Name your fear

Being chronically ill is an exercise in managing fear. There are so many of them and they all need attention in turn. You are afraid of the damage being done to your body. You are afraid of the damage being done to your mind. You are afraid of the damage being done to your relationships. And you are afraid of the damage being done to your life.

For me, none of these fears hold a candle to the one that looms largest in my mind: bloodstream infection.

Long before I learned about the intricacies of mast cell biology, I was an infectious diseases microbiologist. My first job out of grad school was developing rapid diagnostics for bloodstream infections. I spent thousands of hours studying pathogenic organisms like MRSA, VRE, E. coli, Klebsiella pneumoniae, Pseudomonas aeruginosa, and Candida albicans and learning how to find them as fast as possible. I learned a lot about how often these infections occur and the sepsis they are and how fatal they are. (Pretty fatal, in case you’re wondering). The science around bloodstream infections feels very much like my old stomping ground if my old stomping ground was a burned out car in a Mad Max wasteland.

I have a central line permanently implanted in my chest for the purpose of giving myself IV medications and fluids daily. I had my port placed in September 2014. For several months before that, I had a PICC line in my arm to give IV access. Having a central line massively increases the risk of bloodstream infection. PICC lines are generally considered riskier than a port but ports are not a whole lot safer if it is accessed all the time like mine is. The likelihood of a line infection is not insignificant. It is on my mind every day.

In the 3 ½ years I have had a central line, I have never had an infection. There are basically two flavors of infections associated with lines: local site infections, where the place that the line crosses through your skin gets infected by organisms on the skin, and line infections, in which the inside of the IV line is contaminated. Both can be serious but site infections are less serious. In many instances, a site infection can be cured by pulling the line and putting in a new one somewhere else. Line infections are so dangerous because the bugs inside the line get pushed into your bloodstream and pass through your heart. Pulling the line often does nothing and most people end up in the ICU for several days or longer.

I am a maniac about my line. I exert a huge amount of effort to keep my site sterile and immaculate. I spend a lot of time sterilizing the end of the line before I inject any meds or hook up an infusion. I am extremely careful when I dilute medications to inject. I use a checklist when I access the line to avoid contaminating anything. If I think there is even a miniscule chance that I contaminated something, I throw it all out and start over again. But the most important way I protect against infections is by not letting anyone who isn’t me touch my line. My home care IV nurse is the only person aside from me that I trust to touch my line. I avoid going inpatient or to the ER at all costs because there are so many more people and the risk of contamination skyrockets.

Despite all of this, I work myself into a frenzy a few times a year in which I convince myself that I have a line or pocket infection. (A pocket infection is a kind of site infection you see with ports, which are implanted under the skin). Naturally, these frenzies occur when I am traveling because otherwise they would be no fun.

Deaccessing the port means taking out the needle so that I cannot inject medication into the port. The port is connected to my bloodstream. Without the needle, the port is pretty impervious to infection. Putting a needle back into the port is called accessing. It is a sterile procedure and involves sterilizing the skin and then putting a sterile dressing over the needle. Like many mast cell patients, I have very sensitive skin. I react to the betadine and alcohol I have to use to sterilize my skin. (I have tried other sterilization procedures, this one is the best for me because I react much more with others). I also react to the adhesive of the sterile dressing, although it’s much better than the alternatives. (I use IV3000 dressings and many mast cell patients have luck with them.)

I have to deaccess my port to go swimming. If I go swimming every day, this means that I have to take out the needle and pull of the dressing every day. When I need to use the line again later that day, I have to sterilize my skin and put on a new dressing. My skin reacts badly to doing this daily. I often get hives and it’s hard to clean off the adhesive residue left by the dressings without using a lot of alcohol, which I also react to.

When my skin reacts like this, it doesn’t look that different from a site infection. It is red and itchy. It sometimes hurts. I sometimes get hives. It can make it much harder to figure out what’s actually happening.

I’m in Mexico right now. There have been a lot of hiccups on this trip but it is insanely beautiful here. It is a special place. It is also incredibly hot here so I have been swimming a lot. I have been deaccessing for 4-6 hours at a time. Yesterday, as I will removing the needle so I could swim, a little bit of white fluid came out with a few drops of blood and the needle. It kind of looked like pus. I spent the next several minutes pushing on my port and trying to assess for signs of infection with thinly veiled panic.

Seeing pus come out with the needle usually means a pocket infection, an infection under the skin around the port. But if you access a port while having a pocket infection, it can push some of the infection into the bloodstream. As I am heavily dependent upon using the port for IV meds and infusions daily, it’s not safe for me to not have IV access. After trying to collect myself, I called my IV nursing team at home. We talked through some scenarios and the likelihood of infection.

After some deliberation, I went to the doctor on staff here at the resort. I was very nervous that he would be unable to help or not want the liability. He ended up being fantastic. He ordered the high dose oral antibiotics my home team requested. He works at a local private hospital and was able to arrange someone to start an IV for me daily if the port did end up being unusable. Alternately, I could go to the private hospital daily and they would give me my fluid infusions and IV meds through the IV they placed.

After some more discussion, my home team felt it was okay to try and access the port that night if there were no more signs of infection (especially not getting any white fluid out when pushing on the port). If I accessed it, I could use it normally. If there were signs of infection, I would keep it deaccessed and stop using it until I got home. Then I would have an IV placed and we would discuss IV antibiotics at the hospital.

Last night, after several hours of deaccess and worry, I was able to reaccess my port. It is working fine and has had no other signs of infection. I’m still not sure what the liquid was and it’s possible it was the start of an infection. It is also possible that the white liquid was from a burst hive, or a precipitate formed by the betadine on my skin reacting with the water here, or some stray sunblock that hadn’t gotten cleaned off. Just something to keep things lively.

There are a lot of obstacles in the path of anyone who travels with major health issues. The fear of needing help and not having it readily available is the biggest one for me. Understanding all the ways something can go wrong is so often a hindrance. It is much harder for me to just take things at face value and not worry about it.

So I don’t really know what happened and I’m probably never going to. This morning, I was just grateful to wake up with a working port in a coping body in this beautiful, special place.