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

Port Infection Torture

The trial was going as expected, a lot of visits, a lot of blood draws and some side effects here and there.  On the more serious side, I was getting high fevers and chills that lasted a couple days every time that the port was accessed for the past month.  This past Thursday they drew cultures off of the port and off of a peripheral vein in my arm (the IV nurse was lucky enough to find one, it would have been great if it didn’t collapse after one usage).  Friday morning I received a call saying that the cultures came back positive for an infection and that I needed to go to the ER immediately and that I would be admitted for at least the weekend to receive IV antibiotics.

 Nothing is ever as easy as they make it sound, as annoyed as I was with the haste and the diagnosis, the reality of the situation is even more frustrating.  I was processed in the ER right away and was put in a room, but once there things got a bit more serious, it was at this time that I found out that several people from a few various departments felt that my port should just be taken out; I assured them that taking out the port would be the very last result, only when we are completely out of options.  I had the ER nurse call and speak with my former oncology nurse who assured her how vital the port is to me being able to receive treatment, and also had her call the port specialist who helped set up the surgery for my port back in 2010.  The port specialist came to the ER to see the port and access it for blood work.  The plan was to administer the antibiotic through an IV in my arm, and after searching for a vein and failing three times, leaving pretty large bruises on my arms, they finally agreed with me that it should be given through the port.  I remained in the ER until 8p because my fevers kept spiking, my chills were so bad that my whole body was shaking, and my heart rate had increased too high to move me.

Once things settled down and I was moved into a room things didn’t get much easier.  I have seen at least a dozen doctors, fellows, and nurses whom I have never met before who continue to tell me that the teams are still considering taking the port out and that they are still trying to figure out which antibiotic to keep me on, at this point I have had a dose of 5 different antibiotics.    My fevers continued to spike until yesterday evening (Saturday) and the cultures from Thursday and Friday came back positive for an infection.  At 7p last night they finally chose an antibiotic to stick with and that they were going to send me for an ultra sound of the port to look for fluid or bacteria pockets around the port, and that today I would go for an echocardiogram because one of the doctors heard a murmur in my heart and they want to make sure that there is not a buildup of bacteria on one of the valves.  In addition to giving me the antibiotic every four hours, instead of flushing the port after usage a combination of an antibiotic and heparin will be pushed into the port and left in the lines until the next antibiotic dose.

At this point we are waiting for the results of the ultra sound, echocardiogram, daily blood cultures and to make sure that I do not have any more fevers.  Once all of this information is gathered and reviewed by the teams of doctors, hopefully a plan can be made.  The latest estimate of my release is said to be either Monday or Tuesday, but as with everything else, nobody knows for sure.