Easter Sunday in the ER

Easter Sunday is always a huge event for my family. We are a Baptist family that convenes every Easter for a large meal and time to reconnect with each other. It's a loving event where miracles are celebrated and people come together to recognize the power of faith. I enjoyed the day, though I had to leave after a few hours from fatigue and pain. I was recovering well from the heart surgery and pericardial effusion, but still this was the biggest outing I had so far. It was exhausting to talk, I would get short of breath walking across the room, and I knew I needed rest. My boyfriend escorted me to his car after I changed into comfier clothes and helped me into the passenger side. We had agreed he would take me home early from the reunion, so I could get a nap in. After I got home I noticed my raised heart rate and felt pressure when I lay down flat. I was struggling for a deep breath and felt familiar pain in my upper stomach and mid back. All these symptoms were eerily familiar to the week previous when I struggled from the pericardial effusion and had to return to Dartmouth. I did not want to go back to Lakes Region General Hospital's ER, especially not on Easter Sunday, but Robbie pushed me to get checked out 'just to be sure' and I begrudgingly climbed back into the car after much deliberation. The emergency room staff recognized my face and came quickly to my aid. They checked my vitals and saw the Tachycardia and high blood pressure. I was wheeled to a bedside where they immediately began the battery of heart tests including an EKG, Echo cardiogram, chest X-Ray, and blood tests. An IV was placed in my left arm, and I saw the doctor within minutes. It appeared that everything was normal, nothing out of place and the heart had only a minor amount of fluid on it, so it was not the severe effusion like my previous visit. They decided pretty quickly that I must have overdone myself with the events of the day and needed rest. My heart rate dropped to a steady 100 bpm and they monitored me for an hour before deciding to discharge me. My mother who had shown up as soon as she heard I was returning to the hospital and found her way from the empty ER waiting room to my bedside, decided to head home. She took off to catch some Zs while me and my man held hands, waiting for discharge paperwork. After an extended period of time the polite female doctor returned around the corner. She saw my IV already out and had a serious look on her face. "If there is any possibility of you having a clotting disorder and you are not on blood thinners other than Aspirin, I am concerned about sending you home without first doing a CT Scan for Pulmonary Embolism" she described. I agreed to stay, better safe than sorry, and another IV had to be placed in my right arm. This time the testing took longer as we waited for someone to come in to perform the procedure, and then waited for the results. In a CT Scan, the radiologist directs the bed into a tube which takes pictures of the fluids in the body and can see things like the lung tissues better than an X-Ray would. It doesn't take long, but Iodine based dye is injected through IV to help the scan pick up on any possible problems. The feeling you get as the dye runs through you is that as if you wet yourself, a warm overwhelming wave from your shoulders that radiates to your legs before disappearing. When the test was all over they wheeled me back to the ER exam room and I waited. I could hear the other patients being pushed to and from, the two across the hall coughing up a lung, and the one next to me recounting his story of the car crash. Eventually I was discharged with no explanation to the symptoms and told to keep an eye on them closely and call my surgeon with any new, worsening, or persistent symptoms. I ventured into the cool dark of the parking lot and felt relieved that this time I was not being rolled into the back of the helicopter for my departure from this building. Crawling into my bed that night was what I needed most, and remembering to pace myself in the days ahead as well.

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.

Home Sweet Home, This Time To Stay

I took in a deep breathe of felines and family as daycare children circled my living room the day I returned home. I had my 'therapy cat', Pippin, at my feet and my parents and some kids carrying on around me and I decided it was not that bad to be home. I spent six days in the hospital the second visit, and most of them were sunny and beautiful as a New Hampshire spring blossomed in mid April, stealing the last of the snow from the leaf littered forest floor. This day however, was a rainy, cold, unpleasant Tuesday. It reminded me that paradise is what you make of it. I wished I had enjoyed the great weather on the first days of true spring throughout the previous weekend, but there would be more to come. In fact, more than sunlight I couldn't wait to just feel my soft sheets around me. I missed the ability to lay in my own bed each night, uninterrupted and sleeping peacefully on my side. The side part would not be happening for awhile, as laying on my side felt as if my breastbone would crush at any given moment. I relearned sleeping on my back with pillows encasing me and blankets tucked under my chin. It was not the most ideal but it beat being awakened every morning at four for blood work, six for vitals, seven for rounds, eight for tests, and so on and so forth. I could sleep as late as I wanted, and roll out of my waist high mattress to help myself to pain medicine and snacks. 

Two of my cats taking over my bed the first night I was home.

The program set up for my arrival home was perfect for keeping a close eye on my improvement. The day after discharge I was visited by a visiting nurse who would see me weekly for at least three weeks. She checks my vitals, listens to my heart and lungs, oversees my Prednisone taper and other medications, answers questions, checks scars for signs of infections, and can run blood tests if needed. She also set me up with a Cardiocom system that alarms each morning at nine to check my entire condition, and then sends the results by phone line to the office for review. It starts with a series of questions answered yes or no, like 'Have you been taking your medicines?' and 'Have you eaten a salty meal today?' which keeps me in check. It then measures oxidation, blood pressure, pulse, and weight. I can recheck any of these things at any time of day without completing the full health check and sending the results in to the office. If I feel worse symptoms at any time I can pull up a chair and make sure my vitals are in a safe place before worrying over the possibility of pericardial effusion recurring. 

Along with the VNA, I have a visit weekly from an occupational therapist who is making sure I am not pushing myself too much before I am ready, and that I am doing exercises to stretch my upper body and building up my walking at a safe pace to improve my cardiac conditioning. I did not previously think I would be eligible for Cardiac Rehabilitation so she decided to be a short term stand in, and help guide me at home. We decided on a target heart rate zone, a comfortable 14 exercises to perform for warm ups before a walk, and I was released after week one to start a half mile walk twice daily. The day after I was released to start building my cardiac endurance with walks, I received a call from Concord Hospital Cardiac Rehabilitation to set up an appointment with a therapist for a consultation. Apparently Medicaid would end up covering my unique diagnosis for the rehab program, and hopefully I could find a way to continue the program after the consultation that was booked a month out. The rehab would not only teach classes about diet and exercise and heart function, but also attach heart monitors to watch while exercise is started and make sure a healthy level of conditioning is reached and slowly increased. It gives a great guide to ease a post op patient back into an independent workout regime without pushing the heart to unhealthy levels. I have a way of overdoing things and not taking things slowly, so a guideline to follow and someone to encourage me will help me have accountability as I begin to return to the gym and work my way up to where I was before. 

Settling back into my own medication schedule was another challenge I faced upon my return. I now take Prednisone 40 mg daily (every morning), Metoprolol 50 mg twice daily, Aspirin 81 mg daily, Ibuprofen 800 mg every 6 hours, Tylenol 1000 mg every 6 hours, Axid (antacid) daily, allergy medicine daily, and any additional as needed medications for nausea and sleep. I have, over the course of the week, tried to reduce my Ibuprofen to 600 mg (better on the stomach) and Tylenol to evenings only. I haven't needed to take Zofran for nausea, or Ativan for anxiety at all. I've also been religious about my heart related medications, on a 9 am and 9 pm schedule, which has helped. It's been a huge relief not worrying about antibiotic treatments, and being able to stop the antifungals because of that. My body is still adjusting to all the changes and I haven't decided through the side effects of the steroids how I'm doing yet with the tick born infections. 

The Friday after I came home I was quickly swept in for the Port removal procedure (see 'Port Removal'). Aside from that day, I spent the days adjusting to home life concentrating on appointments, logistics of arranging appointments and paperwork for state financial assistance, trying to appreciate good showers (the hospital revoked that right for a week when the chest tube was in), trying to get myself mobile and reconnected to family and friends by route of social networking, napping and eating myself into a sugar coma, and waiting for a miraculous recovery to occur. The miraculous recovery did start coming in slow doses, as each day I woke up feeling a little bit stronger, a little more awake, a little more at ease with movement, and a lot more inspired. I started getting out and about more, which was a relief from being home every day in a daycare listening to screaming babies that aren't even related to me. I had visits from a few friends, and even was able to dress up for Easter Sunday and spend time with my family. To an untrained eye that had never previously met me, I appeared completely healthy. I could wear more typical clothing, walk around in public for short bits, carry on conversations until they left me winded, and the scar was barely noticeable. Overall my improvements were in leaps and bounds, and by week three after surgery I was energetic and carrying a purse, even going out for dinner dates, ready to take on the world. 

Easter Sunday with my man

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.

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.