Accessing My Port Alone, Living on Mars and Other Impossibilities

Photo on 2-19-15 at 6.14 PM

It’s around that time of year where sometimes, I’m walking the dog and I think: I’m going to die.

I’m literally going to prune up like a raisin in the sun and shrivel out of existence.

Because: Florida.

And while I contemplate moving out of state, possibly to Antarctica, I’ve realized that I have to make some contingency plan for my hydration.

First I had to harass my doctor’s office. Could they help me find a nurse? Yes. But could they help me find one that my insurance actually covered? (A lot of hand-holding) But yes. Could they send over the prescription? Could the insurance company call me back? Could they schedule someone who could teach me?

Getting my infusion in the infusion center.

Getting my infusion in the infusion center.

After about two weeks of organizing and phone calls, I finally got the call this afternoon. A nurse and my supplies were coming this evening to teach me how to access my port solo! (And to teach R.J!)

A giant box of saline, tubing, port needles, an IV pole, saline and heparin arrived at my door. The nurse showed up at around 7:30.

She was great! She helped me go through all the supplies and showed me what to use.

“And you want to access it by yourself? You don’t want to get a line put in and then just taped to you for a week?”

“No, definitely not.” I said, not really wanting to go into the specifics about exactly how screwed up this port had been in case she said this might be a bad idea. “I just want to be able to access it three times a week on my own. I don’t want to walk around with the tubing.”

“Okay!” She said, and she, R.J and I all washed our hands. We talked a little bit about how the nurses had some trouble finding the insertion point. She and R.J pressed down on my port to see if they could feel it. We put together the first few pieces of the kit and then swabbed the skin over my port with alcohol three times and then I moved in front of the mirror so I could see where to put it.

Not sure they sent me enough stuff. (I'm joking, but they really didn't.)

Not sure they sent me enough stuff. (I’m joking, but they really didn’t.)

 

I didn’t really feel the three dots she was talking about–but having listened to the other nurses, neither had they.  And some of them still managed it, so why couldn’t I?

I poked the needle as gently but as quickly as I could into the general area.

There.

It was in.

“Ok, now push down on the syringe and see if you can flush it.”

I reached for the syringe and nearly knocked the whole needle out. The plunger wouldn’t budge and my heart sank. It was in–but it wasn’t in the right space.

“Try again, take it out.”

I tried to pull the needle out but it was harder than I though it would be, I let her do it. Pulling it out didn’t hurt, but putting it back into the same space again did. And again, the syringe wouldn’t move. Wrong space.

She pulled it out again and tried it herself. Nothing.

In total we did about five pokes. Then I just needed to sit down and catch my breath.

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My port may or may not have been in agonizing pain after five sticks.

 

“If I were you,” she said, “I would go to the infusion center, get a line put in and just keep it there. Then do your infusions at home, change the dressing every night and then have the line replaced once a week.”

“Don’t I have a higher risk of getting infections,” I asked. But what I really wanted to complain about was the idea of having a tube sticking out of my chest 24/7. ”You’ll have more of a risk of infection trying to insert it five times like we just did. Really, I’m a nurse and even I wouldn’t feel comfortable doing that to myself at home.”

I was crushed. Just when I thought we’d figured out a solution to the whole completely lacking independence thing–road block.

But it’s okay. I mean it’s not okay, but it’s okay. She said that maybe in a few months the swelling would go down and I could try again. And frankly the idea of sticking myself five times in a row without the guarantee I’d get it in the right place was terrifying.

“Don’t do that to yourself, just let them connect it and then you can do a bag every day if you want. Easy.”
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Which is the part that is okay. Because one way or another I have to get this done. And while having the line would be obnoxious, it will still give me a lot more freedom to control my own treatment.

I went in this morning to get my line hooked up. I took my Jamba Juice and my brave face and then had the nurse write down on a sticky note what I needed to ask my doctor to prescribe.

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Honestly, the port cover, bandage and tape–I would have to wear a turtle neck to cover it. In summer. In Florida.

Why can’t it be connected to my leg or something? No one’s looking at my legs. I’m 5’2.

The nurse carefully dated the only transparent part of the bandage with a giant, black sharpie. Great.

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Annnd now I’ve got an alien poking out of my collarbone. I haven’t attempted doing my own IV yet, but here’s hoping that this was the easy way.

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