My Heart Transplant Experienceby Natalia Hello, my name is Natalia; I am 27-years old, and a heart transplant recipient. I live in the United States of America, although I was born and raised (for 6 years) abroad. This personal account of my experience with heart disease and receiving a donated heart as a cure will educate and hopes to inspire you to become an organ donor and/or at the very least volunteer any time you might have to visiting with patients on waiting lists in the many transplant centers around the country. I tried to include as much detail as possible, including medical terminology for those of you who are familiar, as well as my personal touch of humor because it was only with humor that I made it through. I hope you enjoy the story. On November 21, 2002, while leaving work in Arlington, VA at exactly 7:25PM, I suffered a right CVA (cerebrovascular aneurysm) that paralyzed the left side of my body excluding my face. I was still able to talk and swallow and my eyesight was not affected. I recall seeing no one in the parking lot outside, although it was also very dark. I did not know exactly what had occurred at the time either; I just knew that my arm and leg stopped responding and I could not rise from the place on the ground where I had fallen next to my car door. I was pissed off because I had an appointment at 8pm I had to keep. I tried to get my cell phone from my purse, but failed. As I lay there, it began to drizzle and I became very hot and began sweating; I prayed for help. Then, as if a miracle, someone showed up. Car lights shown in the distance and I heard a voice ask, "Are you okay?" I begged whomever it was to dial 911 for me. A few minutes later, an ambulance arrived and I was taken to the Arlington Hospital a.k.a. Virginia Hospital Center (VHC). I know that a neurologist saw me in the E.R. and I was given a medicine called TPA to contain the bleeding in my brain. This really made a difference later since it minimized the damage to my brain. The paralysis I experienced gradually went away during the two weeks I spent on the stroke unit. The doctors treating me said that since I was so young, they expected a full recovery. They were right. Soon I was transferred to a nursing home/rehabilitation center where for one week I learned to walk without a cane again and sharpened the use of my left hand and fingers. Then, they sent me home. My fiancé, Craig, picked me up and was my life support throughout the next month. "So why did a 27-year old have a stroke?" I wondered. Cardiologist A. Parente at the VHC conducted tests on my heart and found clots. One had traveled to the brain and caused the stroke. I was put on anti-coagulant drugs (Heparin per IV and then Coummadin by mouth) upon discharge. I was also informed that my heart's pumping ability was very poor. Parente figured this out by performing an Echocardiogram, which is an ultrasound radiograph of the heart muscle. Normally, the human heart "ejects" 50% of the blood it receives from the veins and retains the rest for itself (this measurement is subjective and is called an Ejection Fraction or EF); my heart had been ejecting only 15% for some time although he could not say for just how long. Dr. Parente and his team speculated I had contracted some type of virus that attacked my heart and caused disease. My official diagnosis was Dilated Cardiomyopathy (DCM)/Congestive Heart Failure (CHF) or "viral myocarditis" for a shorter version. The more I thought about my health during the past years, the more I recalled experiencing a gradual loss in energy, appetite, thirst, swelling in my legs and fingers, and shortness of breath. I had not gone to the gym in several months because I was so tired. When I experienced pain in my chest and abdominal areas in late October, my primary doctor told me I was stressed out and prescribed anti-anxiety medication. I believed him; after all, I was working long hours because I had just been promoted and wanted to learn as much as possible to make a good impression. The pieces began fitting together and slowly I came face to face with the fact that I was now a young woman with a very serious heart condition. Doctors said there was a 50/50% chance that the condition would "resolve itself," but as you will see, this did not happen. In part because of the poor after-discharge care received. As an outpatient taking oral medications, I was put on a low to no salt diet and instructed to walk outside daily. Both requirements were difficult to do, especially the last one since I began retaining fluid in my abdomen in January. In addition, I began having extreme difficulty breathing even while sitting up or laying down. I could only sleep on my right side to breathe well and keep the pain in my right upper back down to a dull ache. I attempted in vain to contact the cardiologists assigned to me; they agreed to see me but did not seem too concerned about my symptoms. On the contrary, they said the pain and other issues were "normal." My boyfriend and I visited the E.R. several times anyway because I got scared from sudden fluid build-up. In addition, one time I caught bronchitis and my breathing really got bad. The E.R. doctor thought I might have a clot in my lung (pulmonary embolism), but thank God he was wrong. A month later, I was scheduled for a second Echocardiogram to measure my heart's EF again. It was still at 15% and my heart had grown even larger within my chest cavity. My ankles, feet, and middle section had become very fat and swollen. I could not fit into anything other than overall jeans. I joked to my family how it looked like I was five to six months pregnant. Despite my sense of humor, I rarely felt good. Breathing, eating and drinking took a lot of work and concentration. At night, I would often stay awake trying to fight off constant nausea. Every night I prayed for God to take me because the pain felt like it would never go away or get better. Soon my mother began staying overnight with me because she feared for my life. When consulted, Parente and his team suggested fitting me for a defibrillator ("ICD," a device equipped to send an electrical shock to the heart if it stops suddenly). I did not know if I would even survive long enough for the evaluation they had scheduled in 8 days. I contacted my father for help. On Feb 2, he drove us to his arrhythmia specialist, Dr. Plattia, at the Washington Hospital Center (WHC) in D.C. Dr. Plattia was very kind. He asked what I was feeling. My appearance spoke for itself: I was pale, swollen in the face, legs, feet, and middle section, spoke in a hoarse whisper, had to catch my breath every other sentence, and could barely walk down the hall when asked to. After reading "before walk" and "after walk" EKGs, he told me that I was in no condition to go back home. He strongly urged me to consider admission to the hospital: "How do you feel about that?" he asked. I sighed in relief and thought FINALLY a doctor agrees that I am sick "enough" to be admitted! "Of course I will stay and thank you for offering," I responded. I told him that "home" by then represented death and struggle and there was no way that I would want to go back. A nurse practitioner from the Cardiology and Transplant Department, Cynthia Bither, admitted me to the Critical Cardiac Unit (CCU) and told me that my new cardiologist, Dr. Richard Cooke, would be by to see me within the hour. Meanwhile, blood was drawn and urine collected to begin evaluating my overall health. Another Echocardiogram later that evening (my third) showed a decrease in my EF from 15% to 10%. Later, Cynthia told me in confidence that "it was a miracle" how firstly, my father had gotten an appointment with Dr. Plattia since he usually books months in advance, and secondly, how I had survived so long at home. She and Dr. Cooke had reviewed my lab results already and determined that my heart would only have lasted approximately five more days if I had continued with the medications I took at home. They classified me as a Class Four, End Stage patient with CHF. In other words, I was at the worst possible place someone with CHF could be. (There are four classes based on physical functioning and four stages based on the progression of the disease.) Their plan was to pump me up with IV drugs to get the fluid off me and then figure out which medicine could be used to help my heart pump more effectively. I almost hugged her that morning I was so grateful to still be alive. The second day I met with Dr. Cooke again as I would daily until discharge. I learned that he was the Director of Cardiology and an Englishman with more than forty years of experience in cardiovascular disease and thoracic surgery. To me, he has become someone I have come to owe my life and trust very much. I was grateful for his brutal honesty when he sat down by my bed and explained how my heart was not working as it should. Much of what he told me I already knew from Dr. Parente, except that the virus that had attacked my heart could have been in my body up to several years ago. I told him that I had gotten my tonsils removed last year due to repeated infections and he said that one of those infections could have traveled to my heart then. The immediate concern for me however, was that my heart was currently drowning in blood and had grown (dilated) in size considerably since January. Both ventricles were dilated and weak, a condition called "bi-ventricular failure", causing my resting heart rate to go very fast (105-125) and my blood pressure to drop down to an average of 90/50. These numbers indicated that the heart was trying to pump blood out of its lower chambers, but since the muscle fibers were so worn out, it failed miserably. Dr. Cooke did not hesitate when he said that I could not breathe because there was fluid in my lungs, that I could not eat because there was fluid in my liver, that I could not walk well because there was fluid in my legs and ankles and feet, that I could barely talk because I could barely breathe, and that I was barely alive because my heart was nearly dead. I laid back and continued to listen as he told me that a nurse would be in shortly to insert a PICC IV line (I do not recall what the acronym stands for) in my right arm. This line would travel straight up my arm and into my neck vein to give my heart two kinds of medicine. One was Lasix, a strong diuretic expected to get rid of all the extra fluid in my body. The other was Milrinone, a beta-blocker to help the ventricles do their job better. Due to my stroke experience, they also gave me Heparin, an anticoagulant, to prevent any more clots from forming. I had been taking Lasix in pill form at home, but my dose was too low and according to Dr. Cooke, my liver had expanded to the size of a football and could not metabolize any of the oral medications I was prescribed as an outpatient. Diuretics are standard medications for congestive heart failure because when the other major organs receive little blood, they shut down. Thus, the body, and kidneys in particular go into "survival" mode and retain whatever blood they receive from the heart. They do not let go of their urine either, that is, if they ever produce it. As a result a fluid buildup occurs in the body, literally expanding the legs, feet, ankles, and abdomen. Lasix helps the kidneys out by telling it to keep making urine, constantly. Through the IV, it began working for me within the next 12 hours. The first night I lost 5 pounds in urine alone. The urge to pee was very strong and sudden, and gradually I learned that staying in close proximity to the bathroom after a dose was helpful. A white plastic container was placed in my toilet to measure my "output" and I was expected to report how much I urinated and how much I drank to the nurses daily. Gradually, I began to feel like a person again. The third morning I ate without nausea or vomiting, and breathing became easier. I was also put on a low salt diet like before and restricted to drink one and a half liters of water or other fluids a day to prevent further fluid retention. The Doctor's work impressed me so that I opened up to him and discussed my disappointment in the care I received from the doctors at VHC. I had felt neglected and left to my own defenses under their care. Dr. Cooke admitted how not all cardiologists are specialized in CHF, and it is unfortunate when it is the patients who have to pay the price. He said that in my case, they should have focused more on getting me comfortable by removing fluid through IV Lasix so that I could eat and metabolize my heart medications. Because of my symptoms and extremely poor diet, I was now malnourished and had almost depleted my body of proteins. My skin looked scaly and peeled away when I rubbed it. He ordered me to eat as much protein as possible during my stay. The last 4 days at WHC were pleasant. I began walking again and explored the hallways daily for at least 30 minutes. Dr. Cooke was pleased, but he said that much more treatment was necessary to cure me. It was then that he brought up the idea of a heart transplant. My family and I were terrified at the idea; all we knew about transplant surgery was how risky it was and that people usually did not live long. I regretfully admit that we all failed to keep up with science. If we had, we would have known that in the early 80s new anti-rejection drugs (i.e., Cyclosporine) were developed. When paired with strong steroids like Prednisone, they effectively suppress the immune system and protect the transplanted organ from T-cell attack. We also discussed the issue of surgery cost and payment. My health insurance policy at work luckily had continued when I left the company thanks to a great innovation of the US Government, COBRA. (Do not ask me what it stands for because that means I would have to get up.) (However, am I the only one who finds the name rather sinister: a snake becoming my financial savior?) When I was employed, the company I worked for paid more than half the premium, but with COBRA, I became responsible 100%. Yet, the payments would allow me to retain full benefits (with the group policy) for 29 months since I was now officially "disabled." Side note: I applied for SSDI and SSI/Medicaid in the hospital and as of this writing (Summer 2003); I am still waiting for my first check. The only catch about my health insurance, United Healthcare, was that it had contracts with specific transplant centers around the country, and WHC was not one of them. We learned from Dr. Cooke that I could choose from six centers and that all travel and lodging costs for me and a companion of my choice were covered under my existing policy. My family left the decision up to me. My choices consisted of Penn State, Duke University, Jewish Hospital in Kentucky, Florida State University, or the most renowned and successful transplant center, Cleveland Hospital in Ohio. I had to choose if I wanted to live. Let us see, PA was excessively cold, and if Dr. Cooke said I might be waiting two years for a heart, forget it. Florida was too pretty to be sick and dying in addition to being too far away. Cleveland had too much snow - forget it, and Kentucky? You must be crazy man! Duke it was. I always wanted to see North Carolina - in fact, the day I had the stroke in November was the day before Craig and I were supposed to leave on a weeklong vacation to NC. Well, I thought, now I could go for "free!" On day 7 of my stay at WHC, I was scheduled to leave. Three young Emergency Medical Technicians, who arrived 4 hours late and right in the middle of the "Price is Right" loaded me onto a stretcher and secured me tightly under the windows of a Lear Jet. Fifty minutes, a vomiting session, and three sips of strawberry Gatorade later, we landed. I had not been outside in forever (one week). The wind felt great. They rushed me into an ambulance as my medicines hung from bags attached to the stretcher. The next 20 minutes on the road seemed endless; all I wanted was to fall asleep in a new hospital bed. Room 7324 would become my little apartment for the following 2 months. My mother decorated it as I watched her from the bed one day with all my essentials: colorful scarves, flower bouquets, plants, and the two balloons my dad gave me (one was a HUGE BUTTERFLY that we had to throw away after the operation because of the dust). I came to love that room. It was like a new home – for my new life as a patient with DCM/CHF. I often wondered if calling it life was even appropriate, perhaps "brush with death" was more suitable. I had everything I needed really: TV, VCR and later an answering machine from my dad. A nice pink imitation marble colored sink; a shower I was not allowed to use; a $7,000 bed I could play around with to my ailing heart's content; a picturesque frame on the right wall; a heavy door that slammed loudly in case I was pissed off – WITH BLINDS AND A WINDOW mind you; a corner window with a sill filled with the plants and cards I received every so often; and sunshine when it did not rain (every other week in Durham); a box of Cheerios, Rice Krispies, and two bags of DORITOS at my bedside; plus two different Nutri - Grain bars for the days they decided to starve me by not bringing me exactly what I ordered (my mother also brought several cans of ENSURE that I was not as excited about); a mobile table that changed height and had a drawer I filled up with mayonnaise, ketchup and Dijon Mustard sachets; and of course, "Mopsey" and "Bear," my stuffed Pug and Polar babies who had followed me since the VHC. The first thing I noticed different about my care at DUKE was the food I was given. The fluid restriction and low sodium diet withstanding, I was brought REAL butter, chocolate brownies, fat laden gravies and sauces, beef, 2% milk, and potato style dinner rolls. I wondered about this but did not complain. The transplant cardiologist who saw me first, Dr. Russell, came by the next morning with a "team" of several students (1st, 2nd, AND 3rd year, in addition to a fellow, and 4th year intern). ALL took turns listening to my heart and lungs. I felt a bit innerved to have the younger students examine me. Here I was, late 20s, dying, my life possessions sold and given away, homeless, unemployed; I felt like a failure. I had even thought about giving my CDs away to my best friend. I no longer cared much about anything but being able to breathe and drink a nice cold bottle of Evian – god I was SO thirsty from the Lasix. My lips were constantly cracked and my tongue was raw. Dr. Russell welcomed me to DUKE and informed me that I was here for a transplant evaluation. This would consist of a myriad of tests over the next week to ten days. There would also be a social worker visiting me, possibly volunteers from the DUKE Heart Center, a financial advisor, psychiatrists and psychologists, and physical therapists. "Was I ready to get busy?" I nodded: "Sure," what did I have to lose? I was already dead as far as I could tell. The first month at DUKE consisted of "work up and evaluation." Dr. Russell and the "team" ran about a dozen different tests on my heart and other major organs to determine if my body was physically a candidate for a donated heart. During this time, the central intravenous PICC line in my right inner arm that was put in at the WHC was infected with a clot. Dr. Russell had tried unsuccessfully to stick a tiny catheter down my right neck vein so that he might conduct a Left Heart Catherterization and read the pressures in my heart. The tube never made it, but pain shot down my neck like a knife; when the tears came, he went on pushing – I hated him for doing that! I was too sensitive – Dr. Russell is really a great doctor. I watched my right arm start turning purple and swelling in the forearm as they wheeled me down to ultrasound to locate the problem. Pictures showed that a clot was indeed in the vein where the tube had tried to go through. Treatment consisted of removing the PICC line and getting the same IV Heparin drip through a new "peripheral" IV line on my other forearm. Anyway, a few days passed and my arm healed. I also lost ten more pounds in fluid, regained a hearty appetite that fed my now visible bones, and ignored the phone and any other sounds from the world by staying in bed moaning and listening to my hoarse breaths. I was already tired of the needles and the nurses, the IV monitors beeping incessantly, my heart monitor leads losing their signal, and the constant knocks at the door. There was no getting sleep in the hospital. The transplant coordinator assigned to me was Laura Blue, a nurse practitioner who at first scared me with her compelling voice and determined attitude. She gave me a packet with information on transplant operations, recovery, the UNOS organization (this is a national database that keeps track of organ donors and recipients, statistics, and of course the infamous 'lists') booklet, and several other handouts. I read as much as I could, half expecting her somehow to evaluate my knowledge, but she never did. On Thursday, Laura questioned my family about the kind of support they could offer me down here. She added how "the team" needed them here to help me emotionally, although "our medical psychologists will assess and help her too." She said that they all understood how long the drive was, but "your daughter needs a new heart and we need to list her soon." She asked my family to draw out a plan to keep me in NC for at least three months after transplant for the required biopsies and for daily monitoring of my vital signs and/or signs of infection. Everything sounded scary to me. Moreover, I did not like how my family was being pressured. I felt that I was to blame for all of this drama and I did not enjoy the feeling one bit. My family agreed to meet Monday again in my room. "What a mess," I thought. Man, was I such a reject that now my family, who had not been functional for over ten years was forced to somehow mesh for my sake? Gee whiz, for me – the brat, the little sister, the one that ran away to NYC to pursue a master's degree in criminal science -- ugh! The stress was horrible during this time because we all knew that I was dying. I felt neglected by the medical profession and frustrated by all the politics involved. I did not grasp at that time what the "team" was so worried about when they insisted we stay in NC 2-3 months after the surgery and get someone to stay with me 24 hours a day to monitor my health. Later, I learned that I might experience signs of organ rejection, infection, or get sick from medication side effects and it was important that I have supports around to comfort me and respond to an emergency if necessary. That made sense, but no one in my family could MOVE here; they had to work - no one, except my father, who had recently retired. Fortunately, he volunteered to make it all work and took it upon himself to draw out a plan, day by day, that listed who would be with me and when and for how long. Ellen, the social worker, said she could help find an apartment close by to rent for those months. Soon, everything began falling into place. Until the psychologist, Jennifer, came to see me. I have to admit that by then my overall mood was negative. I was very, very tired physically, and mentally, I did not want – could not -- think of anything else but how much I wanted to just roll over in bed and pass out – for a long time. My life was over as far I could tell. With that said, Jennifer's questioning really pissed me off. The whole "team" seemed overly preoccupied with my past, with how my parents had raised me, how much they cared about me, and how vulnerable and sensitive I was in their mind relative to other people. I felt patronized and wrongly judged as incompetent to take care of myself. Since I have always insisted on my independence, this was hard to swallow. I thanked Jennifer for coming by, but refused further visits. Well, "the team" did not like this one bit. They told me my anxiety level was a concern and they were not sure if I was "mentally prepared" for the surgery. Grrrrrrr! I was informed that IF I agreed to therapy twice a week for my mental health and participated in a treatment plan, then I might convince "the team" that I was stable and able to handle this type of experience. My dad told me over the phone to cool it. He urged me to do what was asked unless I chose to die because "believe it or not," transplant centers can legally refuse to list patients if they do not find them suitable for a donated organ. The reasoning is because they can give the organ (which is hard to come by) to some other patient who is ready both mentally and physically and will not put it to waste. I cried at the thought that they could just let me die. My dad said, "If they refuse to list you, I'll take you to Cleveland for another evaluation." More pain and needles? "That was definitely the last resort," I said. The next morning I called Laura and told her, I agreed to therapy. I then proceeded to write out my own treatment plan and later reviewed it with Jennifer and then Ellen, who said it was "acceptable." Jennifer added that my new therapist, Alex, would be by to see me on Tuesday. Here is an email I sent to my closest friend around this time (early to mid March). By then, I was FINALLY listed and was in "transplant limbo" - Waiting for my heart. Meanwhile, the doctors had rotated, with Russell going back to his research and Dr. Felker taking over the daily rounds. Over the next weeks, he and his fellows found the right doses of diuretics, antibiotics, and heart medicines that kept me stable until the operation:
My anxiety was on the rise as the weather got warmer and nicer. I love the Springtime because of all the flowers in bloom, with their bright colors and attractive aromas, they make me want to go out running in a sunflower field wearing a yellow and white flowing sundress, straw hat, and long blonde braids over my shoulders. I was born in the springtime, May 13 to be exact. I had a feeling that my heart transplant might happen that day. While my birthday was still two months into the future, I was in no rush to neither get older nor get the new heart. Honestly, I was terrified of the surgery. The thought of being cut open, and then kept alive by a machine (heart and lung machine) was scary. What if I had another stroke, or worse, died? Um. You are going to die anyway if you do not go through with it. Even on my deathbed, I continued to be my own best critic. I also felt entitled to criticize my cardiologist when over the course of a week I began gaining a pound per day. While he thought it was great (I weighed about 102 lbs), I did not. Absolutely did I not. That weight was fluid I told him, and to prove it, my breathing had become labored. When I was lying down, it was worse. He thought I was overly anxious and should try to relax. I insisted on getting more Lasix because I was sure that fluid retention was to blame for my troubles. Perhaps I was paranoid, but when Dr. Felker hesitated, I was positive it was because he thought I wanted to abuse the medicine as an anorectic/bulimic would to lose weight. My problems with food and self-image were no secret to the "team" by that point. Why else would they have a therapist, clinical psychologist, social worker, and a psychiatrist all working with me? I will admit that the evil twin inside actually did crave Lasix for this purpose. However, the "recovered" me insisted the doctor take a closer look at my chest. They drew blood and found out that my oxygen levels were indeed low. This confirmed my trouble breathing and won me orders to take another diuretic over the weekend. My evil twin smirked in triumph. Not for long though. The Monday thereafter, an x-ray showed that fluid was still trapped in my chest cavity, just below my right lung. Dr. Felker guessed the fluid had been accumulating over time and now had increased so much in volume that it pressed against the lung, essentially preventing my lung from expanding to full capacity. He ordered a "tap" for the following day. What? My evil twin was not expecting to be poked! Drs. Seiler and Waters performed the procedure while I watched my Mexican soap opera. Except for the pain from the local anesthetic (Lodicain), I felt nothing as Dr. Seiler stuck me with a tiny needle in between two ribs on my backside. The catheter went in about ½ inch. I amused myself while she sucked out more than three liters of urine-like fluid from my back. It looked like light beer, especially when it bubbled near the top. After the procedure, I had some difficulty breathing deeply, so I followed Dr. Water's advice and breathed shallow for an hour. You could say that I had a lot of time to think in my room while I waited for the phone call that would save my life. My thinking time balanced with talking time, in specific, with my therapist who continued to visit me twice a week. He counseled me on the application of positive thinking versus negative thinking, that is, to try to follow a negative thought by a positive one. For me, a pessimist, who was also very cynical and moody lately, this task proved to be difficult. Like when I confessed hating it when people in the hallways, patients and/or visitors, would stare at me and not say a word when I passed them during my walks around the unit. Now, I knew I was quite thin by then at 100lbs, and that my butt was non-existent, so I assumed that they all stared because of how gross I looked. To that, Alex countered: "what if they are looking at you because you are out walking the halls with a heavy IV pole all by your self. Don't you think they admire your determination?" Perhaps they did, Alex, I thought, but I still felt ugly, and in my 27 years had never been satisfied with my weight, whatever the number was -- 50 or 120lbs! My next assignment after that session was to practice separating my feelings from thoughts. That was easy. Most of the time, I felt angry and thought God was punishing me for being so reckless with my health. Sometimes I felt sad, and thought that if I died right then, no one would care. I imagined a lone funeral and dead lilies adorning my casket. It was raining with thunder and lightening. Oh, the humility! Still, at other times I felt scared and thought about my heart stopping without warning and my mind going blank and dark. "What would eternity be like?" Alex said he did not have a clue. Pppft! Fine help that was. When I felt brave, I actually wished the Vampire Lestat would visit me and turn me into one of his fledglings. My daydreaming was usually followed by apathy; moments when feeling and thinking were too much of a chore for me to handle. I spent these moments aimlessly parading the hallways of the unit, flipping the channels on the TV, or staring at the nature channel. The minutes dragged by as I waited, and waited, and waited. Until one day, Dr. Felker signed an order allowing me to leave the unit and walk the hospital grounds with a companion of my choice. I was delighted because my mother was visiting that weekend. We walked slowly since there were two big IV dosage boxes attached to my IV Pole. I needed someone to push the pole while I walked. Once, during a physical therapy session, I questioned the therapist about this because he had told us that exerting the upper body was not good for heart failure patients because it made the heart work harder. Then again, we were not allowed to use the treadmill in the therapy room either because the doctor was feared cardiac arrest. "Aha!" I rebutted, "How then can I be expected to push my IV pole and walk all at the same time?" I never really got an answer except that switching arms every so often was "important" for my muscular symmetry. I took advantage of every visitor to leave my room. Otherwise, I tried my best to push and walk on my own. Meanwhile, my best friend Zoran and his partner Eric came down from DC to see me the last weekend in March. I insisted we dine on sushi in the cafeteria downstairs. After transplant, I knew raw fish would be forbidden food, so I made every bite count. We sat in the sun for an hour afterwards and Zoran and I caught up on three months of news. Prolonged unprotected exposure to sunlight would also be forbidden after transplant. In fact, my life would really be different when I had my new heart. I would have to take drugs to stop my immune system from attacking the new heart. Unfortunately, with this weakening of my immune system, I would be less able to fight off infections. Frequent hand washing is encouraged, not the usual "after the bathroom routine" anymore, but after shaking hands with anyone, and every time your hands touched a new surface. In addition, I would be expected to wear a mask when outside for the first 6 weeks, and then also every time someone sneezed around me, around construction sites, flower gardens, pollinated areas, and anywhere the wind blew too hard. There were three pills with this side effect: Cyclosporine, Cellcept, and Prednisone. Other uncomfortable side effects to look forward to included: abnormal hair growth in areas other than the head; bloating or rounding out of the face, neck and back; acne; developing coronary artery disease and diabetes; skin or other types of cancer (the skin becomes very thin and frail); mood swings; restlessness; insomnia; fluid retention; not to mention your more common nausea, fatigue, vomiting, dizziness, and lightheadedness. Sunday came and with it, a phone call from my mother to tell me that it was snowing in VA, again. I told her it was raining and cold in NC. I felt very cozy in my room, especially after walking around the unit and finding most rooms empty. Apparently, many patients had improved and discharged. I watched "The Breakfast Club" on TV for the nth time and then made a valiant effort to go out and walk a few more laps. My sinuses were acting up again—I had to stop because my ears clogged up half way down the hall. I hated it when that happened. I decided to go downstairs to get some salad. I told my new nurse that I had permission to go alone (not exactly). She checked my chart and decided to accompany me for safety reasons. Fortunately for me, since I was looking forward to being alone in society for a few minutes, at the end of the hall we ran into Dr. Felker, who told the Nurse that I was stable enough to walk alone. YES! "Mmm, beet salad, chopped eggs, green peppers, bacon bits…" I loved how they let me eat anything except salt – as Dr. Russell put it: "If we are going to give you a new heart, what do we care about your old one, we are just going to throw it away." So there I am pouring oil on my hearty salad when the Nurse comes and rudely grabs my precious paper plate from my hands! "STOP! NO FOOD, NO WATER! Your heart is here! You have to come upstairs NOW," she gasped. Oh, no! My ailing heart skipped five beats or so it felt! I pushed my pole as hard as I could and rushed back to the elevators…. Not so fast Natalia, I thought quietly, you'll be dead before the operation! 1:30PM, a transplant surgeon in my room told me to "please lie down" and give him 18 tubes of my blood. I insisted he use the "Hickman" line since my veins are all shot. 1:50PM, I called my Dad and told him to get in the car and start driving! 1:59PM, the nurse ordered me to strip my gown and wash my entire body with surgical Hibliscens sponges, Wow, "you mean like an actual shower?" I had not had one of those in 2 months! After fifteen minutes, exhausted from the effort, I was ready to lie down again, but my bed was crowded with bags of my stuff and therefore "contaminated." Crushed, I collapsed into a chair by the window and waited until the surgeon called back from wherever he was inspecting my new heart. I went over the donor matching criteria in my head again to pass time: B+ blood, small body, no drug dealers or addicts, pimps, prostitutes, or criminal hearts could do. Personally, I wanted a young one like from a high school athlete, but I was grateful one was coming at all on this, my 17th day of waiting! I peered at my chest. This was the last time the skin there would look smooth; I tried to imagine what a scar would look like. 2:30pm, I grabbed a tissue and the remote and watched Sponge Bob and that cool crab guy show. I then decided to call Craig. We both freaked out on the phone, "Dude, relax! You are not the one about to be cut open here." We agreed on Friday as a good day for him to come see me and then hung up so the doctor could call. 3:00pm, sure enough, surgeon "Jonathan" called: "I am happy to tell you that you have a new heart on its way, and someone from the OR should be up to get you in 20 minutes or so." When I asked where the heart was coming from, he said UNOS policy forbade me from being told who my donor was, to protect the donor's family's privacy. I thanked him anyway and proceeded to freak out in earnest. I beeped for the Nurse to come and sit with me, but Dr. Wesley, the anesthesiologist, beat her to it. In a strong Manchester accent, he introduced himself and his team as they wheeled me over to the "put you to sleep room." After a few more sticks, including one in my wrist's artery (ouch!), and an explanation about pre- and post-op fluid intake and output, the lights went out. More than a day later, I woke up and saw my Dad, Mom, Craig's mom, Dan, my brother, and Patti, his wife, at the foot of my bed. I recognized the glass door as belonging to the ICU rooms. Then, as I asked, "What day is it? What time is it? Who are you?" a male nurse on my right responded: "Ed." The entire surgical team was standing behind my bed. In a daze I responded, "Who? Dr. Felker? I love you Doctor! Thank you all for saving my life!" I started crying and reached out for a hand from anyone—but quickly brought it back to my side as I remembered that now I had to be careful not to touch people or things unless I could immediately wash my hands afterward. This would have been quite a feat at that particular moment given the amount of tubes running in and out of my body. There was a respirator in my mouth helping me breathe, oxygen tubing up my nose as usual, four draining tubes hanging out of my lower chest cavity, bandages up and down my middle chest section, an arterial "line" in my wrist, a Foley catheter in between my legs, and although I failed to notice right then, another IV line through the artery behind my neck (a Spaz Ganz if my memory serves me right). I was still floating from the anesthesia. I repeated loving everyone in the room twice, and then, after accidentally brushing hands with my sister-in-law, nearly freaked out. Soon I was left alone with "Gail," my night nurse. She was very nice, and kept me comfortable. She even gave me a red pillow that is made for open-heart surgery patients in recovery. Apparently, you are supposed to press it against your chest when you want to roll over in bed. It hurt when I used it. So much so that I came to hate the pillow and nearly "forgot it" when I discharged. The following morning at 5am, I realized that I was tolerant to morphine. (Not such a bad thing considering how afraid I was of becoming addicted.) However, the pain in my chest and back was worsening as the anesthesia finally wore off. I told the nurse in desperation that I did not want to move. My bed was weird too. As soon as she plopped pillows under all my sore bones and made me comfortable, the mattress would fill up with air at different pressure points and go through its "therapeutic" cycle. HA! "Therapeutic." The cycle messed up my pillows EVERY time. I hated that bed. Unfortunately, it followed me to the "step down" unit three days later. Typically, transplant patients are in the ICU 2 nights only, but in my case, Dr. Milano, my heroic surgeon, had to open up my chest again the second morning because he feared that blood was accumulating in my chest cavity. He and his surgeons were concerned about the lack of fluid coming out of my chest tubes. It was too early after surgery for them to look dried out. Not surprisingly, they removed a clot (yet another one!) from near my heart and sewed me up again, inserting yet another chest tube. I now had five hanging from my abdomen. My parents were terrified when I was wheeled away for this procedure. They chased behind the surgical team and my bed all the way to the operating room crying out my name. I, my pain and self notwithstanding, was pleased to get a full dose of anesthesia again. When I came to half a day later, I was in the ICU room again and two nurses were with me. I had a respirator tube down my throat again. I got nervous because I remembered gagging when the first one came out. "American Idol Disco Night" was playing on TV so I asked the nurse to wait until after the commercial to take the tube out. At least in that way I would be distracted. My experience in the ICU was somewhat of a blur after that. Many doctors and specialists visited my room beginning at 4am and ending sometimes at 11pm. My parents were allowed to stay with me only from 9am to 7pm. I missed them in the evenings. Alone one night, I watched this evil movie about a psychotic killer who could only exist in total darkness so he hid in a cellar under the city. The music was somewhat neat though so I resisted urges to change channels, besides the fact that I could not reach the button on my side rail. The pain I felt followed me straight into dreamland. I had one dream a couple of nights in a row. I came to look forward to it because in it my body floated up to the ceiling of my room that had turned into a sand embankment where I could stretch out. The sand felt like a massage against my muscles and in the dream, there were no longer any tubes connected to me. In addition, Dr. Wesley, the anesthesiologist, acted like a physical therapist and urged me to stretch my legs and touch my toes. Now and again however, I would leave him in a corner and wander off into an empty, dark club where psychedelic trance music pulsated out of hidden speakers. I held onto a wooden railing that trailed a wall length mirror all around the room. My goal was to walk around once and then go back to Dr. Wesley and his therapy. Another time however, the room opened up to an island shore with rocks lining a wooden housing development. I found myself quite suddenly on a chair chained to a large rock. Craig was with me and only he could free me from the chair. When he did, I was expected to walk down the rocky pathway under a very bright and hot sun and then return. It was very hard, but I felt great walking. When I was close to the chair again, Craig came to urge me along because a sea monster was coming out of the water and I was in danger. I felt safe with him. I missed him. Wednesday I decided that after four days and nights without food perhaps I should try to eat. Barley broth, cherry Jello©, cranberry juice, and a watery cherry Popsicle© was the pick of the morning. By lunchtime, it was apparent to me that this was also the pick of the midday break. During breakfast, I drank so much liquid that when I tried to roll over on my left side, I felt nauseated. I did not expect to vomit since I could not push with my abdominal muscles, so when hot, purple colored liquid poured out of my mouth I was both shocked and disgusted. I watched helplessly as the vomit shot straight out of my mouth, down the sheets, and onto the floor. I felt pain radiate throughout my body like knives in my chest and upper back. My neck began pulsating to the beat of the new heart inside of me. I began crying as I failed to reach the call button on the bed rail. Then, when someone walked by, I yelled out for help. Yet, my voice was so weak I barely heard myself. God? Everything, even my EAR LOBES hurt, I prayed. Then, as if in a dream, a woman in a white coat walked in and said hello. I moaned in response. She expressed genuine concern, grimaced, and said "Oh! What is wrong Natalia?" "Please help me!' I uttered like a stuck pig. "Please!" as tears flowed down my cheeks. She turned out to be a pain specialist called on by my surgical team after the nurses reported that morphine was useless on me. She pressed the call light and I yelled, "I threw up!" The woman in white told me that she and her team were going to try giving me Tylenol#3 since I had taken it up on the seventh floor successfully. I nodded in agreement, as Sumer, the day nurse, came running in. She took one look at the mess and told me not to move. She ran out for help and came back with a nursing assistant to "clean me up." The pain specialist wrote in my chart before waving goodbye while I proceeded to enjoy a sponge bath in bed with lavender body wash. I muttered weak thanks in her direction as she left. I apologized to Sumer for my appearance; giggling in embarrassment at the thought of the flimsy hair growing on my body that I had been too frail to shave the past several weeks. In reality, merely brushing my teeth lately while sick had become a ceremony and a half: I had to push a chair up to the sink and sit the whole time if I wanted to brush, floss, and rinse completely. After the bath, my parents came to visit. By noon, following two straight hours of listening to the drowning sounds of other patients and nurses running around the unit, I focused my eyesight away from the doorway and ran into my mother's face. Suddenly, I realized that my "high" was gone. My head was clear. Amazing what drugs will do to your brain. I smiled at my mother and said, "I'm back." She laughed and elbowed my father to look up from his laptop. I told them I did not feel too much pain right then and wanted to wait a little while before asking for another dose of medication, even though four hours had passed and I was due. Honestly, I was not interested in constipating myself any further. With my newly returned mental clarity, I also began to feel hotter than usual, as if I were sticking my head inside an oven. My new heart also was beating ridiculously fast with the artery in my neck pulsating at what seemed over 100 beats per minute. The monitors behind my bed read otherwise however. My pulse was around 80, my blood pressure was normal, and my temperature was exactly 98.6ºF. Jeez, maybe I was still high. Somehow, while my parents went downstairs to eat lunch and I daydreamed of popsicles and ice chips, three hours passed by. Sumer suggested when she came in to check on me that I think about sitting up. I wondered how we would do that since getting out of bed looked impossible to me. She said they could raise the head of the bed completely and turn it into a chair. With my consent and once my parents were back with me, she straightened my body in bed and pushed the button that lifts the head side up. She did not let go until my legs were dangling over the floor. No wonder the bed cost 12,000 bucks! My mom told me I looked like a queen in her throne. "I wish I felt like a queen!" I replied, and then asked Sumer for more pain medication. She chastised me for waiting so long and ran out to get Tylenol. My dad could not believe I had skipped a dose. He reminded me of the two major surgeries my body had just been through and strongly urged me to me to take the medicine as prescribed even if it made me feel spaced-out. How could I "just say no" to my own father? The heat was really getting to me so much so that I insisted that the air-conditioning men come check the thermostat out. Something had to be wrong with it because while I was burning up, my body temperature still registered exactly 98.6ºF on the monitor overhead. Laura Blue came by and told me that sometimes the high doses of steroids post-op can make you feel overheated. She suggested getting a new, clean fan. My dad volunteered to do this. Unfortunately, he got lost trying to find the only mall in central Durham. A full five hours later as my mother was fixing to leave for the night, he appeared in the room, sweaty and obviously exhausted, holding a boxed fan. I squealed in delight and insisted he hook it up before leaving. (The a/c men did come finally and found out that my vent had been left open to the 85º weather outside!) Sometime the next day, I told my mother about the strange dreams I was experiencing. In addition to the sand dream, there was one in particular where I felt like I was seizing. All of a sudden, day or night, I would get sleepy and my body would feel heavy as if someone had just laid a log over me. Then, loud electronic music would start pounding in my ears, and every color you could imagine crossed my eyes in psychedelic patterns. It was like an acid trip only at a million per hour. At some point in the dream, I became certain that a power strip was touching the wires hooked up to my heart. I felt that someone had put it there to plug in all the IV monitors and had left it lying on the bed by accident. If that was true, I thought, then the most logical explanation for what I felt was that I was being electrocuted and my brain was seizing. Terrified, I tried to yell out for help, but failed. I could not even open an eye, and moving my arm away from the power strip took all of the energy in my other arm. Then, as suddenly as it had come on, the dream stopped and all became quiet inside my head and in the room. I was breathing quickly and felt my heart beating fast, but I felt relieved since I was neither dead nor injured. The dream seemed so real to me that I was too scared to tell the day nurse about it, especially when she actually appeared in it once while I was trying to cry out for help. She just stood there leaning against the bed's left railing, looking out the door, as I struggled to say that my brain felt like it was on fire. Later that day I asked the same nurse if I had suffered a seizure and she said that if I had, she and the doctors would still be in my room, but we were alone. I told her what I had seen and pleaded with her to remove the batteries from my bed because I feared they would surely end up killing me. Amused, she explained that the drugs might be making me paranoid and suggested I try to relax. Relax? Great, I thought, now I've done it. Now I was officially crazy. When I was finally allowed to leave the ICU, my first visitor on the CCU just down the hall was my old physical therapist Kurt. Appearing in the doorway with an odd-looking walker he informed me that the time had come for me to get up and walk; tubes, IVs and all (the foley catheter was taken out in the ICU right before I left). I felt drugged and went along for the ride. It was not everyday someone offered to walk me. I would be expected to make 18 laps around the unit if I wanted to go home. That was easy for me though, I had been walking everyday before the surgery! That day however, I barely walked one. It was going to be a long way home. It was good to be back on a normal floor, away from the emergency mode in the ICU. My first night was unpleasant however. I could not find a comfortable position to sleep in. I realized that about six pillows were on my bed, acting almost like a second mattress. The drugs and lack of food since surgery had made me so weak I could barely roll over. Moreover, when I finally did, the tubes jabbed me somewhere or an IV line pulled at my skin. I was so tired of being tired. I was also fed up with the voices I could hear outside my door. It sounded like a girl and guy from Jersey were talking all night. She sounded ghetto, and he sounded even worse. I wanted to scream! I had already taken my pain medication and was not allowed anymore. Either way, I felt so full. Just taking all the pills was a meal in itself. I was convinced that the chest tubes were pressing against my stomach or something like that because I felt full with barely a sip or spoonful of sherbet. Dr. Milano expected me to be eating like a horse by now. In reality, I was extremely constipated and needed to go to the bathroom. The nurses gave me laxative medicine at every meal, but nothing happened. Finally, as I was about to ask for an enema (the horror!), my bowels exploded one afternoon. Thankfully, I made it to the toilet on time. It was one of the most memorable moments of my life. The nurse on duty that night was very terse when I asked for help finding a comfortable position in bed. She got frustrated with me after two tries and told me I had better find a position I liked or I would be in pain most of the night. I took her hint and thanked her for "helping." My neck was so hot from the Spaz Ganz line. It was the last arterial line left on my body and God only knew when it was coming out. No one ever knew, just as no one ever knew when the tubes would come out. At least they were manageable because I could gather them in my hand and hold on for dear life, but the neck line was straight torture. I cried myself to sleep that night, and found comfort in the thought that I would be going home for good soon. I promised myself I would walk four laps in the morning when my father came to see me. As long as the drugs stayed in my system, I trudged along at a turtle pace. Not bad for just having your chest sawed open, huh. I welcomed my dad's arm around my shoulders, but honestly, his strength made me so much more aware of how scrawny I was. My bones protruded, as did my veins (for once!). My skin was pale and thin, but my lips were red and my cheeks flush. I looked like a vampire who had just fed. When they finally weighed me, the scale read 90 lbs. It actually HURT to sit in a chair without a pillow. I had not been that thin since puberty. Thoughts of my appearance quickly faded when the pain decided to come back uninvited on my third day on the CCU. Quite suddenly, I felt a knife twisting in circles in the left lower part of my back. I had no idea where the feeling came from, and neither did the physical therapist that saw me that day. I bothered the day nurse so much she begged the pain people to come back and re-evaluate me. I could barely talk when they showed up; I think they got the message. Whatever they tried on me, it worked about six hours later. Oh well, six hours was better than a whole day. By evening, two of my chest tubes came out and I felt a little better. The doctor left three in because he wanted to see if they drained some more over the weekend. When he pulled the tubes, I was told to blow hard from my mouth lest air somehow make its way into my body. It was a little painful, but nothing compared to everything else thus far. I tried to look forward to my fiance's visit in a few hours. My parents went home for the weekend, and now I had about 3 hours to myself! I was so excited to see him finally. I decided to wash my hair at the sink. While I was rinsing the shampoo out, my neck artery started pulsating again. I caught a glimpse of the area in the mirror and was unpleasantly reminded that the Spaz Ganz line was still there. Strangely, it looked like it had moved towards the front of my neck. I recalled it being more in the back two days earlier. I wondered what had happened. In addition to the pulsating feeling, the skin around it felt hot, almost feverish, but I knew by now that this was all just a feeling and not reality. The nurse had checked my temperature earlier. I examined the line closer and I swear it looked just like a tiny snake moving under the skin, thick and fat. I put my fingertips to it and then pressed a cold wet towel against the part that was pulsating. I stayed in this position until Craig showed up. Prednisone distracted me for a while that night. Suddenly, after Craig helped me get back in bed and I was lying down comfortably, I got the strangest urge to chew on something. I was gritting my teeth desperately. We decided I bite the end of a toothbrush. I must have fallen asleep next because the following morning Craig was not there. I supposed he had gone to the apartment my family was renting until I moved back to VA in August. He came back by lunchtime to walk me around the unit, tubes, and all. They were really getting heavy. Craig was so patient with me. My mind was racing, especially after I took my Prednisone tablets. I could barely remember anything I was told by the nurse or him, and giggled incessantly. Alternatively, I would suddenly lash out of nowhere and say something mean and nasty. My focus (and mind) was all but gone. Drugs Are Bad. Of this, I was positive. Worst part was this time I was taking them because a doctor told me to. Stranger things have happened. Craig and I met "Tim" that weekend. He was a transplant patient like me, but he had had his operation nine years earlier. He looked awesome, in fact, just like anyone walking down the street. Tim visited my room frequently until discharge and taught me about my medications, giving me pointers on how I could make taking them an easier experience. He said that in time I would be able to put five pills in my mouth and swallow them with a small swig of water. I could not visualize myself doing that when I was swallowing the pills one by one now. Well, maybe the smaller ones, but not the Cyclosporine. That pill smelled like rotting fish and tasted just like what I imagined fish guts would taste like. Despite my whining, Tim pressed on, reassuring me that things would get better. He was in the hospital now due to a respiratory infection. It was the first time in nine years that he was sick, he said. He had tried to go back to work, but contracted some virus from someone there and had to call the doctor. It was the first time he had tried to work again too. What a shame, I thought. He said he did not care really, because his wife worked and he still got disability benefits. Apparently, he told the Social Security people at the time of his review that he could not go back to his job because too many people around him could kill him. Our immune system was as good as dead, he reminded me of as he washed his hands at the sink and bade me good-bye that day. By Monday, the tubes and I had become one. I felt the air blowing up into them and into my body. Only the thought of the girl blowing up into a big blueberry in Willy Wonka's Chocolate Factory kept me from losing it and partially, amused. My legs were stiff and bloated. I spent Sunday night until early Monday morning first on the floor on my knees and then in a chair by the window moaning. I tried to imagine life without the tubes. I tried to recall a free flowing body, bare of wounds and catheter tubes, and heart monitor leads. I asked the night nurse if she could describe this feeling for me, but I think I scared her away because she stopped coming back after 3am. I figured she gave up trying to understand me. I felt like such a brat. I forced myself to be quiet and take the pain until the doctor showed up around 6am. More like 7am. By 8:30am, I was told I would be going to the clinic for my very first heart biopsy. After that, the doctors promised the tubes would come out. Dr. Felker performed the biopsy. I had to wait a bit in a cold room so I lay down on the examination table because the pain from the tubes was unbearable. The nurse told me I looked "fabulous" though, as did the technicians in the procedure room. I smiled at their kindness. Nurses always had a way of making me laugh. Once the tubes came out, I felt like a newborn baby. My energy even improved because a weight had been lifted from my stomach. I felt great, and was so happy to just have a single IV pole to drag around the unit. By Tuesday, I had walked fifteen laps around the unit and bragged to my dad that I would be home by Wednesday. I was right. The doctors discharged me the next day when the results of the biopsy came back negative for rejection. I had been so anxious to hear their decision that I had woken up at 4am and gotten up to walk the unit. I did 18 laps that last morning in the hospital, and took a shower when my Dad showed up. He got all my medications from the hospital pharmacy and the nurse helped us pack whatever was left in the room. I was nervous about seeing the world again after so many months trapped inside of an institution. I had no idea what awaited me "out there." Whatever it was, it had to be better than death. Tears of joy streamed down my cheeks as I rode in the car beside my dad. I was alive! Dear God and Dr. Milano, I do not know if you worked alone or side by side, but either way, thank you for giving me my life back. 19:03 July 14, 2003 |
