Listen to your patients. The best way to learn. Health care provides, quite frequently, forget that the medical actions involve other human beings that have the right to decide what best for their bodies and minds. The immediacy of the medical act (which is multifactorial in nature) is leading us to listen less and
Listen to your patients. The best way to learn.
Health care provides, quite frequently, forget that the medical actions involve other human beings that have the right to decide what best for their bodies and minds.
The immediacy of the medical act (which is multifactorial in nature) is leading us to listen less and act quickly.
The following story was completely written by Gala Baranchuk, an 11-year old girl from Kingston, Ontario, Canada. She lives in my house.
She is my daughter.
This is her experience of being diagnosed and treated for a syndrome called “Wolf-Parkinson-White”. She had a radiofrequency ablation under the care fo Dr Bob Hamilton, an expert paediatric electrophysiologist.
She spontaneously wrote this as part of a school task called “Memoir”. This was her experience, in the exact the same way she wrote it. With her consent and approval, I am sharing it with all of you.
I think it could help us to understand the patient’s perspective.
Kingston, Ontario, Canada, Octubre 2017
It was a nice cool, and windy morning of May 2017. The alarm went off, and I woke up. I looked out the window in my room and I saw the trees swaying as the wind hit their branches and leaves. I went downstairs to eat breakfast. I did not feel well. Even though there was a delicious smell of pancakes, I felt too sick to eat them. I laid down on the couch and told my mom I did not want to go to school. I was so cold, I wanted to grab a blanket. When I stood up, I had the feeling that the room was turning in circles around me, and all of the sudden, everything went black. I woke up to the voice of my mother asking in a worried tone “What was that really loud noise?” After seconds, I realized that I had fainted! My forehead was hurting and I didn’t know why. I touched it, and it felt wet and warm. I looked at my hand and it was covered in blood. I was scared and disgusted at the same time because the red liquidity substance was never my favorite thing to see. I was confused, I didn’t know what to do, and I felt helpless. I called my mom, she took me to the couch, and settle down. My mother phoned my dad who was at work, and asked him to come home, and take us to the hospital, because my mom thought I would need stitches.
A few minutes later my dad arrived home. He was dressed in his new suit and he looked elegant. He held me in his arms and took me to the car. I was afraid, I would get his clothes dirty with all the blood dripping from my head, but I loved the feeling of protection he gave me. Dad gently put me in the back seat of the car. I noticed the coldness of the leather seat and it made me feel lonely again even though my mom sat beside me. The movement of the car made me feel even worse than I already felt. The only thing that comforted me, was my mother holding my hand. The trip was quiet. Occasionally, my father broke that silence by asking me if I needed anything. I just wanted this day to end, but I knew my dad could not give me that, so I always answered, I was fine.
When I arrived at the hospital the first person that saw me was a nurse. She took my temperature, blood pressure, put me on a scale, and asked me too many questions that luckily my mom answered for me, because I felt too dizzy and sick to respond. When the nurse finished with me, she sent me on a wheelchair to the first booth of the row to wait for the doctor. My mother closed the curtains, so I could have more privacy. I still was scared, so my father tried to distract me by touching all the doctor’s tools which were near my bed, and making funny faces while he was using them in a wrong way. After waiting a long time, the doctor came and sat beside me. She checked my stomach, ears, and throat, and asked me some questions that this time I could answer because I was feeling better. What I had was a stomach bug. My cut was not deep enough for stiches. The doctor gave me a pill to feel good again. When I thought I was ready to go home she told me, “Sweetie, I am concerned because you fainted, therefore, I need to take an electrocardiogram of you, ECG for short, to check if your heart is working fine”. The name of the test was long and alarming, but I felt secure knowing my dad was there, and he is a good cardiologist. The ECG is a painless test, but the stickers the doctor put all over my chest, arms, and legs made me feel like a human scrapbook. While the test was going on, the adults in the room were chatting and everything was going well, until my dad suddenly looked at the monitor, and his face turned pale. I knew immediately that something was wrong. I asked my dad what was happening, but I did not get any answer. He left the room, followed by the doctor, and my mother. I was left alone with my fears and my worries.
Minutes later the doctor came back and told me that my heart was not working well. I had a syndrome called W-P-W, Wolf Parkinson White, and it could be pretty serious. It was hard to believe, because the name sounded cute, it made me think about a little white wolf called Parkinson, but I was being too naïf. Right away she connected me to a Holter. Another machine! More stickers! And I had to carry that machine with me, for 24 hours! It was heavy and uncomfortable. I certainly was not looking forward to going to sleep that night, because the machine reminded me of a big cold brick and I would prefer a small, warm pillow for falling asleep. Also, they booked me for another test. In that test, I had to run on a treadmill. At least that sounded a little bit fun! When the tests were done, the doctors had the results. I was nervous and curious to find out what was going to happen to me next.
The doctors suggested for me to have a heart surgery at the Sick Kids Hospital in Toronto. They explained what was wrong with my heart, but I did not understand a single word. I am not sure, if that was because they used very complicated words, or because my mind went blank after I heard the word “surgery”. Later, at home, my mom talked to me with easier and warmer words and I figured out what it was all about. I was born with an extra “cable” in my heart, that was bad for me, because could make my heart beat at a dangerous speed. The doctors wanted to take it out as soon as possible. Well, they were not taking it out, they needed to burn it! The idea of burning something in my heart shocked me. I did not trust that it could be possible without making more harm that I already had in my heart.
The surgery was planned for late June. While I was waiting I went back to my normal life, studying at school, training gymnastics, and going to track and field practices. Most of the time I did not think about the surgery, but some nights while I was laying on my bed, all my thoughts were about the surgery and how it could change my life, overwhelmed me again. Shyness is in my nature, but I thought if I shared my feelings with my friends it could make me feel a lot better. It was sad and disappointing when one of my friends did not believe me and accused me I was a liar, but happily the rest of them supported me. Talking to them was very nice, I felt like freeing something that was stuck in the middle of my chest.
The beginning of the warm and sunny mornings announced me the day was there. We loaded the car with our suitcases, and my dad drove us to Toronto. I remembered how anxious and scared I was during that trip, but surprisingly I didn’t want it to end, nothing could be worse than the surgery.
When we arrived at the hospital everything happened very quickly, they assigned us a room, gave me a blue gown to wear, reminded me not to drink or eat anything, and asked us to wait there until the surgery room was ready. Someone would come for us. I wanted to run, escape from there, go home, and cry, but I was not able to say a word, and I felt like a scaredy-cat not wanting to speak up. A woman opened the door, and asked us to follow her. We got into another room where my mother had to put on a clean white suit over her street clothes, because I wanted her to be with me when I would get the anesthesia. My mother looked as a bee farmer with that suit. Though her appearance was funny, I could not laugh. My mother held my hand tightly and together we went into the surgery room.
The room was an awful, cold, and terrifying place for me! The big bed, the monitors, the beeping sounds petrified me. The nurses were talking to me, I saw her mouths moving, but I couldn’t hear them, it was like silence but not really silent. I felt the plastic mask over my mouth and nose, the cares of my mother on my head, the distance sounds of the machines, and suddenly I couldn’t breathe, I felt dizzy, sleepy and the idea of dying invaded my mind.
Hours later I woke up, and the first thing I saw was my parents beside me. I had a sense of a big relief, I was alive. I had to spend a night at the hospital, so the nurses could check on me every two hours. I was sore, and tired, but I knew after that night everything would be over, and that gave me the strength I needed.
The following morning, after eating soggy crackers and drinking warm apple juice, the doctor said, “You are ready to go home, Ms. Gala, and I want to congratulate you for being so brave”. I was happy with the compliment, but also a little bit confused. Then, on our way to Kingston, I thought about what the doctor said, and I realized he was right. I was being fearful, but that did not mean I was weak. Actually, my fear made me courageous, not the lack of it. I realized that fearless people like me, are not afraid to be afraid. Now I feel more confident about my ability to handle what scares me and I that makes me feel more secure. The best moment in this chapter of my life was when I trusted people by letting them handle my heart, the part of my body that makes me who I am.
By: Gala Baranchuk