Stuart is one of the oldest surving CHD’ers with Transposition of the Great Arteries, here is his story of living with TGA.
Introduction of myself: My Name is Stuart Watson, I was born in December 1966, with Transposition of the Great Arteries, and underwent two full Open Heart Surgeries to correct this. The first op at 8 days old, where my heart was opened and an ASD was created (Atrial Septostomy).My Parents were told the chance of success would be less than 20%. In this process my right chest was opened the muscle removed, ribs spread and the heart as operated on from the huge hole that this created. Unfortunately for me, my chest muscle “died” during the operation and the doctors were unable to put it back, so I now have only one chest muscle. I have one breast.While this operation was a success in the term that it kept me alive, my troubles were by no means over. In the late 60’s the Mustard operation was still being perfected and children who received it were best left until past their third birthday. I was admitted to hospital in late 1969 with severe cyanosis (a sign that oxygen in the blood is dangerously diminished) The decision was made to operate (mustard procedure) at age 2 years 10 months, and at the weight of an average 6 month old baby. My parents were again told the inevitable news that I had less than 20% survival rate. When the doctors opened my heart, they discovered my ASD had naturally shrunk to a max dia of 8mm, and had only covered the bottom third of the atria wall. I have been told in subsequent years that the cardiologists of the time were surprised I had survived at all with such a small hole.
My personality change after the mustard changed significantly, from being a grumpy little boy to a happy go lucky wanted to talk to everyone kind of kid.
My earliest ever memory is lying on the operating table with the nurse preparing me for surgery on the 13th October 1969. In February 1970 I learnt to walk. Aged 3 years 2 months.
My entire life has been one fraught with limitations from my condition. I have never had the stamina or fitness that other children gain naturally. I was recently asked at what age I became self conscious of my condition. Most people naturally accept that it is as a teenager. However I disagree. For me and many other CHD, it’s from aged about 8 to 12. These were without a doubt the hardest years of my life. All my friends and relatives were up and about playing sport, and generally any activity they could do outside. I may as well gone and sat in their dust. No-one understood, and no-one tried to.
When I became a teenager a level of independence arose that I guess every teen has. It helped me significantly. My self esteem went up as I discovered things I could do, all be it a little slower than the average joe, I could do it. So for me my Teen years were the greatest in terms of growing. I enjoyed everything from playing the piano to hunting and shooting. I did a lot of tramping, and its here where I owe my greatest thanks to my friends, never once complaining about my lack of speed, and my friends always walked at my pace.
In my early 20’s I met a wonderful women who became my wife. I was married 27th November 1993. In 1999 after many many discussions with our Cardiologists we had our first child. We had several in depth heart scans preceding birth, and our daughter was whipped away immediately at birth and given an echo. In Feb 2002 we had our second child and again with the same precautions. Both girls, have no signs of any heart defects. At the time we first started talking about a family my cardiologist had data for only 30 TGA patients worldwide (Male or Female) that had gone on to have a family of their own. It was and still is his opinion that TGA is not hereditary, but at the same time advises me that it won’t be until the third generation of TGA repaired kids start to have families before they can rule hereditary out.
Almost every year I had some form of SVT that was reasonably severe. In 2006 I had a another major attack again with suspected VT. In Early 2007, I had what is now suspected as the first of several small Ventricular Tachycardia (VT) attacks. I carried on, not thinking anything major was wrong. How wrong I was! On June 3rd I went into Severe SVT, however I was able to revert to sinus myself. On Monday the 4th (Queens Birthday in NZ) I went into SVT early in the morning and it was then I knew some big was wrong. I could not revert by using every trick I have ever been taught, so by mid afternoon I went to the Emergency dept where almost immediately I suffered a VT attack. MY SVT stepped up to a constant 190BPM. I was admitted to a Ward and suffered my first major VT attack. I quickly reverted back to SVT but looking back realise it could have been over right there.
I was then moved to CCU, where I underwent a trans-oesophageal echo and had another major VT attack. It was then confirmed that I was in complete heart failure. My right Ventricle had reached the end of its usefulness. All this by day 3. I was reverted back to sinus rhythm with lovely steady pace of about 65BPM, and it was so nice, and just as I was getting used to it, I had my biggest VT attack, and this was very frightening. Especially seeing two nurses sprinting flat tack down the hallway to get me. They told they thought they would be collecting a body, the attack was so big.
The next day I was advised that I would be transferred to Auckland Hospital Cardiac ward for assessment for a cardiac transplant.
I then had my ICD implanted and was advised that indeed I would need a transplant as my only means of long term survival. I went through numerous psychological and social tests and was declared an acceptable candidate for transplant.
I arrived back home on July 3rd. In hospital for exactly 1 month. I then returned to Auckland and the end of July to discuss transplant, and the decision was made that I would have approx 6 weeks to decide if transplant was right for me. It was my call if I wanted it. I am extremely grateful to the transplant team for allowing me to be part of the entire decision making process. I went back to Auckland again at the end of August and gave my consent to be on the active waiting list.
On September 17th 2007 at 10.00am I was officially placed on the list, and it is now 16 ½ months since then, and I am still waiting for that ever important call.
I have kept and remain extremely positive about my impending transplant and my long life ahead. I get very tired very quickly these days, I am unable to work, but have dedicated many many hours doing work for our local Branch of Heart Children NZ, and the self satisfaction I get from this work is immense.
And to date, that is my story.
UPDATE 1: On 20th March 2009 Stuart received his new heart.
UPDATE 2: On 29th March 2009. Stuart is now at Hearty Towers for 8 weeks of recuperation.
UPDATE 3: 2nd August 2010. It is now over a year since Stuart received his new heart and continues to do well.
I am always available to chat about your issues and discuss my knowledge.
Feel free to email me : firstname.lastname@example.org