Portacath

[Naive]

I have an old portacath (inserted over 9 years ago for long term antibiotics) which has started to cause chest pain over the last 3 months or so, when it's being used. I had a blood transfusion today and I got the chest, neck and arm pain again. My port hasn't given blood drawback in about 5 years.

Long story short..I had a portagram today which showed some leakage of contrast in the distal catheter but within the SVC. I was told it was of no significance and not to be concerned but I'm still not happy with it. It's swollen and bruised and leaked blood under the plastic dressing.

I've attached a photo. Last week when I had an infusion and it hurt, the Doctor said I had decreased air entry in the right lung the next day. I had to have Salbutomol nebulisers to fix the problem. I don't usually get breathing/lung problems.

Am I right to be concerned?

[Neil Cuadra]

This summary has a list of "warning signs". I'm surprised that your doctor doesn't think it's time to remove the portacath, which is a straightforward procedure.

I've read about people keeping portacaths for years, but 9 years seems like the upper end of the scale. This fact sheet from the MPS Society says "Most surgeons say most ports will last anywhere from two to six years."

Another site advises that "Your port may stay in place for as long as it functions correctly, or as long as your doctor determines that you need it." If you don't think yours is functioning correctly, then I think your concern is warranted.

[Naive]

Thank you Neil. I dislike it when I raise a concern to a Doctor and I'm made to feel as if I'm being neurotic. As you can see it's swollen and bruised, leaked fluid and I've had lung problems twice now when I've had the pain. It certainly isn't my imagination.

I'm going to insist that it's replaced. You've given me the encouragement I need to stand up for myself. I appreciate it.

Carol

[Naive]

Hi again. Well it turned out my port was leaking internally and it's been removed and another one placed.

Well, the sites are infected and the wounds have opened and I'm on antibiotics. That's okay, I'll be fine. The thing I'm wondering is that my neutrophils are sitting at 1.0 and that's very good but I still keep getting infections...so, is it possible to have enough neutrophils but they don't function properly? Is there a test to determine if they are normal and functioning?

I did try to Google it but I came up with nothing. I don't see the haematologist for another 4 weeks.

Thanks for any responses.

Carol.

[Hopeful]

Hi Naive,

I would call a neutrophil count of 1 "kind-of-okay" verses "very good", although these things are relative, and optimism is good! You still are moderately neutropenic, and thus should take extra precautions to prevent infections.

If you are still taking steroids, that will also increase your susceptibility.

I hope your road smooths out in the days ahead, now that the old port is gone!

[Naive]

Thanks Hopeful. Yes. 1.0 being very good is relative. It's not that long ago I was living on Neupogen injections for neuts of 0.05 etc..so I'm ecstatic it's improved but I'm disappointed I'm still getting infections. I'm also needing blood transfusions every 3 or 4 weeks. It's not ideal but better than I was told would happen. I'm still here

I got a phone call today for admission to hospital next week so I'll ask about neutrophil function while I'm admitted.

Carol