Dad is coughing up black lumps of 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 :'(

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.

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

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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

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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.

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/

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

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.

Thank you ❤

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

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.

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Originally Posted by pulisa

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.

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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

Hiyer,

Its funny you've reminded me of myself as I'm quite like you nowadays with my response to things - I didn't used to be in my younger years. I now go through a day of fear, panic and terror about certain important and serious things, then process it during that terror and feel 'settled'. I don't mean that I'm happy about a situation, but it doesn't consume me and I am accepting in a way I wasn't able to many years ago. Accepting is an easier place to be, and certainly for me I can't reach that without doing through the 'being terrified', if that makes sense. Anyway, glad you are coping ok today :)

I'm the same, Carys..It's almost as if you make peace with the "being terrified" bit, make a plan as to how to manage it and carry on having confronted the fear and accepted it.

We all have our "ways"...Hoping that your dad has had a better day and is stable.

Morning both,


Thank you.

He hasn't heard from his consultant and she said if anything nasty was found she would call him immediately. He had the CT on Tuesday and it take 1-2 days so we are hoping and praying that no news is good news and she doesn't call today.

I was fine all day yesterday but found my heart racing all night and I'm sat at work now and my heart rate is 120!

Like subconscious anxiety?!

Trying to calm it down.

Will keep you posted xx

Thinking of you; hope it all works out as well as possible.

I'm not surprised that you're on high alert. Try not to monitor your heart rate though..you just don't need the hassle.

I'm sure his CT will have been fasttracked by the radiographers to the consultant for assessment. It's horrible when you are wanting the phone NOT to ring. It will be a long day..Being at work may help to distract you a bit though.

Good luck for today and here's hoping that there's no phone call.

Thank you both so much.

We think she would have called Tuesday afternoon. I know in the past when there has been a problem I have been contacted on same day. She said she would call immediately but hasn't.

Today he has received a follow up appointment for 18th May. Just hoping its a routine follow up??! They wouldn't make him wait this long if it was bad bad news??

Thanks so much for messaging x

Oh its so hard, trying to analyse and second-guess the NHS system. At their end its just admin, letters and formalities/appointment making and all the known facts, at the end of the worried patient/family every single second has meaning or potential meaning. 18th May does seem a long time to wait if it's something really urgent doesn't it, and I would be thinking the same as you, and the fact that there has been no 'immediate call', however, really it would be nice to hear something wouldn't it so you could stop analysing and know the facts. Is there no contact that he/you have to call or email ?

As for your heart rate - thats nothing, its to be expected and stress and adrenaline are designed to do that. I've fallen down the 'checking heart rate trap' far too many times in my life, and sometimes still do, but I tell you this is won't go down to normal rates until I stop checking it and sometimes that can take a long time - days. (120 isn't that high anyway)

Morning,

Thanks for your reply.

I have turned the HR monitor off on my fitbit lol. That will definitely help, and doing my actual job 😅

He has her secretary's number but doesn't want to call, he said they would have called by now. He's not bothered in the slightest. Or so he tells me!

Huge thanks xx

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I have turned the HR monitor off on my fitbit lol. That will definitely help, and doing my actual job ��

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Ah yes, this is the reason I don't have a fitbit, my family have offered one as a present, as they have had them for years, and then the implications were realised.....:roflmao: I tell you what too - I can honestly just think about my heart being fast for it to be fast. I once tested it with a heart app.

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He has her secretary's number but doesn't want to call, he said they would have called by now.

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Ahhhaaa, yes, I see.....well, heres the thing....hes not the only one affected is he. Would he call just to put your mind at rest or let you call ? He's more than likely right, and many people would be doing the same as him; its either a choice for 'blissful' ignorance, or head in sand and not wanting to confront, or genuinely thinks its ok. Its tough on you though. Its a difficult one isn't it, to deal with, as its his body and his health.

Thanks Carys.

Yes he's very headstrong, a man's man and I won't push him. I'll just try to let it all go again. 😊

He has to self isolate from Saturday ready for his camera into the lungs on Tuesday.

Poor thing, sounds so awful.

Xx

I'm sure he would have heard by now directly from the consultant..I heard within 2 days of mine and it was normal!! Put the fear of God into me though when I saw the call was from the hospital!:D

I think you should let him decide as to what he wants to do if anything re ringing her. He may be quite happy to accept that no call means no worst case scenario. I know that I would think this and wouldn't want to tempt fate by ringing.

He sounds like a very brave man who is dealing with a hell of a lot.

Hope your day is progressing as steadily as possible and that you are coping at work xx

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I'll just try to let it all go again. ��

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Yes, I think thats for the best, his choice :) The one thing that most people want, particularly when dealing with life-limiting illnesses, is autonomy.

Hi both,


Thank you, yes I won't push him. I just said "you know you can call the secretary and ask?" And he said I'd have heard by now. So that's that lol.

My day is going much better now, thank you 😊 x

Good to hear that. He is right about any potential call. He doesn't want you to make him doubt his judgement on this x

Hi guys,

Just a quick update to say there is no update!

Still no word from his consultant or anyone else. He has his covid test tomorrow and will isolate till his camera on Tuesday.

Will update when I know anything!

Surely no news is good news!!! ❤

I'm pretty sure it IS good news! I'm very relieved for you and I hope this means you can let down your anxiety guard just a little and relax over the weekend?

He's obviously got more tests to come but at least there is no bad news from the CT which is significant xx

Well, I spoke to soon.

Dad rung and said the consultant called him today.

She started by saying "now there's nothing to worry about, but your scan shows there's something not quite right. So you are having your bronchoscopy on Tuesday, then I'll bring your appointment forward a week rather than the 18th" she went onto talk about drugs he can have to clear the fluid etc.

What do I make of this?! He reiterated he does not want any of his children to worry and assures me She said not to worry.

What do you think guys?

I said, why didn't you ask what she thought it was?! But he's not like me. I said we're all on tenterhooks here.

I'm not sure what to make of it?

She has brought his appointment forward a week but said not to worry?

Cripes :(

She won't say not to worry then drop the C bomb surely?!

Well it's obvious that something's not quite right. I think anyone would worry if they were told they had cancer so nothing to worry about means that nothing very bad has shown up. Maybe she's had a think and can prescribe better meds to clear the fluids? The 11th May is still 2 weeks away-that's a long time for someone with a very urgent problem.

Would she actually deliver really bad news on the phone? I don't think so. I think she would tell him in person. She hasn't.

Hi there x

Thank you.

Oh yes, his lungs are in a terrible state. I just desperately don't want him to have to battle Lung C as well as copd.

That's what I was wondering, surely it would be face to face but then she did bring appointment forward, eek.

Just keep telling myself if it was cancer she wouldn't say 'nothing to worry about!'

I'm hoping that bringing his follow up appointment (as they called it) forward is just to sort his poor lungs out. She did say once she has eliminated these awful things she will start on the good drugs!

If it was the big C, I think she would be talking about dealing immediately with that rather than giving him a better quality of life as she says. She was talking about specific drugs to break it all up in there.

Thanks for responding, it really helps me xxx

How frustrating for you ! You know that if you'd have had that conversation you'd have never come off the phone without asking questions.

Do you definitely believe that she did say 'nothing to worry about', and he is being accurate ? If he is trustworthy in that sense, as some people can and would say that to NOT worry their children and try to be 'kind', then I agree that she surely wouldn't have said that if it was 'C' she thought was a possibility. Surely not.

There may be something there, something going on, well clearly there is - but I think all you can do is go with this statement

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I'm hoping that bringing his follow up appointment (as they called it) forward is just to sort his poor lungs out.

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Just from my personal experience, they didn't pull any punches. I always say, "It's not cancer until they say it it's cancer". That said, my doctors told me flat out they suspected it, thus the additional testing and appointments with specialists. Again, based on my personal experience, if I were told not to worry, I would have breathed a sigh of relief.

FMP

Hi FMP,


Thank you for replying. Exactly, can't see it being malignant if she said not to worry.

I have spoken to my mum and she said if it looked like cancer she would have said straight up, it could be serious, I need you to come in etc. He has a bronchoscopy booked which was booked from his appointment on Tuesday. She needs it done to eliminate xyz

And then she goes on to talk about a specific drug to help his alpha 1, can't see her doing that if it was cancer, that would be the immediate treatment, surely?


Hi Carys,

I actually said to him "you're not saying not to worry rather than the doc?" and he said no, no way. He's as straight as they come and hates liers so I can't see him lying to me.

Thanks again xx

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I actually said to him "you're not saying not to worry rather than the doc?" and he said no, no way. He's as straight as they come and hates liers so I can't see him lying to me.

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Excellent, then I think you can presume at this point that the 'something' isn't the 'C something' that you fear.

The consultant wants to treat his alpha 1 as best she can and as quickly as possible. There has been no mention of an oncology referral.

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Originally Posted by JValentine

Hi FMP,


Thank you for replying. Exactly, can't see it being malignant if she said not to worry.

I have spoken to my mum and she said if it looked like cancer she would have said straight up, it could be serious, I need you to come in etc. He has a bronchoscopy booked which was booked from his appointment on Tuesday. She needs it done to eliminate xyz

And then she goes on to talk about a specific drug to help his alpha 1, can't see her doing that if it was cancer, that would be the immediate treatment, surely?

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Exactly.... That's not to say that his illness hasn't progressed, but cancer? As long as he's had these issues, they would have been up front. As my GP said to me when I complained about the number of prescription meds I'm on for my physical issues... 'just be thankful we live in a time where a little pill can prolong and improve our quality of life'.

Let's hope one more 'little pill' can address the current issues and improve and prolong his life ;)

FMP

Hi both,

Thank you, yes she did not mention an oncology referral whatsoever.

I know his lungs are in a bad way, but she has promised him a better quality of life once cancer has been ruled out. She does specialise in lung cancer (as well as other areas) and would have seen it plain as day on ct scan.

She isn't in the business of hiding diagnoses I'd imagine! :)

I will be SO BLOOMIN RELIEVED once I hear the all clear. :)

Thanks guys for talking to me. You don't know how much I appreciate it x

Thanks FMP

Oh yes, he disease has progressed definitely. But he's been relying on inhalers and needs a step up in care now.

Thank you, I really hope that too ❤

Hi all,


Little update.

Dad had his bronchoscopy today, he didn't want sedation so it was really quite unpleasant bless him.

Any who, the doctor (who was another lung consultant there) said have you been told your ct scan results, not really he said, so she said you have signs of emphysema (obviously) and shadowing on the lungs. So we need to rule out cancer, as his other doctor said.

She started the procedure and took 6 biopsies, she wanted to take a lot as it will give her much better view of the state of his lungs. She moved down deeper and said I want to check something? (He couldn't remember what) and she checked and said she was happy with that. They said he was a model patient.

She then said she will have the results of these biopsies on Thursday and will meet with his other consultant to discuss and plan what they are going to do and the other consultant will meet him on Tuesday.

She then went on to say you can bring someone with you on Tuesday as 4 ears are better than 2.

Christ alive. 😞😞😞

My mum had shadows on the lungs and terrified her saying it could be cancer, turned out it was emphysema. But that was off only a CT Scan. I know lots of people who have had shadows on lungs and been fine.

Any ideas what this all means guys?

I know he needs a treatment plan for his alpha 1. But letting him bring his partner? 😭

Dad watched it on the screen and said he didn't see any lumps of any sort. Not that he's a doctor of course.

I have been in a terrible state all day and not feeling much better now!