Port Infection Torture Continued

Sorry about the delay in posting.


My last blog was posted on Sunday, 11/18, at which point I was waiting for the results of multiple tests and a plan of action (everything came back ok). Instead of getting answers, it seemed as though more questions were being brought up. I was released from the hospital on Wednesday, November 14th, only after pushing each day for my release. The following issues didn’t help…

The nurses were having trouble getting a blood return from the port, I had another chest x-ray and a flow study to see exactly what was wrong with the port. The tip of the port seems to be up against a wall or vessel which is why liquids flow in but there is trouble getting a return. The line specialist spoke with my surgeon who said that we can attempt to fix it by going in and pulling back on the line a little, but that it will have to wait until I have been off antibiotics for more than two weeks.

Tuesday night I noticed the smallest rash on my hand, by Wednesday afternoon it had continued to spread and dermatology was called. Dermatology wasn’t sure whether it was from an antibiotic that I had received or if it was a viral rash, I was sent for yet another chest x-ray (came back fine). At this point, 4 days later, the rash is over my entire body, including my face, and is Very, Very itchy! Dermatology said that it will most likely get worse before it gets better but it should get better. This rash threw a loop into the antibiotic that I was going to be sent home on, so another one had to be chosen.

The other concern was that I need to be careful that whatever antibiotics and medications I take will not kick me off the clinical trial. I am on a temporary break from the clinical trial for two weeks, I will resume on Wed. 11/21. The reason I am able to return to the study is because I will only do two weeks of IV antibiotics (instead of 4) and then switch to an oral antibiotic with a line lock antibiotic. Which sounded like the perfect plan, but it’s me, so of course something had to make it more difficult.

I was set up with an infusion company, who would deliver me the IV antibiotics and the lock drug for me to administer to myself at home. The first visit was going well until we (the nurse, myself, and John) were unable to aspirate the lock drug that had been placed in the day before (it stays in for 24 hrs). We called the line specialist who assured us that it was not harmful to extract what we could and then flush the rest through, it was just additional antibiotics; however, the question is will pushing the antibiotic through the line make me ineligible for the clinical trial. The trial states that no IV antibiotics can be given while on the trial. The answer to this question is still pending. Without the lock drug there is a higher risk of the port infection returning, which would mean that the line would have to be pulled.

I will say that being able to administer the antibiotics and flushing the port myself is exciting, after watching the nurses do it for years, I actually get a chance to do what I’ve watched thousands of times. The IV antibiotic comes in the coolest contraption. It is a plastic ball that fits in my hand and looks sort of like a hand grenade, once hooked up the ball starts compressing over a half hour and empties itself.

Hopefully things will start to calm down and all will be back to normal when I begin the clinical trial this coming Wednesday. Oh yeah! And I have not had a fever since last Saturday afternoon, which is a big deal!

UPCOMING APPTS:
11/21: All day Clinical Trial