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Surviving heart failure, common health experiences, valve replacement |
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This is my personal story of heart failure and the experiences that followed. My history, my family and my faith prepared me to endure hardships and to maintain a bright outlook and to make an amazing comeback according to my doctors. My brush with death reminded me that life is short and fleeting. I now have an urgency to remind others not to waste time in bitterness and fighting. I want to help people get their priorities and their relationships straight before it is too late. Chapter One My story is hard to tell in a moment. It’s a long involved story and will take up a lot of your time. On at least 3 separate occasions, I was in a perilous, possibly fatal, situation. I shouldn’t feel compelled to tell anyone my self-centered tales. I am not the first or only to go through these problems. Telling the story risks letting me wallow in self-pity and self-indulgence. But only by telling it, can I give God the glory and the praise He is due. I also think it can be educational in a secular sense. Maybe my story will help you get through something similar. I’m a simple person from a humble family. I have been blessed to be born into a family that loved me and still cares for me. Both my parents stayed together until parted by death. My father is still in love with her and thinks she was the prettiest girl he ever saw. He is easily the best man I know. Dad worked two jobs most of my childhood so that Mom could stay home with us. They spent most Sunday afternoons after church fishing or picnicking or sightseeing with their kids. They taught us solid values and encouraged us to have new experiences and to take advantage of sports and church activities. We were poor. But we always had great Christmases. At least until I went back to school and heard about all the great gifts other kids got from Santa. So I wondered why Santa wasn’t that generous with us. It was only by comparison that we ever missed anything. Our mom and dad made us rich in all the ways that count. They made great personal sacrifices so that I would be the first from either family to go to college. We had the usual childhood illnesses and mishaps. Ok, maybe my three younger brothers had more than the usual amount of mishaps. I was the oldest and the only girl (makes you wonder how I turned out even semi-normal). I like to remind my brothers these days that I was the “good” child. Mom was always cool and knew exactly what to do in every injury. They actually told her that she saved my oldest brother’s leg in a bicycle accident. Brother number 2 and I both developed a mild case of scarlet fever when he was barely 3 and I was 6. We were taken to the same family doctor that brought us into the world and took care of us until he retired when I was about 22. (When I worked at the country club, he liked to brag to people that I had been one of his babies.) The first new doctor I saw, at age 23 for a job, noted that I had a “weakness” in the left mitral valve. He scribbled it, never explained it and said I was fine. Maybe five years later I saw an internist who said I had a heart “murmur”. 80% of adults in America have some sort of murmur. I was told, “Don’t be concerned, exercise, do normal things, no medical attention needed”. He did send me to UVa Hospital for an echocardiogram just to be safe. The head of the heart unit, Dr. Gibson, did the test. As he looked into the screen he spoke into a tape recorder with his interpretations of what he observed. Later it was transcribed and sent to my doctor. It cost me $200.00 without insurance. The only times my murmur seemed to make a difference were for any dental work (I would need an antibiotic to protect my heart and blood stream from infection during the gum probing.) and when surgery (I had my gall bladder out). Instead of the normal 3 days in the hosptial, they kept me 8 days just to be safe and watch my heart for residual problems. It was almost ten years before I had another echocardiogram, when I moved to Fredericksburg. My family physician referred me to a cardiologist who had a technician, not a doctor, do the test right there in the office. She never said a word. The machinery recorded all measurements, pictures, and sounds. One of the other specialists reviewed it later and recorded his observations. When I saw my cardiologist the following week, he read from the other doctor’s notes. It was not in the hospital; no doctor had direct involvement in the test itself; and the cost had more than tripled. That’s progress. His verdict: someday I would run out of steam; only I could determine when. At that time, they would have to go in and repair things. Meanwhile, live normally, just don’t get pregnant. I didn’t even have a regular follow-up routine. I never forgot any of this, but it didn’t stay prominent in my mind. When walking the dog down a wooded path, I thought I was just really out of shape. When my husband and I got lost on a nature walk along the Rappahannock at dusk and decided to climb straight up the hill, I still thought I simply was out of shape. I couldn’t breathe on the incline. He would go ahead of me on the steep embankment and then turn around and reach for me. I used young trees for my foothold to keep from slipping down. We thought we were in the Bragg Hill vicinity in its bad reputation days, and he was panicking about having me out there on foot after dark. I was in such pain and so winded that I prayed, “Oh, God, if tonight’s the night, just take me now!” I held onto the brush above me and didn’t believe that I was going to make it. I knew my heart was objecting to the incline. We finally came to level ground, I eventually could breathe again, but we never knew exactly where we were. Once out of the trees, it wasn’t so dark. We relaxed only a tad and walked on mowed grass under power lines, thinking we were coming up on civilization. We walked until the darkness of night took over and did come to the mud roads behind the Bragg Hill apartments. We were both scared, but we made it out. We never took that hike again. I still didn’t take that as a warning to see my doctor. I just kept on keeping on. We moved to a new house in a new county and settled in. Less than a year after we moved into the house, I got really sick. I thought I had the flu. I couldn’t eat, I couldn’t sleep, I was breathing too fast sitting still. I took the day off and went to the doctor’s office. It was a Friday. He was too busy, so I saw the physician’s assistant who diagnosed the flu and sent me home to eat Jello or mashed potatoes. My husband carried the barf bucket for me all weekend and coddled me. Nothing stayed down. I told my Mom on the phone that I couldn’t breathe when I lay down and couldn’t sleep. So she bought a recliner that Saturday after work. My Dad picked it up, and they delivered it to us on Sunday, even though we lived 70 miles apart. I slept in that chair for weeks. On Monday, my husband took off from work and went with me to the doctor’s office again. I told them I was too sick, that I needed to see the doctor. Turns out my heart was racing at 180 beats a minute sitting still. When it’s that fast, even a health care professional cannot detect it in the pulse. He did an EKG and faxed it to my cardiologist. He called my husband in from the waiting room and said he was going to put me in the hospital. He said that I was in heart failure and needed immediate care. The cardiologist called back and said that they couldn't help me with my heart racing so fast. They needed to medicate me first and slow it down before they could determine what was wrong with it and what would be the next course of action. So he called in a prescription, and the nurse made an appointment for two weeks away. That was a very difficult two weeks. I moved so slowly I was embarrassed. I parked in front of the drug store and would amble over to the drink machines, pretending to read the signs, while I tried to catch my breath. Inside, I took a cart and put my purse in it, and pretended to be shopping so no one would notice how slowly I was walking as I made my way to the pharmacy in the far back corner. I went back to work when I could stop throwing up and sit at my desk all day. People there noticed how long it took me to make it down the hall or across the parking lot, but they understood. At the cardiologist’s office, I learned I couldn’t lie down to sleep because of the fluid gathering around my heart that made me feel like I was suffocating. I did the echo again, and they decided I needed a catherization to get a better look. I never expected to need to understand that term which I had heard many times. He added fluid pills to my regimen. We scheduled a catherization with another specialist in the practice. A catherization is a one-day, in-and-out procedure at the hospital, but it takes all day. They make a slit in your groin, near the bend of your right leg. A long tube with a tiny camera is inserted into the vein and pushed up to your heart. You are warned in advance that if there are any clots in your veins, the movement of the tube may dislodge them, causing a heart attack or stroke. You sign a waiver before the procedure, so you take it very seriously. A skilled doctor will explore the heart, the surrounding vessels, and your brain. He watches everything on a TV screen. The patient is conscious and can watch the screen if interested. You can’t watch the doctor manipulating the tubing because they put up a shield. The doctor will talk to you while doing it and tell you what to expect next. To look at the veins around the brain, he inserts dye into your blood vessels. When done, a person has to physically apply pressure to the slit until you stop bleeding. It is in too delicate an area to apply stitches. You are commanded to lie very still and must use a bedpan. After a long time in recovery, you go to another room where you can have family and doctor consultations. Late in the evening when you are past all danger of bleeding, you are allowed to go home with instructions to take it easy for a few days. At four a.m., my brother and his wife surprised us by meeting us at the hospital (they lived in Lynchburg, 140 miles away). I was wheeled into a room where several people were prepping for the procedure. Their presence turned out to be a blessing to me. Her father had undergone the same thing the year before for a different kind of heart problem, so she knew what questions to ask. They both took notes, which was good. My husband and I both were worried and slightly emotional, although we thought we were tough. Later we realized that you focus on certain things the doctor says, then your mind runs away, and you tend not to hear everything. I was wheeled away into a prep area, where a handsome young man, excuse me for being blunt, held up an electric razor. It’s just a minor, but esthetic, thing they do to make it a little less awkward for the doctor. The prude in me balked, but I thought, “Well, he’s young enough to be my son, and I don’t have a choice.” “Okay,” I said and looked the other way. The room was cold and really quiet except for the technicians in their routine work talk. When the doctor arrives ready to work, they wheel you into another room. The doctor explains a lot of his steps, like when he makes the incision. But the local anesthesia should keep you from feeling anything. When the doctor inserts the dye into the tube to look at the veins to the brain, he warns you that your head will get hot. Believe him. Your head will be on fire. They’ll ask how you’re doing and make a little small talk. Other than the hot head, the only thing you feel is scared and lethargic. You can ask questions if you like. I wasn’t in the mood. When you’re done, you don’t feel the tube coming out, just the P.A. (hospital talk for physician's assistant) applying pressure. He’ll walk along beside your bed when it’s moving. This person is attached to you for hours, in place of stitches. The doctor orders flurosomide for you to flush out the dye, which is administered just outside the surgery unit. Before you get to the recovery area, you’ll be begging for a bedpan. You won’t have any privacy. The P.A. keeps that pressure applied. I was lucky. My P.A. was a black man named Chris. He was an openly devout Christian, cheerful, and upbeat. We had great conversation which helped me relax and stay still. Finally, hours after it started, I saw my family again. The doctor had already told them that I did fine. Already they had called my parents in Charlottesville, who were greatly relieved. From recovery I was taken to a private room on the heart ward at Mary Washington. The doctor who did the catherization came by with a plastic model of the heart. He could tell from my brother’s questions earlier that he would need it. The hospital also provides a great booklet in plain language for patients who have just completed a catherization. He was as thorough as he could be with lay people, new to the topic. He recommended valve replacement for two of my valves. He explained that the type of damage I had was usually the result of rheumatic fever as a child. I had actually heard that part before and knew that scarlet fever sometimes leads to rheumatic fever. Apparently that childhood doctor caught my baby brother’s in time, but was a little too late for mine. Or maybe that wasn’t it at all. We can never know for sure. He recommended surgery as soon as possible before the damage became irreversible. I was getting antsy from lying still so long, but did as I was told. My cardiologist came in later and reiterated the need to proceed. I had been thinking, maybe in January, and he must have read my mind. “You’ll always have more holidays, but having you around is more important than Thanksgiving or Christmas.” He told me that I could linger on with medications and I might last a year or more, but the suffering would be much worse than what I had already experienced. When he felt us consenting, he explained more about the surgery. Both doctors had highly recommended the new surgeon from Pennsylvania. My husband and I made an appointment with the surgeon for the following week. He interviewed us, chitchatting a bit. He wanted to be sure that we were good candidates for the procedure. Yes, I said 'we'. This doctor says it affects the whole family. The spouse is an important part of the healing process. He told us about the different types of valves, and I selected metal upon his recommendation. At that time, it was the best selection for someone my age. (Since then improvements have been made in tissue valves.) We held a sample in our hands. He showed us his appointment book and we picked the slot for the following week. It happened so quickly. I was in and out of the hospital before Thanksgiving. He made it quite clear that five percent of all heart patients do not make it off the operating table. He said he wouldn’t sugar coat it or lie about my odds. Regardless of health or background, five percent do not make it through the surgery. I had to face the possibility that I might be one of that number. I made arrangements at work. I went shopping and stocked the house, since I wouldn’t be able to drive for six weeks afterward. I didn’t trust my husband to take care of my chores. I bought all my Christmas presents and had them wrapped. I made sure I had some cash stashed in the dresser drawer, so that I wouldn’t be stranded out in the country and be unable to pay for deliveries or send someone to the store. I packed my bags and got ready for the hospital. I made a trip home to Charlottesville before going in for surgery. What was foremost in my mind, I thought would be foremost in theirs, too. I told them, “Don’t worry about me. No matter what happens, I am at peace with my Maker.” My mother told me later, those were hard words for my Dad. He hadn’t really accepted how serious my situation was until I said that. He had been in denial about my possible death. She said that after I left, he cried all evening. There is much more to my story, but anyone would be overdue for a break at this point. Glorify God, He got me through everything. What I want to let everyone know is that none of us knows when our end time is coming. We won’t have any second chances. Don’t wait until it’s too late for you. You can be at peace with your Maker today, too. Life is full of trials and tribulations and almost all of them catch us by surprise. You don’t have to afraid of death, or whatever befalls you. I believe God led me through this path so that I could enlighten others. I was young by normal standards when I went into heart failure. People in the waiting room at the surgeon’s office thought I was waiting for someone else; they were shocked to find out that I was the patient. Death is no respecter of age or position. So now the question for you is, “Are you ready?” Your heart can be at peace instead of turmoil. Maybe God has a long life ahead for you, but it won’t be free of troubles. If you have peace in your heart and are ready for the final moment, then everything that comes between now and then will be endurable. I love to talk about being saved, but that’s another chapter. |
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