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ejh

Posts: 33
From: hampshire
Registered: 10-Feb-2004

scary haemoptysis
Posted: 21-Apr-2004 10:31

Reply

Hi anyone got any experience or advice please.
My daughter (14 pwcf) was doing pe at school about 3 weeks ago when she started to cough up blood and mucus, quite a large amount,frightened the life out of her friends and teacher, fortunately the first aider who was standing in for matron was really good and knew quite a bit about cf. Bleeding stopped by the time we saw our cf doctor and she prescribed 2 weeks cipro. During this time my daughter had 3/4 incidences of more bleeding but much less quantity. Seems to have settled down now. This all happened out of the blue, in fact she only had a clinic appt the day before and everything was great.(typical)!! Subsequent sputum tests have not shown anything nasty. We had to keep changing her physio, normally she does active cycle whilst using a bipap machine. What I'm worried about is what caused it and is it likely to keep happening? Your thoughts please.
jayne

andrewh

Posts: 860
From: South London
Registered: 06-Feb-2004

Re: scary haemoptysis
Posted: 21-Apr-2004 10:54

Reply

Hi Jayne,

Haemoptysis can be a scary thing for someone to go through especially at 14. My understanding is that it's caused by inflamation in the lungs due to infection. This can make a spot in the lung vulnerable to bleeds during an infection and its not uncommon for pwcf to cough up very small specks of blood from time to time. The subsequent 3/4 episodes your daughter had is fairly typical in my own experience.

I had many episodes of this over the years and when it happened had to modify my physio routine. I would cut out the percussion element and not lie flat or tipped and do everything more gently too. I also found sleeping with an extra pillow helped me at night.

It is not easy to predict if it will keep happening, sometimes I went years between episodes. Just monitor the situation with your doctors.

Hope this helped you.

Andrew

softie

Posts: 1,070
From: Croydon, Surrey
Registered: 07-Feb-2004

Re: scary haemoptysis
Posted: 21-Apr-2004 11:37

Reply

I've been fortunate enough to be spared from haemoptysis, but I know it's frightening having seen a few other patients at Brompton get very worried whenever they cough any blood up - even after dozens of episodes! I understand that most pwcf can expect to get at least one such episode, and though frightening they are only very, very rarely dangerous. And I have also heard that the healing process takes time, and it is normal for a person to get a succession of smaller bleeds while things are clearing up.

Is your daughter getting vitamin K (phytomenadione) supplements? All people with CF should be on this, as it is one of the fat-soluble vitamins that we tend to be short of, and Vit. K helps the blood clot properly.

I don't know, but I would guess that coughing up a lot of mucous suggests that maybe one small compartment of a lung had got clogged up more than normal, and so got a local worsening of the inflammation that causes haemoptysis. An x-ray might show where that would be likely to be.

In any case, once she's well healed then more physio won't worsen the chances of getting another, and will help keep things clear and help prevent a repetition.

I hope this is the last time your daughter has to deal with this, and that her health stays good!

Guest

Re: scary haemoptysis
Posted: 21-Apr-2004 13:07

Reply

I agree that it can be very frightening.
I had it for the first time in October 2002 also out of the blue. Then had it again in Feb 2003 and I've not had it since. The episodes didn't last long, but its not pleasant.
I don't know if your daughter has DNase, but I was told to avoid DNase until the blood vessels heal.
I don't think it's always infection that causes it, but also stress. Not that I'm indicating your daughter is stressed, but I always felt better knowing that a few things can cause it and not one specific problem. I guess that by the fact it happened in PE means that there could have small pocket of mucous that shifted somewhere and its why it happened.
Hope this helps and I hope it's a bit of a one off. My health has been no worse due to it, which to me is an important factor.
Take care

Angel

Posts: 491
From: London
Registered: 17-Feb-2004

Re: scary haemoptysis
Posted: 21-Apr-2004 14:46

Reply

heya, looks like lots of good advice has been given already but will add another POV...
Hemoptysis is a regular occurance for me, i have a couple of bleeds a week (fresh blood) and my sputum is always bloodstreaked. it is extremely frightening at first, but small bleeds are not dangerous. and although it can often indicate infection, they have decided with me that since i have it all the time, to pretty much ignore it, unless the amount changes etc. a big bleed, one that should be checked out straight away, is more than 20mls of fresh blood at once. but again dont worry these are rare and i have never had a really big one!
DNase can agravate it, but it depends on the individual, some people find it makes no difference to the bleeding. personally i find the cold DEFINITELY makes it worse, so always wear a scarf over my mouth in winter. also i get the majority of bleeds at night, when i lie down, so always sleep on lots of pillows and make sure my room is warm before i go to bed. thats all i can think of, hope that helps a bit

matt

Posts: 120
From: Jacksdale, Nottinghamshire
Registered: 09-Feb-2004

Re: scary haemoptysis
Posted: 21-Apr-2004 21:16

Reply

Hi Jayne

I too have had haemoptysis, and yes it is extremely scary, i agree with the other Jayne, in that when i look back mine all happened at times of stress, not infection.

I had a major one in september 2002 which scared me as it happened at 3oclock in the morning!

I now this is easy to say but the best thing to do is not panic, if you panic your daughter will pick that up and it may make it worse.

Hope it is along time before it happens again.

Matt

ejh

Posts: 33
From: hampshire
Registered: 10-Feb-2004

Re: scary haemoptysis
Posted: 21-Apr-2004 21:21

Reply

Thanks so much for all your replies. My daughter is on dnase and I must admit I did wonder if it would be wise to carry it on when all this was going on. Unfortunately cf consultant has been away (easter) so have been unable to ask him directly about this problem, also worried as to whether my daughter should do pe for a while but this has been solved for the present as she injured her wrist during the holidays and has to wear a splint/support for 3 weeks!!! (If its not one thing its another!!) As to vitamins she has vit e, vits a&d and multivitiamin - forceval. Everything seems to be ok at present, back on bipap, physio and dnase as usual, but not much exercise as yet. My daughter had lower left lobectomy at 19 months and this area is always a bit of a problem I guess I'm just really worried that this bleed signifies a downward turn. Thanks everyone for your thoughts.
jayne

Guest

Re: scary haemoptysis
Posted: 21-Apr-2004 21:43

Reply

Hello again

When I had heamo on and off I also thought it was the start of things going downhill... but was FULLY reassured by my CF consultant that this wasn't the case. And I asked at LEAST a thousand times. Hope that reassures you too.

Jayne

Koko

Posts: 78
From: West Midlands
Registered: 13-Feb-2004

Re: scary haemoptysis
Posted: 25-Apr-2004 00:04

Reply

I had a massive haemoptysis about 5 years ago - it was 2 weeks before an OFSTED inspection. It was very scary as it was the day after I had come off IVs and I was very upset by the whole thing. I went to A+E and they had no idea what to do with me so sent me home for the weekend. i was seen on Monday and I ended up in hospital having lost a lot of lung function.

My lung function returned to normal after IVs and has improved further since then.

Blood is always scary. It doesn't take much to go a long way either, so it is worse than mucous to look at after the event!

I wouldn't worry too much about it in the long term although short term I know how distressing it can be.

davidsmum

Posts: 4
From: Berkshire
Registered: 14-Dec-2006

Re: scary haemoptysis
Posted: 14-Dec-2006 13:17

Reply

A friend of mine has had this a while and it got worse recently. She's got to have an operation where they seal off the broken blood vessels in her lung. It is done under a local anaesthetic but only when the condition gets really really bad and when people cough up a lot of blood very regularly. It is quite a tricky op as you have to avoid damaging blood vessels to the spine and brain.

She is on some drugs to help coagulate her blood while she is waiting for the op.

mutant

Posts: 5
Registered: 09-Dec-2006

Re: scary haemoptysis
Posted: 15-Dec-2006 01:38

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yea.. as has been said above "a little blood goes a long way" particularly if you cough into a paper tissue ..splat...

overall they call mild haem. as < 5 ml , but that still looks a lot of blood in a paper tissue and most do tend to stop after a while

also its not only peeps with cf who get it ..so try not to worry too much