Hasta la Vista Central Line: Update 5/18/23

It has been a month since my port, (central line) removal and things are going well.

The day was finally here. Dad drove Mom and me to the vascular center in Virginia. When we arrived in the waiting room, the receptionist told us that this appointment, that had been scheduled for four months, was not covered by my insurance. Seems like something that should have been covered any of the prior months. I even mentioned I had called the week prior to make sure insurance and any instructions were finalized and settled but did not receive a call back. Immediately the stress level went up. There were a few other paperwork things that were not going as hoped as well. Finally, someone comes out and says, though the insurance was not accepted they were going to proceed with the procedure free of charge. I even repeated back to him what he said to make sure I heard him correctly. So on to the next step.

They took me back to the operating areas to get me prepped. While this was going on they had a difficult time trying to figure out where materials were located that I wasn’t allergic to… more stress. The staff in the back was very kind even with the stress. Once it was time for the procedure, the doctor described what was going to happen. She mentioned that she would have to do a small incision to help loosen the line. BUT because my line had already been coming out a little bit by little bit over the last few months, the doctor did not have to make any incisions. In fact, she didn’t need to use numbing… cue anxiety haha. But the removal itself went really well. It went smoothly and quickly with minimal pain. After the line was removed I did have some pain but nothing major. After monitoring me and my removal site for a little while, I was released. We returned back to our rental to take it easy.

The next day I had an appointment with my Specialist. The appointment went really well. We discussed the previous several months of treatments with all of the symptoms and effects we had been seeing, as well as, what the next several months of treatments would look like for me. I will have a lighter treatment over the summer with one week on and three weeks off. I am still treating but looking forward to a shorter duration for each protocol. The protocol meds are changing some as well, but similar to the last few months. At the end of the summer, I have a phone appointment with the Specialist and then I will start aggressively retreating Babesia for a few months. Babesia is statistically the most relapsed among IV patients, so the doctor always retreats.

The weeks following my port removal have been busy. It took time getting used to not having a bandage on. For so long I had to have a bandage on and couldn’t sweat or get my port area wet, so it almost seemed wrong having a hole in my chest and not covering it up. I waited a full two weeks before getting a shower. To be honest, I was just scared to get it wet. I am finding I have to do a lot of things scared right now, trusting God, but scared.

I have completed my first round of my new protocol. It did make me feel sickly and more fatigued. There are several things I am still dealing with, but the Specialist reminded me of how sick I was and therefore that healing will take a while. I continually have to remind myself to give myself grace.

Though I am doing much better, I am also finding this stage of treatment is harder than I thought it would be. Please continue to pray for me as I hammer out a new routine and venture out in things I am trying to do. Also, be praying for me body to heal well and my mind to allow for the process. Additionally, I have a bone spur in my foot that has been painful, please pray for healing and relief from this. I start my second treatment round next week. Again, I appreciate your prayers and support.