I’ll warn you, this is going to be a long post (I know I’m long winded anyway!) But it’s important. It’s about advocating for yourself as a patient when a medical professional states they’d like to do something that you don’t feel comfortable with. It’s also about taking your central line, and the symptoms of possible line infection, very seriously.
If you follow along on Instagram Stories, you might remember seeing some frantic posts from me about two weeks ago (there will be a couple of screen shots of those posts used here.)
To re-cap, there was a lot of back and forth of thinking I had a central line infection, then thinking I didn’t. It was six days of complete panic, because my central line is literally my life line. It is the way that I receive my TPN, my only form of nutrition. But a central line infection can lead to full blown sepsis, and even death if it is not dealt with appropriately. So it is some serious business.
Let me give you a run down of how it can look to potentially have a central line infection. I promise to get to the point of this post, but always feel it is important to tell back stories.
Thursday early morning hours: I woke up with body aches. Immediately checked my temperature and saw it was hanging out around 99F. Freaked out (even though this is a low grade temp it is still worth a worry when living with a central line) and called my home infusion pharmacist at 3am (thank goodness for amazing on call staff from my infusion pharmacy!) to see what they advised. I was advised to keep an hourly alarm set to check my temperature, and if it got to 100.4F to go to the ER. Otherwise, try to get my general doctor to draw cultures the next morning.
I followed suit, and slept nearly 0% of that night. But my fever never got to 100.4 that night.
Thursday normal morning hours: After a night of feeling terrible, I was feeling pretty much back to normal after disconnecting my TPN infusion. This was super concerning, because in the past, my body only has only showed symptoms of infection while infusing TPN, and feeling great while disconnected during the day. I called my doctor’s office, they’d never dealt with this for me before, so they told me I needed to go to the ER after all.
Three hours later in the ER: I got cultures drawn (a type of blood draw where they put it in these super weird vials and keep watch over for several days to see if any bugs grow that indicate infection) from both my central line and from a peripheral arm stick so they were able to compare what happened from each location. I was then told I was free to go as they monitored these blood cultures, and they’d call me if anything grew. My labs showed no indication of infection, so they saw no reason to keep me.
Friday: After another night of fevers and body aches, I got all freaked out because they hadn’t even checked for “normal people sick” things, like the flu or a UTI in the ER. So I called my doctor’s office to schedule an appointment to get those things checked. To my disappointment, all of those tests come back negative. I was seriously crossing my fingers for the flu believe it or not! That’s how badly I did not want this to be a central line infection.
Friday Evening: I felt totally back to normal, went to a fabulous Josh Ritter concert as a surprise for my husband’s birthday. Started infusing TPN and got through the night feeling fine. Finally felt like I was out of the woods and started concluding that this was all some sort of bug.
Saturday: Was still feeling totally awesome. Called to check on my cultures after the 48 hour mark where I was supposed to know if I was safe from infection or not. The on call doctor told me they are still 100% clear and I was good! I took this as a win and tried to forget about the craziness.
Sunday: There were lots of hooray’s and hi-five’s about being line infection free throughout the day. Then the dreadful call at 8:30pm. I answered and totally assumed it was going to be one of those “how was your ER visit, is there anything we can help you with now,” calls. It was not. It was a “hello, your blood cultures grew something and you need to come to the ER now,” calls. I, of course, burst into tears. I called for Anthony and we headed straight for the ER.
Once we got through the ER and into a room to be looked at by a doctor, guess what one of the first things he says to me is? “We’re going to have to pull that line.”
I know that was a lot of build up to get to this point, but we have arrived.
It had been over 7 years since I’d last heard words similar to this in a similar situation (my math is a mess and I cannot figure out the last time I had a line infection, which honestly is a great thing!) The last time I had a line infection, I was still in pediatric medicine.
It seems to me, after going through this recent experience, that some adult doctors don’t seem to feel the importance in trying to save a central line from a potential infection like I experienced in pediatrics (keep in mind, we still didn’t even know if this was for sure a central line infection at this point.) More specifically, a central line in a human who uses it for IV nutrition daily, and does not have an end in sight for this therapy. To add to this, there are only so many central venous access points, so that adds a whole new level of complication.
This is where self-advocacy and using your voice comes in especially handy as a patient. This does not mean be rude to the doctor. This means to be respectful, voice your concern, and try to work as a team to come up with a plan that everyone can agree upon.
I kindly said that I understood where he was coming from, but that I had a lot of concern with that plan. I suggested that I’d like to first find out for certain that I had a line infection at all, then try IV antibiotics to see if they cleared my line before pulling it. I also wanted my Dallas doctors to agree with the choices they were making, and to have the Infectious Disease doctor in on these decisions as well.
Side note- Ultimately, if they had ended pulling my line, they would have then placed a temporary PICC, then had me travel to my specialty hospital to get a new Hickman placed. So it wasn’t even an easy situation without all the other complications, this was going to be a weeks long process with 10-hour round trip to Dallas involved. Not to mention, the use of an access point for the temporary PICC.
The ER doctor agreed, and got busy talking to everyone involved.
I realize this isn’t always the case to have someone this compliant to work with. Making sure you, the patient or caregiver, are staying respectful, calm and collected (I know it’s hard when it’s your lifeline you’re dealing with) and communicating well, things will go smoother. Also having resources like your infusion nurse, pharmacist, or specialty doctor in on the situation might be helpful as well.
The Infectious Disease doctor agreed with admitting me to start IV antibiotics, and holding off on pulling the line. They decided not to use the line whatsoever, so I went without TPN that night, but I understood their reasoning.
The next day, I saw several doctors, and had lots of conversations about how I felt perfectly fine and had no symptoms or lab indications of a central line infection. That afternoon, it was ultimately decided that it must have been a contaminated culture.
Which was absolutely fabulous news! But let’s go back a few hours. Think about what my situation would have looked like had I not advocated for myself. What would have happened had I not explained how important it is as a TPN dependent human to do every possible thing to make sure it is absolutely necessary to pull a central line?
I would have had a perfectly healthy central line pulled. A venous access point used temporarily for a PICC. Then another access point used for my new Hickman after running a course of super intense IV antibiotics.
Please don’t get me wrong here, there are times where a central line needs to go, and it is very clear that it needs to go. But if there is any doubt in your mind and you feel that your line could be saved, advocate for yourself (always respectfully) and try to see if there is a plan of action that everyone can agree upon to make sure the best decisions are being made before rash ones are.
Also, always always listen to your body and if there are any signs of infection (fever, chills, body aches, pain/redness/drainage/burning/stinging at site, catheter falls out or cracks, etc.) please oh please take these things seriously. I know the ER is not fun, but sepsis is way WAY less fun my friends.
Stay safe, and (respectfully) advocate for yourself! And here’s another cheesy “love your line” photo for you to giggle at!