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Tuesday, April 22, 2014

PSYCH! Not Going Home Yet

After a few days of nurses watching me and typical hospital stay experiences I was led to believe I could head home Saturday. The requirements were that my pain be under control, and my heart be draining less than 50 ml of fluid in a 24 hour period. The drain appeared to completely stop draining after Thursday, and my pain was doing better than ever with the discomfort in my stomach, shoulder blades, and chest relieved for the first times since the surgery. However, Saturday morning when I was awakened at four by a heavy man wanting to steal my blood, I recognized very familiar pain. He took the blood as I sat in a fatigued stupor, and upon him leaving I struggled with shortness of breath and the pain in my upper stomach. I went to the bathroom in desperation to relieve the discomfort, wanting to just fall back asleep. I felt in shooting to my shoulder blade, and nausea setting in. It was a mirage of symptoms previously ignored that I now related to the traumatic events of the pericardial effusion that led to cardiac tamponade in the days prior. I informed the nursing staff of my discomforts and settled into an uneasy sleep with the bed sitting upright. Later that morning an Echo cardiogram was scheduled to check the heart before the tube was removed from my chest.

While waiting for the Cardiac Sonographer to be called into the hospital on a Saturday morning, an attentive nurse decided to change out the type of suction system I had, seeing as it was not doing anything and I was having symptoms. It turned out to be just a different type of system, not anything that was pinpointed as broken or defective. When the new system got running and five different nurses figured out how to add the water to the suction compartment, it became apparent there was actually fluid building up on my heart again. After 100 ml of fluid drained off of my heart in just an hour (double the amount needed in 24 hours in order to send me home), the ultrasound was performed. It showed a small pocket of fluid still there, and the tube was left in longer to continue draining a few more days. This gave my heart the time it needed to heal more in the hospital while the Prednisone kicked in and my heart rate adjusted. I was not allowed outside, was craving a hot shower, and started hating the food. I also was not sleeping enough, and the IV in my right arm was hurting from still being placed ever since my ambulance ride five days earlier. I struggled to stay sane, and the Prednisone side effects of mood swings and food cravings were in full force. Thankfully through all of this I had some pretty amazing visitors. My loving church pastor visited me with prayers and well wishes after driving all the way to the hospital just to see me, which made me feel incredibly loved. I also had a long time friend stop by when I was at the hospital alone on Monday, and even went for a walk with me when I was finally released outside. Mostly I had my mother there with me until Sunday night when she had to return home for work the next day. I also had my boyfriend visiting me almost daily, bringing snacks and sanity in the form of chocolate and hugs. He worked hard to learn about every small detail of my medical care and educated himself on what I was going through and how he could help. It was great knowing that even though we had not been together very long, he still was not scared off by the traumatic medical experiences he had to witness. In fact it made us grow stronger, and we grew in our friendship and relationship daily with long philosophical talks and lots of laughs. He lifted me up in multiple ways when I was down. It wouldn't be hard for anyone to feel insecure after experiencing so much, but he concentrated on building my self esteem and reassuring me that I am not defined by my struggles, and there is certainly something special about me worth sticking around for.

By the time the chest tube came out on Monday, I had my pain well controlled, my stamina to moving around was building, I was independently helping myself to the bathroom and kitchen for water, and anxious to get outside. They finally released me that evening for a short break outside where I walked myself to the elevator and out to sit in the breezy evening air with my friend and parents. Upon returning to the room I was able to tape up my arm IV and chest tube insertion site, and take a hot shower. It was a painful shower and I struggled with a pinch in my back and some knee pain for a few hours afterwards, but slept on clean hair and was excited for that. The next morning started with teams of physicians assistants and doctors preparing me for discharge. I had another ultrasound done where I questioned the technician about her schooling experience and how I was interested in the career option for myself. I also had a chest X-Ray, clean blood work, normal heart functions and great vitals. All was ready for me to head out, and my mother's friend was called upon to pick me up. I packed my things, even attempted french braiding my own hair (which raised my heart rate quite a bit), and was ready when my ride showed up to walk myself to the car. I got home and immediately wanted food. Sitting in the same place I had when I left the house by stretcher a week before, I thanked God for the fact I was still alive to see my family and house again. It felt good to eat with my cat by my feet and the busy life of my family swirling around me. I knew what I had just been through was too much to ever fully type for my blog readers, but I would try in the next days to recount the experiences to the best of my ability for other's around me, and also for my own outlet.

ICU Round Two

The bed rolled to a smooth stop as I arrived in ICU after my Pericardiocentesis procedure Wednesday night. Faces bobbed to and from, as a young man assisted with getting my vitals and making sure I was comfortable. The talk spread fast that I had returned, my face familiar to the staff from the week prior when I was recovering from open heart surgery. My first questions were of my mother, curious if she had made it and if she knew I was okay. I had pain in my left shoulder blade, a Pericarditis from the foreign object that now rested next to my heart to drain fluid away consistently. One nurse tried to give me Oxycodone, and I refused to take anything for my pain as I knew it would make me feel drugged and nauseas, and I would rather struggle through the pain. I drank some water and began to let my nerves settle from the experiences of the evening. My surgeon, Dr. Discipio, popped his head in to check on me real quick and then buzzed off to search the ICU waiting room for my mother. He knew the importance of updating her and getting her in to see me in an improved condition after her long two hour car ride in the dark. The nurses took such great care of me in my private room, attending to every need and pressing for me to inform them of any discomforts. I felt almost like a superstar as I was tended to and admired for the unlikely experience I had. My surgeon reassured me that this was a phenomenon experienced in younger patients often, understood and treated effectively, and not that big of a deal. I caught on to his attempt to soothe me and keep me from worrying, however, and heard the rumors of the nurses on how uncommon the situation was. Dartmouth is known for it's low post op return rates, and here I was as one of the youngest patients they had seen and back for round two.

My mother's face rounded the corner of the glass sliding door to my room and relief swept over me. I was happy she could see me alive, able to talk and breathing normally. I had missed her beside me in the helicopter, and while I waited for the procedure to be performed. I had not known what to expect and everything happened so fast that I had to handle it all on my own. I knew I was in good hands but there was nothing quite like knowing I was in her hands. She came beside me and looked me over, understanding the trauma I had just experienced. It was an unspoken moment of understanding, and my heart relaxed at the sound of her voice. Nothing can describe the connection between a mother and her only daughter after being through so much together. It is a concrete bond, where as best friends we respect each other and could never value each other's company more. I have fun with my mother, unlike most teen girls who fight to escape their mother's presence or replace her with boys and best friend's parents. Obviously I am still an 18 year old who has been home bound for almost seven years due to medical problems, and I yearn to have freedom and independence. I love being able to attempt normality, go out with friends or for dates, and drive myself places. I even value going to a doctor's appointment on my own and practicing my ability to speak up for myself. These are great practices to have as a chronically ill child entering adulthood, and I will continue to push for my independence as time progresses. However, nothing will quite encompass the relief of my mother by my side in the ICU that evening. We talked for hours as we drifted to sleep, her beside me in an arm chair, about the evenings events. I asked questions to refresh my memory and make sure my best friend and boyfriend knew I was okay, and told her how much I loved her.

The next morning during shift changes, a beautiful dark haired nurse came in. She was sorry to see me back, but excited that she could be my nurse again. She had requested me upon hearing my name that morning, and wanted to make sure the best care was given to her returning client. I can't even encompass how sweet she was, eager to help and make me comfortable, making me feel loved and overwhelmed with her concern. It was great to know they were taking good care of me, and I was going to be okay. I was under the best surveillance, and not relocated out of the ICU to the Cardiac Intermediate Care Unit until I was ready. That gave me time to snack, keep up on Ibuprofen and Tylenol, use the bathroom and get out of bed, and also have a visit with an RN who acts as an advocate at the hospital. The advocate kept in touch with doctors, requested I be allowed to keep the ICU bed (which I was more comfortable in, it did not adjust every few seconds like the bed I had during my previous stay) after being transferred, she even got a Velcro bra for me to try and make me feel more comfortable. They were anxious to heed our every need and we covered the staff with questions about the condition I was in. By the time I was rolled to the ICCU, I was used to the response from the nurses and LNAs who recognized my pale structure in the bed, returning to my second home. The shock and pity filled the air and I glanced around on my way to my new room to see who I recognized. With too many faces to count I allowed the event to occur, and was maneuvered into a small solo room with a large glass window and private bathroom. I still am convinced I had the best view in the entire hospital for my second stay at Dartmouth. The window overlooked a mountainous scene above the north parking lot with a clear view of the helipad, so I could watch the emergency team come and go day and night. I could also see cloud formations adjust around the mountains and the sun light grow and dim throughout the week. More than the entertaining view, I was pleased to have my own room. A few patients shared rooms with other's, but I got lucky that I was left alone for the most part to rest and recover. At night they let me sleep for multiple hours instead of checking vitals every hour. I was hooked up to telemetry again that watched my heart constantly on a series of screens down the hall. I even got my mother to help me shift to the bathroom and back to the bed with all my gear in tow. I was attached to a chest tube drainage box that hooked on and off of pressurized suction nozzle in the wall. Also, I had an IV running saline slowly to keep my port open for a few days. That was soon removed and I snuck a heparin in the line to upkeep my own catheter from blood clots, which the hospital refused to do.

My stay in the ICCU lasted from Thursday until Tuesday, and was a long tedious visit. I spent a lot of time eating hospital food from a pediatric menu, napping during the mornings, adjusting to changed medications, receiving visits from residents, PAs, RNs, and surgeons who heard about my case, and getting to know the staff. I borrowed a book for a few days from one of the night nurses all about the heart with pictures and explanations. I'm pretty sure my time there was the most educational, as I soared through the book reading about my own heart complications and asking questions to the other nurses about the heart's functions. One of the LNAs was working in the evening and explained thoroughly the electric pulses of the heart and how Lyme can even affect the rhythm. After Thursday and Friday in the hospital, I was ready to head home Saturday. I clung to the possibility of being able to sleep in my own bed. After the pressure was removed from the heart I could finally sleep laying down, move around more comfortably, and my cough had even resided. My antibiotics for Lyme stopped on Friday, and it was decided that the port would be removed the following week because of it's cause in my heart problems and throwing clots.
Robbie visited me almost daily during my stay, bringing ice cream and cards to keep me busy!

 Now that the antibiotics had stopped, and the antifungals stopped, I had to concentrate on the new medicines prescribed to me. I was put on a Prednisone six week taper which was mandatory for reducing the inflammation around my heart and the fluid production that caused my complication. Most Lyme patients can not do steroids, being that they kill your immune system and let Lyme run wild in your system. This is the only time when needing steroids is more important than worrying about my symptoms right now, this is life or death. It's the exact reason I once hesitated listing steroids as a medical allergy, knowing that if there was a trauma situation where steroids were needed and I was listed as allergic it would affect a life or death situation.

My mother and I were not happy with this change, but I made the emotional step to accept my situation and let God handle the rest. I informed my specialist I wanted to take a medication holiday while we addressed the heart recovery, have the port pulled (which was going to happen in a month upon losing insurance coverage anyways), and reduce the number of toxins on my body as I recovered from the two weeks prior. My body had been put through a lot, and I needed to allow it time to return to a normal operating level before reassessing the treatment situations for the Lyme Disease which has become the least of my worries lately.

My heart medication was also increased to control the heart rate and blood pressure levels, and it took about three days for that to settle in and begin working smoothly. I started walking around the hospital more to stretch my legs, and begged for the chance to breathe the sunny spring air I could see outside my window, teasing me for freedom. Within days I had finally began losing an impressive amount of water weight, fifteen pounds falling off and peeing like a racehorse daily. My feet looked normal again, and other than night sweats I was feeling pretty good until Friday night, when again discomfort overcame me, and my hospital stay was expanded.

Monday, April 21, 2014

Returning to Dartmouth

The space in the helicopter was limited, but I didn't notice as they slid the stretcher into the enclosed area and crawled in around me. The Ativan had kicked in and I felt safe in the hands of the emergency team that was transporting me. Why I had previously begged not to return to Dartmouth, I'm unsure of. I'm guessing I just did not have enough oxygen in my brain to make a sound decision. Obviously I was needing to return to the better hospital, with my own surgeon who knows my case and can save my life, and better care facilities. I wouldn't willing suggest staying at the local run down hospital's emergency department with staff that was untrained in severe cardiac complications, like the effusion and cardiac tamponade I was experiencing. Cardiac tamponade is a complication from open heart surgery that occurs from an excessive build up of fluid on the heart to a point where a chamber collapses from the pressure and is no longer pushing oxygenated blood through the body. It is a serious and deadly condition, not commonly reached in post op patients. I was young for an open heart surgery to happen in the first place, but the complication of the fluid build up in the pericardial sac around the heart is something that can happen to anyone. The concern is if it is internal bleeding and blood is building up, instead of fluid from inflammation, than there may be more serious problems. Either way the fluid must be drained off of the heart to relieve pressure so it can beat normally. A small amount of fluid, under 50 ml, is naturally lubricating the pericardial sac at all times with the body reabsorbing excess constantly. Any more than that affects the hearts natural function, and this is when a special procedure needs to be performed. Pericardiocentesis is a procedure where the fluid is drained off of the heart. It can be performed in trauma cases with a large needle inserted near the bottom of the breastbone, or in a Cathlab procedure where a drainage tube is placed. This is what I woke up to in the emergency room, and thankfully was postponed until my arrival at Dartmouth. The DHART (Dartmouth Hitchcock Advance Response Team) guys were prepared to perform this emergency drainage procedure if my condition worsened during the flight.

Once I was on board and the helicopter took off I was stable enough to twist and look out the window. I saw the lights from the city drifting farther away as we rose in the sky and noticed the sun had set sometime between me rolling out of the hospital and boarding my first helicopter ride. I also saw the frozen lake beneath, and stars twinkling through a clear windy space. The ride was rough but lasted less than twenty minutes, and I managed to fall asleep for the last fifteen minutes. I was happy that they moved me quickly instead of a bumpy two hour ride by ambulance in an unstable position. The air felt like a cool promise upon arrival back to Dartmouth, as they pushed me across pavement to the hospital I had departed days earlier. I knew I was in safe hands, and that my mother was on her way. The first new face I saw was that of my confident surgeon who grabbed my hand and reassured me that I was in his care now and I would be alright. I remember thinking 'I feel terrible, he will fix me though.' He stayed by my side the entire time, as they ran new tests due to LRGH not sending along proper records. I was poked and prodded a million times that evening, becoming used to the abuse on my body. I knew they were just doing their job and I did not complain. At one point I made sure that my blue spa socks, gifted to me the day before by a close friend, were removed from my feet and put in a personal belongings bag. I did not want to lose something so significant to me after one had already fallen off and I begged for it to be found while settling into the trauma room in Dartmouth's ER. Soon after, the DHART team disappeared as swiftly as they had swooped in to rescue me, and I never saw them again. New nurses took over my vitals and making me comfortable as Dr. Discipio decided what the next step would be. I told him to make the decision for me, because I could not think clearly enough to decide what I wanted. He gave me an option, we could try for a Pericardiocentesis in the Cathlab with a doctor that had to be called in to place the tube and Discipio would watch, or we could go to the operating room where my doctor would do his own procedure, of what I'm unsure, and they would sedate me properly. The doctor was called in and an emergency Pericardiocentesis procedure was performed before my mother even reached the hospital, while I lay awake through the entire thing.

The first step was using topical anesthetic around the ribs in the left 5th and 6th intercostal space. The area was painful to numb and I whimpered as the needles dug through my bones. Then a large needle was inserted at an angle into my torso, and I could feel the puncture like a balloon popping as it pierced through the pericardial sac. All was watched with ultrasound and X-Ray equipment to avoid puncturing the lungs or further complications. The needle was retracted leaving a white narrow tube in place that was maneuvered with a metal wire for better positioning. I felt pain in my shoulder blade, typical of having a tube between your heart and it's protecting layer. Once in place they used large 100 cc (or ml) syringes to start pulling fluid off of the heart. They got through 700 ml of fluid and began to slow down, wanting to leave a little fluid to naturally drain with the tube left in place, avoiding another painful complication called Pericarditis where there isn't enough fluid creating further pain. The fluid was tested on a table to my left to make sure it was not bloody or infection filled. It was neat to think the twenty people bustling around me were doing their little jobs so efficiently and quickly and yet so late at night. They were all busy with their tasks at hand and to my left and right were the two most experienced in the room, making sure the job was done right. After the fluid was pulled off, they asked how I was doing. "I can breathe!" I exclaimed in relief. It's amazing how immediate the change was that I felt and I was instantly happy for the procedure no matter how painful it was. Still more work was performed as the drainage tube was covered with gauze and dressing, and I was prepared to be moved to the ICU. On the way out the door yet another angel in disguise took care of me, covering my feet in a warm blanket and making sure my personal belonging's bag followed me to ICU. He held my hand and kept the operating team from sliding me onto the bed hastily, keeping them from jarring me around in my discomfort. I knew I was in a position where I had the best possible care, and all the many angels that followed me along the way made the traumatic experience a little easier. I was cherished as a child, respected as an adult, honored as a lady, and protected as a patient in the care of the medical professionals at DHMC.

Post Op Day 8, The Crash

I got off the phone with my Cardiothoracic surgeon and sat quietly for a second letting the news sink in. I was just told the pathology results, that the port to treat my Lyme Disease was probably the cause of all the past two weeks of pain and suffering. The mass was a large clot, either from the tip of the port or possibly a blood clot disorder they would test for later on when I was recovered. My breath felt labored and I began to feel nauseas. I felt my heart pounding hard in my chest, and fumed about this news. Within minutes I began to decline. I scooted tenderly to the front of the chair, thinking I should go to the bathroom. I told my mother I needed some anti anxiety medicine, and thought I was having a slight panic attack. 'How dare I get myself so worked up over something so trivial', I thought to myself. By the time my mother walked to my room to grab the anti anxiety medicine, both of us thinking I was just upset, I worsened. I grabbed the first thing to throw up in, a cardboard box on the couch next to me, and hugged it to my chest, feeling myself breaking out in an immediate cold sweat. I became so dizzy and weak that I fell backwards into the chair, and turned white as a ghost. My mother returned with a confused look on her face. "What's wrong?" She said, seeing my condition diving fast. She felt the immense sweating and knew immediately this was not simple panic attack stuff. I barely managed to say "something is really wrong, call 911" as I felt myself slipping into the black. She grabbed the blood pressure cuff and the electric machine read 'error', unable to register a pressure as it dropped so severely low. I remember thinking, as people bustled around me, 'wow, I feel terrible. I'm sweating. There's no pain but I think I'm having a heart attack. I don't think the EMT's will make it in time. So, this is what it's like to die? It's happening pretty quickly, a minute ago I was fine.'

I don't remember a section of time as my breathing stopped, and my mother shook my hands to try and keep me with her. I don't remember staring blankly into midair in an unconscious stupor. The paramedic arrived as I was slowly coming to again, my oxygen reading at 60, temperature under 90 degrees. The blood pressure was so low that I was unable to get oxygen to my brain, and I was struggling to make eye contact or understand what was happening. My mother did not allow the rescue team to move me, as they reached for my arms. She protected my sternal incision by pushing them away and helping me move my own weight to the stretcher. Once I was settled on the stretcher I was not moved again except by sliding a sheet to and from surfaces. I begged them not to hurt my chest, still sensitive from a week before when I had the open heart surgery. The got me in the ambulance, placed an IV and began an EKG and all my vitals which were gradually settling back to safe levels. I was becoming more aware of my surroundings and discussed with the paramedic my condition, the syncopal episode, while on the drive to the hospital. She suspected septic shock, maybe from an internal infection. I was wheeled into the emergency room at LRGH and immediately seen by doctors and nurses and machines of different types. They quickly ran a few EKGs, seeing unnatural rhythms, and ran a chest X-Ray in the bed. The doctor got the portable ultrasound machine and placed it on my chest, as nurses bustled around me poking and prodding. I was vaguely aware of the violation of my body, where hands made themselves at home and eyes traveled my scars for signs of problems. My surgeon was phoned about my condition, and a decision was made to transport me by helicopter to Dartmouth as the quickest option. I was no longer in a stable condition, within fifteen minutes I had declined yet again to unhealthy vitals, extreme nausea, and the doctors discussed my echo pictures over me while I wavered in and out of attention. My mother and father were there with me in the trauma room, and a herd awaited in the ER waiting room from the news of my condition. I was listed in critical condition, but my grandparents and boyfriend got to come in one at a time and pray with me and say hello briefly. I don't even remember the faces coming and going, words that were said, things that were done. Apparently I even told my mother I needed to say goodbye 'one last time' and 'don't let them bring me back to Dartmouth, it's so far away'. I knew my situation was serious, but I had no idea how serious. Recounting the events later, I was informed that I had leaned forward to throw up and passed out cold again (every time I sat up my blood pressure dropped to the point of loss of consciousness, which the ER did not pick up on). The doctor yelled for beta-dine, and my mother and boyfriend were rushed out of the area along with another nearby patient. On their way out, they heard the two doctors peering over the ultrasound picture discussing a collapsed right ventricle (known as cardiac tamponade) and fluid on the heart (pericardial effusion). I pulled out of the black abyss slowly, and cried 'where am I?' before looking down. I saw my stomach orange from the cleaning, and the young doctor hovering a large needle three inches from my sensitive stomach. Immediately panic set in and I screamed and flailed. "You are not touching me with that, I'm awake don't touch me, please use Lidocaine," I cried loud enough for the entire hospital to hear. Someone dug in my left arm for an IV access and as my blood pressure rose from the fit the doctor backed off a bit. Right at that moment the DHART helicopter response team strolled in and took over. They cleared out the room, gave up on the second IV possibility, and demanded Lidocaine for the stomach in case of emergency. Ativan was administered to calm me before the flight, and my condition was stabilized. As I was rolled out, half way aware of what was occurring, I got to say goodbye to the lineup of family that had perspired. My parents first, then my grandparents, Robbie, aunt and uncle and their children all yelled well wishes and patted my arm as I passed on my way through the evening to a helicopter awaiting.

Saturday, April 19, 2014

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.

Tuesday, April 15, 2014

Returning Home

I was sent home on Day 4, a beautiful Saturday where I fought discomfort and worsening nausea as the day continued. I finally ate a good meal when I got home, and relaxed in my dad's armchair as I was visited by my friend Rose for a short bit, and then my boyfriend that evening. Little did I know my situation would go from bad to worse. I spent my first night home in excruciating pain and vomiting too much to take more pain medicine. I went twelve hours without anything in my system to help the pain, throwing up, unable to relax, unable to lay flat, and begging my mother to take me back to the hospital. I just wished something would make it stop, or at least make it manageable. I knew in that moment that I shouldn't have stretched the truth earlier that day. When I was asked if I had been eating well, how my pain was, if I was ready to go home, and I answered that everything was fine, I really meant 'It's all terrible but I'd rather be miserable in my own home than in a hospital. This was not however how that worked out. Instead I was sent home early, crippled with pain and nausea, and experienced one of the worst nights I can remember. All that wishful thinking turned into a nightmare that I struggled through in agony.
Me after surgery, first meal

Sunday was the day we began to catch up to the pain. I made the decision to not try the Oxycodone, that it was just too much nausea for me to gain anything from taking it, and I'd rather be in pain. Instead I tried taking Ibuprofen and Tylenol only, around the clock. I forced myself to eat before the pain medicine hit an empty stomach, and took Zofran constantly. By Monday I had the nausea under control, and spoke to the surgeon's Physician Assistant about my concerns. I told her I refused to take narcotics, and she switched the Ibuprofen to a stronger anti inflammatory called Naxoproxen. That seemed to help, and instead of the dose on the bottle saying to take it every twelve hours we did it every eight hours. Once that was controlled I informed Jamie that I could not lay down flat, my shoulder blades and upper stomach just hurt too much. I also had developed a cough, sharp upper left rib pain near my heart, and the feeling that my rib cage was cracking constantly. I was advised that it all was normal, to keep forcing myself to take deep breaths and take some GasX for the stomach pain. Most patients prefer sleeping in a recliner after heart surgery anyways, she said, so it was no surprise. I did not realize at this point that some of those symptoms were not typical post surgery aches. I would find that out Wednesday evening.
Get well flowers from Robbie

My days home consisted of round the clock medications, force feeding myself as I grew an appetite, trying to build up to a bigger walk, and constructing a better sleeping plan through all my discomfort. I struggled to keep my cats from jumping up on my chest, like they love to do, and keeping myself comfortable. Refusing narcotics seemed easy after what I had been through the entire week of the surgery with the throwing up. There is nothing worse than heaving after your rib cage has been broken, other than your entire rib cage being broken of course. One important landmark of being home was figuring out how to move around, which I did with the heart pillow from the hospital and propping myself up with a million pillows everywhere I went. I was supposed to start out slow with walks and increase a few minutes each day.  My first walk made me realize how much my heart was altered. Where I used to run three miles a day, I was winded by slowly inching myself thirty feet. I could not travel alone, I could not easily move, and I was saddened by the setbacks to my physical fitness. My legs had swollen from the thirty pounds of water weight I put on, to the point where bending my toes was uncomfortable, and the skin felt like it was ripping when I moved. I kept hope that in two weeks I would progress as predicted, losing most of the fluid retention in my body, and gaining up to a comfortable thirty minute walk daily. I knew I would improve if I kept positive and reminded myself that there must be a recovery period after such a severe setback. Plus, I had so many people praying for me all over the map that it was impossible for me to not improve eventually. It would take time to get back to where I was, but it was going to feel so good when I reached my peak athletic performance level and could look back on the mountains I had to climb to get there. Nothing worth having comes easily.

Monday, April 14, 2014

Recovery Day 2, 3, 4

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.

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.

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.

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.
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.