Since my last blog post, many of my concerns have been dealt with. I am also happy to say that there have been many changes in the system so the next patient dealing with new ports (portacaths) will have an easier time than I. For that, I am extremely grateful!
Unfortunately, I am still finding it hard to find one person who is willing to be my main helper when I run into problems with my port. My specialists tell me they don’t deal with ports, because that’s not what they specialize in. A fair point, but one of them does use the port to administer one of my medications. I thought that might be enough to take responsibility, but unfortunately, that is not the case. My family doctor is amazing, but port issues are not in his area of expertise either.
I know my port will fail eventually, but I cross my fingers and hope—a lot—that it will work forever.
Inevitably, I went in for my one of my weekly IVIG treatments recently and the nurse accessing my port suddenly stops and says, “Uh oh.”
“Uh oh?” I repeat, as she asks the other nurse to get another port.
“It must have slipped”, she says. “Let’s try again.”
I take a deep breath.
Finally after three tries, she says, “Let’s just use your PICC Line.” I know we are heading for trouble. Thankfully I still have the PICC Line that was inserted when a previous port went septic while on holidays. If we ever lost that line, I would really be in big trouble.
But we still need to fix the port. As usual, I start to think, “Oh no, who is going to help us now?” I know the answer to my own question, for it never seems to change.
For all the times we have tried, we have never found a ‘most responsible person’ for the port.
Now, we will hear the same responses from all those specialists again. My internal medicine doctor will say, “I don’t work with ports, so I really can’t help, Heather.” My amazing respiratory doctor will try and help, but will get to a point where he can’t go any further and feels just as frustrated as I am. I am so grateful that he has tried to help and has not just ended the conversation. So now I am left hoping the surgeon will be able to help, but I fear that we will wait too long and the port will be unusable.
Why, oh, why can we not get things coordinated for patients with multiple issues? I certainly cannot be the only one going through these things.
I am not sure what the answer is. Can you help me figure this one out?
I am more than happy to work with any doctor to help make a game plan. But I know that I, the patient, cannot be the quarterback in the situation. I need someone to be willing to figure things out and step up when we do run into issues.
Let’s start working better with our patients with multiple issues. We already are dealing with a lot, day-to-day. When issues come up it just makes our lives more stressful. Please help me!