Tag Archives: port

Port Advocate

When I see the hospital calling I always assume the worst. For the first time in a long while, this call was only good news. Let me back track before I get into my conversation with Dr. Jay.

During my time in the hospital for my first two surgeries in 2014, I was a human pin cushion. I had IV lines coming out of every vein they could tap. My hand, wrist, and arm were all covered with lines that weren’t even hooked up to anything. They were all there “just in case” they were needed. On top of this, I was still bothered once a day by a nurse, who would poke at me to take my blood. Worse even still, were my constant arguments in the ICU over a picc line. (If you are not familiar with this term, it is a tube they insert and leave open in your veins, so they have direct access to your blood.) I would fight tooth and nail with every nurse that came in to inform me that they were going to put one in. “Why do you need to put one in, I have a PORT!” The first time my yelling worked and I was able to keep them away until I made it to the surgery ward. The second surgery, I was not as successful. I had three nurses hold my arms down, while a male doctor cut into different parts of my hand and arm trying to start the line. I was crying the whole time and begging them to stop. After trying in four different areas, they were nice enough to give me a break. (This sentence couldn’t be any more sarcastic.) An hour or so later a new nurse came in to let me know they were going to try again soon. I cried and said, “Please just explain something to me. What is the point of me having a Port-a-cath if it is not going to be used? The whole reason I had it implanted is so I wouldn’t have to get a picc line. This doesn’t make any sense!” She surprisingly agreed, and then proceeded to call off the picc line.

Side note: While driving the other day I thought about this moment, and I cried underneath my Raybans. I wish my memories in the hospital could all be erased.

From my weight gain in the winter of 2014, I developed a lot of extra fat on top of my port. This made it really tricky to access. So when it came time for my surgery in 2015, I did not bring it up.

When I met with Dr. Jay and Dr. Ko this year to discuss my May surgeries, I was quick to touch on this subject.

“Can I ask you guys something? Why the hell am I poked at everyday – which hurts by the way – when I have a bloody port? What the hell is the point of having this thing if every nurse I speak to, other than the ones in oncology, don’t know how to use it?”

“You’re right.”

WHHHAATTTTT!? This was the first and probably last time they will ever tell me I am right. Even though I have been right SO many times before, and will probably continue to be.

“It is a little tricky to explain why they are not trained to access it. However, I will make sure this time it is used.”

To my surprise, they kept their word. For both my surgeries in May, my port was used. I was administered all of my drugs through it, and all of my blood was taken from it. No more tube city!

Which brings us to today. Dr. Jay called and asked me if I wouldn’t mind speaking about all of this to a colleague of his in the hospital. Since I was such an advocate for myself during all of my hospital stays, it started a movement. Nurses are now starting to be trained on how to access ports. A woman is putting together a proposal for more funding, in order to be able to have the supplies and training needed, so all nurses will know how to use the port to their full advantage in the future. I obviously said yes right away. If I can help prevent future surgical patients from having to experience what I have been through, I am all for it!

I will also request to have it called “The Jamie Protocol”. Just kidding……… not really.

 

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The Challenge

Two days after my diagnosis, I was sent to St. Joseph hospital to meet with my surgeon who would now be looking after my case. My doctor walked in the room and sat down with a picture of a liver. He began to explain the different quadrants of the liver, and how he needs 20% healthy liver tissue in order to operate. As he placed the cartoon depiction of the liver on the table he pulled out his pen, and the circling began.

“You have multiple mets on each section of your liver. At this time we are not able to operate. I will be honest with you, it is very rare in cases like yours I am ever able to operate.”

My mom, my dad and myself all cracked. He let me know he wanted to start me on chemotherapy right away. He set me up with an appointment to meet my Oncologist, as well as my day surgery for my Port-A-Cath. This was all going to happen in the afternoon. I started having a meltdown and asked everyone to leave the room

“So, now I am really going to die.” – This was the first thought that had entered my brain. In that moment I reverted right back to a child like state. I got up from my chair, climbed up on the doctor office bed, and laid down in the fetal position crying. My doctor returned to check in on me and we began having what I like to call “real talk”. It was during that conversation something came over me. This feeling of determination, of not wanting to be a pussy about it. “Suck it up, stop crying, get on with it.”, I told myself.

I sat up, wiped my tears, looked him square in the eye, and gave him my challenge – “I challenge you to a surgery. You will be seeing what my liver looks like within the year. Year and a half tops.”

“Ok Jamie. Challenge accepted.”

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