I would appreciate some advice.

[astragal]

Good morning everyone. I hope you had a good Christmas.

Ironically the thing I had been fearing happened on Christmas Day. I began to bring up blood about an egg cup full. I have just completed a course of clarithromycin ,so thought that would deal with any infection.

Previously I have had small amounts of blood, teaspoon or so for a few days , but antibiotics usually have settled it. Maybe a coincidence.

The bleeding seems to be more frequent and lasting longer. But Wednesday was the most yet. I went to A and E in an ambulance . They were pretty disinterested, took bloods, x Ray and listened to my lungs. I was sent home later with a prescription for Tranexamic acid, 500mg three times a day. Of course chemists were closed, I don’t drive so had to tour around in a Taxi looking for one.

My timing is impeccable. In the end got medication yesterday afternoon, I have taken second dose this morning. Yesterday there were just a few little blobs of blood, but this morning there was about a tablespoon again.

I generally don’t have much mucus, the Bipap overnight seems to loosen stuff.

I have had four infections since July, usually given Amoxicillin or clarithromycin. What l hand in sputum samples, with whatever small amount I can manage, but they never seem to show anything.

I have asked to see a bronchiectasis specialist, even gave some names, but not getting anywhere.

My weight dropped to 34kg, which doesn’t help.

Sorry for long miserable post, but I am feeling so anxious all the time, afraid to move almost in case bleeding starts and doesn’t stop.

Wishing you all the very best and hope you have a happy new year.

[sassy59]

Hello astragal, how awful for you to be going through this. You do need to see a bronch specialist. I’m sure someone with more knowledge will be on soon but any worries, please dial 999 and get help. Make them listen to you.

Hoping for a better new year. Xxxx

[astragal in reply to sassy59]

Hello sassy

Thank you for your reply. I will persist with the GP to see a bronch specialist.

Hope you have a good New year and that next year is kind to you . x

[Spacecat1 in reply to astragal]

Keep pushing your gp. They can easily forget. Hopefully they will sort out your problems. Happy new year x

[Reading4everyone]

Hi Astragal, you really are having a tough time. It must have been scary for you losing so much blood. Did the docs explain why this is happening in order to put your mind at rest? Hope things settle soon. Best wishes Marlene

[astragal in reply to Reading4everyone]

Hello Marlene

Thank you for your reply. I was and still am pretty scared, the mind conjures up all kinds of horrible things. They weren’t terribly clear in A and E, they kept calling it Copd as well, despite me telling them bronchiectasis.

They said it was possibly blood vessels or an ulcer in lungs rupturing . I asked about CT scan but they brushed that off.

I will see if my GP can help at all.

Hope you have a good New year and that next year is kind to you.

Liz. x

[Tia4209 in reply to astragal]

Did they do any blood tests eg D dimer elevated levels would probably make them do a CT scan.

[astragal in reply to Tia4209]

Hello Tia

They did do blood tests but it was so hectic and the doctors kept changing over so I never thought to ask about the D dimer levels. Thank you for mentioning that, I will see if I can find out.

Hope you have a good New year and that next year is kind to you.

[Tia4209 in reply to astragal]

Hi again

It always seems to be something they do not think off. Maybe your GP will have a copy of the tests they carried out. I hope you can get an answer to the cause it must be very distressing. If they have not done the D dimer personally I would ask to have it done Do you have other symptoms?

[astragal in reply to Tia4209]

Hello Tia

I shall ask the GP if he has access to the blood results as it would be useful to know. Since joining the group I am learning so much more about this condition. I am so grateful for the advice, information and wise words.

Knowing what to ask and look for makes such a difference.

I will ask about the d dimer and request it if it hasn’t been done.

My symptoms vary I don’t tend to get the usual signs of infection, raised temperature, coughing more, mucus colour or consistency change.

I am generally fairly breathless, don’t bring up much mucus usually mainly morning and it’s always a dark yellow to green shade. The blood has been my main sign to start antibiotics, but I think maybe it was coincidental, I’m not sure.

Somehow I have managed to create a shopping list of various other conditions

Which is kind of ironic as a teetotal, non smoking, vegetarian who was a long distance runner for years.

I am not too sure what is happening inside, but I think there is a bit of an inter organ war going on and they take it in turns to fight back.

Maybe some day they will arrange a truce and live together in harmony.

Many thanks again.

[Oshgosh in reply to astragal]

It’s really hectic in A N E .you need to speak to your GP

[Damon1864 Volunteer]

Hello astragal, I had a lovely Christmas thank you, hope you enjoyed yours. Please don't let anyone deter you from seeking medical advice, if you are worried please call the NHS helpline sand get their advice. But if you are really worried call an ambulance you shouldn't have to be worrying over this. I hope this helps, have a really lovely day and take care of yourself 😊 Bernadette xx

[astragal in reply to Damon1864]

Hello Bernadette

Thank you for your reply. I have called the GP to see if they can perhaps pass me on to a bronchiectasis specialist. Unfortunately I had a series of bad experiences in the local hospital. Some quite serious. But the ambulance always takes me there.

I am hoping to move so I have a better local hospital, which would be reassuring.

Hope you have a good New year and that next year is kind to you.

Best wishes. Liz x

[Bkin]

Hi Liz,

so sorry for your ordeal over Christmas and you had to go to A&E and cruise by taxi for an open chemist. Its the worst when feeling unwell, living on your own and having to get stuff for yourself, my doc always says haven't you got anyone to go and fetch things for you or take your specimen sample in or drive you, I think they automatically assume there must be someone who can, but in reality there are many people where this is just not the case.

I do hope you are feeling better soon, I would keep pushing to see a specialist respiratory consultant at the very least, especially as you've had so many infections since July and your standard antibiotics are not clearing infections successfully.

I did say to my doctor when ABs were not working for me, I think I need another Anti biotic as my emergency pack med and I think a one week or 10 day dose is just not enough.

My emergency pack AB med now is Doxycycline for 2 weeks. I think if you can get to the specialist they can advise what the best AB is for you and the duration, if you may need a maintenance dose etc. I don't think GPs can really advise as well as a specialising consultant, also you could ask for a CT scan while you wait to see the specialist which can both save time for the consultant and depending on results speed up the process.

Have a stash of sterile sputum sample pots at home and when you get a good sample first thing in the morning, phone the doc for the paperwork and drop sample off before mid day at surgery so it can be tested. Taxi if you are unwell.

The best way is to try and get a sample in before taking the AB as the AB can halt the activity of the bugs and that can be why the tests don't reveal anything when they come back.

The other thing you can do if its a holiday or weekend or even if you can't get to see your doc quickly phone the 111 service and let them decide things: nhs.uk/using-the-nhs/nhs-se...

Wishing you all the very best for good health in 2020. Feel better soon. x

[astragal in reply to Bkin]

Hello Bkin

Thank you for your very good advice, I was thinking of asking for a different antibiotic that covers staph aureus. As I have read that this bacteria is often responsible for Hemoptysis. So I will try that.

I sent a request to the GP earlier today to be referred to the Royal Brompton. So hopefully that might be possible.

You are right indeed, when you live alone and don’t have other options it isn’t always easy to access things or get places at short notice. I wish I had learned to drive years ago, but living in Edinburgh everything was so accessible.

Then after I got married my husband was the driver, he was a car fanatic, especially classic cars and 1950s American.

I never realised how important a vehicle was until I didn’t have one and was living in a small village.

I hope you have a good New year and that next year treats you well .

Liz x

[Bkin in reply to astragal]

Thanks Liz, I drive but when unwell I usually take a taxi. x x Good you have got the action in the works, hope you don't have to wait too long to see a specialist.

[Damon1864 Volunteer]

Hope you have a very happy new year and that's it's better than this year. Have a good night and take care of yourself 😊 Bernadette xx

[Ergendl]

Hope things start to improve for you now, astragal.

[watergazer]

Oh dear astragal- I hope you're on the mend by now. What a sorry state of affairs. Be very persistent. x