Ports, only for cancer patients

A year ago, my pulmonologist suggested I get a port for long term IV access instead of getting PICC lines. I was apprehensive about getting something that would be more invasive. However, I do not like PICC lines. I am allergic to the tape dressings which are required to cover the PICC line insertion site. All my PICC lines have developed infections. Ports are placed under the skin. Only when the port is accessed (i.e., the line is being used to administer IV medicine) does a dressing need to cover the area. Otherwise, the port is protected by the skin, which means you can shower and get the area wet—something you cannot do with a PICC line.

When I attempted to get a port a year ago while hospitalized, I was severely scorned for wanting a port. I was told, “Ports are only for cancer patients.” The doctor gave me a long monologue about why I should not get a port. At the end of a very long speech, the doctor said she would do the procedure, but it could be a day or two until it could be done. I was restless. I had been in the hospital far too long. If I got a PICC line, I could be discharged in the morning. I reluctantly agree to have another PICC line.

In April, the line became infected and had to be pulled. In June, I needed IV access again for more antibiotics. When my infectious disease (ID) doctor said I needed a PICC line, I completely forgot to ask for a port. So, I got another PICC line. In November, the line became infected and had to be pulled.

Recently, when I had my ID appointment, I again needed IV antibiotics. The doctor told me he thought I should get a port instead of a PICC line. He described the benefits of a port. I happily agreed to get a port.

I wait and wait to hear from the hospital to setup the appointment. Finally, I call the hospital only to find out the doctor’s office forgot to send over the orders. Once this is resolved, I am all setup to receive my port. I speak to several people before my appointment and state I am getting a port. No one says anything to the contrary. On the day of the procedure, person after person asks why I was here. I say, “I am getting a port.” Right before the procedure, a nurse comes in to review everything once more. She asks why I am here. When I say I am getting a port, she freezes. “No, you are getting a tunneled catheter called a proline. You are not getting a port.” I am confused. No, my doctor and I discussed a port. All her paperwork says I am to get a proline. The nurse calls to ask what needs to be done to get a port. She then tells me it would take a while to get new doctor’s orders and insurance approval. Additionally, she tells me a proline is what they usually do for people who need antibiotics. Ports are only for cancer patients. With a broken heart, I agree to get a proline.

As I am being prepared for the procedure, I nearly start crying. A proline is a similar procedure to a port, but the end of the catheter hangs out of your chest. (A proline is like having a PICC line in your chest.) Hence, the line cannot get wet. It must be covered with a dressing at all times. As I think about all the extra precautions, my body screams out, “No!!! Do not get this!” I tell the nurse I do not what the procedure. The nurse informs me I can get the proline, and then follow up with my doctor to get a port. The thought of enduring TWO procedures makes me want to scream. Thankfully, at this moment, the doctor who is going to preform the procedure walks in.

Proline

I ask the doctor about the proline. She describes the procedure and tells me this is what they do for folks who need antibiotics for 6-8 weeks. I quickly interject and tell the doctor I have chronic lung infections. I will need antibiotics for the rest of my life. I need a port. After listening to my concerns, the doctor agrees. Yes, a port would be a better option if I am going to need IV access for an indefinite time. The procedure is scrubbed. My ID doctor is contacted. Now it’s time to wait for a new set of orders. Maybe some day, some day soon, I will get a port.