My daughter got her first chest port in July 05. She used it for 6 months before problems started with infusing. By the one year mark infusions were slower, flushing harder, and blood draws inconsistant. After 2 port dye studies, it was replaced. That was 6 months ago. It was not long before we began experiencing lots of resistance flushing it, and problems with blood draws. We stopped drawing blood through it, and used the cathetor flush two times. It got it cleaned enough so it will infuse, but still there is resistance. The past two weeks it has gotten really bad again with a 1 hour infusion taking up to 3 1/2 hours. Pushing saline is always hard. We are trying another cath flush today. We are not sure if it is the port or junk in it. The port dye studies didn't show anything with the first port, and we fear even if we resort to one, it won't show anything this time either, though it is our next recourse.
I just wondered if there is anyone else out there who has had trouble with their ports such as this. We feel it could be a valve issue in the port itself but find it odd the same thing happened with both ports...
Any ideas are welcomed!!
Posted by AP (Member # 8430) on :
What port are you using? Mine is the Boston Scientific Vaxcel Implantable Port with a PASV valve.
From what I understand, with the nature of the valve in the port, infusions can take some time. Mine is still only a month old, but it's never been as speedy as the PICC lines I've had.
My suggestion, call the manufacturer. They were very helpful at Boston Scientific when my nurses couldn't access my port.
Posted by arg82 (Member # 161) on :
I have had a port for close to 3 years now and I haven't had the kind of trouble with mine that your daughter is having (and has had in the past). I'm wondering a few things.
First, does this happen consistently when it's newly accessed or does it seem to get worse the longer a needle is left in place?
Also, has your daughter been tested for hypercoagulation? I believe this could cause clots to form in the catheter and make it more difficult to use and eventually stop working altogether.
And have you tried different gauge needles? I'm not sure if that would help or not but it's a thought.
I hope you can figure this out and make the port work again!
Peace and healing, Annie
Posted by HOPE4290 (Member # 7926) on :
Thanks for the ideas. Annie I have wondered if her blood isn't thicker and never have had that test done. We have reaccessed and changed needles, guages, length. Nothing helps. Since I posted, the port is not infusing. I can get the heparin in barely, but it won't infuse the meds. She has a port dye study scheduled for Friday. She has tried using the Cath flush which helped last month, but didn't do a thing last week when we tried it. Thanks both of you for your ideas.
Posted by stymielymie (Member # 10044) on :
the iv supplier has a solution that can dissolve the clots. i did not know this at the time and pulled my picc line, for fear of clots.
docdave
Posted by arg82 (Member # 161) on :
Ugh, sorry to hear the cath flow didn't help. I've actually been talking a bit to your daughter directly through another group we both belong to (I put two and two together that she was your daughter when her story of what was going on sounded far to similar to what you had said for it to be another, separate case).
I hope the port dye study shows something that is fixable or at least sheds some light onto why it's causing so many problems. And if she can be tested for hypercoagulation that might provide some answers and save future lines!
Keep me updated!
Peace and healing, Annie
Posted by HOPE4290 (Member # 7926) on :
I actually told my daughter to talk to you, as you are always such a help with your knowledge and insights on ports.
We asked the Dr. and she has been tested for hypercoagulation and it is not a problem, and a her weekly labs are not showing a problem either.
The port dye study showed a clot on the end of the line. She said the doctor kept zooming in more and more and confirmed it. They used the same TPA-Cath flo that we had used, but at a higer concentration I think, and with a pump to infuse. IT WORKED!! The clot dissolved and the port is working better than it has in months.
I am wondering why she seems to get clots so easily on her lines and will talk to her doctor when we see him Friday. We will have Cath flo on hand so if it slows down again like this, we will use it right away to see if it works. The doctor said we are always welcome to return to the hospital to infuse it with the pump to if needed.
The doctor also said the the end of the cathetor, the lumin, is in excellent placement so that fibrons should not be an issue. They are a problem when it is not low enough in the vein. So that was a relief to hear.
It is working so well, I can't believe. Months of prayers finally answered.
Thanks to you all!
Posted by HOPE4290 (Member # 7926) on :
Only weeks have passed and it is starting to have resistance again when flushing. Her doctor suggested we see a hematologist to see if we can find out why she clots so easily in the line and we are seeing one on Tues.
We also may do a regular regime of cath flo to keep the line open every 3-4 weeks.
I hope we can figure this one out!
Posted by lymeout (Member # 8045) on :
How was your daughter tested for hypercoagulation? My daughter had problems with clotting and saw a hematologist who found a protein S deficiency. It is supposed to be genetic, but neither her father or I have it. Her LLMD says that it is acquired and that chronic infection causes it. She and the hematologist did battle over whether to use warfarin or lovenox. The LLMD won out, she did the lovenox for several months and now maintains on lumbrokinase. Her port flushes like a dream, and her blood draws are great.
I hope you get your daughter's problem resolved.
Posted by CaliforniaLyme (Member # 7136) on :
Up up up- maybe you could write her private box because this wasn't up on top-last one sounds like a very good comment she'd like to read asaP!! Best wishes, Sarah
Posted by lymeout (Member # 8045) on :
How was your daughter tested for hypercoagulation? My daughter had problems with clotting and saw a hematologist who found a protein S deficiency. It is supposed to be genetic, but neither her father or I have it. Her LLMD says that it is acquired and that chronic infection causes it. She and the hematologist did battle over whether to use warfarin or lovenox. The LLMD won out, she did the lovenox for several months and now maintains on lumbrokinase. Her port flushes like a dream, and her blood draws are great.
I hope you get your daughter's problem resolved.
Posted by caat (Member # 2321) on :