New med port and blood clot

[kenna2]

Hey everyone, I just wanted to bring this information to you guys because my doctor noticed a trend with new med ports.

I just got out of the hospital after a 12 day stay for a blood clot (that also resulted in a pulmonary embolism) that resulted from my new power med port being placed in December. My old port was 13 years old and I never had any issues with clots before. This was not a power port. My new one that was placed is a power port. The brand is Xcela. My doctor ( who has been a CF doctor for 52 years!!) has noticed a rise in blood clot cases with these new ports. He believes it might be from whatever materials they are using to make it. My port is in my upper arm, and I was lucky to have noticed my swelling in my arm because of it. It really freaks me out to think about having a blood clot and not noticing it because it was in my chest.

I now have to take Lovenox shots once a day as long as my port is in place. All oral blood thinners cannot be taken with Orkambi. Which sucks because I have horrible veins so removing my port is not an option.

 

[triples15]

Yikes Kenna, what a scary situation! I'm so sorry to hear it. I hope you're feeling much better!

That is good info to pass along regarding power ports. Does he think the problem is specific to power ports, or just all new ports being made with different materials than the old ones? Otherwise maybe you could switch it out to a regular one? That sounds like fun, right?

I had a Bard Power Port for a little over 3 years. I chose the power port because it's the only one that can be used for contrast dye, though I never used it for that. I didn't get a clot, but the catheter did break off and was almost free standing in my blood stream. They said we were lucky to have caught it when we did or could have potentially killed me. Ugh. I did not have it replaced and have had good luck with PICC placements since having it removed, so hoping to put off having another placed for awhile.

Well thanks again for the info!

Take care,

Autumn

 

[kenna2]

He didn't really specify if it was with power ports or not; just ports in general. I'm doing some research on my own to see if I can find an answer. I do know that the power port seem to be the standard on what they are placing now because of the benefit of using it with other tests as well like CT scans and what not. However, my old port was used for these procedures and wasn't a power port and the surgeon who placed it told me that there really isn't a difference between a power port and a regular port. Just the name is different. However, some places won't use a standard port to do these and I don't want to go through the stress of starting a regular IV.

My hope is that with these new CF drugs coming out that one of them will work for me and also will be ok to take with an oral blood thinner. I'm keeping my fingers crossed and going to do my best to deal with this new inconvenience.

 

[ToriMom]

I am very sorry to hear about your new port problems Kenna2. That's scary! My daughter recently had a port placed (Nov) and it is not a power port. So far we haven't had any problems. I'm not sure why the surgeon chose the type of port he did--it wasn't discussed with us. However, I am glad she has a regular one. It's a Bard.
All the best to you!
Michelle

 

[JustinS]

Power port Bard

[QUOTE=kenna

Hi Kenna. I underwent 3 rounds of chemo and i was using a Bard Power Port as well, This was in 2014 and i had it in my upper right chest. It was the last day of chemo i remember it was on a friday. On the very last day of chemo i had a Pulmonary Embolism. The blood clott was on the port, and it was actually a big blood clot. I guess some of the clot travled to my lungs as well. My Oncologists told me that if it wernt for me being young and phisically fit and healthy besides me having cancer i would have died for sure. I was in the military while all this happened and i was kina left in the dark about what actually caused it. They were saying i had a bad reaction to the chemo or aomething like that i dont really remember because my mind was concentrating on just staying alive. I feel like they just swept it under the rug and got me out of the military as fast as possible. Anyways, i totaly understand what you have been through. I hope you get better... Cheers!