Still Miles to Go

Considering I am currently back at MGH for a central line infection (which is being treated as sepsis due to my plummeting blood pressures and skyrocketing temperatures and heart rate; this could, however, be due to my really screwy autonomic nervous system), I thought I’d address the issues we’re currently encountering with my current former central line (a PICC in my left arm) and the debate over what kind of line is most appropriate for the long term use we’re envisioning.

How did we get here from there?
My GI tract (from stomach to colon) is essentially paralyzed. After numerous tests and a 25-day hospital stay when it officially shut down, a GJ-tube was placed. Five days later, I was readmitted partially because the GJ-tube was not providing enough of the necessary nutrients. The solution was to place a central line (a peripherally inserted central catheter or “PICC”) so that I could receive calories and vital nutrients intravenously. At this point, the PICC and TPN were planned to be short-term aids until we could build up the feeds to my jejunum (the middle part of my small intestine). A couple months later, my GI doctor said it looks like TPN is the most viable long-term option for me.

Infection on the Front Line
After almost four months of meticulous care, I finally got a line infection. I am very allergic the the adhesive on StatLocks. StatLocks are like foam stickers that adhere to your skin and “lock” the line in place so it doesn’t get pulled out. Because I’m allergic to them, I would get rashes beneath them that would get sweaty and infected, pulling the StatLock away from my skin. I would then have infected skin just 2 centimeters from the insert of the line that delivers medication straight to my heart. We looked into options, but the only alternative to the StatLock is suturing the catheter to the skin and that comes with its own infection risks.

A StatLock stabilization device

We are usually able to catch the infection in time to change my dressing before it has the chance to spread to my line, but we weren’t so lucky this time. By Monday morning (less than 24 hours after the dressing change), I had a fever of 101.8, blood pressures hovering around 70/40, and a heart rate of 146-165. My site was pouring out greenish discharge. Keith took the earliest possible appointment at my primary care doctor’s office across the street. My doctor took one look at me and said, “you need that port.” (A “port” is another type of central line.) After examining me, he tried to get some of his friends at our local hospital to admit me, but they all said I was “too difficult” and sent me on to MGH in Boston. My line was pulled and cultured and I was placed on Vancomyacin and Ciprofloxacin. Although we have yet to identify the particular bacteria and its sensitivities (and I’m told we may never identify them based on when the cultures were drawn), the doctors are treating it aggressively and as if it has reached my bloodstream (“sepsis”) because my autonomic system has went haywire. I’m still doubtful it’s full-blown sepsis though because my autonomic system seems to go similarly haywire for just about any minor disturbance. However, we bolus-ed two liters of IV saline immediately upon my admittance and that usually “shocks” my ANS into working properly for a short period. This time, it didn’t.

Blood cultures are drawn in what looks like Tabasco jars

But that brings us to where we stand now. I currently have no central line and have had eight peripheral IVs started (one infiltrated immediately, 3 developed phlebitis, 3 veins immediately blown, and one currently running) in the 48 hours that I’ve been here, in addition to six separate sticks for just three blood draws. Because I can’t run my TPN while sans central line (I’m on D5 round the clock to maintain blood sugar and fluid levels), my electrolyte levels have started to waver significantly and we’re now pushing liter after liter of potassium which, I must say, burns like the dickens in a peripheral line. All evidence of how critical it is that I get central line access as soon as possible.

Tunneled line vs. Port-a-cath
For the last few weeks (with an emphasis in the last two days), we’ve been in talks with our surgeon, immunology, GI, neurology, and my awesome PCP about what we should do about a long-term line. PICC lines are great and can be used relatively long-term and only have to be replaced once a year (according to most sources) unless they become infected or damaged. But there are some drawbacks. They are in your arm and can become troublesome. You aren’t supposed to lift more than 25 lbs while one is inserted. They require replacement more frequently. And finally – and most importantly for me – they require the use of a StatLock or sutures.

The common go-to lines for long-term use are Tunneled Catheters (like the Hickman or Groshong for adults or the Broviac for kids) and Implanted Ports (also called “mediports” or “port-a-caths”). Tunneled Catheters are placed and “tunneled” under the skin from the insertion site to the vein. Like a PICC line (and a regular peripheral IV), the line is then left to hang outside the skin. It also needs to be covered with sterile dressings and flushed regularly to ensure it functions properly.

An Implanted Port lies completely underneath the skin. When not “accessed” (i.e. when not hooked up to a line via a specialized needle), it appears as a small bump underneath the skin. The perks of a port include being able to swim when not accessed. For those that don’t know me as well, swimming (especially during the summer months) is one of my few and favorite physical pastimes. My home health nurses know this and have been pushing for a port for some time; they’ve even promised to come out twice a day, multiple times a week to de-access and re-access me so I can partake in the pool time fun. This has been encouraging.

An illustration of how a port is inserted and accessed

The Bottom (Central) Line
The only reason why we wouldn’t automatically say “yes” to the port given the above information is that I’m on nearly continuous infusion. I can’t get by without fluids for more than an hour or two at a time. And each time the port needs accessing, it is introduced to potential sources of bacteria. And dealing with my current line infection makes me realize how serious this can be. But quality of life must be considered and the ability to swim certainly greatly improves mine so we’re still going for it.

The best news? The nurses on the floor have been amazing and finally convinced the doctor that placing my new central line as early as possible is better because of my incredibly poor access. Need more evidence? In the time it took me to finish writing this, I just lost another line using my patented “super clot” ability. Yep, I’ve certainly got talent at losing peripheral lines. Hopefully, that talent doesn’t transfer to central lines.