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After the Operation
After my heart transplant After my heart transplant I was very sick because my body was rejecting my heart and it made me feel very sick and I had to go in for medicine and get biopsies twice a week where they go through a vein in your neck with a needle and they thread a catheter through and then they scrape a little piece of the heart tissue to see if you have any rejection. Rejection is when your white blood cells do not recognize your heart and think it is some bad virus or disease because it is not your original heart and your white blood cells try to attack your heart. So I kept having rejection because the medicine that I was on was not powerful enough so they sent me to Pittsburgh to go on an experimental drug called FK 506 and while I was on FK 506 I was still on steroids from my old medication which made me very happy and fat. So I got very sick from that but then I go off the steroids and felt better and the new drug is working very well and now I have no heart rejection at all. When I went back to school When I went back to school it was very hard because I sometimes I got teased about being fat and puffy from the steroids but it wore off and I looked normal. If that ever happens just pay no attention. If anybody teases you about anything having to do with your operation or anything else and if it is hard for you, you can talk about it with your parents when you get home, if you would like. Or a doctor that you may see. And if you are worried about getting sick from your heart or anything else it always helps to talk about it with someone and you get better and you don't have anything to worry about, don't worry at all, just concentrate on other things like sports, having fun and stuff like that. A little girl who had an operation The following was noted while a 5 year old little girl played with a doll in the hospital play room. The child life specialist was helping her with some hospital play. "She (the doll) got 4 sticks today and the doctor put her in for 18 blood tests tonight. Now you know what they are going to do? Give her 19 more shots because she needs them. Because of the all the blood tests there is no room for an I.V. We're going to operate. I'm tying her down so she won't move. We're ready to drill her open in the stomach. We have to fix her heart" "You know in my own cath, I was tied down, but not for my operation. There was a hole in my heart and they had to fix it. Right, now I still need an I.V." I thought that 14 years ago, when I had a wonderfully successful Fontan operation— that at 21 I could close the book on that chapter of my life. After being a kid with a heart problem— after 21 years of moving at slower pace and never being one to rush, or run or jump or play— I felt like a normal kid. Before the surgery, I'd be out of breath at the top of a flight of stairs. But, that was the way it had always been. I never really understood why my blue lips and blue, clubbed fingertips were stared at. Now, after the surgery I was PINK— bright glorious pink. I am terrifically lucky to have been given the gifts in my life that I have. Boston Children's is one of those gifts. As are my wonderful wife, two happy children, my family and my work. But after 12 years I awoke one morning with my heart pounding. This was the beginning of another chapter of the book that is my life. Hi! I am called Kiki but my name is really Caroline. I am 4. I have a boo-boo on my heart and I have been to the hopcicle a lot. I have a scar on my tummy that goes up and down and some others, too. Mommy says they make my tummy look interesting. I have a twin sister. She doesn't have a boo-boo on her heart and her tummy looks boring. She wants a scar but Mommy says no. I had 4 operations, some when I was a baby and one when I was almost this size. I was brave. Mommy says I am stuffed with nails but I don't think that sounds pretty. She said she will think of something else to call it. I have another operation coming sometime called a transper. I don't know. I am not worried because the last ones were not so bad. I don't remember too well, but Mommy says the hopcicle and the doctors and the nurses are the best. So that's good. Bye for now. Caroline's diagnosis is dextrocardia, Mitral atresia, single ventricle with bilateral subarterial conus, and bilateral superior vena cava. She had a pulmonary artery band at five weeks, a bilateral bi-directional Glenn at five months, resection of muscle bundles and VSD enlargement at 12 months, and an extra-cardiac conduit Fontan at age three. She is doing beautifully - she's tall, witty and athletic and is happy to show you her scar. - Caroline's Mother The thing that I often think about I really don't know why it was so hard for my parents to tell me. I wish my mother had told me things earlier. I know if I known more about my heart problem, it would have helped me keep right up with others. It was like I knew I had this thing called a heart condition, but I didn't know what it was, and then I'd worry. That's all I knew. I'd worry a lot not knowing what was wrong. I only knew something was different and freaky. -Adult with congenital heart disease "... SOLU-MEDROL... Anyone who knows me well knows that the first five days of an admission for me consists of this drug. Although it helps me breathe, I feel like I lose control in other ways. It makes me round-faced, puffy, red and emotional. I sometimes appear as though I've lost all rational thought, I become hysterical, I go from being up to down in seconds-I'm just not myself. Sometimes I feel like my illness dictates parts of my life— Solu-Medrol reminds me how little control I have. Sometimes despite a good outcome, medications have such horrible side effects that a patient doesn't want to take them. Remember that for me it's not just two weeks of medicine, but a whole lifetime. And what might seem paramount to an observer passing through isn't always worth it for me..." -L.R., a college student who underwent a lung transplant describing the emotional effects of taking one of the immunosuppressive medications.
Strength in heart is better than strength in movement. The doctor says its weak, but I say its strong. Why? Because I can love. I can care. I can feel. That's not a sign of weakness, its a sign of life. A sign that my disadvantage is a blessing, only to make me see that everything can not go my way. To make me more aware of this hard, but beautiful world I live in. - 19 year old boy with congenital heart disease The Life I Have Lived and Still Live with Heart and Lung Problems I was born in Fall River MA. On January 15, 1973. I also had a twin sister, her name was Deanna Lee Dupere. But she died after only 11 days of our birth. Her problems were a little more complicating then mine. So I never got to meet her, which means I am unable to tell you about her. She was so sick that my mom only got to see her once for about five minutes. Now about my life. A few days after I was born, doctors told my parents that I had a heart disease called trycuspid atresia. Which means my heart never fully developed so I don't have good blood flow through my arteries and lungs. I also only have one working lung. At 2 months old I had my first surgery and they put in a Cooly-Waterston shunt to help the lung that didn't work, work. This helped for a while. Then at three years old they tried to do a Bypass but it was unable to be done. At the age of 12 in the year 1985, I had a valve replacement. This was to help my blood flow through my heart and lungs. In the year 1991, I developed a new problem with my heart. I started to have abnormal heart rhythm with a very fast beat. Doctors tried to control this with medication several different kinds. which none worked. It got to the point that the only way to fix my heart rhythm was by electric shock straight to the heart with paddles. Another word for it is [cardiovershon]. Which after so many of these it wasn't healthy any more, so the only thing left to do was have a pacemaker put in, as to keep my heart at a normal rate. But they were unable to get me back to a normal sinus rhythm, so my heart rhythm always looks like I am in flutter. It is now paced at a normal rate so i don't feel anything bad any more. Their was only one draw back to that surgery, it was that when hooking up the pacemaker wires to my heart, they accidentally punctured a small hole in my heart. But it wasn't at all the surgeon's fault. It happened because the muscles in my heart were weakened from having so many cardiovershon's. They repaired the hole with scar tissue from the upper part of my leg, so besides waiting for the pacemaker site to heal, I had staples in my leg and was bed ridden for almost two weeks. After my long recovery, I did very good and continue to do so as far as that problem goes. But now going back to the valve I had put in, in the year 1985 when I was 12. This means the valve is 13 years old. And i am now 25 years old, and I have grown a lot since then, but the valve can't grow with me so now it is to small for my body and won't work right any more. So this brings us to where i am now 25 years old. Today's date 5/12/1998. And i am back at the hospital waiting to have a bigger valve put in with the hope that it will keep me stable until i am able to go on a heart lung transplant list. But the soonest they can do the valve surgery is June 17 of this year. Well the only thing else I can tell those that read my story is that I have found the best way to deal with everything is have a positive attitude no matter what happens or what has happened. Also having a great family. In my family I have a wonderful mom who was always there. I can't tell you how many days and nights she spent by my bedside in and out of the hospital. My father was and still is really great also. In fact now that I'm older, I can say that in his own loving way he spoiled me and he, too, maybe not always at my bedside, but he was there when I needed him, sick or not. All I had to do was say one word DAD and he was there, no matter what time or how the weather was. Also I have two really great older brothers. When I was a baby, they too were kind of young, but they tried to help out in my care, with as much as they were able to handle, the older they got the more they wanted to help. I think their favorite thing to do with me was to take me outside to play because that's the only way I could go out was if they were watching me. Now they are grown up married with family's of their own, but still they are always there for me and so are their wives, especially just when I need to talk. I must say their wives have helped in my care as much as they could since the first day they became a part of the family. The names of the members of my family are mom [Roberta] dad [Robert] #1 brother [Albert] #2 brother [Danny] #1 sister-in-law [Jeanne] #2 sister-in-law [Danielle]. But the person who has been my main support since Dec. 27/1992 and has always been by my side. I know that no matter what he always will be by my side, even though we will most likely never get married. Only because of medical coverage for me. But that doesn't matter to either one of us as long as we're together forever. This person's name is Craig S Almeida. I feel the most important part of someone with an illness is the type of care from their doctors. Now in my 25 years of being sick, I have had a few different heart doctors but I think the one who managed my care and provided me with the most help is the doctor I started to see in 1986. His name is Dr. Gerald Marx. At that time he worked at New England Medical Center, Boston, MA. But now just since January of this year he moved to Boston Children's Hospital. He is such a great doctor and all around person that I switched hospitals too, all because of him. Because I love and respect him as a doctor, I think we have a special bond that you don't see often between a patient and a doctor. So I could not even imagine someone else taking over my care, the same goes for his colleagues that also help him with my care: Dr. Geggel, Dr. Folton, and Dr. Baruel. This story was written by Deborah L. Dupere Living with Heart and Lung Problems - Part 2 Well today is May 20/1998, and I'm leaving the hospital. But they still haven't done my valve surgery. It has been scheduled for June 9, 1998. During surgery they will replace mine with a bigger one and replace my pacemaker box so they can ad a second lead. This will help the pacemaker to control the upper part of my heart as well as the lower. Pre-admission date is June 1998 at 1:00pm. Today is June 7, 1998, I'm going back to the hospital for my surgery. Once I'm there, they will start an intravenous line to start my blood thinning medication {Heparin}. They will bring this med to level just right so that during surgery I wont bleed to much or so my blood wont clot to much. Today is now June 9, 1998, day of surgery my mom and boyfriend are here. I'm waiting for my Dad and two brothers to arrive, to see me before I go to surgery. I'm going down at 7:30am, it's now 6:30am Dad and two brothers have just arrived. Now the nurses will prepare me for the Anesthesia doctors to come to take me down stairs to the operating room. The doctors are here my family will go down with me to the waiting room outside of the O.R. Now I'm in the operating room they will now put some medication through my IV to make me very sleepy. Today is Thursday June 11, 1998, surgery is all done. I'm just starting to waken, I slept almost a day and a half. My mom says everything went well. But I'm hooked up to all kinds of machines and have tubes coming from everywhere. I keep trying to talk but know one can understand me. So I'm getting mad and mom and Craig are laughing at me, so I get even more mad. But they only laugh cause they can't understand me. I even tried writing on Craig's shirt, All this cause I wanted a drink but couldn't have one. They may have laughed but I knew they were there when I woke up, the others had already left because it was almost two days later. They stayed until I got to my room in the ICU. We are now on Saturday June 13, I have my chest tubes out. Mom is going home for the night, but Craig is here. I didn't have a goodnight last night. Because they held my pain medication from 10:30pm to 9:00am the next morning. So right now I'm just about crying with pain. The new nurse Michelle F. is getting me some pain medication. Now Sunday afternoon my pain is much better. Mom is back and Kerri, Bob, & Haily are on their way up to see me. Craig will be leaving at 5:00pm, to go home. Mom will be here with me. Doctors say if I keep doing well, I might go home the end of the week or early next week. Today is June 18, I'm going home, doctors say I look great and I'm doing good. My next check up is July 2, with doctor Marx. Now June 23 I'm at home, but things aren't doing well. I look good but I'm in a lot of pain. And my lungs are all congested because I'm unable to cough. The time is 7:30 still June 23. Craig and mom are taking me to the ER, at Boston children's hospital. Orders from Dr. Marx, most likely I will be admitted, for a day or two. The next day I was admitted. It looks like I have a small infection in my lungs. But should be fine in a few days and back home, 5 days later June 28. My lungs are better, I can cough better without much pain. The infection is clearing nicely, and doctor Marx says I may go home today. It's been 2 weeks sense I came home on June 28. But almost 5 weeks sense surgery, and doctor Marx is so amazed with how great I'm doing. Even my labs that he checks all the time are the best he's ever seen them. And most of all I feel great too. But I would also like those that read this to know, that through the years of growing up when I got sick I didn't always have to go to the Boston hospital, so I had plenty of admissions to St. Anne's hospital, in Fall River. All the nurses are really great, some have known me longer then others but I still could never pick a favorite. Because I love them all the same, It's like having another family. These nurses all work on the pedi floor, some of them have left and went to another unit, or moved onto another hospital. I only hope the ones that have left get a chance to read this. So that they can see that I haven't forgotten how nice they were to me, and how much it meant to have them all a part of my growing up and getting were I'm today. I still will never forget the time all the nurses took up a money collection so that my boyfriend and I could buy tickets to his high school prom. They even collected enough money to pay for his tux rental. This is something we'll never forget, THANK YOU FOR EVERYTHING LOVE DEBBIE & CRAIG. Now as for all the local Doctors that took care of me. Well I can't say enough about them either. There was Dr. Delany, he was the first to take care of me, when I was first born. In fact he's the one that had me sent right up to Boston hospital {NEMC} he handled my care for about 16 more yrs. Then came Dr. Jean Limert, she took over my care for about 4 or 5 yrs. The most I can say is they too all took great care of me and they always made sure that they kept in close contact with the Doctors in Boston.The Doctor that takes care of me now locally is Dr. Gabry, and some of his fellows and they to for the most part keep in close contact with the Boston doctors. But I don't see Dr. Gabry to often because with all that's been going on, usually my boyfriend has to drive me straight up to Boston. But Dr. Gabry's office is still there whenever I need them. Well this is the end of my story. I hope it can be helpful to any child, or parent that has a child with a life long illness. Because I know it helped me a lot just to write it. This story was written by Deborah L. Dupere. Kailin’s Story-Part VII: Waking up after the operation The next thing I remember was waking up in the recovery room. My heart operation was over. A nurse was by my bedside asking me if I would like some ice chips. I dosed off again and woke up in the Cardiac Intensive Care Unit. I was lying on my back and it was difficult to move around. What happened the next couple of days was hard to remember, but my mom and dad later helped me put the pieces together. Little by little I noticed more things around me. Many doctors and nurses were moving about. I heard voices and the beeping sound of the heart monitor. I remember being really glad to see my mom and dad by my bed, although they could only stay a short time so I could rest. My mom and dad waited in the Parents Room while I slept. My mom told me later that she liked being with the other parents. She said that it was good to talk to other moms and dads who had children with heart problems, and that the other parents helped her feel lucky rather than feeling sorry.Kailin’s Story-Part VIII: Getting stronger I started to feel a little stronger. I was getting used to the IVs and tubes. The doctors were concerned about my lungs though. It was important to keep my lungs clear of fluids. A technician came by with a portable x-ray machine to take my picture. The nurses tapped on my back to help clear my lungs. That was physical therapy. I didn’t like it but it needed to be done. It was the first time I started to cry since I got to the hospital.The doctors checked my blood too. Sometimes children who have heart surgery need extra blood to make their own blood stronger. Some of my family and friends donated blood the day before I went into the hospital. The nurses had blood ready for me but the doctors wanted to try iron supplements first. The iron was helping my blood so the donated blood went to the Blood Bank for other children in need. One by one my IVs and tubes were removed when it was time for me to leave the CICU. The doctors felt I was ready to go back to my hospital room. Later I asked my Mom when I was getting that yucky “ bathroom” tube. I was surprised when she told me that the tube was already gone. I didn’t remember a thing about it. Back in my hospital room, I was feeling tired. I didn’t even want to go to the playroom. The nurses said that I might be a little cranky. My body needed more time and rest to feel better. It was important to stay in the hospital until my heart was much stronger. The nurses gave me medicine when I felt pain. It was really hard to turn over in bed. I had to have help getting in and out of bed too. The incision on my chest was slowly healing. When I first saw it, it surprised and frightened me. My mom quickly reminded me that this boo-boo would get better too. Kailin’s Story-Part IX: Feeling better and better During my stay, I would have more blood tests, x-rays, EKGs, and Echocardiograms. I didn’t have any more IVs or tubes, but I did have wires connected to me with stickers. That made it easier to have my heart monitored at any time. It didn’t hurt but it was a little tricky getting around. To keep my lungs clear of fluids, the nurses gave me a breathing tool called an incentive deep breathing exerciser. I thought it was a toy at first. If I blew into the tube with enough force, I could make the three plastic balls float to the top of their chambers. It was harder than it looked. I liked the exerciser a whole lot better than the physical therapy.Each day I was in the hospital I felt better and better. I enjoyed going to the playroom again. It was fun playing with the other children. I also liked picking out my meals and visiting the snack kitchen. It was even open at night. I loved getting ice cups and juice whenever I wanted. Before I could leave the cardiac floor, I played games and watched TV in bed. The special shows with singers and puppets, being performed in the entertainment area of the hospital, were on TV for all the children who had to stay in bed. When I was stronger, I got to see the shows in person. I traveled around the hospital in a wheelchair. The hospital had a lot of fun things to see, especially in the big lobby and gift shop. Kailin’s Story-Part X: Going home The day finally came when I could go home. I missed my sister and my Grandma and Grandpa, and I knew they missed me too. Before I was discharged from the hospital, my doctors examined me to make sure I was ready. I would see my cardiologist soon after I went home to check my progress. I knew there would be more heart tests, but that was OK. The nurses gave my mom and dad instructions so I could continue getting better and better.I met a lot of new friends during my hospital stay. Some were the children and their families, others were all the nurses and doctors. I would always remember how kind the nurses and doctors were and how much they helped me. Before I left the hospital, I asked my mom if my heart was as good as new. She told me it was better than new ………..and it was! Kailin’s Story-Part XI: Reflections Many years have past since my heart surgery. I am seventeen years old now. I still have regular heart tests and check-ups with my cardiologist. Over the past years, I have gained a better understanding of what I really experienced that July when I was four and a half years old. I was given a chance to grow up healthy and strong. That was quite a marvelous gift.Many things have changed with time since my heart operation. There are many wonderful programs and support groups to help children and their families prepare for their hospital stay and surgery. It is important to remember that a child’s heart problems affect the whole family. So when a child’s heart needs to be fixed, Mom and Dad have broken hearts too. They have broken hearts of a different kind. What parents want most is to see their child happy and well. When their child’s heart is mended, their hearts feel better too. Although my scar on my chest has faded over the years, people still ask about it. When I tell them that I had open-heart surgery when I was little, they looked shocked and even scared……………but that’s all right. My mom once told me that most people have to wait a lifetime to do something really remarkable………something that important, it would change their life or the lives of those near to them. I only had to wait four and a half years. To read more about Kailin’s experiences, click here.
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© 2007, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated February 1, 2007 |
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