Hemoptisis

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YEM

New member
Hi everybody,

I would like to know how you all handle with hemoptisis. I am feeling very good and my cf doesn´t give me too much problems....no infections and good levels of lung capacity but in january I was in hospital due to an hemoptisis. It came suddenly, I don´t think I was either infected or cold, even I had gone out for dinner that night....At hospital I didn´t make any special treatment, just IV and watching how hemoptisis was going on. I didn´t need lung embolisation because it stopped.
After this episode I haven´t had any other, but I am worried with it, lately, in two times while doing phisioterapy exercises I have had, but just a little bit of blood in my mucus but very low.....One of them coincided with a physical effort trying to take up my bycicle. I do aerobic exercise everyday and I don´t have any problem...
I hate hemoptisis and this can change completely my humour and takes me into a deep preocupation.
Does anybody know which are the causes for hemoptisis? Some type of exercises or efforts? high changes of temperature? how do you handle? resting all day and avoing movements even if there is a little bit of blood in the sputum????
I gess you understand me.......For me is the worst...

It has been a great discover this forum and share experiences with people from over the world......the big cf family....

Take care

Yem
 
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JazzysMom

New member
Hemoptysis is an old friend of mine. I have had it on/off since my dx at 7. For me many factors cause. Some are infections, dry air, too much caffeine, too much physical exertion (mainly lifting or straining to do so), physical exhaustion (lack of sleep), my menstrual cycle, STRESS & the list goes on & on. When I came home from the hospital last month I came home with hemoptysis. It was enough that the home health nurses freaked out, but it wasnt pure blood so I wasnt worried. I have never had any procedures to stop it. I have been able to handle it on my own so far. Between additional Vitamin K, ice water & occaisional cold packs on my chest when its quite active. I have had times that I had to stop using my Pulmozyme & CPT until it quieted down. I dont usually panick unless I have the gurgling sensation in my chest because that indicates that it wont go away as quickly. If I just cough up sputum with blood then I know it wont be as active. You are not alone & I am sure you will get lots of feedback on this topic!
 
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YEM

New member
Melissa, many thanks for your feedback......it is interesting knowing about ice water and cold packs....an easy treatment at home
Have you ever tryed Amchafibrin????

Take care. kisses

Yem
 
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HairGirl

New member
Along with Melissa Hemoptysis is my friend too. Buddies since I was a teenager! It didn't get really bad until about 4 years ago, then I was coughing up so much blood I had 7 embolizations in 6 weeks! Since then I've had about 6 more over the course of 2 years and don't think I've had any since then, a lot of times now it's because of infections, and of course, what everyone will tell you......it's always out of the blue, not caused by anything directly, like if you ride your bike you'll cough up blood (because I would have stopped that a long time ago<img src="i/expressions/face-icon-small-smile.gif" border="0">)

I've heard a lot of different reason for it, like that our arteries (the bronchial ones are the ones that bleed, not the pulmonary ones) don't grow as big as normal people, so when we cough hard or have infection it irritates them and they bleed, that's why we try and keep inflammation down.

Did you know that when you have a lung transplant they don't re-hook the bronchial arteries? So I told them just to un-hook them for me! They didn't think it was very funny but I like the idea!

Anyways, yeah it's common in adult CFers and really there's not much to do about it but try and control it, keep infection/inflammation down, do treatments and try and be healthy! If you have an episode and need support we are all here for you.
 
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Diane

New member
Hemoptysis is an ongoing problem for me as well. I had 2 embolizations done about 4 years ago, and i still have problems with it. I seem to have certain triggers for it.... laying too close to being flat ( i never lay completely flat anymore), leaning over too far, coughing too hard, for too long, my menstrual cycle etc. It also happens for no reason out of the blue sometimes. I take 10 mg of vit K each day and i also take L-Lysine 500 mg. 4 times a day and it seems to have helped. I am also on oral birth control so i dont ovulate, It seems every month around the time of ovulation i would have hemoptysis like clockwork. Needless to say i no longer lay flat to sleep since my last embolization almost 4 years ago. i also dont lay directly on my left side since my left lung seems to be the bleeding culprit, and laying on my left side seems to stir up bleeding in there. My doctor has suggested considering another embolization to help find the offending blood vessel and maybe stop this continuing problem. Which i just may do.
Like Hairgirl said, we are always here for you if and when you need support. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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thelizardqueen

New member
Well Hemoptysis is a new friend of mine. I've had minor lung involvement all my life, and then one night two years ago I coughed up about a cup of blood. I had no infection, no cough - nothing. The blood came out of nowhere, and it continued on a regular basis for 2 months. I required an embolization. To this day, every once and awhile my sputum will be streaked with blood, and a couple times I have coughed up a couple of teaspoons of straight blood. Its scary, and nothing can prepare you to see it in action, but you do get used to it after a few episodes. I find now, that my triggers are infection and dry air. I don't avoid movement when I'm having an episode, but when I sleep at night I elevate myself with a couple of pillows, because we all know that lieing flat will cause it to happen. I also avoid hot or warm food or beverages while I'm having an episode, and drink cold water, or anyother kind of cold beverage. I was told by my doc that when hemoptysis comes out of nowhere that its caused by repeat infections in one area, and your viens becoming corroded and thin. That's why I have my episodes. I was told by the doc who did the embolization that the vien that was causing the bleeding looked like it had been eaten away by acid.
 
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fugikitten2087

New member
I cough up blood every day. In the morning usually. I dont panic or deal with it till after it exceeds normal amounts. I dont go into the hospital for it any more till 1 - 1 1/2 cups
 
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john81john

New member
Hi,

yes vitamin K is very important, also vit .E ....I have never had Hemoptysis when I was playing tennis or biking, it was always after or during my inhalation therapy and expectoration. And usually unexpectaible, just when I have thought..well I have finished my therapy and I feel fine... and in 30-60 minutes I started cought blood or mucus with blood. But only once I have to go to hospital...usually I use only additional Vitamin K, ice water, occaisional cold packs (always prepared in fridge) on my chest when its active...after 20-40 minutes I am fine...
 
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Jem

New member
I agree with what everyone said about hemoptysis. And yes, Yem, I hate it too! I hate it because it's so unpredictable. I could be feeling perfectly well with lots of energy and boom - out of nowhere, hemoptysis. I had 1/2 of my left lung removed at 19 due to chronic hemoptysis and did very well for many years with only minor sporadic episodes. Then the episodes became more frequent and the amounts of blood increased to the point where at the age of 40, after 5 embolizations over 1 1/2 year period, I had the rest of the left lung removed.. Since then (nearly 7 years since that operation) I have only had several very small bleeding episodes of 1/4 teaspoon. Having both of my surgeries were very beneficial for me.


And when Melissa stated that with the gurgling sensation she knows that it will be a bad bleed I could certainly relate. And I can also relate to what Diane says about not sleeping on her left side because then that would cause her to bleed. For 20 years I didn't sleep on my left side for that very reason.


There are many reasons this can happen and others have already stated them. Seeing red brings back the bad memories but I try to remain optimistic and calm and trust that this will end quickly. I hope that when you do bleed you know that you are not alone. I hope the episodes will be light and few and far between.
 
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