Hemotopsis (Graphic)

G

Grendel

New member
I coughed this up last night around 1 AM. When it happens, it seems to most frequently happen when I go horizontal and get relaxed in bed. It is then that I begin to gurggle in my lung. And then through the magic of home cinema I captued a photo for you all, and have attached it for your viewing pleasure.

How bad is this in your experience on a scale of 1 to 10? Would you bother telling your doctor about this? How often do you experience this?

Thanks.
Grendel
 
C

ccflewallen

New member
In october of 2001, I coughed up probably a cup of blood all at once. It was reallllly scary and it landed me in the hospital for nine days at Vandy. Of course this was a one time thing to be that bad. What I see that you have coughed up looks pretty bad but I dont know how serious it is. But yeah I think I might tell the doctor. I do cough up very small amounts of blood from time to time and I always get scared. My doctor said if it ever gets as bad as it did last time, I need to be flown to Vanderbilt right away. Mine was caused by bronchitis and allergies in the summer air. Probably the doctor will to a tb skin test and a sputum culture for sure. Beyond that I have no idea, but you should tell your doctor. How often do you see the doctor? That is usually a question I get asked everytime I see mine.

ccflewallen
Chris
 
A

anonymous

New member
I use to see them once every 3-5 months depending on how well or poorly I was doing. But lately, due to the prohibitive cost of seeing the doctor, and because the last two times I went in they virtually just looked at me, asked me a dozen questions, and said, "Here are 2 pills, take these for two weeks and if things get worse call me," I haven't seen them since January. I pay $300 to hear that crap. I could get that over the phone. I could treat myself if I could send in the labs and get the results. And when I use to cough up blood like this they once said, "ugh? If it gets worse call us." They didn't seem too confident. So I don't bother telling them any more, or at least I haven't told them in over a year. It is different to get another CFer's opinion. Some how it seems, more sincere and thoughtful.

Thanks.
Grendel
 
C

ccflewallen

New member
Uhhhh..... who in the crap is your doctor? Sounds like you need a new one to me. I agree with you. If my doctor started that stuff, he/she wouldn't see me any more. It's amazing to me the people and even doctors are so uneducated about CF. Where do you live? If there was any way you could go to a the clinics at either Vanderbilt or Emory Universities, I would suggest that. They know their stuff, and they dont beat around the bush with this "take two pills..." stuff. At least not in my experiences. Really, I am not real sure about Atlanta (Emory) because that was where I went when I was a kid. I saw Dr. Caplan and Dr. Weatherly, and I don't think either of them are still at Emory. Hope you can find a doctor soon, because you dont need to just let this go on until it gets to bad. God Bless.

ccflewallen
 
J

JazzysMom

New member
I have coughed up just as much or more than that at any given hemoptysis episode. I am sure if I called the doctor each time they would want me to come down, but even if its the right thing to do it is always that easy. Unless I am having weight loss, loss of appetite, fevers or something else I do my usual home routine. I take extra Vitamin K tabs, I drink plenty of ice water, dont lay flat, rest, dont exert myself in any fashion & if need be put ice packs on my chest. When things have been bad with the bleeding it might take a few days for all of it to go away. It usually goes from full blood, to mucous with mostly blood to streaking to nothing. I also have my Cipro, Tobi & now Colistin (hate it) to use if I feel its necessary. My hemoptysis doesnt go untreated altogether. I just have learned when to call the doctor & when I can handle it. If for some reason after the first 24 hours of the first blood things arent right I dont screw around, but usually there is no need. Everyone is different & I am sure many, many people will say that I shouldnt play "doctor", but after dealing with it for 30 years I think I have an idea!
 
K

kybert

New member
lol. i was reluctant to look at the pictures at first but then i thought 'hey i should really know what this person means'. first pic was ok but the closeup... i feel really off after seeing that <img src="i/expressions/face-icon-small-shocked.gif" border="0"> lol! anyway, that amount isnt anything to be alarmed about but its important to mention it to your doc next appointment. like jazzysmom said if it gets worse or you dont feel right afterwards call someone. and of course, if it gets really bad, off to emergency.
 
E

EB24

New member
Iwas in th ICU for an unrelated problem and had a bleed and I vomitted 4 liters of blood. Thought I was dead. Got a transfusion and got to eat an endoscope for a snack( LOL) to get the bleed banded. Scariest moment of my life.

I hate this part of CF the most I think. An all around scary thing.
 
D

Diane

New member
Are you on Mephyton ( vit. K) ? The amount of blood you coughed up would scare me, but i have had much worse in the past. I had to have 2 embolizations due to sub-massive bleeding, so i know the fear of coughing up blood. I also noticed it happening when i would lay flat or lean over too far, or right before my menstrual cycle. I no longer lay flat to sleep i lay propped up on pillows on the couch, and i also take 10 mg. vit.K each night. I am taking 3000 mg of L-Lysine to also help with the bleeding. I thought after 2 embolizations i wouldnt have any bleeding anymore, but i still do, Smaller amounts Thank God, but the odd thing is , they are still for all the same reasons....laying a little too flat, leaning over too far and my cycle. The best thing you can do when you sough up some blood is.... try to remain calm, you dont want your blood pressure going up any more than it already is, sit in an upright position, no laying flat for a while, try not to cough TOO hard while coughing it out, you dont want to aggravate the problem. If you arent on vit.K see about getting your doctor to prescribe it. If hemoptysis is an ongoing problem you may wish to giving L-Lysine a try, it has certainly helped me a LOT!
 
I

ihatecf

New member
lol grendel nice pic... what a coincidence grendel I also had hemoptysis this morning and im going to the club med to be hospitalized tomorrow. I just cant keep off out of hospital ( aint my life getting so cool !!!). It will be my 3rd tune up in 2 months. I cough blood so often these days . According to your pic I think its just like mine 2day. You have to tell your doc bec may be your cepacia is throwing a party. hang on there. take care
 
L

lovingBenandCambree

New member
Well I just realized what a weak stomach I have. I always knew it wasn't great but I thought "okay, Emilee you can do this, how many times have you coughed up blood?" I looked at it and thought I was fine and then dry heaving like no other until I lost my lunch. I am horrible. Anyway to answer your question as to whether you should tell your doctor. My doctors rule of thumb is that if it is more than 1/4 of a cup then yes you need to be seen. Otherwise I usually just call and chat with him about it. I pretty much make my own diagnosis now and my doctors really listens and usually agrees with what I think. YOu know your body better than anybody. I too think that you need a new doctor. I can't believe that is how they respond to you. Where I am from we really only have a choice between two docs and they are both on the same CF team so hopefully you do have other options there. Good Luck!!! Let us know how things go. I know that it can be very scary. It is some of the scariest times in my life that i have had. I have had three embolizations and so I do understand what you are going through.

Emilee
 
C

ClashPunk82

New member
This is new to me because I have never coughed up blood. But that looks like enough to let the doctor know about. Did you take that oic right after it happened? The blood seems almost gelatinous.
 
C

ccflewallen

New member
I agree with EB24. Blood is scary; especially when it is coming out of your mouth. It is the scariest moment I have had in my life to this point. It was the first time I really thought I was going to die; seriously.

ccflewallen
 
G

Grendel

New member
I took the photos as it was happening. And it is pretty thick stuff, there isn't really any mucus in it, just thick secretion. THough I think twice before, awhile back, I coughed up more pure liquid blood. Now adays it seems thicker.

I am looking to go to other doctors. Hopefully something GOOD will happen...sometimes just saying it could even make it happen.

Thanks for all the input.
 
You must log in or register to reply here.
Top