• Profile photo of CHRISTY121CHRISTY121
    Member
    #171204630708

    I have coughed up blood many times and have had to have an embolization 3 times and a scope once. In 2002 I was coughing up serious amounts of blood. They figured it was between 4-6 cups. Can’t really measure when its in the toilet I nearly had to have a blood transfusion. Anyway, I had been doing fine and had only a few episodes of blood until last year while I was pregnant. I coughed quite a bit again and they went in for another embolization. The only difference was this time I was put on a vent which scared the crap out of me. They sedated me for 24 hours while vented and went in two different times to stop the bleeding. A few days later my OBGYN said it was time to indue labor and have the baby because of all that was going on. IT was 6 weeks too early, but while I was on the pit, those of you who have had children probably know what this is, anyway I began couging up blood again. I was rushed up to ICU and they wanted to stop delivery, but my girl was on her way. so they put me out got her out of me put me on the vent again and scoped me to see where the bleeding was coming from. They thought it would heal on its own so no embolization was done but then a few days later after coughing up more blood they were able to go in without me on the vent and I was basically awake during the procedure. If you have any questions please feel free to email me. tigger_babe32@hotmail.com. please put CF in the topic so I don’t erase it I am doing much better now and have not had any severe bleeding episodes.

    Profile photo of sturowsturow
    Member
    #171204620686

    I have coughed up blood in massive amounts quite a few times. One of the first times it happened was during a “clean out” actually…I was very worried and immediately called in the nurse. They didn’t know why it was happening…So, the next day I asked the doc and he explained that maybe during a coughing jag, I could have broken a few blood vessels…It doesnt happen too often but, when it does, it can be frightening, I know. I guess it just can be a normal thing at times to cough up blood. Hopefully, it wont happen again for you, me or anyone else for that matter, very soon!

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204620522

    I can relate to the whole bleeding thing. I too get the gurgle. I have had 2 embolizations w/in a week of eachother and i still bleed sometimes just a tablespoon or so here and there. The only thing that is different that happens to me is sometimes When i get the gurgle I get this weird numbing feelign over my body. My whle right upper side goes almost completely numb and my left leg and its hard to breath. They told me im not getting enough blood to my brain, so i have to get my head as far down to the ground as i can as soon as i can feel the “numbness” starting. I actually woke up in the middle of the night almost paralyzed coughing up a lot of blood and was rushed to the hospital and had my first embolization. But they don’t know why I get that numbness. Does it happen to anyone else?? or does anyone know anyone who it has happened too? its just annoying. But I at least know what to do if it starts, unfortunately I have anxiety from it now.

    Alanna 21/cf/diabetes

    Profile photo of kwalnykwalny
    Member
    #171204620017

    In response to whether coughing up blood is more common in girls, i think our menstral cycle can sometimes have something to do with it. I know that when i have hemoptysis problems it is right between the time of ovulation and the period itself. In fact after my first embolization i corresponded with 2 women with cf who had hemoptysis problems and were using oral birth control to stop it. I decided to give that a try and it did make somewhat of a difference. They say that the estrogen in the pill helps to make the blood vessels more pliable and less likely to break. It is so odd, but after giving it a lot of thought, i started to notice that just about every time i coughed up blood, seemed to be the same times each month .
    ~Diane 40 / cf / diabetes / b.cepacia

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204620000

    I was told by my doctors that cf in general is harder on girls than it is on guys especially around their twenties, and they don’t really know why

    Ashley 20w/cf

    Profile photo of jenreeceyjenreecey
    Member
    #171204619997

    wow..is it mostly common in girls? or both sexes? sorry i just noticed there was only maybe 2 posts from guys..and more from girls..

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204619996

    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

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204619979

    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

    Profile photo of kwalnykwalny
    Member
    #171204619954

    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
    ……………………………………………………………………………………………………………………………………………………………………………….
    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
    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

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204619870

    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

    Profile photo of MantarayMantaray
    Member
    #171204619865

    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

    Profile photo of kwalnykwalny
    Member
    #171204619846

    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

    Profile photo of MantarayMantaray
    Member
    #171204619760

    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.

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204618028

    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.

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204617727

    no need to apologise just wondered what the heck u were talkin about!!!!

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