Friday, March 5, 2010

My First Experience with Hemoptysis

**Reposted from August 2009**

I present to you the first edition of First Friday. I believe this idea came from Casey who wrote a blog about his CF "firsts"(click here to view) a couple weeks ago. Here are some examples of other's "firsts" blogs (that sure was a lot of the letter "s" at the end, how far off was I grammatically?) from Piper, CysticGal, Chrissy and Megan (if I missed yours and you'd like to be included, please shoot me an email and I'll add it).

What I've decided to do is highlight ONE of my CF firsts every Friday and try to capture exactly what happened and what I was feeling in that moment. It can be very scary experiencing something for the first time, so hopefully you guys can use this and other CFers' blogs as resources when those times occur.

My first bout with hemoptysis reared it's ugly head at about age 12. I distinctly remember coughing up so much junk that I ran to the toilet to spit it out. Now, for me, that was a big deal. Back then it didn't bother me at all to swallow mucus that I had coughed up from out of my lungs. Today, it's a different story, and I try to spit it out into a tissue (or on my floor). But this particular coughing festival produced much thinner mucus than I was used to and it did taste a little different than normal, plus, it was filling up my mouth. So I ran to the toilet to spit it out. Low and behold, my mucus was red. First I thought, "man what did I eat that made my mucus so red". Remember, I was a kid, a healthy kid, and hemoptysis wasn't even in my vocabulary.

As I leaned over the toilet and continued to cough up that lovely warm red stuff, it hit me, "Wait a second, it looks like blood and now it tastes like blood, hmmmmm, it must be blood!" Here's the deal though, I didn't panic. I don't know why and I still can't fully explain why I don't panic now 17 years later when I'm coughing up CUPS of blood (although I admit, coughing up multiple cups of blood while in CHINA, didn't produce the calmest of emotions). Back then, I remember thinking "this is kind of cool". I don't even think I told my mom or grandma (I was at her house when this happened) about the episode. I'm not a big fan of having people (especially my mom) worry about me. I do however know that people (especially my mom) worry about me already without bringing anything else to the table.

What's strange, is I didn't have another case of hemoptysis until well into high school or maybe even until college. After the age of 20 though it was pretty common for me to have a bout or two in between hospital stays. I would usually cough up around 1-4 tablespoons per bout. In recent history, I've been embolized twice for the hemoptysis, in November 2005 and February 2009. Both procedures were considered a success and I had very little bleeding between the two embolizations. Since February's procedure I have coughed up blood twice, but it was very little and during a run.

So there it is, my first experience with hemoptysis...wanna tell me about yours????

PS- I'm hoping to get no responses because none of you have ever experienced coughing up blood :) I can hope right?

7 people had something to say...:

Katelyn said...

I was in high school, maybe fourteen or fifteen, and it just started coming up. I had never heard of it or seen it and it had never been mentioned so I thought I was dying - a little dramatic, but I think the episode warranted it. I jumped out of the shower and found my mom between spurts of blood and she calmed me down and then we called the doctor. She remained very cool and collected, but later she told me that she was mentally terrified. Obviously, I didn't die and thankfully I haven't had another episode since.

Deb said...

i don't think i even know what to say or how to even go about expressing what i am feeling right now. this sounds so crazy, i know, but i am very filled with an entire host of emotion right now. i am sure you were not expecting this sort of reaction to your post.

finding you must have been divine providence? a coincidence? a miracle??

yesterday afternoon, my son coughed up blood for the very first time in his life. EVER. from perfectly(ish) healthy to this. I AM FREAKED OUT.

i'll let you know when my post about it is up. mine won't be as calm as yours. believe me.

anyway... thanks, once again, for sharing your life with us. you really are helping others!

Pegson said...

I started having bleeds of a huge amount back when I was in year 10(16 years) back than It didn't scare me that much but that was because I wasn't so informed it dissapeared for 3 years until about 19 years...ever since than i have constant spotting and streaking of the mucus and every few months a big bleed i now call a blow out..when i was 21 i went away for 2 weeks healthy as came home had 10 bleeds in 3 weeks of huge amounts..four embolisations later im back to pink stricting and spotting and the odd medium sized bleed.
I have figured now that bleeds are completely random they can happen while im sitting coughing running sleeping nothing can predict them although exercise gives it a more chance of happening.
I have also found that i do bleed more after being sick and getting well. its like sickness causes the weakening and than wen im well and do more exercise it blows it out...

lol i just rambled..

LauLau said...

My first (and only) bout of hemoptysis was when I was 13 years old, it feels weird to say that it was 6 years ago though it seemed like only yesterday. It was actually on superbowl sunday and the Patriots (my home team!) were playing. I had been in the hospital and was doing my first at-home "clean out." I woke up in the middle of the night coughing up blood, just like you said, filling up my mouth. I was actually really scared, I didn't know what was happening, so I woke up my mom. She said she'd call the doctor if it was still happening later in the morning. Well 5 hours later when I woke up again I was coughing up tons and tons, probably cup size amounts. So we went to the E.R. and it turns out I was losing so much blood that I went into shock and the next thing I knew every E.R. doctor was in the room.. though I didn't even realize how sick I was. Long story short, I had a blood transfusion (they told me it was Tom Brady's blood... they obviously lied) and watched Snow White on a tiny little T.V. I woke up in the I.C.U. and was preparing for embolization when the bleeding stopped so I didn't end up having the procedure. Needless to say, I'm alive and it luckily hasn't happened again, but it was probably one of the most significant of my CF experiences!

OceanDesert said...

I can't actually believe now hearing everyone else's stories that I didn't have any hemoptysis until I was 27 or 28, but the first one was a major one and scared the bajeeesus outta me... got it embolized, but still ended up in the joint for a month due to infection that followed.

Just wondering, I had to be put out and on a vent for the emobolization, anyone else?

Somer Love said...

I was around 19 but it wasn't bad at all. This last April was bad it wouldn't stop it just kept coming up and out so off to the ER I went. Only to have it stop a mile from the joint. I still went tho I was scared not going to lie!

Tricia said...

I was 12 as well. It was at a friend's house, we were playing in the backyard. I freaked out and didn't tell my family the first time it happened. From watching the movie about "Adam" when I was little who had HIV and coughed blood right before he died at a young age. And the experience of a foster girl who lived with us and passed away from cf at a young age. I too, thought coughing blood was my demise. But eventually I told my family, and spurts of it later on inlife didn't freak me out as much. I will say, I had a seveth sense that before it happenned, I could just feel it. Weird.