Want advice for Portocath

[Chirley]

I had a portocath inserted just over 6 years ago. It has been excellent.

The last few months it has been more difficult for the nurses to place the needle because they say the port has started "moving" and is now on an angle. It took four attempts last week before they had success.

As well as this, sometimes it's very hard to flush my port and the back pressure causes the IV pump to keep alarming. I have had to start doing things like lying very still flat on my back for many hours at a time just so it won't make the pump alarm.

Well, last week when I arrived home from having spent 5 days in hospital, I realised that the needle was still in my port and that the port had not been flushed with Heparin. I waited until yesterday morning (Monday) and presented to the nearest hospital ED to have my port Heparin locked and the needle removed.

At first the nurses couldn't flush anything through the needle so they got a doctor who used a small 2ml syringe (I heard them say they weren't permitted to use any syringe smaller than 10mls on a central line) to apply extra pressure and after a lot of attempts she finally flushed 2 mls of saline through the port. When she tried to flush it again with a 10ml syringe it still wouldn't flush. So she gave up and pushed through (using a lot of effort) 2 mls of Heparin and took the needle out.

I won't need to use my port again for at least six weeks (hopefully) and I'm concerned that it wasn't flushed or locked properly and it will be blocked. The nurses did discuss using blood clot busting drugs on it at one stage but I think that they were busy and were happy when the doctor managed to force two mls through and decided to accept that as good enough.

I love my port.

Should I ask my regular hospital and nurses to re flush it just to be safe? It's a bit difficult at the moment because my doctor is in Nice on an Auto Immune conference and I don't know who's covering for him.

[DanL]

Chirley,

I have a triple lumen catheter that is pretty cool, but we are supposed to flush it daily with saline and heparin regardless of use. Does this protocol not exist where you are? If not, you may want to ask about whether it is possible so that you can maintain use of the port.

[Chirley]

The protocol here is to flush with Saline, then Heparin lock once every 4 to 8 weeks if it's not being used in the meantime.

I just rang the Oncology ward and I was told I probably need a portocathogram. The difficulty is that this procedure requires a specialist referral and mine is out of the country. I don't know who is covering for him.

This is not something I want to ignore because I like my port and I want to look after it.

I'll figure something out....hopefully my GP will help.

If I end up needing a new port I'll ask for a new "you beaut" three lumen power port with all the bells and whistles......except if it needs daily maintainance.

[Whizbang]

I had a 'Hickman Line', and it only needed to be flushed once a week (Due to the design???)

Anyway it was also a triple line design, and is surgically implanted over your right collarbone into a main artery...

[Birgitta-A]

Hi Chirley,
It's almost incredible that the nurse left the needle in your port and didn't flush with saline and inject Heparin to lock the catheter and prevent blood to coagulate in the catheter.

Interesting with the port-a-cathogram that I never read anything about that. Hope you will get it done soon and that they will manage to get your port to function again.

I love my port too - I have had it since 2007 and never had any problems (knock on wood). I have received 186 units of PRBC and 75 Desferal infusions during 4 days with txs. Then I get antibiotics every 6th hour when I have fever. It is flushed every 4th week when I don't get any txs - now when I am taking Revlimid I got the latest tx Nov 2013 and my HGB is 13.7.
Kind regards
Birgitta-A

[Chirley]

I can't blame the nurse for leaving the needle in, I should have been more aware. Everything was a bit rushed. They needed the bed for a very sick lady so I was discharged earlier than expected and I had to pack quickly and the nurse had to rush through the discharge process while trying to admit the new patient at the same time. It was chaotic.

After years of investigations and treatments and uncertainties and misdiagnosis and less than optimal medical care, I finally feel that I have a specialist I can trust, a GP who actually cares and wants to learn and a treatment facility that is happy to work with me and take my needs into account too.

My only concern is that while my blood counts don't fall to critical levels as fast as they used to, they are also trending slowly down despite copper replacement. At one stage my counts would return to within normal range after copper treatment but now my HB doesn't go above 105, my WCC doesn't go above 2.5 etc. so while they are still excellent compared to a few years ago they are slowly getting worse. I suppose the bone marrow just can't keep having to overproduce continuously without eventually wearing out. It's been over three years since I've had a BMB....I'm starting to think I'd like to have one just for curiosity.

Birgitta it's good to see that the Revlimid is working. Has it effected your white cell count? Are you taking it in combination with the Thalidomide?

[Birgitta-A]

Hi Chirley,
We all know that we have to control everything but there are no excuses for leaving a needle in a port. Suppose you had been more ill or not really aware of that you shouldn't have a needle in the port. Then you probably should have got a severe infection.

Very positive with your GP .

It is true that it is difficult to know anything about your bone marrow without a BMB.

I stopped taking Thalidomide when I started to take Revlimid 5 mg July 2013. Oct 2013 the dose was increased to 10 mg/day and then I responded. I had been taking Zarzio (like Neupogen) once a week since March 2013 but stopped taking that drug in the beginning of March 2014 when my WBC were 5.6.
Kind regards
Birgitta-A

[Mseth]

Hi Birgitta-A,

Great response with Revlimid. I wish we could get Revlimid in India, we have generic Lenalidomide, not sure how effective that could be. There is no data on its use in MDS in India.

[Birgitta-A]

Hi Mseth,
I am very thankful for the response but we never know how long I will be responding - about 12 months are common in patients without the 5q chromosome aberration.
Kind regards
Birgitta-A