Cystic Fibrosis Questions - coughing up blood
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coughing up blood
Apr 08, 2010 at 1:02 PM

My daughter (19) coughed up blood a few days ago. She's never done this before. It was around 4pm and she hadn't been coughing hardly at all. She coughed a couple of times in the kitchen and she spit in the trash can and there was a lot of bright red blood. She coughed again and more came out. After about 10 minutes there was no more blood. She said she felt fine. Why did this happen if she hasn't been coughing and she hasn't been sick? Her doctor said if it happened again to call. We go to CF clinic next week and we'll get more answers but it really scared us. Any advice?

thank you all for all the advice! I wish cysticlife had been around a long time ago. I learn so much from you all and it does help calm a worry wart like me!!
Apr 13, 2010 at 6:52 PM
I've had this happen to me once when I was in my early 20' started at night while I was sleeping. Needless to say it was absolutely terrifying since I had never heard of such a thing. I of course headed immediately to the emergency room. I think it subsided after 30 minutes to an hour. I seem to recall that my doctors said that it's not too serious as long as it's less than a full cup of blood. I might have had another minor recurrence or two, but not as bad as the first. Plus, the doctors helped me to realize that it wasn't a reason for panic.
Apr 09, 2010 at 9:39 PM
I couldn't stop coughing one day at work, and then spit into the sink what I thought was mucus, turned out to be a couple tablespoons of blood. This was the first time I coughed up so much blood and it wouldn't stop. Called my doc right away, and he said get to the hospital. I kept coughing up about a tablespoon every time I coughed. The doc said I could wait and see if it clots up itself or I could get a couple stints put in to fix it right away. I was scared and decided to get the stints put in, but they couldn't get the procedure done until the next morning. They put 3 stints in be way of the groin area through a catheter (tube) no sure the proper terms. It didn't hurt at all and stopped the bleeding immediately. Don't want to scare you, but there is an easy fix if ever needed.
Apr 09, 2010 at 7:57 AM
Another big reason you have to monitor how much blood is coming up is because POTENTIALLY you could bleed to death... there are main arteries from the heart going to the lungs (b/c of oxygen exchange) so thats why if one should break, and it doesnt stop they have to go in and do the procedure that Amanda was talking about... make sure to ask your doctor what the "magic" level or amount is that you should be watching for... like I said it happens (but they give you conservative amount on purpose) I have never personally heard of anyone having the extreme outcome of what I stated above. They go in and do the cauterization. I was told though, that they do try to save that as a last resort just because it is a procedure and sometimes it makes that part of the lung kinda sucky for oxygen exchange.

Like I said, hopefully this didnt worry you too much, but now you have a little information for when there is a next time. Just tell you daugher to relax, drink something cold and skip treatments for a day (well thats my advice anyways).

Apr 08, 2010 at 10:27 PM
Kim, this happens to me a lot. My first time was also when I was 19. Sometimes it can be due to an infection and other times it is something else completely. I figured this out when I had a huge hemoptysis session. Blood was looked like a murder scene. Sorry to be descriptive but it was awful. I was feeling fine and my lung function was in the upper 90% area. This was not due to an infection. I found out from my doctor that CFers have lots of scar tissue in their lungs. Blood vessels duplicate themselves to try and heal the scar tissue. When they build up too much they can burst leaving one to many bleeding spots in the lungs. Then you get uncontrollable coughing up blood. I am sorry that this isn't the most technical explanation but hopefully I am saying it right. At this point they usually have to go in and cauterize the blood vessel so it will stop bleeding. It is usually a minimally invasive procedure they do in radiology via the femural artery. I have had to do this 3 times. The surgery usually lasts about 6 years. My last one was only 2 years apart. I had multiple bleeding spots that caused me to cough up blood randomly at any moment. It happened at a Sugarland concert and at my friend's wedding. I was a bridesmaid! It is very inconvenient. Sometimes it can be minimal blood and sometimes it is a lot. So much so, it makes it hard to breathe. If this happens get her to the ER. There have been rare cases where people sufficate from the blood. A good trick is to immediately drink cold water or anything cold. It clots off the blood and stops it sooner. A doctor told me that a long time ago and it has helped me so much. I know it can be very scary but it is pretty common. I also get a fluttery feeling in my chest right before it happens and I almost always know which lung it is coming from. It is usually from spots where I have scar tissue.
Apr 08, 2010 at 5:08 PM
My doc says if it is ever more than 1/4 cup of blood at a time then go straight to the hospital (which makes me feel better) . I cough up just a bit every once in a while, it is usually a sign of an infection. But who knows, I also do it at a high elevation...
Apr 08, 2010 at 3:31 PM
this has happened to me quite a few first I was pretty worried....the sight of blood from coughing can never b a good sign...mine too cleared up within a 1/2 hour just think I broke a blood vessel from too much coughing (which is ovioulsy a sign of infection) but not too long as the blood goes away and dosnt persist.....she should be ok. I would still mention it to the docs. the ext time she is seen.....but no need to worry :)
Apr 08, 2010 at 3:14 PM
usually when hayleigh 11yrs old coughs blood i call our center. With my daughter in tends to mean she is getting into trouble. I for my daughter take it as a warning sign as it seems she always feels fine even when sick! I think all cfers are different. hayleigh is in middle of flare up now we actually inn hospital but no blood this time! so we may never know!
Apr 08, 2010 at 2:34 PM
Weird thing happens to me too! I am feeling fine but then I once in a blue moon get a gurgly feeling in my chest and I cough up bright red blood. Doc said if it was alot like a few tablespoons then to call him and seek attention. Otherwise, mine always past too and there was never a reason for it to happen. Really strange!
Apr 08, 2010 at 1:46 PM
Hmm, I dont know if there is 'always' a rhyme or reason to hemoptysis. The first time I did it, I think I was around 19 and had been lying in bed. It stopped after about 1/4 of a small dixie cup. I of course, freaking out, along with my mom.

The main thing is normally they have you stop airway clearance for at least 24 hours. For some reason your daughter busted open a vessel in her lungs. So you want to give the vessel time to clot and heal without roughing it up all over again with coughing. Also have her "lay low" for a day or two, meaning, try to limit activities that will cause high blood pressure which can also cause the forming clot to open again. Sounds like she remained quite calm, which is always good for hemoptysis, I can normally get blood stopped after one or two coughs b/c I just go to my "yoga mind" to keep my heart from racing etc.

One doctor told me, that you have these big balls of mucus and bacteria and the body has intertwined tons of blood vessels in this big "infectioned" area to supply white blood cells, so she coughed and probaby roughed up one of those areas (a big thing of mucus) and in doing so kinda ripped it away from the blood vessels, thereby pure blood. That was what I was told my first time coughing up blood anyways. Course I wish I could show you with my hands...

Though it is scary, it is fairly normal with CF'ers, even without active infections, of course, it can get serious so it is important to keep an eye on how much blood she is coughing up when it happens.

Also other times I have had it happen, is I used to get it frequently the week or two before starting my period, sometimes it happens to me when I go to lay down at night (the pressure changes in your body by laying down). I havent ever started it up with exercise, though some do. I have had it happen when on certain antibiotics like Cefoxitin b/c it affects the vitamin K absorbtion into the cell or something like that and vitamin K helps improve blood clotting. So maybe she is a little vitamin K deficient too.

There are probably lots of reasons I didnt hit on, but unfortunately with CF, it just inflames our lungs so its bound to happen to most if not all, cf'ers. But I hope I helped... I tried haha.

Apr 08, 2010 at 1:20 PM
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