The moment I remember first was telling my mother that it was okay for her to leave. I wanted her to be able to go to the place her and my father were staying down the road, and grab some sleep. The place is David's House, a pediatric housing unit for parents in tough situations who need a bed and a hot shower close to the hospital, while their children are in-patient at Dartmouth Hitchcock Medical Center. She left the arm chair she had been sleeping in and went to catch a nap in the twin sized bed at David's House while I was stable. The vomiting had stopped, my pain was more controlled, and I wanted nothing more than for her to be comfortable. After a few hours, I was awakened to the information that they wanted to pull the large chest tubes that morning. The chest tubes were about half an inch in diameter, running in two incisions above my belly button from the center of my torso through to my lungs on each side. I knew it was going to be a painful experience for those to be removed, and I told my mother I wanted her to see me smile once more before the procedure. She rushed over just in time for the clear snakes to be pulled from my body and the remaining holes tied closed. It was like something from a horror story, the pain of my insides being ripped and my skin being pinched closed with thread, still haunts me. That was my first clear memory post surgery. I woke right up from the adrenaline of that pain and can truly say it was a traumatic experience.
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Before Surgery |
The rest of that day is washed from my memory. At some point I was transported from Cardiac ICU to the Intermediate Cardiac Care Unit for the rest of my stay. To understand the entirety of the procedure I want to review the stress my body was put through. First, there was a heart and lung bypass machine that ran my body while in surgery, it entered in my neck as an IV, and in my major vein running from my groin and cycled all my blood and oxygen in a closed system. Second, there was the chest tubes described above, one for each side of my chest to drain inflammation from the chest cavity through the procedure and recovery. Third, there were two additional incisions near the chest tubes that contained pacing wires (an external pace maker basically, to control the rhythm of my heart if need be after surgery). Fourth, there were arterial IV's that measured blood pressure in each of my wrists, causing extreme bruising and pain in the joints during recovery. Fifth, there was a sternal incision down the center of my body where everything was separated including my sternum, muscles, organs, and of course the skin to allow for access to the right side of the heart. The surgeon did a great job keeping scarring in mind, and the skin incision is only 4.5 inches long (he worked in a larger area underneath the skin, and the skin is glued together to reduce the scar). When it heals you wont even notice the scar that much. The bone was divided down the center and instead of wiring it back together like traditional open heart surgery, I was stuck back together with permanent stitches that will not dissolve but also not be obvious under my thin torso. Now that you are fully aware of the immediate and obvious trauma, add on the thirty pounds of fluid absorbed through the procedure, the seven scars I will always have, the emotional trauma, the general pain, the sore throat from the breathing tube, and the 2-3 months recovery to heal the sternum. This is the most invasive surgery possible, every system of the body is affected (from respiratory, circulatory, skeletal, musculatory, and lymphatic systems to the digestive/urinary tract, and even the nervous system), and there is constant moving from breathing and your heart beating through your entire recovery.
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After Surgery |
On day three I still fought with nausea from the painkillers, and constant pain while breathing. I remembered what I was told before the surgery, that patients "Don't usually complain of pain while breathing after surgery", and I wished it was true. I switched from PCA (as needed, you push a button for a dose) Fentanyl to oral Oxycodone. Nothing was working and all of it made me sick. The nausea medicine did not cut it, and I was barely able to eat a few bites of jello or drink a protein shake with medicine doses. One evening while lowering myself into the arm chair I chose to sleep in, I felt a rib in my upper left chest slip out of place with a pop. This slipped rib caused me pain all throughout recovery, popping in and out of place and affecting my comfort level while trying to rest. Those few days were some of the most painful, uncomfortable, nauseas days I've ever had. I was given a pillow in the shape of a heart with a real heart pictured on the front to hug while I adjusted (keeping me from pushing with my upper body and ruining my internal sutures). Pillow in hand, I was pushed by physical therapy to start walking immediately. Uncomfortably attached to a urinary catheter I pushed myself up and down the hall. One evening (I believe day 3), the catheter was pulled, which also stopped the diuretic medication I was on to reduce fluid retention in my body. They started me back on my confusing IV treatment regimen, and even used my port for blood draws (much to my surprise, usually they won't touch a medi-port if they did not install it). I was started on Metoprolol, a beta blocker medication to reduce heart rate and blood pressure through recovery. The dose is started small and increased over time while your body takes three or four days to adjust to the new levels. At first it can make you feel really tired and abnormal, but once you adjust it reduces your anxiety levels, helps you sleep, and is better for your recovering tissue. The changes my body experienced kept me busy for those few days while the pathology department looked over my clotted mass to decipher the 'myxoma' and its origins. Up until this point, we were told it was a right atrial myxoma, a non-cancerous collection of slow growing tissue inside the heart. Usually these masses are attached by a stock, need removal at some point (or are found in autopsy), and there is no explanation to their cause. We wouldn't know otherwise until seven days after surgery. See 'Pathology Results' post for more info.
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Artery IV spots, painful bruising |
After the chest tubes and catheter were removed, the pacing wires were pulled out. That was not nearly as painful as the chest tubes, but it was the same sort of pulling, sliding, grinding, uncomfortable feeling. It ached afterwards for a short time, but there was no stitches to tighten or worry with on the skin, which helped. I had a new IV put in my other arm which only lasted for a day, but did not leak around the entry site or sting. One of the best things I experienced was before being dismissed from the hospital I got to use special adhesive remover pads, and get all the gunk off of me from the tapes and stickers. That shower was great, and that night I had a visit from my best friend Rose and my boyfriend Robbie. It was great to have different faces in the room and be in a clean state of mind while they sat with me. My father had returned home after the two night stay at David's house, and my mom stayed in the bed in my room. The bed (which I swear was broken) adjusted every 20 seconds on the dot, even if you were not in it, and the constant movement was too painful for me to relax with. I chose instead to rest in the armchair surrounded by pillows and reclining my swollen legs and feet on the unstable footrest (usually we supported the footrest with another plastic chair to keep it from suddenly falling closed). It's sad when a surgery patient chooses the chair instead of the bed because the bed is just that annoying. We were told most heart surgery patients choose the reclined position instead of laying flat for the first two weeks. I think the reason is because the bed's are worse than the chairs. Plus when you are fighting nausea, the last thing you want is to lay down flat.
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New IV with a smiley! |
Day three is when I began to stretch how good I was feeling (after the medicine adjustments, tubes being removed, an uneasy shower, restless nights, and still struggling). I just wanted to go home and be in my own bed, instead of feeling couped up at a hospital. I received my wish, and with hopes to a night of sleep without being poked or prodded awake every hour, I left on day 4 for the bumpy trip home, and some KFC.
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