embolization

[Joblazer86]

Has anyone had a embolization before? I haven't and my nurse stated that if I can not stop the bleeding in my lungs,which has been going on for about almost 2 months,that I might need one. I do not like the sound of someone going into my lungs and the fact that it can cause a collapsed lung. just wanted some info about the experience and any tips on stopping the bleeding.

 

[dresapp]

Hi
Ive never had this done but I do break a lot of blood vessels and have a had a few large bleeds. The topic came up but my CF doc and Transplant Doc said that they generally only do this in an emergency situation such as if you came into the hospital with a large bleed and they couldnt stop it than they would go in and do it. They do however sometimes do it on someone who has frequent large bleeds to prevent a massive one but its rare. Ive heard of a few ppl having it done but it doesnt always completely stop it. Sometimes they wil start bleeding somewhere else in the lung. Im not sure what the risks are other than that any surgery has its potentials. I havent heard of anyone having a collapsed lung from it tho. I would ask your CF doc more about it. Good luck!

Kris
22/f with CF, CFRD, CFRliver disease, waiting for a double lung and liver transplant

"im still not done living yet!"

 

[Diane]

Hi Joseph,
I have had two of these done, and ill tell you whats what about it so if you need one you wont go in uninformed about whats about to happen. They will first want to give you some sedation , not put you completely seleep, just enough to make you drowsy and feel relaxed. ( i opted not to have the sedation, because i hate the feeling of being drowsy, and it does not relax me....lol ) The intervention radiologist will then inject some anesthetic into an artery in the groin area. Then after a little while he will go in with a long catheter (you dont feel a thing) and go up into a lung. They then inject dye into you....... Now i hated that process because it does make your whole body feel warm and feels like you peed yourself. Then he will look on a monitor while he probes in the lung and try to find the bleeding vessel. When he finds it ,he injects ( thru the catheter) some gel like stuff that blocks it off so no more blood flows thru that vessel. Once it is all done the remove the catheter and have to press hard on the area for about 15 minutes to insure there is no bleeding from that artery. The you go back to your room and have to lie still and flat for about 6 hours. The embolization itself takes about 2-3 hours. It sounds like a long time but it goes by faster than you would think. NOw it is true that you can bleed again, BUT it will be from a different vessel, since the blood has to find a different route, it may find a different problem vessel. I have nevere heard of anyone getting a collapsed lung from an embolization, If the intervention radiologist is very skilled you will have nothing to worry about. I asked mine right away how many he has done before and he jokingly told me i was the first.... I was like ...."WHAT!!!!!", then he laughed and said he has done thousands, and i felt so much better. He did my second one also, and i saw him about 5 months after it all, and hugged him and thanked him for saving my life. I had VERY large bleed the first time, and a much smaller one the second time. I still do get lung bleeds from time to time, but they are small normal amounts, Thank God. I hope this has helped you some, and if you have any more questions feel free to email me.......... jinxnick@aol.com
~Diane 39 / cf / diabetes / b.cepacia

 

[anonymous]

I too have had an embolization and it was much like Diane's experience. There were a few things different though...I WAS put to sleep and they used tiny platinum coils wrapped in cotton to clot the artery. I also remember I had to lay flat on my back without moving for more than 6 hours. That was the worst part...lying flat on my back for so long gave me the worst back pain I've ever had! They gave me morpheine but I ended up being allergic to it. Hopefully I'll never have to have another one, but it sounds a lot scarier than it was! Good luck!

 

[Joblazer86]

Thanks for the explanations on that and your experiences. From what I have read I do not think that I will need this procedure but my nurse said we would discuss it on my next visit. Thanks again!

 

[anonymous]

Hi Joseph,
I bleed all the time. We're talking daily, for over a year. Yeah, it's really horrible! It's to the point that I cannot lay flat in bed because I'll bleed. (it happens every time I lay flat, and sometimes when I'm standing, etc.)
Last month when I was at the dr, we talked about going in to clot the problem. Yeah, I'm not happy about that, but I'm more upset with bleeding everyday and having it be a problem, so clotting it off would be the lesser of 2 evils. They talked about using styro-foam balls or a metal spring. (yeah, they both sound wonderful being placed into my body?!) They would go thru an artery in my groin and using CAT scan (and other things I cannot remember the names of) and clotting off the bleeding in my lungs.
On the other hand, on this forum, I read where a person was placed on a transplant list because his/her lungs would not stop bleeding (and lead to other major problems). So I'd rather take care of the problem before it would/could progress to that state.
That's pretty much all I know on that. (And I hope this was somewhat helpful to you and not just horrible, that was not my intention)
Good luck to you.
-Kelli
27 year old, female, with CF.