I was in my early 20's the first time I experienced coughing up blood. I was in a Pizza Hut after leaving the CF clinic visit, which the drs. said I was doing well. It started out as a little cough and some blood in my hand. My mom saw it and immediatly rushed me into the bathroom where it became bad. I was spitting in the sink when a lady just acted like I was disgusting. I rushed back to the hospital and was adimitted and given I.V.'s. It is very scary but my drs. assured me that it really isn't as bad as it seems. Hang in there and take one day at a time. By the way, I am now 40.

I have had this happen many many times. My first time was extremely scarry because there was lots of blood, so much that I was choking and couldn't catch my breath. I lost enough blood that they were considering a blood transfusion. But it slowly diminished on it's own. I was admitted for about a week. They told me that it was most likely a tear of a blood vessel and that it really wasn't as horrible as it looked, and that it would probably happen again since that blood vessel was now weak. And they were right. It happens almost everytime I am sick, not always quite as severe as the first time. Now I don't panic, I just cough and then it settles down and I call the hospital and am usually admitted. The doctors said there is a procedure called a pulmonary embolization where they go in through the artery in the groin, up to where it's bleeding and insert little metal coils. This apparently is supposed to stop the bleeding??? But apparently, I was not coughing up enough blood, although this had happened like 7 times in a year. They said that I would need to be coughing up cups and cups of blood for days and days!!!! Anyway, hope this helps.

I have also had hemoptysis and I know how scary it is. My first episode was in my teens, and it happens every 5 or so years for me. The doctors have also assured me it is "normal" with CF and not to worry to much. Whenever it has happened to me, the CF team assumes I have an infection and I go through a clean out. I have been told it can be a serious problem if the bleeding does not stop and floods the lungs, but otherwise, if the coughing up blood stops, it seems to be considered a normal part of CF.
I have also had a PICC line hit nerve in my arm, and I know how scary it can make PICC lines. We just stopped using the arm that the problem occurred, and then eventually, got me a medi-port (a sorta permanent IV that lives under the skin). I would recommend the medi-port, if that helps. Feel free to email me if I can answer any questions. It is hard to say everything here.

Hi everyone. I just thought I'd let you know that it's been a week since the hemoptysis started, and it has stopped. Thanks to online research and especially advice from here we stopped all hypertonic saline, pulmozyme, and most Xopenex treatments. Benjamin was nebulizing with Bronchosaline every 3-5 hours for the first day except when I fell asleep once. The bleeding stopped for almost 12 hours then it started up again, and we tried to keep up with the Bronchosaline, and it really seemed to help. He took off his scoliosis brace for a few days because it seemed like Benjamin needed no restrictions while he was going through the worst of the blood. Yesterday was a regular clinic appointment, and I had braced myself for a major lecture. I don't know if it was mye tears when I pulled the nurse to the side to explain what had been happening without Benjamin right there, but I saw a tear in her eye. I explained that everytime I would ask him and try to make him understand that if he wanted me to stay up all night and watch him sleep, and be there if he needed me then he probably needed someone like the nurses to watch him, he would beg me, crying, not to take him to the hospital, and I had to respect his wishes. For the first time, I felt like she almost understood that it is his body, and his life, and his choice. The trouble is I felt this way long before the law agreed with me. He's only been 18 and legal to make those choices for almost 3 months. Any way it took a long time to get to the point here. Benjamin is entering the hospital today to start a course of IVs and some inhaled steroids. The oral steroids would mess with his blood sugar again. Everyone at clinic was so nice to him I was surprised and we were out of the office in about 2 hours instead of the normal 4+. If all of his clinic visits were like this we wouldn't be seriously considering going out of state for our CF clinic.

Cody has been living with hemoptysis for over 2 years now. Just about every time he coughs up mucus, there's blood in it. He's spent months in the hospital and all they can do at this point is to lower his breathing treatments to once a day. There is much more to the story but you get the basic idea ... you can live with this. It's scary at first but you get use to it. Keep your eye on the out-put and DON'T swallow it! Cody, my 19 yr. old son, had strange seizure type episodes that may have been caused by this.