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Repost : My Experience with Hemoptysis and How I deal

NOTE: I have received about 10 emails over the past month and a few more since I have been in hospital asking all type of questions in relation to hemoptysis. Unfortunately being in hospital I don’t have the time where I can really sit down and answer your emails…So I thought  it wise to bring back this post about Hemoptysis for a Second run. It was originally posted about 3 months ago.

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I thought I may as well share my experiences with hemoptysis ( bleeding of the lungs) since its a daily occurrence for me just like taking enzymes.

First a quick definition

Hemoptysis or haemoptysis is the expectoration (coughing up) of blood or of blood-stained sputum from the bronchi, larynx, trachea, or lungs .

I had my first experience of hemoptysis when I turned around 16 years of age. I still remember it quite clearly I was having physiotherapy a couple of days into IV antibiotics on the out-and-about program (a program where you go home on iv’s) Now at this time I wasn’t really aware of the dangers but became extremely scared when the nurse refused to answer any of my questions while constantly repeating that’s for the doctor to talk to you about..Ironically the doctor came 45 minutes later and I had fallen asleep.

Over the next couple of years I had small bleeds and everytime I would research it for a few days afterwards.

My first big bleed occurred after diving under water on a summer afternoon. Anyone that has experienced bleeds knows the instance they occur, it is a feeling that can’t really be explained. It does not usually hurt, it feels like a warm wheeze or slight vibration and in my case a sensation that something is dripping inside my lungs..

The bleed that occurred on this summer afternoon scared me to the degree that I still get a feeling of dread thinking about it..The feeling that you have no say in when the bleeding stops is horrifying and all you can do is stay calm and sit tight..

In my instance there was no need to cough the blood up as it was so pressured it was spraying. I can still see the stainless steal laundry sink sprayed with blood and the mass that was filling the bowl was clotting before it could drain away.

Its funny but I was so naive with this new experience once the bleeding had stopped I simply walked back to the pool area and sat down..I remember my mates commenting on how pale I looked. (These days I would call the Ambulance quick smart)

What I have learnt since that first massive bleed is priceless in terms of staying calm which helps alleviate the bleeding and the general aftermath where you hopeless and out of control..

In the situation of a Lung Bleed one is always going to panic somewhat If you don’t your not fully aware of the danger or are simply new to this horrendous part of the Cystic Fibrosis disease.

But a few things can be done to help reduce your panic and hopefully stop the bleed or at least slow it down allowing for you to get yourself to hospital or an Ambulance to arrive.

Firstly I have plastic cups around I use them to drink from so I have heaps..The average plastic cup is 200 mls so when a bleed of substance occurs I start coughing up into the cup..Now my mum finds this scary as you can clearly see how much has actually come up, but in my case knowing this calms me. I can see exactly how much is coming up which is good because you know your not going to die from 200 mls which in this situation is reassuring. I have a rule anything over 30 Ml of pure blood (not mixed in with mucus) I call the ambulance. This is something I have discussed and made a plan with my doctors.

Another practise I implement in times of massive bleeds is to make my mum aware of what naturally calms me..That being a bottle of water, a cool towel over my shoulders and a small bedside fan blowing directly on to my face..There is something I find reassuring and calming about having air blowing over my face..

In terms of coughing the blood up..I only cough once I feel it filling up..I’m under the belief through my own experiences aggressively coughing up the blood while its actively bleeding is only going to prolong the process as a vital clot may be forming and if your aggressive coughing like one would during physiotherapy your likely going to cough it up causing the bleeding to continue.

The reason why I call the ambulance rather than getting someone to drive me to the hospital which could possibly be much quicker is the fact that patients arriving in the ambulance get seen straight away and you don’t want to be sitting in emergency having a lung period whilst catching someone’s hybrid swine/bird/camel flu.

The catheter in the lung

The catheter in the lung

Once I see a doctor I make sure they start a saline drip and order a lung X-Ray as bare minimums, you would be surprised how long it can take them to come to that decision but having several million degrees in CF they usually listen to me and order my X-Ray..

Now if the bleed is constant they may offer the option of having a pulmonary Angiogram Embolization (what they d0 with me)..It’s a procedure where they thread like a picc line or to be more precise a catheter up through your artery in your leg through to your lungs..The hope is that they can inject a radioactive dye and see where the dye is leaking out of the lung hence directing them to where the procedure is required, where a medication or synthetic material called embolic agents is placed through the catheter into the blood vessel they believe is bleeding to prevent further blood flow to the area. Thus hopefully preventing further bleeding.

Typically Ambolization should last at least 18 months as the vain’s do regrow.

There are certain risk factors that go with all procedures however that is something for you to discuss with your Doctor, however Pulmonary Angiograms are the standard treatment for Hemoptysis from the lungs. There are other treatments used to treat lung bleed including drugs to slow bleeding. A few years back I tried Tranexamic Acid it seem to help with constant slow dripping bleeds in my case.

Are there things I can to do to prevent or reduce to the chance of future Hemoptysis?

Yes there is..It sounds so simply but we know it’s not..Stay healthy as possible..And when you start getting a chest infection act on it straight away..In the past when I was much healthier as a young child, I would feel a chest infection coming on but I would say to myself “I will just wait until I see my doctor in a couple of weeks”. Well these days I have learnt through natural maturing to get an appointment straight away and even have some meds on hand as in my clinic they know I’m experienced and mature with my health so if its a Friday afternoon and I ring up stating I have a chest infection brewing they usually give me the go ahead to start nebs and oral cipro and to come see them the first thing the following monday..These few days of getting to infection earlier than you would can greatly help in reducing the damage the chest infection does to your lungs and ultimately reducing the the chance of hemoptysis.

Its been 20 months since my last Pulmonary Angiogram so I’m constant weary about future bleeds..

Which brings me to the point about how hemoptysis plays tricks with your mind or at least it does with mine..

After every bout of bleeding (no matter how big or small) I go into a shell and pull back from things depending on how serious the bleed is, it can be anything from a day or two to a couple months (Months in a shell is not fun)..

It always seems to be the case when I get my confidence back I have another bleed..Now I have read and heard many opinions about this factor of losing your confidence in regard to hemoptysis so I’m going to share my own opinion formulated from 6 years of constant lung period.

I believe that no matter who you are bleeding from a place your not suppose to and can’t see is going to cause some psychological issues..Depending on what type of person you are they are going to differ..I believe its normal to go into your shell after a bleed and its a smart thing to do, because it allows your body to relax, settle and repair however you must after a short while continue on with your life, being weary knowing your signs and knowing when you should just rest for a moment and settle..You can’t let Lung Bleeds rule your life buts silly and naive to say they don’t play some role in the direction we take. For instance you won’t see me playing contact sport..So all in all…You own your body…You know that body..You know your cough..You know the tickle in the back of your throat..So you will know your Lung Bleeds and know what’s best for you.

LEAVE COMMENT

Sources:

Pulmonary Angiogram on Wikipedia

Hemoptysis/lung bleeds


For Fun.

PeGsOn

Living in the Present…Aware of the Future

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November 12, 2009 Posted by | Repost | , , , , , , , | 5 Comments