Cystic Fibrosis Forum (EXP)
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Bronchial Artery Embolization
- Thread starter andycmx
- Start date
Had one in May. I wrote a post about it: http://cfnaturalhealth.weebly.com/1/post/2013/10/hemoptysis-coughing-up-blood.html
Thank you so much for the write up. That was beyond helpful. I'm 31 and two weeks ago I didn't even know hemoptysis could happen to me. Then out of no where I coughed up over a cup of blood. I've had three minor episodes since and they are closing it off tomorrow.
Honestly, the biggest thing for me has been the fear, like you mentioned. I like to think (like most with CF I'm sure) that I'm mentally tough, but this got the better of me. I'm sure it'll subside over time.
Thanks again.
Honestly, the biggest thing for me has been the fear, like you mentioned. I like to think (like most with CF I'm sure) that I'm mentally tough, but this got the better of me. I'm sure it'll subside over time.
Thanks again.
I've had a lot of issues with hemoptysis over the years. I agree that it is very hard at times not to let your fear get the best of you. I had an embolization done a couple of years ago. I had the same experience that Epona described (great explanation). However, I did not have to get a broncoscopy done prior to embolization. I think they were able to locate damaged vessels through IV contrast if I remember right. I will mention that I did have to stay overnight to be monitored. This protocol probably varies from hospital to hospital. Besides having the chest pain as Epona described, I also experienced pain with swallowing for a couple of days. This is a rare occurrence, but it helps being prepared for all possible complications. Good luck to you.
I forgot to mention that I am on Vitamin K(Mephyton)--5mg (prescription strength) everyday to help with clotting and hopefully keep hemoptysis at bay. The over the counter vitamin K is not enough to make much of a difference. Most OTC supplements come in 100mcg dosages. You would have to take 50 of these to get the equivalent of 1 prescription pill. My insurance originally didn't cover it. You wouldn't think that a vitamin would be expensive, but it is. I appealed the denial of coverage and eventually got it approved.
I've had various episodes of hemoptysis over the past 3 years. I'm 48 now. The first massive episode, which my Dr. defines as more than 8 oz., required embolization. The description by jricci was spot on. I had to stay in the hospital for 3 days, b/c of fever and terrible headache that developed after the procedure. The Dr. said it was my body's reaction to tissue dying.
I've had subsequent episodes, but have learned to live with them. I do best if I limit my vest, hyper-saline, and exercise until no sign of blood for 2 or 3 days. My husband makes me act like I'm in the hospital and rest a lot
I've been free from episodes for about 6 months now. I've limited my vest and hyper-saline to once a day. I'm not sure if this has been the key, or if it's coincidence, but it's working.
Also, I get the 5 mg vitamin K from Amazon. Make sure it's 5 mg and not mcg. I take this during periods where I'm having a lot of bleeding. Good luck, and I hope you don't have to deal with this long term. It can be very scary, but once you get used to it, it's not. Even my massive episodes reside quickly. The aftermath is gross and takes a week or two to clear up (brownish/black sputum for a while), so don't let that freak you out.
I've had subsequent episodes, but have learned to live with them. I do best if I limit my vest, hyper-saline, and exercise until no sign of blood for 2 or 3 days. My husband makes me act like I'm in the hospital and rest a lot
I've been free from episodes for about 6 months now. I've limited my vest and hyper-saline to once a day. I'm not sure if this has been the key, or if it's coincidence, but it's working. Also, I get the 5 mg vitamin K from Amazon. Make sure it's 5 mg and not mcg. I take this during periods where I'm having a lot of bleeding. Good luck, and I hope you don't have to deal with this long term. It can be very scary, but once you get used to it, it's not. Even my massive episodes reside quickly. The aftermath is gross and takes a week or two to clear up (brownish/black sputum for a while), so don't let that freak you out.
So to update. I had my procedure last Wednesday and I did not have to do the bronchoscopy. The procedure itself, I barely remember. After four hours I got to go home. I was not prescribed any pain meds and for the first two days I had some pretty decent pain in my groin.
Then two days later, I had a severe hemoptysis episode again. I immediately contacted my doctor who advised me to go straight to the ER. For some reason, I was put into ICU. That was horrible. I was in a shared room with three others who were clearly in bad shape. No cell phone, tv. Nothing but me and my thoughts. My wife, was only allowed in a few times. Then I had a second BAE. They went in the same spot so, now two days later, it's a pretty good amount of discomfort. This time though I was prescribed a pain killer. All in all the last five days have been hard on me and my family, but the procedure itself wasn't too bad.
Then two days later, I had a severe hemoptysis episode again. I immediately contacted my doctor who advised me to go straight to the ER. For some reason, I was put into ICU. That was horrible. I was in a shared room with three others who were clearly in bad shape. No cell phone, tv. Nothing but me and my thoughts. My wife, was only allowed in a few times. Then I had a second BAE. They went in the same spot so, now two days later, it's a pretty good amount of discomfort. This time though I was prescribed a pain killer. All in all the last five days have been hard on me and my family, but the procedure itself wasn't too bad.
C
carmenada
Guest
For my daugther wasn t the same.She had also 2 procedure ,but after these she had fever,chest pain,headache, need oxigen (first time in her life) and.....after2 weeks,she lost the battle. Sory if I scare you ,but I feel so devastated,so grieving and so furious, because I think the doctors wrong somewhere....