My First Few 'Portless' Days

As soon as I escaped from the hospital that Friday, after my port was removed, I was ready for a nice hot shower. I had to wait 48 hours, but I was ready. After 14 months of the port being in, having to attempt to keep it dry, try not to sweat too much with it accessed, tape it up for each shower, and avoid repetitive motions, I was ready to live a 'port free' summer. I left the hospital in pain, having only spent a few hours at the Ambulatory Care Center for the procedure. My collarbone ached from the tube being pulled from around it, and the topical anesthetic began to wear off throughout the day. That entire weekend my right collar bone and upper chest ached from my body readjusting to the empty space and trauma inflicted on it. I prepared Saturday for Easter by going shopping with my mother. I wanted to get hair dye, because I tried going red before surgery as an act of teenage experimentation but I hated it and had been waiting to try and dye it back. I still could not stand or walk long without getting out of breath so I had to take breaks to walk the few feet into CVS and look through the color options. That night, after 36 hours, I decided to color my hair with my mother's help. The shower was the best I have had yet, though painful. The color toned down the red, frustratingly enough not fixing the problem completely. It was good enough to be decent for Easter pictures and I opted to color it again the next weekend to try again. Sunday morning came and my shoulder area was at the peak of it's soreness. I was well enough to take pain medicine and pull a dress on over my head. After makeup and hair were in place I was ready to head to the family Easter dinner and do some family pictures. 

Cousin portrait for Easter.

That weekend was a great time for me, realizing that the upcoming summer would be a good one. I realized that upon full recovery I would be able to shower without the tape, and jump in the pool to cool down. I would be able to have an even tan, not stay home every Monday morning for visiting nurse appointments, and start upper body exercise. I would be able to forget worries about germs and infections, not have to be on IV medicine treatments twice a day, and not have to avoid pressure from strapless dresses and backpacks on my right shoulder. The summer would be that of freedom, of healing, of hope, and of adventure. I only pray that it will be everything I dream of, fulfilling it's true potential as the summer I turned 19, survived open heart surgery, and was completely IV free. 

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.