I had the musterd surgery @ the age of 7 months. i was born in 1981. i have since had several problems. i also now have a pace maker, since the age of 19. this is just causing more problems as well. i can not see an adult cardioligist where i live because they are not aware of my heart problems. the doctors here are kind of at a loss of what else to do for me. is there any thing else that can even be done for me at this point? is there any other problems that i may have to look forword to?
You are definitely demonstrating some of the issues associated not only with the Mustard surgery for d-transposition of the great arteries (d-TGA), but also the issues associated with patients with adult congenital heart disease. As described in my last post to you, the Mustard surgery for TGA creates an intracardiac rerouting of blood flow from the right side to the left and from the left side to the right, so that blood goes to the correct locations. However, the problems from this are many. First, as you’ve already experienced, the sinus node (the natural pacemaker of the heart) can be damaged in this surgery and can require a pacemaker. There is also a risk for other atrial arrhythmias, due to the extensive intra-atrial surgery. What can also happen, though, is that since the right ventricle is now made the pumping chamber for the rest of the body, it can fail, as the right ventricle was never designed to pump at such high pressures and resistances. This can lead to decreased exercise tolerance, heart failure, and potentially lethal ventricular arrhythmias. Overall, the lifespan of patients with Mustard surgeries is reduced, with need for heart transplantation being increasingly seen as the population gets older.
Overall, at the age of 30 years, you need to be seen NOT by an adult cardiologist, who has limited knowledge of congenital cardiac disease, but by an adult congenital heart disease (ACHD) specialist. I would recommend that you search for the Adult Congenital Heart Association, which is a patient-sponsored group that can get you in touch with an ACHD specialist near you. That said, you may need to travel a bit to find one, as there are not nearly enough for the volume of ACHD patients around. You will want to work with an ACHD specialist who has access to a congenital cardiac surgery program, in case you need surgical or catheter intervention, as well as electrophysiology to monitor and to maintain your pacemaker
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