I wanted to know if anyone has had this happen to them before. It started out with the night sweats for a week, but I was feeling normal besides that. Then I started to feel really tired and I coughed up blood one night. I always cough up blood around 6pm-7pm when I sit or lay down in bed but I don't cough up blood often, maybe once every 2 years. It is never in the morning, always evening. I have coughed up blood in the past which was pure and thin. Day one was thick and pure blood. Over the next 6 days, I coughed up blood always around the 6pm time but the blood did thin out to pure blood. The rest of the time I just had streaked blood mucus. During this 6 days, I was so tired, I didn't even want to move. On day 5 of coughing up blood, I started to feel fuzzy, like a light buzz when you first have a drink of alcohol. Doctor called me in some Bactrim antibiotic, and I started some vitamin K. Bleeding stopped and hasn't come back. This was about 3 weeks ago. I called doctors office to see what was in the sputum sample. They said staph but not MRSA staph, they said the milder staph. They also said a very small amount of yeast. Not sure what that means. I do not know everything about CF because I have always had a mild case and wasn't dx until 15. I asked about MAC, but they said results take longer for that. I also had a yeast infection start right before I started coughing up blood. Any advice? Explanations ? I've coughed up blood for one day, but never 6 straight. I cultured MAC in a prior sample but I am not consistent enough with going to the doctor to know if the MAC is for sure in my lungs. Doctor said it takes 3 positive tests that are done within a certain close time. I want to add that my lung function was at my baseline when this was happening, which is fev1 78-79%.
6 days straight, coughed up blood
- Thread starter kmhbeauty
- Start date
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RytheStunner
Guest
I had the same thing happen last summer. The night I started IV antibiotics, I started coughing up blood. Then I coughed up blood every night about 5 AM for the next six days or so. I ended up going into the ICU to get an embolization.
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welshwitch
Guest
It sounds like you are battling some sort of mild infection....being tired, fatigued and then culturing staph could certainly cause it. I am glad you have already talked to the doctor and gotten treatment. That is the best thing you can do. Antibiotics and Vitamin K sound really good. Are you taking Vitamin K consistently? And is it CF Water Soluble Vitamin K? That is really important (as opposed to over the counter Vitamin K) because it is easily digestible for CFers. I would recommend being on Vitamin K all the time. I take it once a day. It helps with blood clotting and preventing hemoptysis.
I've had a bit of bleeding in my time, never enough to warrant antibiotics, but it always is a sign that I need to slow down a bit and take it easy. I wouldn't panic about it -- it is part of life with CF. But I would try to be as proactive as possible to prevent it from happening consistently. Are you taking Pulmozyme? That has been known to cause it. So has advil (blood thinner), high altitude (for me), and just being worn out and exhausted. I'm sure the staph doesn't help either.
And finally: hope you feel better
I've had a bit of bleeding in my time, never enough to warrant antibiotics, but it always is a sign that I need to slow down a bit and take it easy. I wouldn't panic about it -- it is part of life with CF. But I would try to be as proactive as possible to prevent it from happening consistently. Are you taking Pulmozyme? That has been known to cause it. So has advil (blood thinner), high altitude (for me), and just being worn out and exhausted. I'm sure the staph doesn't help either.
And finally: hope you feel better
I haven't been on iv antibiotic or oral in almost 2 years. But I was sick about 3 weeks prior, very sick with really bad bronchitis. The worst bronchitis I have ever had where I was coughing up balls of mucus for about 3 weeks. I try to keep my immune system active and not take antibiotics until I have to. I finally got better and then this happened. Did they tell you why it happened? I really don't get that much info from my doctor. I get that I have cf but there is an underline reason why it happened because I am a decently healthy person. I am not the type to get scared, but this really scared me.
Thank you for your advice. I always culture staph but maybe I am just run down. It really freaked me out though. I am not taking pulmozyme or any paid meds. I don't normally take Vitamin K but I will start now, after this. It is an over the counter Vitamin K but I try to take my vitamins with coconut oil to aid with absorption. The week prior to this, I had been trying to wake up at 7am every day. I normally like to sleep in until 830-9am. I notice sleep is vital to me but I need to get myself up early for a future job. Right now Im a food server, and I work nights but that wont be forever.It sounds like you are battling some sort of mild infection....being tired, fatigued and then culturing staph could certainly cause it. I am glad you have already talked to the doctor and gotten treatment. That is the best thing you can do. Antibiotics and Vitamin K sound really good. Are you taking Vitamin K consistently? And is it CF Water Soluble Vitamin K? That is really important (as opposed to over the counter Vitamin K) because it is easily digestible for CFers. I would recommend being on Vitamin K all the time. I take it once a day. It helps with blood clotting and preventing hemoptysis.
I've had a bit of bleeding in my time, never enough to warrant antibiotics, but it always is a sign that I need to slow down a bit and take it easy. I wouldn't panic about it -- it is part of life with CF. But I would try to be as proactive as possible to prevent it from happening consistently. Are you taking Pulmozyme? That has been known to cause it. So has advil (blood thinner), high altitude (for me), and just being worn out and exhausted. I'm sure the staph doesn't help either.
And finally: hope you feel better
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welshwitch
Guest
Here's a site where I get my ADEKs:
http://www.yasoo.com/products/aquadeks/
My insurance doesn't cover them, and they are a bit pricey ($60 or so for a 4 month supply) but I really recommend them. They've really given me an extra boost. Not only in preventing bleeding, but my nails are stronger, my hair shinier, my skin looks better, and I ward off colds easier. Just an all around good thing to have in your system.
http://www.yasoo.com/products/aquadeks/
My insurance doesn't cover them, and they are a bit pricey ($60 or so for a 4 month supply) but I really recommend them. They've really given me an extra boost. Not only in preventing bleeding, but my nails are stronger, my hair shinier, my skin looks better, and I ward off colds easier. Just an all around good thing to have in your system.
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welshwitch
Guest
Oh, and I get them thru the CF Services Pharmacy.
CyrilCrodius
New member
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Hemoptysis happens as a result of inflammation or bronchiectases, both being results of infection, or pulmonary arterial hypertension, which in CF, is a result of chronic inflammation.
Take your pick. It's most likely related to the bronchitis and CF combo having damaged your lungs and inflammation from residual infection from your bronchitis.
Change in posture causing hemoptysis suggests a certain degree of pulmonary arterial hypertension. When you lie down, the blood pressure in your body evens out : The blood pressure in your lower body goes down and the blood pressure in your upper body goes up, which sometimes causes blood vessels in your lungs to burst.
What exactly are your criterion for "until I have to"? If you haven't taken antibiotics to fix this bronchitis, whatever criterion you're using are stupid and careless ones, assuming that you are active in trying to stay healthy. Infections cause lung damage that it is irreversible. It's not when you're about to die that it's time to start taking antibiotics. The only reason you may have to avoid antibiotics is if you're starting to develop resistances, which is likely not your case. The first thing you should try right now is a round of antibiotics and next time you get sick, start considering it sooner. To reflect what someone else said in another thread, I have seen very healthy CFers crash and burn because of stupid infections, while I have seen others live for years on the brink of death. I know this guy who's been living for over 10 years with Cepacia which according to CF statistics, is pretty damn amazing. On the other hand, I've seen this guy with very mild CF (the kind that affects the digestive system but not the lungs) going from healthy to needing a lung transplant within a year. CF with lung affliction is not something you can gamble with. It can hack and slash you at every corner when you least expect it.
... sorry... but DUH. We're talking about bacteria infected dust particles. Not only should you wear a mask, but you should do it outside your home and ideally, have someone else do it.
As far as the cats litter, I don't have anyone else that will do it for me. I started doing it outside now for some time. When I was sick, I should of taken some antibiotics but they give me really bad ulcers in my stomach. Once it took me 6 months to get rid of and I was in consistent pain. I always had to have food in my stomach and if I would drink some liquid after a long time of not having any liquid, my stomach would burn. This was hard to deal with since I am always working. My main thing with me that differs from other cfers is I don't have family. I have my mom who lives close by and that's it. She is barely making it financially and it not dependable to ask for financial help. I have to work all the time and there is no way around it. Im a food server in school full time. Trying to someday get a good job but I have a long way to go. I just called the doctor now to see if they got the results back for the things like MAC that take awhile. They said that they have noted that something is growing but not what it is. They said most likely is MAC and they are going to follow up on it. Since it is almost confirmed that MAC is in my lungs, any advice about it? I have done a little bit of research but not enough to fully understand what MAC is going to do in my lungs.
My other question in regards to Bactrim. I have been on it two weeks now. I can feel the beginning signs of a ulcer. I took some coconut oil and that helped with the burning a couple days ago. I havnt felt it again in a day or two. Should I continue that Bactrim. If MAC is the probem, the Bactrim, Im guessing not going to fix that. I know you all are not doctors, but I know a lot of you know a lot of information. Just a personal opinion helps me learn also. Any info on MAC too would be helpful
I agree, you are right. I should of taken action sooner. I believe the MAC was in my lungs before this but that illness did a lot of damage. I asked the doctor why it always happens at night when I lay down. He had no answer. Thank you for the explanation