Help Wanted: Health Care Quarterback

heather post

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!

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5 Responses to “Help Wanted: Health Care Quarterback”

  1. Maxine Wiebe
    May 6, 2014 at 10:06 am #

    My port has been leaking and I’m having it replaced soon so I had a number of questions about this and could not find out who was responsible for ultimately evaluating the device and what exactly would be done to correct the problem. I contacted the manufacturers of the port with my questions and I received a prompt reply by email, a 72 page PDF with really good physician and patient information and a mobile phone number to contact for more information. The gentleman I spoke with was very helpful, answered my questions and knew about the staff and procedures used at RUH where my port will be replaced. I thought you might be interested in following the same process to get help with your problems in this regard.

    • Heather Thiessen
      Heather Thiessen
      May 7, 2014 at 5:48 pm #

      Hi maxine

      Thanks for your information. It’s good to know you can get some great information from the company who manufactures ports. Funny how you can that information faster sometimes than from your healthcare provider.

      I’ll remember this. I unfortunately need someone willing to help when my port stops working.

      I know we will find an answer and hopefully in the process help another patient down the road and know they won’t be as lost as I have and have an easier time than I.

      Thanks again. I appreciate your taking time to write to me.

      Heather

  2. Tara
    May 1, 2014 at 8:10 pm #

    Excellent post! It’s sad and frustrating to hear how difficult this can be.

  3. Cindy Dumba
    April 30, 2014 at 6:38 pm #

    What an important story Heather! It’s my great hope that you will find your champion. It’s a difficult experience……. Trying to co-ordinate your own care, and I applaud you for staying dedicated and well informed! I have some understanding of the worry and frustration you feel as you arrive to find that one most responsible person to ensure your journey is smooth. My family had the same issues with the care of our mother, who had many underlying issues while waiting for a surgery that did not happen in good time. Had we found her “quarterback”, her outcome may have been different. I know you won’t give up….. And I’m confident you will find your quarterback. I look forward to reading your posts and your updates. Take good care….. Cindy Dumba

    • Heather Thiessen
      Heather Thiessen
      May 1, 2014 at 3:43 pm #

      Thanks so much Cindy. It is a difficult experience. I worry so much about those patients who don’t have a strong voice.
      I am glad that changes are happening but we still have work to do.

      Thanks for all your support. So appreciated Cindy!!!

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