These past couple of days went from 0-60 very quickly. I went from being shuffled from doctor to doctor and pumped full of drugs to now. I am not only having one surgery but two. On Thursday I went to the port doctor to have my port checked again since I am still having the fevers and pain. No one else knows what to do with me. They brushed me off and told me nothing was wrong. CLEARLY it is or I wouldn’t have spent the last THREE weeks in and out of the doctors and hospital. After some persuasion(I have a way with words), they decided to order a test to see if my port was leaking but they needed my POTS doctor to send the order. After tracking him down all day, I spoke to him for the first time since all of this started. He said that the hospital was wrong about the UTI situation, so no infection there. This brings us back to square one, of not knowing what is wrong. After talking to him last week and today, he said that there are four possible options of what is wrong:
1. I have an infection localized to my port which hasn’t progressed to a blood stream infection or sepsis and wouldn’t show up in the blood cultures.
2. I have a slight leak in my port, which is causing pain and tissue problems or possibly infection.
3. The massive amount of scar tissue in my chest from my third degree burns(when I was four years old) and the port surgeries, is irritated and inflamed, causing the problems.
4. I have an infection somewhere else in my body that could spread or develop into sepsis since it has been present so long.
Regardless of which option it is, I need to have my port out. Tomorrow I am having surgery to remove the port that I currently have. I will be portless for a week or so and on antibiotics until the fevers are completely gone. Next week, I will be having a second surgery(which is also the 11th surgery in my lifetime) to place another port on the left side of my chest.
I know that without my port and with all of the surgeries, my POTS will only get worse before it gets better. At first I wasn’t prepared for that. I have been through so much in the past few weeks, let alone in the last year. I then realized, yes I am prepared and strong enough for this. I am the crazy person who took a final(the 211B final) less than 12 hours after leaving the hospital after my last port surgery. Then the next day I flew to Philadelphia and a week later to South Africa. I am the crazy person who went to South Africa for 9 weeks. I had a moment of frustration and weakness but I made it this far, I can’t give up now. I refuse to give up now.
I have been through this same surgery so many times before but I think for the first time, I am truly nervous. It is probably because I know what to expect and have had so many complications in the past. I am also still a little traumatized from the time they did the surgery and the numbing meds/anesthesia did not work. I have to go in with a positive mindset. I always hope for the best but prepared for the worst. No surprises. Wish me luck tomorrow!