In the middle of the night... (for bleeders)

[jbrandyn]

So as much as I would love to just have a post of Billy Joel songs that speak to you I do have a question.
When you wake up and have blood in your sputum what is your reaction?

Lately I found my reaction to coughing up smaller amounts of blood (I am a bleeder btw) to be that I just say, "damn it" and go back to bed.

Best wishes,
Brandyn

 

[running4life]

I've only coughed up blood a handful of times. One was because I had an upper stomach scope, stopped breathing, and they caused a lot of trauma to me as they shoved a breathing tube down my throat and I coughed up massive amounts of blood. Any other time, it means infection. I usually stay up to make sure it slows down. If it's just a tiny bit, I don't worry but I always call doctor since it's only happened a few times.

 

[kyeev]

I was bleeding non stop for 2 years til I started the Tobi Podhaler.
It would calm down on IVs and then a month or two later, start again.
Since I've been on the podhaler, my bleeding has pretty much stopped, which is a great relief.
The only problem now is I'm finding it reduces my FVC (3.2 down to 2.8) so that I'm more breathless while I'm on it (Doesn't seem to effect my FEV1).
Bah, you can't win...

 

[erock77]

I'm a chronic bleeder for the last 20 years. If it's just a bit of blood in the sputum I have a similar response, "crap" and go back to bed.
Some things I've found help are CFsource softgels (w/ water soluble vitamin k, promotes clotting), probiotics (enhances vitamin k absorption), and then during a bleed a pinch of cayenne in some warm water seems to lower blood pressure and stop the bleeding.

 

[draz91]

I have been having off and on again bleeding for about a year and half. My first big bleed led me to the hospital where I had an Embolization procedure (not fun). After the procedure, I continued to have small bleeding randomly even while I felt very healthy! So, now I have just learned to live with the blood in the sputum, the fear has passed but I never dismiss the blood. My doctor prescribed me a medication to help lower the blood pressure call Atenolol (25 mg), I think its working but every now and again have some blood in the sputum. I wish I knew what caused it and how to stop it but I'm not afraid anymore!

 

[draz91]

Whats the dose of the Vitamin K your on and which probiotic product? Is it cayenne pepper?

Thanks!

 

[erock77]

Regarding my dismissal, I meant blood in sputum as opposed to straight blood without sputum. The latter is a bigger deal and can vary in severity a lot for me, I've had 6 embolizations since 2000, but those are just when it's really scary, like 2 cups of blood in 24 hours. Not that common.

Since I'm a serious bleeder my vit k dose is high, 5mg 2x/day along with CFsource softgels. Probiotics aren't well regulated or consistent, but I've had good results with Jarrows brand. Generally it's sold in a refrigerator, I usually get it at natural food stores, can be pricey. The cayenne is just the powder spice, the stuff at health food stores can be pretty potent. Also I've found a correlation between exposure to fumes like chlorine and mold and bleeds.
Disclaimer: These recommendations are just based on my trial and error over the years along with some recommendations from medical people and patients. General CFF protocol is treat w/ IV drugs to fight the infection.

 

[jbrandyn]

I am pretty much the same way, Im gonna have to try the cayenne thing. I only get worried if it is persistent blood in sputum or just frank blood.

 

[draz91]

Excellent ideas! I'll try the Cayenne powder spice and see how it goes! Thanks and great posts everyone!

 

[CyrilCrodius]

Usually, it's more like "There you go.... :/" because I can kind of tell it's going to happen, as it usually happens after 2-3 days of pleural pain. Then I go hoping it doesn't get worse and carry on.

 

[CyrilCrodius]

Chronic bleeders : You should have your lung arteries checked for size and have an embolization if needed. Mine were 3 times and 2 times the normal size. My hemoptysis episodes went down a lot in both frequency and amount of blood since the embolization.

 

[welshwitch]

Usually it's a sign that I'm a bit run down or overdoing it in my waking life. Work, friends, bills, cleaning, the general everyday life stress that we all live with. I get my butt over to Whole Foods for some Vitamin K (yes I'm with you on that one, erock!) BTW as I recall Vitamin K is only a few bucks at Whole Foods--$3.99 or so. Then I try to take it easy for a bit. It's my body's way of saying, "Slow down!" But nothing I ever seriously worry about.

 

[erock77]

I get the prescription strength stuff, mephyton, 5mg. I just looked at some OTC vit K supplements, typically seeing under 500mcg, which is 10% or less of the prescription strength. The ADEK's and CFsource Softgels provide ~5-800mcg it in a water soluble form, which is better digested by us. It's naturally a fat soluble vitamin, along w/ vitamins A,D & E.

 

[welshwitch]

Yeah I used to get the ADEKs...but then I've had trouble locating them during the last few years. Anyone got a quick/easy way to get them cheap?

 

[erock77]

I recall the softgels have more K, so I go for that. You can get them from CF services pharmacy. I know some mail order Rx places that have it too, Amed here in SoCal.

 

[4hats]

How many of you have been told never to take Advil especially if there is a tendency for you to bleed?

 

[mamaScarlett]

How many of you have been told never to take Advil especially if there is a tendency for you to bleed?

I haven't been told never, but to use with caution. If I am already having a little streaking, or feel extra pluggy, Ibuprofen will bring on some hemoptysis. I have been told to never take Benadryl, except for severe allergic reactions.

 

[Tisha]

I've had bleeding episodes, one so severe (coughed up 500 ml of blood) that I got embolized, that was July 2010 and I've had a few episodes afterwards too. Ever since starting on blueberry pills (after reading that blueberries strengthen the capillary veins), I haven't had any bleeding episode. Harmless and if you get a powder form to strew over your yogurt and musli, it's pretty good too.