Port-a-cath disaster

I’m too upset to talk about it in depth right now, but the nurse at CCAC fucked up my port by poking a hole where there shouldn’t be a hole,

causing the Vancomycin to drip into the cavity around the port itself, eventually spilling out down my breast (while some of it was infusing into my body)…

Once it was confirmed by both the nurse and then the doctor who was attending, I cried.

I lay in ‘Emerge’ and cried.

I cried to a nurse and a doctor who had *no* idea how bad of a fucking emergency this is for me. They had *no* idea what’s it’s like to have had ****4**** ports, this last one was the *worst* one by far, in terms of both pain and recovery time after the surgery.

They were busy marveling over how the medicine was still spilling back out of the poke in my skin after they took out the needle, and how puffy the cavity was from liquid where the port was nestled into my chest,

and I just cried.

Tears streaming down my face. I was too heartbroken to be frustrated. Too sad.

Then I wiped off my tears, as I’ve had to do countless times over the years, and then told myself that this is just another problem I’m going to have to solve.

And quickly.

Then I quizzed every nurse who would talk to me about the process by which to get a new port around here, and most of what I heard wasn’t good.

New port in Ottawa:

1) Must be ordered by your family doctor. ER doctors are specially instructed *not* to do anything regarding ports or piccs, because they believe they should be followed closely by your family physician. It’s now concerned out of their hands. (How could that ever possibly be out of their hands to get it started??)

2) Port orders are really supposed to come from a specialist, and I don’t have a specialist on my case, I’m stuck in the waiting cue for a specialist. (This is where Canadian wait times are working in my favor–it’s sort of okay I don’t have a specialist…sort of. But getting people to take my orders seriously is much, much harder. All physician orders are not created equal around here.)

And,

3)

(The most concerning thing I learned, as if the other problems weren’t enough),

There is a wait time for ports, usually a few weeks to a month or more. They give picc lines before that (and piccs have given me my fair share of problems), and if you only have orders for a medication for a short period of time, they don’t give you a port.

I immediately went into ‘holy shit’ mode, and contacted my doctor back in Los Angeles and my home health nurse, to let them know what was going on, and that might need to get the wheels spinning…

This is a very, very dangerous time for me. This could get very ugly very quickly.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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