seeking other bleeders.

[astragal]

Good morning everyone.

Sorry in advance for being so miserable. The bleeding is more or less daily whether it’s a tinge or spoonfuls. I have been told it’s just part of bronchiectasis for me, which is fine for the doctors to say but they don’t have to deal with it. I wake up afraid of what might come up. This morning there has been a couple of spoonfuls of clotted blood, so far. I do try to be strong and optimistic, but I am finding the feeling of sadness and hopelessness overwhelming.

Please I would appreciate it if others would share their experiences of regular bleeding . My mind goes to dark places, when the blood comes up I sometimes wonder if this is it. I did have a ct scan last week, so will see what comes of that.

Anyway, take care, best wishes.

Liz

[Hacienda]

Hi Hun, Sorry to hear this, You will have your results of CT Scan soon, They will determine why. I had lots of Nose Bleeds due to the Cannula for my Oxygen.( Now only Occasionally). In the early days before Diagnosis, I would be forever Coughing with Bronchitis and Bringing up Blood, I was told it was because I was wrenching so hard I had damaged the Lining of my thorax. I was eventually Diagnosed with Emphysema COPD. With all the Meds etc., I no longer Cough & Today I have Dry Lungs. I wish you Good results, take the Professional Advice & Meds offered. Best Wishes. C. XXX

[astragal in reply to Hacienda]

Thank you Hacienda

I appreciate your support. We will see if the bronchiectasis has got any worse on this ct. I use a Bipap due to co2 retention, I was wondering if that might be partly drying things out. I will indeed follow any advice given . They still haven’t decided about long term antibiotics, so maybe that will be another option.

Take care and be safe

Liz. x

[Hacienda in reply to astragal]

Hi Again Liz, The Long Term Antibiotics are Azithromycin 3 time a week, Mon/Wed/Fri. They protect from Infection, They have worked for me, Been taking them for about 4 years. I don't use a Bipap, as I am on Oxygen all night with a 1 to 2 ltr flow.(16/12 Hours), I am a CD Retainer, waiting now for Oxygen Nurses to come and do an Assessment for this. I wish you the Best of Results and keep us Updated . Love & Hugs. C. XXXX

[astragal in reply to Hacienda]

Hi Hacienda

It does seem Azithromycin is quite often the one they prefer to prescribe. it’s good to know it has been effective for you and for 4 years. Anything that helps is definitely worth a try. I hope the assessment goes well. Thanks again for your support.

Take care . A big hug back.

Liz x

[Hidden]

Two questions. Have you seen a bronch specialist about the continual bleeding. Do you take an anti coagulant or warfarin?

[astragal in reply to Hidden]

Hi

Yes I finally managed to see a bronch specialist, 3 weeks ago at the Brompton . He did bloods, fev, listened to my chest. He wanted to ensure I had good lung clearance, I saw their physio who went through the process with active bleeding, I can’t use any aids as they might aggravate the bleeding. I will be reviewed in April .

I don’t take anticoagulant, in fact I take a k2 supplement and a diet high in k1.

Maybe there will be some clue in this latest ct.

take care and thanks for your reply.

Liz

[Hidden in reply to astragal]

You are seeing the right people in the right place. I am sure that the bleeding is very depressing and tedious but as long as the expert isn’t worried, that should be a comfort. As you say, hopefully the ct will show up the cause. Do keep us up to date.

[annienell]

No need to apologise for sharing how you're feeling Liz. We're here to listen, and support I hope. I'm so sorry to hear how worried you are. I don't have bronchiectasis so can't help with any experience of this, but can imagine how frightening it is for you. I do hope some of our very knowledgeable members will be along soon with their usual good advice.

[astragal in reply to annienell]

Hi Annienell

Thank you for replying, yes there are very knowledgeable and kind people here, I have found valuable advice and comfort in this forum.

[Splodge60]

Hello Astragal

After two and a half years of bleeding everyday I really do understand how you feel. The docs have no idea of the cause of it. As I have lung, liver and lots of other major diagnoses, to which they add something else, every time I see one of them, I am amazed I am still here. This week I’ve been put on Vit D3 and Folic Acid after some abnormal blood results. Who knows what happens next. I am assuming your bleeding itself is not actually painful, just worrying. If so, and if you can, try to get the help you need but also try not to dwell on the problem because you are only adding to your suffering and this could go on a long time, as it has with me. Find something which you enjoy doing and focus on that more. Meanwhile, ask your GP to do a full blood screening on you. They have now found anaemia plus this D3 deficiency. Hopefully if you are the same, you will get appropriate treatment for the symptoms whilst they also seek out the cause and good luck xx

[astragal in reply to Splodge60]

Hi Splodge

Thank you so much for sharing your experience. I am sorry you have so much to cope with. I live in isolation mainly, some might say hiding. I watch tv and escape into books on the iPad. These do offer a bit of diversion.

As you say who knows what happens next.

I have had full bloods done recently when I saw the consultant at the Brompton 3 weeks ago, but no follow up until April.

I take 2000mg of d3 daily plus a bunch of other minerals etc, mainly for my osteoporosis, scoliosis and kyphosis.

I hope the d3 and folic acid works for you . I have taken Floradix in the past which is a natural supplement with iron , I don’t know if it would be suitable and beneficial for you.

I know some medication can interact with herbal and vitamins etc.

Thank you very much again and good luck to you too.

Take care

Liz x

[Damon1864 Volunteer]

Hi Liz I hope your scan comes back with good news for you, like others my nose used to bleed because of my cannula but has stopped now. But I must admit I was worried when it happened, please let us know how things go and good luck. Have a lovely day and take care of yourself 😊 Bernadette xx

[astragal]

Hi Bernadette

Thank you for your reply and good wishes. I appreciate that.

I will indeed let you know how things go.

Take care and best wishes.

Liz x

[Caspiana]

Hi Liz, 🌷

I'm sorry to read this. I'm afraid I can't really help but I hope this is a winter occurance and hopefully in warmer , better weather things will improve for you. Take care.

Cas xx 🦋

[astragal in reply to Caspiana]

Hi Caspiana

Thank you for your reply, indeed you never know perhaps the summer will improve it. I hope things are going well with you.

Take care and best wishes.

Liz x

[RoadRunner44]

Oh you must be so worried Liz. I can't offer any suggestions as I don't bring up any blood. Take comfort from the fact you are seeing a consultant soon. Make a list of questions you want answers to and try and take someone with you when you go. It is always useful to have a friend or family member come with you as it gives you confidence as well as being another pair of ears to pick up information. Hope the appointment goes well and you can relax a little chrys

[astragal in reply to RoadRunner44]

Thank you for your reply, Chrys. I agree it is a good idea to have someone with you at an appointment, I find I forget to ask something or don’t take it all in as I get anxious. Hopefully once they have the scan and other results they may have a better idea of what can be done.

Thanks and take care.

[Ern007]

I am a bleeder but not every day, but don't know why. I have Emphysema as well as assorted other complaints. More to the point I don't have " bronchiectasis" as Far as I Know] - Last year from August I had two X RAYs, " CT SCANS and one PET SCAN.. I stared with a shadow of left Apex and it has moved also to right. But, I now have to wait until June for another CT scan with a follow up with Lung Specialist 2nd July...... As for the bleeding it seems they don't think it is important, at first they seems to care about the blood (Not as bad as you describe) - So god knows what I have got, I don't and not sure anyone else does.

Point of post is never mind never apologise for being "miserable" - Who would not be and many on this board have been there.

I know that "dark place" you speak of, been there many times but hey, I always come out.

Keep your "optimism" - Tonight even at my age gonna play TR on PS2 and have a few drinks - I hope I am correct saying this - bleeding is a part of having " bronchiectasis" - Coughing up the red stuff is horrible I know..

Also do you take blood thinner like rivaroxaban or the old fashioned warfarin' - I take the former and wonder what than tablet played in my bleeds.

Anyway good luck and hope your CT Scan results put your mind at rest and never worry about opening up, we are good listeners on here and at times we post for advice..

[astragal in reply to Ern007]

Hi Ern

Thank you for your reply. I hope your next scan is better news. That’s the thing with these chronic lung conditions there is no predictably.

I will do my best to try to be positive, the many wonderful inspirational people on this forum do give me hope .

Good for you using the Ps2, I just about worked out how to use my laptop. Hope you enjoy it.

I don’t take a blood thinner, but I imagine they could easily make it more likely .

Thank you for your kind words. I hope things go well for you too.

Take care and best wishes

Liz

[esther333]

Wishing you well Liz, you will know more when you get your results.

[astragal in reply to esther333]

Hi Esther

Thank you for your good wishes. I will indeed update with any results.

Take care .