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My Wonderful Medical Team

Some parts of my life were easy. School wasn’t too bad. On trips my mother was allowed to come along, but I was taken out of Physical Education (PE) due to the low oxygen  saturation in my blood and physical weakness which caused, breathlessness and dizziness that would often end with  me blacking out.

I missed out on a lot of schooling, but was always supported by my teachers and class mates. I was allowed to join in on what was currently being taught and was looked after the same way in college. 

My first Paediatric Consultant, Dr Claus Newman, looked after me from birth until I turned ten when he retired. My parents tell me that Dr Newman and his team took care of me like I was their child. There was a nurse named Tracey who escorted me to the operation theatre when I was taken in for my final open heart surgery. As she was leaving the theatre she was very emotional and crying in a way in which the theatre staff assumed she was my mother. 

At one visit to Dr Newman I told him I was feeling unwell and coming home from school every second day of the week. Strangely he asked me to count how many stairs I had to climb to get to class. On my next appointment I told him that I climb sixty-eight steps, five to six times a day, five days a week. My consultant said it was not surprising I kept becoming breathless and fainting. With Dr Newman’s advice, my parents searched and found a new school for me; the new school was on one level, with not a single step to climb. 

I enjoyed my new school very much; I was there for a year and half and did not fall unwell that frequently. When my consultant retired, he told me that my new consultant will take good care of me and that I didn’t need to worry about anything. 

My new Paediatric Consultant, Dr Elliot A Shinebourne, was really good. I was very happy with him. The one picture I have of him in my memory, is whenever I walked into his clinic he used to be sitting on his chair, slightly tilted, resting his right cheek on his fingers of his right hand. I was under his care until I was seventeen. 

At 15 years old and becoming a young adult, I was under the care of the Adult Congenital Team. I met a Clinical Nurse Specialist, Lesley Jones, who was really nice to me and we became friends in such short time. She became like a second mum to me. 

Dr Michael Mullen was my first consultant in the Adult Congenital Team, I found  him extremely good. He was more than a consultant to me; he was a friend, someone who would understand me without me having to say much. Sometimes I was able to get my own way, but only sometimes. 
Dr Mullen would encourage me to do things that a normal woman would do. Go to the gym, learn to drive, get married, and have a normal life.  My face would light up when he walked into the ward. He would always say something that would make me feel better.

On Christmas day 2005 I was in hospital and feeling really restless. I was asked by the nurse what would make me feel better and  I replied "seeing my consultant." After a while I noticed Dr Mullen walking in my room along with his cute little son. I was surprised and happy. He sat with me for about thirty to thirty five minutes talking about Christmas, general stuff around the world and of course, my heart. He didn’t leave until he saw that I was smiling and feeling better than I was when he walked in. I knew he did not come to the hospital just to see me; he must have met his other patients as well but I still felt special. 

At the end of my next appointment with him I was so sad to hear him say "this is my last appointment with you. I am going to work at another hospital." 

I was so shocked and upset I stopped breathing for a couple of seconds. "I'm going to miss you very much Michael", I said eventually. That was the first time in many years I called him by his first name. 

He looked at me and said "I know you will,  your new consultant will take care of you the same way I have taken care of you so don't worry about a thing, and you have your Clinical Nurse Specialist she will always be here for you."

How could I not worry? A new consultant, and most probably a new medical team, I was scared, but I also felt safe as I had my Clinical Nurse Specialist, Lesley Jones, who is an amazing woman. She has always been there for me and still is. A lot of her medical and general advice has changed many aspects in my life. Lesley is a very special person in my life; she supported me at some emotional and hard times I had to face. Making risky decisions is not easy, but Lesley helped me through considering some of the hard decisions which I had to take. 

What also upset me was that Mr Mullen had wanted to see me get married and as he was leaving a few months before my wedding, I was not able to introduce my husband to him.

My new consultant Dr Anselm Sebastian Uebing is very good, although a bit on the emotional side. The reason I say that is because he did a tricky catheter on me in December 2013, and as he was explaining the procedure and its risks, I fell into tears. He held my hand with watery eyes and said "you are going to make me cry." When he went to the ward while I was in recovery to inform my family that the procedure has been successful, my mother was in tears. Seeing her, Dr Uebing’s eyes were also filled with tears, they just did not roll down his cheeks.

I have another consultant who takes care of me when I am on the ward, Dr Rafael Alonso Gonzalez. He once carried me down the corridor after I fainted. He also keeps an eye on the snacks I have on my table, to make sure they are not too salty and not too spicy. 

There is also an Arrhythmia Specialist, Dr Sabine Ernst, who looks into the arrhythmia side of my heart defect. She is very good at treating arrhythmias and getting rid of them. I am looked after by my medical team with love and care whenever I am on the ward.

I was born without a right ventricle and other complex defects in the heart. I believe this is the way I have to stay. I have had four open heart surgeries, many catheters and ablations. I have low oxygen saturation and I am blue most of the time, breathless, feeling weak and having chest pain. It’s all part of my life and will always be. I have my parents’ and husband’s support, and my medical team. I know I will be alright like I have been for the past thirty one years.

Living with a heart defect is not so easy. Having all the support from your loved ones and your medical team being like friends, helps get through any illness a person has.

A person should believe in what they have, not what they don't. 
I am thankful for everything I have. The things I don’t have I believe were not meant for me.


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