worse and he is seeing specialists. I will keep him informed, I just don't want to cause him any unnecessary worry, I desperately don't want him to end up like me :(

    The consultant said 'I am going to eliminate all these things it could be and give you a much better quality of life I sincerely hope that is the case.

    I have been through family members with cancer and their deaths.

    I know I can come through anything, I just really don't want to lose my dad yet. But that's not even set in stone yet is it!

    Thank you so much xx

  4. #4
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    Re: Dad is coughing up black lumps of blood, awaiting results, absolutely terrified.

    He knows his grandads lungs are worse and he is seeing specialists. I will keep him informed, I just don't want to cause him any unnecessary worry
    Oh thats good then, he knows, I thought you'd kept it all from him. Then all you need to do is talk in facts, and the 'knowns', not the unknowns - but I guess at 16 if he asks more detailed questions then you will need to be honest without being panicky. The consultant sounds great, and you have the relief of knowing that your Dad is in good hands and they will give him all care possible for the remaining years of his life. Come Tuesday you will know a little better what is happening, and as you say you will get through no matter what. I do apologise, I just re-read your original post and for some reason I didn't connect with the 'Alpha 1' lung condition - I've just looked it up and see that it is terminal, but its a case of managing it as well as possible for the remainder of life. Does COPD come from the Alpha 1 ? I'm sorry I really have nothing that is particularly helpful to say, but as someone who lost her father this year from years of a terminal illness, I know how hard it is waiting, watching and worrying all the time.

  5. #5
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    Re: Dad is coughing up black lumps of blood, awaiting results, absolutely terrified.

    I hope you don't find this patronising, and I should think almost certainly you are in touch with this UK body, but wondering if they might be able to give more support and advice that you need ?

    https://www.alpha1.uk/

  6. #6
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    Re: Dad is coughing up black lumps of blood, awaiting results, absolutely terrified.

    Hi

    Yes Alpha 1 Antitrypsin deficiency causes chronic COPD. Shortness of breath etc. His mother effectively drowned in her own lungs. Its hereditary, I am the eldest of 4 children and luckily, we did not inherit it. Our mothers genes saved us!


    Yes I often frequent the Alpha 1 site thank you, my dad sticks his head in the sand! 2 of his sisters have/had it, and some of my cousins inherited it also. We are in our 30s. Very unfair. Not patronising

    Just praying and hoping for good news.

    I certainly feel better about it now. Thank you x

  7. #7
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    Re: Dad is coughing up black lumps of blood, awaiting results, absolutely terrified.

    Well, I'm not sure I've done anything much to help, except I hope you don't feel as alone. I will check in on any updates you make and am always happy to carry on talking on here. Your family have been through a lot with so many affected, a horrific genetic condition such as this is a big burden to carry for the sufferer and the family unaffected. I will be hoping for the best news possible for you also. Take it easy, this is understandable anxiety, its based on real events and real fears, be kind to yourself and feel whatever you need to feel - cry, be angry, be upset, be hopeful - make space to think and do some relaxation techniques.

  8. #8
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    Re: Dad is coughing up black lumps of blood, awaiting results, absolutely terrified.

    Thank you ❤

    I will update. I appreciate you taking the time to reply x

  9. #9
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    Re: Dad is coughing up black lumps of blood, awaiting results, absolutely terrified.

    I can't add anything at all helpful here..Just wanted to say that I admire your bravery and strength in dealing with what must be a horrendously worrying situation.

    Waiting for results is the worst bit, as Carys says. Please keep writing on here if it helps you in any small way.

    I hope your Dad is comfortable and reassured by being under the top lung doctor who wants to do his very best for him.

    Hoping for some better news today. Please look after yourself.

  10. #10
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    Re: Dad is coughing up black lumps of blood, awaiting results, absolutely terrified.

    Quote Originally Posted by pulisa View Post
    I can't add anything at all helpful here..Just wanted to say that I admire your bravery and strength in dealing with what must be a horrendously worrying situation.

    Waiting for results is the worst bit, as Carys says. Please keep writing on here if it helps you in any small way.

    I hope your Dad is comfortable and reassured by being under the top lung doctor who wants to do his very best for him.

    Hoping for some better news today. Please look after yourself.
    Good morning,

    Many thanks for your kind message.

    I feel better about the whole thing this morning. Trying to be rational and not waste my days waiting full of anxiety unable to function!

    I will update when I know more.

    Huge thanks x

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