'A Patient Voice' Community

hello, H --

i have to apologize for my ignorance, but what does IBC stand for? i did a search and found "inflammatory breast cancer" (see PS1, PS2); is that correct?

did you see your dr? what did s/he say?

unfortunately, i don't know anything about ports, and since there are no other replies to your post, it doesn't look as if anyone else knows enough to respond knowledgeably. however, there is a breast cancer community here, http://exchanges.webmd.com/breast-cancer-exchange , where i know you will get emotional support and good advice. in addition, a separate but less active forum here is the breast cancer friend-to-friend community, http://exchanges.webmd.com/breast-cancer-friend-to-friend-and-pinkie-central . you may want to re-post your inquiry in one or both of those communities.

finally, other people with cancer may have had similar problems with their ports, so you might also want to check out the other cancer communities here (PS3).

i am so sorry for your diagnosis and esp sorry that this latest experience was so awful. i hope that gets resolved and never happens again! i send you many caring thoughts.

-- susie margaret

PS1 -- assuming i have guessed it correctly and if you have not already done so, you may want to look at the webMD materials on IBC, http://www.webmd.com/breast-cancer/inflammatory-breast-cancer-directory . be sure to check out all of the sections; these are listed at the left in blue ink under the green title "inflammatory breast cancer home."

PS2 -- there are other webMD materials on IBC as well, http://www.webmd.com/breast-cancer/tc/inflammatory-breast-cancer-topic-overview . be sure to check out all of the sections in these materials also; they are listed at the left in blue ink under the green title "inflammatory breast cancer."

PS3 -- a list of many of the cancer communities here is at http://exchanges.webmd.com/webmd-exchanges/cancer-exchanges . inexplicably to me, two other cancer communities are not included in that list -- the main cancer community, http://exchanges.webmd.com/cancer-community , and the main colorectal cancer community, http://exchanges.webmd.com/colorectal-cancer-exchange .

Dear Hubertfive,
I had the same experience with hearing a loud pop when the nurse tried to access my port. Unfortunately for me, the pop was the tubing fracturing. When the nurse continued to push the flush, it caused the tubing to go into my heart where it stayed for 9 days before they figured out why I was having a life threatening arrhythmia (irregular heartbeat).
Currently Im having the same thing when people try to access my port. Everyone says it feels like they are trying to stick a needle in a rock or glass. No one has been able to access this port so Im scheduled to have surgery tomorrow to have my 3rd Bard PowerPort implanted in 3 years. I find it totally appalling that I should require so many ports because Bard cant seem to make a port that works. When I was considering getting a port I was told that ports can and should last up to 4-5 yrs. Then why am I going on my 3rd port in 3 yrs. Thats certainly not 4-5 yrs each!
Its very possible that the pop you heard was the tubing fracturing as well. Definitely have your doctors take a chest xray. Thats how they found out my tubing had gone into my heart. It could be that your tubing is fractured but it hasnt migrated to your heart. You better pray it doesnt because that is very life threatening!
Also, the feeling of them hitting metal probably means that the port has flipped and they are hitting the side or bottom of the port instead of the face. A chest xray can diagnose that issue as well. Because you can see the 3 nubs on xray when the port is where it should be. If the 3 nubs dont show up on xray it very well could be that yours has flipped too.
Either way, get to your dr right away. This is nothing to mess around with and your life could be in danger.
You'll be in my prayers,
Ciaranani

hello, all --

i have compiled a list of all of the threads i could find on bard power ports at http://forums.webmd.com/3/chronic-disease-and-disability-exchange/forum/979 . looking at these will give you a good idea of what problems are out there plus contact info for several of the people who have had problems such as yours.

i have also compiled a summary of the procedures for making a complaint to the FDA, http://forums.webmd.com/3/chronic-disease-and-disability-exchange/forum/980 (with extensive borrowing from one or two of the messages here, thank you very much!).

as far as I can tell, these two lists are accurate up to july 4, 2012. I hope they are helpful to you.

-- susie margaret