My Port-a-cath clotted...

[22cyclist]

When I had a round of IVSM that ended on Thanksgiving, the home care nurse was supposed to come and deaccess my port (remove the needle as the port is implanted under the skin). When accessed, it has to be flushed everyday with heparin. I had some for that Thursday, so it was no problem she did not show up that day.

The next day I called the home care office they said someone would be out that day...nobody came. This went on everyday until Tuesday when I went to the hospital and had the line deaccesed. When the infusion clinic tried to flush it, it would not flush, nor could they draw blood.

So now I have to go through another surgery just because that home care company was negligent. If they hadn't told me each day that a nurse would be out that day, I would have gone to the ER, or the hospital to have the port flushed. I am furious! I am not quite sure what to do from here, but I don't think that my insurance or myself should have to pay for a surgery that they caused the need to occur.

What do you guys think?

[palmtree]

I don't like to think in terms of lawsuits because of the stress and adversarial relationship it creates, but it sounds like you have a case for a medical malpractice lawsuit.

And I know how hard it is to sue medical people, I tried once.

To have to have the surgery all over again because the health care agency takes their playtime a little too seriously is inexcusable. They are responsible with a capital R.

In the meantime we all wish you the best with the re operation. You've been such a role model of courage and optimism. Being absolutely furious would be appropriate right now.

[polopuppy]

I have a Medi-port and have had previous PICC lines. I developed clots in both but they were successfully treated without removing my access device.

Alteplase was used and it worked very well. Did they try to inject some sort of thrombolytic? It would worth trying so you avoid surgery and the recovery from another port placement.

Did they try repositioning you and your arm while trying to access the port? You can ask your doctors to do a contrast study to visualize the clot. I would definitely recommend the
alteplase though. It will clear more than 70% of clots after one dose and 90% of clots after two.

Good luck and I hope you have success with a non-surgical solution.

[Kimba22]

I have a Medi-port and have had previous PICC lines. I developed clots in both but they were successfully treated without removing my access device.

Alteplase was used and it worked very well. Did they try to inject some sort of thrombolytic? It would worth trying so you avoid surgery and the recovery from another port placement.

Did they try repositioning you and your arm while trying to access the port? You can ask your doctors to do a contrast study to visualize the clot. I would definitely recommend the
alteplase though. It will clear more than 70% of clots aft'er one dose and 90% of clots after two.

Good luck and I hope you have success with a non-surgical solution.

Lisa,

My media port clotted as well. After the home care nurse could not draw blood during one of her monthly visits to flush it, she contacted my MS Specialist. She thought it had to removed. Because his nurse was on vacation (she's the one who handles all this stuff), my MS Specialist put in an order to interventional radiology to remove the port (he left off the order that they should try to flush it first.).

After it was removed, it was checked, and they were able to flush it! (They said it was not unusual for them to clot, and quite often they could flush them under fluoroscopy). They told me they could've saved it, if only my doctor had written on the order to try that first. He also didn't put on his order to implant a new port and then I had to have another surgery a month later (in another location, because of the scar tissue forming in the old site ... and because of previous pacemaker and pacemaker infection surgeries, there weren't a whole lot of places to put another one.). Talk about being mad!

I hope it can be flushed so another surgery is avoided. (You might want to double check before you go in that your doc's order includes that they should try to flush it first .)

Best of luck and please let us know how everything goes.

[22cyclist]

Polopuppy: They had me in all sorts of positions trying to flush the line. They have not tried the clot buster yet. I hope they do that first, but who knows. I will certainly ask about that. I have had PICCs that have clotted too. They clot quite easily.

Kimba: They did try to flush it, and were able to get a tiny bit of heparin in there, but less than 1cc. What a nightmare for you! I also have a pacemaker implanted so limited chest space for implantation.

Lisa

[bree2013]

Lisa - I just want to say I sure hope 2015 is better to you...you've had such a rough road this year

You're in my thoughts and prayers for this current flair to subside quickly and you recover from any lingering ill-effects. Hopefully non surgical means can be used to keep your current port.

Bree

[Seasha]

LISA

I would be really upset too
Let us know how this resolvers itself and know that all of us are sending prayers your way~~~

[Kimba22]

Hi Lisa,

I'm sorry the infusion clinic couldn't get enough heparin in there to dissolve the clot. I hope that interventional radiology can save your port. They told me they were usually successful dissolving clots, which is pretty much what polopuppy said. But, the stress of all this can't be good on your MS.

Even with all the scar tissue I had on the left side from my surgeries (pacemaker finally had to be implanted on the right), the interventional radiologist still found a small area where he could put a new one. But then he talked me into having it placed in my arm.

Well, that went OK until I had some serious infections a few years ago. I lost quite a bit of weight, besides muscle mass (after I lost function in that arm during a bad flare), in what was already a skinny arm. I don't know if months of needing continuous IV antibiotics added anything to what happened or not. But not only did it become infected, it started eroding through my skin.

That whole thing was another nightmare, nurses not listening, telling me it was just a scab IF they even bothered to look at it, and ignoring the fact there was yellow pus around it. All the while they had an IV antibiotic running through it. Finally, I got one of the docs to take notice. A surgeon then came to my room and wanted to remove it at my bedside (not exactly what I'd consider a sterile environment) ...

Anyways, was wondering when you are scheduled to try to have your port flushed out by an interventional radiologist and possible surgery? Keep us posted. You are in my thoughts and prayers.

(((Hugs))),

[22cyclist]

Nothing is scheduled yet as my neurologist is on Vacation until the 9th. I also have an infusion appointment that day so I will hope to have some resolution be the end of that day.

Thanks
Lisa

[Kimba22]

Talk about lousy timing that he/ she just happens to be gone until then! Is it even safe to wait that long? (I was told to mine needed to be taken care of asap. Within a few days it had been set up and I was in IR). This is information is from 2009, but still may be worth reading. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2814365/

What about asking your PCP to write the order? Just wondering, because mine has done that. Otherwise I would have had to wait until I got in to see my neurologist (plus it would've been done at a further, downtown hospital, which doesn't work as well for me as one of the closer hospitals, especially if anything urgent arose.) I also found the drs. around here aren't as receptive in taking on a new case if they didn't implant the device.

I'd also be concerned that I couldn't get my Tysabri infusion as scheduled if they couldn't dissolve the clot at the infusion center on the 9th. With all you've been through lately, I'd hate for that to happen (or for you to have any other new problems).

I'm so sorry this happened, and hope it's taken care of w/o surgical intervention . I hope your flare resolves soon, despite all of this. Wishing you some better luck.

Cyber hugs ,

[22cyclist]

I went on the ninth had my port placed in 2012. I went in for my infusion on the 9th, it took a while, but they were able to use a clot buster in there via the cath. It became unclotted in IVR. They sent me back to the infusion center, my port was fixed.

Thanks for everyones help!

Lisa

[Kimba22]

I'm so glad it was fixed!

I guess I was thinking 1/9, not 12/9. Suppose I should've thought you would be scheduled for an infusion before then!

Thanks for the update.

[polopuppy]

That is great news! I am so glad that the thrombolytic worked and saved you from an unplanned surgery. I hope you write a formal letter of complaint to your homecare company. What they did, holiday or not, was inexcusable.