Coughing Up Blood

A

anonymous

New member
I'm a pretty darn healthy CFer (thank God) with FEV1 of about 88%.

But a few days ago I went to the ER coughing up quite a bit of blood. Does this happen to a lot of you out there?

It went away after about 1/2 hour. But today I saw my CF doc and he explained to me what happens if you can't stop coughing up blood (stent, mesh, etc.).

Too scary for words.

Does this ever happen to anyone? Anyone not able to stop the blood they're coughing up?

Thanks so much for your input.


-Amy 23yrs
 
A

anonymous

New member
amy,

this is fairly normal in CF and common for me, I would encourage you to make sure 2 things were done. First get a PT/PTT or a INR done to determine your clotting ability. As we don't break down Vit K very well this may part of the issue. Another thing is to have a High Resolution CT done of your chest, you probably have a bit bronchectasis, we all get it eventually, that might tell part of the story. As for the embolization we posted on it a few days ago, I have never had one....But you need to have a plan in order in case you beign to bleed again. You want a qualified, experienced radiologist do to it, we have enough problems without having a crackpot screwing us up!
My doctor actually wants me flown to my CF center 2 1/2 away rather than having it done here locally, locally is the biggest hospital in the state!

Luke 29/cf
 
C

CheerColl

New member
Amy,

I can completely relate to you...I have PFTs in the high 80s and I find myself coughing up blood quite frequently sometimes. It is usually scary, but has never lasted very long...i'd say the most i've ever coughed up at one time would be 2 tablespoons.
 
J

jleigh

New member
Same here...when I have coughed up blood, (and it is scary that first time!) it usually is about a couple tablespoons and then tapers off after a half and hour to a couple hours. I always have some bad pain though after I cough up blood...I can tell right where the bleed is coming from.

And from what I was told, as the others have said...it can be fairly common in CFer's.

Jen 34 w/cf
 
A

anonymous

New member
I have coughed up blood before and it is pure red blood. No mucus, just blood and I get this gurgling sound in my chest and I know I am going to be coughing up some blood. I would say it is a teaspoon. The gurgling is so weird though, has anyone else had that????? And it comes out of nowhere. I have not been coughing hard or anything and all of a sudden that sound comes and blood comes out! YUK!!


Jennifer 33 with CF
 
D

Diane

New member
I know know exactly what you're talking about when you mention that gurgling sound. I started coughing up blood when i was around 21 years old with pft's in the high 90's and almost no lung involvement so it makes little sense why i should have been coughing up blood. I didnt really have a true problem with it till about 5 or so years ago when it would happen more often and slightly larger amounts then the usual 1 or 2 table spoons . Two years ago i coughed out about a whole 12 - 18 ounce cup of blood, and had to have my first embolization. The second embolization was almost the same amount. Now a days its the usual 1- 2 table spoons again ,thank God . I wish there was a permanent remedy to stop it for good. I started using L-Lysine recently to help with the lung bleeds. I read about a womans cf son who used L-Lysine and it helped to stop his bleeding problems . I am hoping for the same success <img src="i/expressions/face-icon-small-smile.gif" border="0">
~Diane 40 / cf / diabetes / b.cepacia
 
A

anonymous

New member
Yes jennifer, when i hear that i know that blood is coming. the first time i felt it i thought oh has the mucus gone so soft and then i had a freaky hemoptysis.
 
A

anonymous

New member
indeed i get the gurgle too!.... and yes its soo random all of a sudden and you know whats going to happpen next. sorry if this sounds disgusting but does anyone swallow it back down i have only coughed it up a few times and it made me sick so now i just swallow it??! and take the magic pils to stop it!!where would we be with out them !

emmz 18cf uk
 
A

anonymous

New member
I cough up blood alot and have to say it is really gross. I don't have cf though but cough up blood for my lungs. I also have a bad bad stomach and when I can't stop vomitting I sometimes end up puking up blood. My dr gave me an ulcer med that helped with the stomach though. My lungs happen when I have bronc trouble or pneumonia usually after the mucus changes colors. Sorry for rattling on hope everyone is doing well. It's nice to find out what my sons will have to deal with having cf
 
2

2sickkids

Guest
Sorry that was me forgot to login. yeah that does sound odd. Just ment it's good to see that every one with cf is just a normal person. Everyone I know acts like they are freaks or something(my sons) . I hope I didn't insult anyone. Basicly I mean I like to get everyone perspective on dealing with their cf so I have a idea of what to expect well as much as possable any how. Sorry
 
A

anonymous

New member
no need to apologise just wondered what the heck u were talkin about!!!! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
A

anonymous

New member
Hey guys! thanks so much for the feedback. I can't tell you how much it means to me to know that others go through this.

Luke - u said your doc wants you flown to a radiologist? Doesn't an embolism need to be done right away? Is there time to be flown somewhere (forgive my ignorance).

But I did check my vitamin K (clotting level) and it was normal. But this level was done two months ago, so maybe I should have it done again?

Luke - one final thing. What's bronchectasis?

Diane - talk to me about what your embolism was like? Did it hurt? Was it scarey?

Thanks again you guys - I appreciate you feedback more than I can tell you.
 
D

damndisease

New member
Hmmm, this is the first time I am writing anything on this forum, I just found it instead of doing my work...

The coughing up blood thing is pretty freaky. I am 31 with cf and I noticed that the hemoptysis started happening shortly after I began using hypertonic saline solution inhaled. It has happened at some pretty inopportune times and I have very discretely expelled it. I start to gargle it a little and then I just can't help but cough. I have been told that it is nothing really to be concerned about and that I ain't gonna drown in my own blood. Luckily it does stop after a few minutes. One doctor said I should give it 12 days to heal, like any wound, before resuming my aerobic activity. One time it happened while running and, in one of my irritated states, I just started running again, defiantly. Eh, nothing happened. It has happened about 7 or 8 times now, but not in the past 7 months.
 
D

Diane

New member
To The person who last posted about hemoptysis and being told its nothing to worry about, let me give you an important piece of advice. Dont ever feel too comfortable with hemoptysis to the point that you feel that it may never be serious. I too have coughed up blood for years and always thought,,,,,,, ahhhhh no big deal it always stops and goes away on its own. Well, one night it didnt stop till i had coughed out a LOT of blood more than once and i wound up having to have an embolization. When you cough out a small amount like maybe a teaspoon or two thats not too bad, but if it keeps happening frequently you may want to see your doctor and make sure nothing else is going on.
--------------------------------------------------------------------------------------------------------------------------------------------------------------

To the person who asked what the procedure was like.......
No the procedure itself didnt hurt, They numb the groin area where they insert a catheter, and the intervention radiologist wtches on the screen as he probes around looking for the bleeding vessel(s). He injects dye to be able to see and then plugs up the vessel that is broken or damaged. It take about 3 hours and you have to lay completely still. They do give sedation ( but not totally asleep < just like a twilight). I refused the sedation, because i hate the way it makes me feel. It wasnt easy to lay still that long.
As for it being scary......... well yes and no, i was scared because i didnt know what to expect, but i was more scared of the hemoptysis and the embolization seemed little in comparison.....if you want to know more, eail me........ jinxnick@aol.com

~Diane 40 / cf / diabetes / b.cepacia
 
D

damndisease

New member
Diane,

Hmmm. I guess I should be careful giving out recommendations/advice. I certainly never thought it could be that serious. Nobody had ever mentioned the risk of an embolism (I assume that is what leads to an embolization). Yikes. I'll talk with my doctors. They know that I climb mountains once in a while and that puts me at greater risk; I'd hope they would catch that tragedy waiting to happen before I experience it.

I have pretty much been in denial about this whole cf thing (diagnosed at 11, now 31) and I think it shows with my careless post. I feel like crap most of the time, but I also exercise like a madman in an attempt to feel "normal". I am pretty reckless; I certainly would rather die on a mountain (my favorite place - even from an embolism) years to soon than in a hospital bed (least favorite place). Please ignore my advice and thanks for yours. I am getting less stubborn in my 30's and maybe I'll start listening.

Mike
 
A

anonymous

New member
I started coughing up blood for no reason back in december, then it just went away the blood got darker and then it just went away. It wasn't until a month later that it came back so i called the doctor and went in and got cipro for a infection. I did the cipro and my zithromax was uped to once a day for ten days, the day i stopped i started coughing up blood again. I went back for an appointment my pfts went down from 48% to 36%. i went back on cipro for another three weeks. I finished just the other day, and now the bleeding is back again. My infection seems to be gone cause my mucus is very thin and lightly coloured now. but i think for about three months now my lungs have been bleeding and i have an appointment to go to tomorrow. Also my cf clinic is now about an hour away. Before it was 4 hours, but it was the best clinic around so my parents never minded. I say even if it's far away if they're really good there i would go.

Ashley 20w/cf
 
D

Diane

New member
Hi Ashley,
I know this will sound crazy, but i have often heard that when you start to clear an infection and clear out your lungs, the bleeding may happen because now that the mucus is gone, it may have exposed an irritated spot in your lung, and since there isnt anything in the way of it.... it can bleed more easily. If that is the true case then its like a "catch 22"....darned if you do, darned if you dont<img src="i/expressions/face-icon-small-confused.gif" border="0">
.......................................................................................................................................................................................................
Mike,
I can certainly uderstad your being in denial, especially since you were diagnosed late. I knew my whole life i had cf, but since it was so mild ,i lived life as if i didnt have it. I never did treatments, and never expected any kind of complications since i was so well.... Unfortunately my being so mild kept me from learning more about cf, and using an ounce of prevention. Once i got b.cepacia everything changed, then i had to have two embolzations and my whole life changed dramatically. I have learned everything i should have known all along, and i now do treatments and am trying to maintain my health as best as i can. I realize how fortunate i have been all along, and also how foolish<img src="i/expressions/face-icon-small-sad.gif" border="0">
You sound like you have a great attitude and i know you will start "listening" as you said. Life is so precious, we cant let it just slip by. You arent letting it slip by because you are doing what you love most and thats awesome!! Just dont climb high mountains when you are having bleeding problems, and definitely talk to your doctor to be sure the bleeding isnt a sign of something else.

~Diane 40 / cf / diabetes / b.cepacia
 
A

anonymous

New member
Well basically it's too late now.. i have to go into the hospital at the earliest on thursday...yay...or not

Ashley 20w/cf
 
A

anonymous

New member
Amy,

Sorry I didn't get back to you sooner I didn't read this thread until today. Bronchiectasis is the permanent dilation of the bronchi, it happens for different reasons, CF and GERD are both causes. It causes impairment in moving out sections. It actually is similar to CF's lung dysfuntions in its symptoms, excessive sputum production being one of them.

As for flying to WVU for the embolization, you are correct and that is why I wanted a plan B. My doctor said that the "best" decision was to be flown up. Hopefully I will not have to cross that bridge but if I do I will decide whether to do it here or up there.

thanks for your question


luke
 
You must log in or register to reply here.
Top