Port Removal Procedure

The week I came home from the second hospital visit, I spent Friday in the hospital again. We were all anxious to remove the port, after we found out it possibly was the cause to all my heart problems. My Lyme specialist must have discussed it with the head of Dartmouth Pathology, because he supported immediate removal of the port. I wanted it gone, my thought behind that being it was coming out in a month anyways and I might as well have a recovery from the procedure while I'm already in recovery from other procedures. That same week I had an appointment booked for the port removal procedure, so I prepared a ride to Concord Hospital and ventured out early Friday morning to place myself under scalpel again.

Rolling myself onto the bed in a familiar hospital gown, I waited for the nurse to decide where to place my IV. I had tried to tell her where the best place would be, but she tried her own idea anyways resulting in a failed attempt. The next attempt was done by the IV team that was called in. I smiled as the IV nurse looked my arms up and down, landing the exact spot I suggested a half hour before. Once the IV was in, a few papers were signed and I was eventually rolled in to a familiar looking well lit room. I got to meet a few nurses and had a familiar face to my left (the nurse who preregistered me and prepped me for the procedure). Then the interventional radiologist performing the procedure came in. He asked about medicines that worked for me and I ran through a brief collection of history with the port placement procedure's bleeding problems, and my lack of response to sedatives and Lidocaine. I requested no sedatives, for they made me so sick previously I would just spend hours throwing up. I also told them they needed to use Sensorcaine because it works better for me. Sensorcaine, specially ordered from the pharmacy, is a special local anesthetic that takes longer to kick in but lasts hours. That combined with Lidocaine Epinephrine (used to constrict the blood vessels and reduce bleeding) was a fairly decent combination during the procedure.

After numbing the area and while I was wide awake, the cutting began. Without even a shield between my face and the pocket opened in my chest, I watched the shiny silver tools twist and turn and cut around the purple box inside to dislodge it. My body had grown around it to a point where a fifteen minute procedure took an hour, the clamps slipping from the small box and my tissues holding on for dear life to the foreign object. Eventually the catheter had to be broken from the port box, and it was removed first with a smooth pull and some pressure. A nurse held my neck for a few minutes to apply the necessary pressure, and the radiologist showed me the tip of the white tube as he squeezed an inch long blood clot from the tip of it. "I wouldn't doubt the possibility of you having a clotting disorder of some sort after seeing the way the vessels encompassed the port and this clot" He said.

Still there was more tugging as he tried to free the port from my chest, yanking and pushing on my dainty frame. All I could think was, 'Hello, I'm right here! Be gentle with me!' as I felt the clamp slip from my right side again. at some point the decision was made to cut me open a little bit more for more work area. I grimaced as the blade created more of a scar, imagining summer on it's way. I had told the radiologist before the procedure that I was known to hypertrophically scar, and asked him if he could work that knowledge into my already present scar. He tried his best, closing me up with dissolving stitches under the skin, and glue and tape above the top layer of skin. It's a small scar, about an inch and a half long, and after two weeks it is still raised and red with steristrips helping hold it together. I watch the small white strips of tape weaken with each shower, waiting for them to fall off on their own so I can apply scar treatments and soften the scar before it gets burnt this summer.

Overall the procedure was yet again a traumatizing experience. I was wide awake, in pain, could not take any pain medicine, and felt like I had to stick up for myself with the doctors. I spoke up with my knowledge of my own body, bringing everyone up to date on my recent heart surgery and complications, pushing for a potassium blood test that they would not run, and looking out for myself. The strength it takes to look at a doctor and tell them how to do their job as only an eighteen year old girl, is indescribable. I have had to learn to advocate for myself more than any other time in my life, in the past month. All the struggles have led to one big picture of someone who is inspired to use my knowledge and experiences to advocate for others.

Pathology Report

Wednesday was the day everything changed. I had been home for a few days, struggling with symptoms like stomach/shoulder pain, nausea, and a cough, and decided to attempt my second walk outside of the house. I asked the five year old child my mother was babysitting if she wanted to go with me. it was a great spring day, slightly windy but refreshing as we made our way along the paved street I live on. I estimate from my house to the stop sign is a small hill that runs a little more than an eighth of a mile. From my door step to the stop sign and back is at least a quarter of a mile, I did not plan to walk that far. With the energetic girl bouncing beside me I suggested we 'search for bunnies' and in all her excitement we trudged to the end of the road. I took a break for a few moments here and there and felt tired, but did not feel dizzy or faint so I continued. When we returned to the house I was so proud of myself for embracing the distance and good weather and pushing myself to a higher standard. Immediately upon sitting down I felt sickly, with heart palpitations, pain, and fatigue. I knew I had walked too far for my second walk. My heart rate was checked and landed at 120, which is not preferred but also not terrible. I ate something, got my medicine in me for pain, and relaxed on the couch for the next few hours.

When the phone rang and read Dartmouth I knew it must have been my surgeon with the pathology results. He had told us, while I was still hospitalized after surgery, that the mass removed looked clot-like, nothing he had seen before. He said it was bigger than they thought, golf ball sized and hardened to the point where surgical removal would have been the only choice. He also said that he was glad we did not take the watchful approach and wait to see what happened with the believed Myxoma. I opted for the surgery right away due to medical insurance reasons, but it ended up being a blessing in disguise because the mass 'did not need to be much bigger to completely block blood flow' he said. If it broke off I would have been a sudden death case where autopsy would be the only answer to my cause of death. Over the phone he confirmed his previous suspicions. A large and hardened clot, also known as a thrombosis, was removed from my right atrium with no explanation for how it organized itself on the wall inside of the heart, or how long it had been collecting and growing in size. The report calls it a mural thrombus meaning clot attached to the heart, and describes it with muscle fibers and tissue encapsulating the hardened structure. The best idea for a cause was the tip of the port catheter that sat right beside the mass in my right atrium. Never had my surgeon seen this before, and still we are not sure of the cause. The surgeon recommended that once I am fully recovered we test for blood disorders and clotting disorders that could be a more genetic explanation. The bacterial and fungal cultures were all negative, and I became quite the mystery to many in the hospital who do not see young girls in the cardiac ward for open heart surgery often. Later on, a nurse informed me that in her 17 years of working in the cardiac wing of Dartmouth she has only ever seen two patients for cardiac tumor removal, and never one for my mysterious diagnosis. I was lucky to be alive, that in the month up to surgery the blockage did not release and reek havoc on my body. The possibility of the port causing all the pain with the surgery, put me in an anxious spiral, and immediately after hanging up the phone I got quiet. I was frustrated for this possibility, and I wanted nothing more than for the port to be removed immediately. "This is coming out tomorrow, if it can" I cried to my mother. Yet again everything I had been through wrapped right back around to Tick Borne Infections. My mind swelled with these realizations and my heart felt as if it could pop. Little did I know, that terrible feeling that developed was something much worse in the making, and within a few minutes my world would turn upside down.