OK here goes, I am going to give good advice to those of you who are having recurring bleeds. I will first start with my hemoptysis story.
I coughed up blood for the first time when i was 21. Whats odd about that is, i had barely any lung involvment at that point yet, Barely ever coughed either. It scared me a bit, called the Dr. got some antibiotics and that was that.
I had the occasional bleed here and there for years and it never really riled me up too much because i thought " this is just part of cf'. Well 5 years ago, i had a bleed one day just like the others, and then the next day, and the next, and so on for a little over a week each one being a smidgen more than the last. One night while laying in bed i had a bleed and this one was larger, and i coughed it all out lay back down and went to sleep. Next night , i rolled over in bed and it started, but this time it wasnt stopping, I called 911 and they got me to the hospital but thankGod by then it had stopped. each time i leaned on my left side it started again. I was put on 3 iv antibiotics and things looked like they had calmed down, and one morning ( 2 days bleed free) in the hospital i leaned over on my left side in my bed and whammo....this one was bad, this one took a long time to stop and it was horrifying. I couldnt even catch my breath because the blood was coming so fast, I was sure i was going to drown right there in front of everyone. I could only muster 2 words out...."please God" and right after, it started to slow down. That day i had my first embolization. I have never lay flat to sleep since. In the past, laying flat was always a trigger and after that experience i just could not bring myself to lay flat anymore. I had another embolization about a month and a half later , and a third last Oct. The other two bleeds werent as big as the first. I never ever want to see another bleed that large again. While i was having the embolization the intervention radiologist said i had a big gaping hole in my blood vessel , took pictures and said he would include that in their medical journal.
Now for the advice part.... If you are having bleeding and it is recurring closer and closer and getting to be more volume each as time goes by....please get a cat scan with contrast. They will ( should) be able to see whats going on. It is usually a blood vessel that is dilated. The dilated ones get weak and break. Laying flat with a weak blood vessel can put too much pressure on it (with all the blood that will pool in the lungs) and it can break. This isnt medical fact .... it just makes logical sense.
Vitamin K is a given.... If you have hemoptysis problems, you need vit K.
L-Lysine is something else i have taken to help with hemoptysis and it has helped a bit. I still take it on a daily basis.
Some things to avoid if you have hemoptysis problems..... Large doses of Vit.E, fish oil, green tea, garlic,
anything that can thin the blood, you dont want to consume in large amounts. If this helps just one person avoid what i had to go thru ,i will be very happy.
I coughed up blood for the first time when i was 21. Whats odd about that is, i had barely any lung involvment at that point yet, Barely ever coughed either. It scared me a bit, called the Dr. got some antibiotics and that was that.
I had the occasional bleed here and there for years and it never really riled me up too much because i thought " this is just part of cf'. Well 5 years ago, i had a bleed one day just like the others, and then the next day, and the next, and so on for a little over a week each one being a smidgen more than the last. One night while laying in bed i had a bleed and this one was larger, and i coughed it all out lay back down and went to sleep. Next night , i rolled over in bed and it started, but this time it wasnt stopping, I called 911 and they got me to the hospital but thankGod by then it had stopped. each time i leaned on my left side it started again. I was put on 3 iv antibiotics and things looked like they had calmed down, and one morning ( 2 days bleed free) in the hospital i leaned over on my left side in my bed and whammo....this one was bad, this one took a long time to stop and it was horrifying. I couldnt even catch my breath because the blood was coming so fast, I was sure i was going to drown right there in front of everyone. I could only muster 2 words out...."please God" and right after, it started to slow down. That day i had my first embolization. I have never lay flat to sleep since. In the past, laying flat was always a trigger and after that experience i just could not bring myself to lay flat anymore. I had another embolization about a month and a half later , and a third last Oct. The other two bleeds werent as big as the first. I never ever want to see another bleed that large again. While i was having the embolization the intervention radiologist said i had a big gaping hole in my blood vessel , took pictures and said he would include that in their medical journal.
Now for the advice part.... If you are having bleeding and it is recurring closer and closer and getting to be more volume each as time goes by....please get a cat scan with contrast. They will ( should) be able to see whats going on. It is usually a blood vessel that is dilated. The dilated ones get weak and break. Laying flat with a weak blood vessel can put too much pressure on it (with all the blood that will pool in the lungs) and it can break. This isnt medical fact .... it just makes logical sense.
Vitamin K is a given.... If you have hemoptysis problems, you need vit K.
L-Lysine is something else i have taken to help with hemoptysis and it has helped a bit. I still take it on a daily basis.
Some things to avoid if you have hemoptysis problems..... Large doses of Vit.E, fish oil, green tea, garlic,
anything that can thin the blood, you dont want to consume in large amounts. If this helps just one person avoid what i had to go thru ,i will be very happy.