Should it stay or should it go?

In the medical community, I am known as a “Hardstick”.  When nurses attempt to locate a vein to place an IV, my veins seem to disappear, roll, collapse, or even blow.   The “average” number of pokes or sticks before successfully accessing a vein is 4 or 5x per IV or infusion.

I started receiving Tysabri via infusion in 12/2009.  This meant that every 4 weeks, potentially for the rest of my life, I would need to be STUCK….repeatedly?!?!?! ☹ After going through this for almost 3 years, I had had enough of being a pincushion. 

Deciding to get a Port O Cath

I’ve had my PORT in for Eleven years. It was placed on Valentines Day 02/14/12 to be exact. There is no denying that it’s a part of me and has been for a long time.  Even though the needle they use to access it somewhat large and hurts for a moment, it usually only takes one poke. For that reason alone, I have never regretted getting a port. BUT…

Some negatives or frustrations about having a Port

Port o caths come with a strict rule. They must be checked and flushed with Heparin every 4 weeks to prevent blood clots.  This worked out perfectly for me because I had my infusion every 4 weeks so, 2 birds with one stone.  When I had to space my infusions 6 weeks apart instead of 4, I ‘pushed the buck’ so to speak, and waited 6 weeks between flushes. Fortunately for me I didn’t have many complications waiting the extra time.

Most places will not allow a “regular nurse” to access the port. They require that someone from oncology to do it.  For me this means, outpatient surgery centers, doctor’s office laboratories, EMT’s, and MRI centers will not access it for fear of infection. Since so many of the places won’t use it, I still had to be stuck 4 or 5 times for everything other than infusions. FRUSTRATING!!

Time to have the port removed?

I was forced to stop taking Tysabri, and began a drug that only requires infusions every 6 months. If I don’t have the port removed, I still have to make appointments to have it flushed every 4 weeks between infusions. If I could just pop in to the doctor’s office, get poked and flushed, it wouldn’t be a big deal. Of course that’s not how it works….. GRRRR I have to call a special number to make an appointment at the Cancer Center. They only flush ports between 3 and 5 pm. So I have to drive 1/2 hour in traffic during the time I am most tired every day for a 5 min stick (assuming I don’t have to wait an hour because they are backlogged). I realize this is not the end of the world, but it is frustrating enough that maybe it is the end of my port? It seems like it should be a no brainer.

So why am I dragging my feet?

I SAY, “Wouldn’t it be nice to go a whole year without a surgery?”, (remember I’ve had over 60 surgeries) but its more than that. It’s become a part of me. Maybe having it removed means that I agree there is no going back on Tysabri? I’m honestly not sure. I guess it comes down to Logic vs Emotion. ……..a constant battle for me

I have my next Ocrevus Infusion in September. My goal is to make a decision by then.