I haven't coughed up blood in months, if not a year. It even escaped my mind that I could spit up blood. I know I have posted a comment about this topic before, but it got me thinking. Is this what CF is. Am I deteriorating, slowly, but gradually? Should I just learn to live with it, as the doctors keep telling me "it's normal for a CF to cough up blood"?
Well, no, I don't think I should live with it. They said its normal for a CFer to be in and out of hospital, and I still haven't been in. It's "normal for a CF" to cough, amd get up mucus. Yea I cough buts it's due to my asthma and running rather then coughing from phlegm. Iv also been told that "it's normal for a CF" to be on IVs most of the year. Well I haven't started those yet, and it's 26 years and I still haven't had one. So, no, I'm not taking this crap that's "it's normal" for me to do this. People thought it was impossible to run under 10 seconds for the 100m, u til someone did it, and now it's not even considered fast if you run 10 seconds.
The first time it happened, I was going to get my hair braided!!! Yes, I think I'm black!!! I was in 5th year, and I just got off the bus, and going to meet a friend. I spat out a spitful of blood. Just pure blood, as in a nose bleed, but from the mouth. I thought I was dying. I sat outside a shop for a bit thinking, I need to cry, and I need to get myself to a hospital. I waited to see if it got worse. It didn't, so I went to get my hair done.
Out I popped looking all gangsta with my new hair. It was a funny site seeing a white dude with corn rows in his hair. I must get that done again, but I think Yaz will dump me if I do. Also, I don't think anyone would want to get treated with an injury from a fella with corn rows!!
I have ruled the blood spitting down to two things. Well, actually, 3 things.
1. Spicy Food
2. Airplane journey
3. I'm not sure!!!
Spicy food in Chinese Medicine, makes the blood boil. So what happens to a pot of water when the water boils? It boils over the top. So, when the "blood boils", it has to escape from somewhere. But why my lungs? Why do u have a cut or whatever it is down there?? That's one theory.
The other theory is that, the dryness and the cabin pressure does something to my lungs and I start bleeding if I do any sort of exercise the day of flying. So I dont run when I fly. Just to make sure.
The third reason is full of other reasons, under the category of "I'm not sure". So here is the list;
-Dryness (as explained already)
-Reaction to a particular nebulizer treatment (e.g. Pulmozyme or Hypertonic saline)
-Bronchiectasis
-Vitamin K deficiency
-Overexertion
The over exertion part, I think could play a part. However, I do not stop running when it happens, so if it was a case of this, then it would continue on my run.
Vit K. Iv never been tested for this, as far as I'm aware. Vitamin K helps the blood clot. If this was the case, then if I cut myself, I would bleed more, which I don't, so I don't think it's this.
Bronchiecstasia....it's not this!!!
A Reaction to my nebs. Yes. It could be this. That is one of the reasons I stopped my Pulmozyne. But I'm still bleeding, so its not this. I'm still on Hypertonic Saline, but only every second day. This might still be a factor.
Dryness. I already explained this. This is also combined with the hot blood story. Spicy food dries up the bodies fluid.
So I'm seeing Prof tomorrow. I will go through my thoughts with him. He's probably annoyed that I keep asking him questions about lung bleeds, amd his response is always the same. But like I said, I'm not taking that as an answer, I dropped in a sputum (a sample of phlegm that they run tests on to see if I have any infection they need to worry about). So if there is nothing in the sputum, then that means its not an ongoing infection that results in lung bleeds. Fingers crossed I'm right. I shall let you know how it all went tomorrow night!
Adios
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ReplyDeleteEvan I think the docs telling you some things like its"normal for a cf person to have ivs" is plain wrong.I have had them only twice in my whole life(and one was when I wasn't doing the treatments self induced).The problem I feel is they are just medical professionals and don't know our body's individually.They sometimes dish out drugs when we don't need them (on another note a mate with cf I use to know had very serious kidney disease cf related and they were prescribing him drugs that had serious after effects for the kidney!!!! ). Similarly myself with stomach probs Ive had in the past the medics have wanted to operate yet I know from 28 years experience that certain medicines will do the trick and had to tell this to a so called cf professor!!)
ReplyDeletejust keep battling on and doing what your doing.Proof is in the pudding hence look at your lung function =quality.Yes I feel sometimes you have to listen to what they say but don't take it as gospel
all the best Richard
One doctor explained to me that when the lungs are damaged, say like in Bronchiectasis, blood vessels in the lungs get damaged. So the body creates new vessels around the scarred spot in the lungs. These new little blood vessels are fragile and can't take the pressure that normal vessels take, so they burst easily. They tell me that that is why I cough up blood.
ReplyDeleteThe first time it happened I really freaked out! I still do! It is a very scary thing to see.
Mine seems to be connected to physical exersion. I still would like to know what activities I should avoid to keep this from happening. That's one of the questions I need to put on the list for my next doc visit.
I hope you can figure your's out!