“What is happening?”
“I’m being a superhero.”
“There is a scientific study that shows that if you stand like this, in superhero pose, for just five minutes before a job interview or a big presentation or a really hard task you will not only feel more confident, you will perform measurably better.”
“You feel it?”
“We are superheros.”
A character on Grey’s Anatomy, Amelia Shepherd, had the above conversation with her resident before a particularly difficult brain surgery. Later in the series, she strikes her “superhero pose” again before undergoing brain surgery herself. I’ve always really appreciated her character and the amount of battles she has clawed her way through. Fictional as she may be, I identify with her quite well.
Yesterday I entered the next battlefield in the fight against Lyme and all its buddies. For the past several months I’ve been on treatment for the Babesia infection that is one of the friends of Lyme that seems to be causing me the most trouble. For one reason or another each antibiotic I tried ended up not being well tolerated and with the progression of some other neurological symptoms, we decided it was time to start IV therapies.
On Wednesday mom and I headed to the hospital for my port surgery. A port is a device implanted under the skin connected to a catheter that runs to a large vein next to the heart that allows for long term IV access. They are most often used in oncology patients however they are quite useful for many other conditions. In my case, I will be using it every day, so it will be “accessed” 24/7. This means that I’ll have a needle in my chest covered with a dressing at all times with weekly needle changes.
Mom and I got back to the pre-op area and I got changed, checked in, and signed the consent forms while mom caught up with several of her former coworkers. It took three tries to get a peripheral IV started on me thanks to having tiny, rolling veins, Raynaud’s keeping my hands freezing cold, and not having been able to drink water before the procedure. The OR was running a little bit behind so it wasn’t until about 2:30 pm before I was taken back. My poor blue fingers were too cold to register an oxygen saturation so we tried my ear… which was also too cold. Finally we found a spot on an earlobe that would work. The struggles of being underweight and perpetually cold! The procedure took about an hour and I was sedated so all I remember is asking “is it normal to not be able to hear” and then waking up in recovery. Apparently Propofal messes with my ears.
For the procedure I had to turn off my neurostimulator – something I never do – and I got to see just how much it really helps me. The first thing I said when I woke up was, “Oh my gosh my head hurts so bad” and oh my goodness it did! The head pain was FAR worse than the pain of having had my chest cut open and dug around in. I’m so thankful to be battery operated!
After being moved to the discharge area mom came back to wait with me and while I shivered in my cocoon of five warm blankets (not an exaggeration), she listened to the reports of how everything went and discharge instructions. I was a little bit surprised that there was so little patient education about my port and how to use it until I remembered that my situation is pretty unique. Most people with ports don’t access them themselves, don’t have them accessed at all times, and don’t set up their own infusions at home. I’m very thankful that my mom is an RN who was dealt with ports for many years and is able to help me with all things medical. Lyme is very much a do-it-yourself disease because it is not well known in healthcare. In fact, not one single person who asked me why I was getting a port knew that Chronic Lyme existed and could cause such debilitating symptoms.
We got the all clear to head home and with the surgeon’s permission, mom accessed my port when we got back to my house and started my first antibiotic infusion. My dad also came by and we chatted while my meds were running and the pups had some play time. Everything with the infusion went smoothly and so once I was unhooked and flushed mom headed home and I headed for bed.
The plan for the foreseeable future is to to infuse two doses of antibiotics each day and three days of the week I will also run a liter of IV fluids to manage my POTS symptoms more effectively. Soon, I will also add in IV vitamin C and IV Glutathione to help with detoxing. I’ll also be taking other medications orally that have been well tolerated in the past that aren’t available IV.
This new protocol comes with many more risks of infection and keeping things sterile is very important because an infection could mean losing not only my port but also my stimulator – something I do NOT want to happen – but the pros outweighed the cons. There is much more logistically with IV therapy because I have to coordinate with a specialty pharmacy, have more frequent labs drawn, and have a lot to learn about new protocols. However it also comes with a lot more hope and confidence that one day I’ll make it into remission and reclaim my life!
This is the beginning of a new chapter for me. I never thought that I would have a battery implanted on one side of my chest, mirrored by a central line on the other side, but even though this isn’t where I thought I would be, I’m encouraged and hopeful for the future. I can look around and see more blessings in my life than I could possibly count. Though Lyme disease is part of my life, I’ve been given a family that supports me not only emotionally but has the knowledge to help me understand things medically as well with nursing, pharmacy, and EMT experience. I have friends who love and care about me and I have found a community full of helpful souls via social media.
So I’ll strike my superhero pose and enter this battle with my head and hopes high knowing that I am not alone. My opponent may be strong but I am stronger and I’ll keep trying for as long as it takes to take back this body of mine. These bugs won’t win.