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Crossroads, Part 2

By Ryan Seeley | Published 02.28.2011

I never envisioned getting a port placed in my chest and beginning prophylaxis for my hemophilia in my 40s. Throughout my life with hemophilia, each time I had a bleed, I would get an infusion and move on. Until three years ago, I had bleeds on a moderate basis throughout the year and didn’t give much thought to the need for regular infusions. I’d certainly never thought about having a port placed in my chest!

As I said last week, all of this changed in February of last year. It became obvious that my duties as a nurse, which were physically demanding, were causing an increase in bleeding episodes. My hematologist asked if I would consider getting a port.

I gave it some thought and felt the benefits of a port, given that I was going to start prophylaxis, outweighed the potential negatives. As a nurse, I worked with many oncology patients who had ports, and I certainly saw how much easier it would make things. Also, my training and duties as a nurse had prepared me for accessing and caring for a port.

Port Procedure Day

I’ve been through countless medical procedures, and, as a nurse, few, if any, things make me nervous. But I must admit I was anxious as I headed to the hospital to have my port placed. Once I got there, the staff calmed and reassured me. The hematologist wanted me to have an infusion of factor VIII just before the procedure, so I brought factor with me. I had to teach the administering nurse how to mix up and infuse factor VIII, as she’d never administered it before. All went smoothly.

I don’t remember much about the procedure, as I received what they call conscious sedation. This means I was given several potent medications, which made me very sleepy, but not unconscious. I was partially awake during the procedure, but felt no pain or discomfort. After I spent several hours in recovery waiting for the medication to wear off, it was time to go home.

After I got home and the medication had worn off, I had some pain, and it felt strange having this thing in my chest. I could feel the tube that went up from the port in my chest into my neck.

Road to Recovery

Initially, they left the port accessed, which means that a needle, with tubing attached to it, was left in the port and covered with a sterile dressing. To use a port, you must use a special needle, called a Huber needle, with plastic tubing attached to it, to flush the port and infuse factor VIII through it. Normally, the doctor would not have left it accessed after the procedure, but my hematologist ordered it so I could infuse multiple doses of factor over the next several days without having to access and de-access (insert and remove the needle). 

Within 24 hours after the procedure, I had a severe reaction to the adhesive in the Tegaderm™, a clear dressing used to cover the port site while it’s accessed. I ended up removing the sterile dressing and de-accessing my port after two days. The skin on my chest was very red, and it itched and stung wherever the adhesive had sat against my skin. Additionally, I had several bleeds in the soft tissue in my chest around the port site in the week following the placement. 

Having been a nurse who has dealt with many ports, I was very familiar with how to access one. But it’s a whole different story when you’re trying to access your own port. It was like learning to walk all over again! I’m a very confident nurse, but I felt like a new graduate again when I had to do this. After my comfort level increased, I quickly developed my own technique for accessing my port and infusing.

I’ve had my port for nearly a year, and I haven’t had one problem with it. I’m extremely careful to maintain sterile procedure when accessing it, so as not to get an infection. Also, whenever I go to the dentist, even for a routine cleaning, I take an antibiotic an hour before my appointment to ward off the risk of infection. I also infuse factor VIII to ward off any bleeding.

Deciding whether to have the port placed was tough. Personally, the decision was the best one for me. I certainly wasn’t expecting to reach this crossroads, however, even though I was going against the norm in having a port. It definitely wasn’t an easy decision to make, but I’m glad I did. My infusions now go smoothly every time, and there have been a few occasions when I needed to give back-to-back infusions. Leaving the port accessed for a few days has certainly made that easier as well.