Prolonged Q-T Syndrome
Family members of Torsades Patients
have been told that Torsades de Pointes is 100% congenital, so it is imperative
for blood relatives to consult a competent electrophysiologist experienced with
Torsades. The relatives need to understand the sudden cardiac death potential
and the benefits of an AICD (automatic implantable cardio defibrillator).
However, I realize this is easier said than done. Most people are terrified of
having an AICD and wrongly assume it requires open-heart surgery. It is a simple
outpatient procedure with a small 2 inch incision where the unit is slipped
under the skin like a pocket and the wires are fed through a vein like a
catheter. Family members who have never had any heart problems balk at the very
suggestion that they may have this condition. Torsades is a ticking time bomb in
families and these units would save them from unnecessary death. But even if the
family member does not want this lifesaving device, the knowledge of which drugs
cause a Torsades sudden cardiac death can also help to save their lives.
Most of my own relatives have not been checked. Their attending physicians think my Torsades condition does not apply to my family members. Even worse are the attending physicians for my son and siblings who have told them they do not have Torsades after my family members posed the question. My sister has had 2 near fatal heart attacks in the past year yet her cardiologists are telling her she does not have Torsades and they have prescribed medications to her which are on the Torsades trigger list. These very physicians and cardiologists currently attending my siblings and grown son refuse any efforts to consider Torsades and it has created a dangerous predicament. All of my family members have slow heart rates, prolonged Q-T and many other warning signs listed above. But as long as their physicians will not support the possibility and continue ignore their potential for Torsades, my family members continue to remain in jeopardy. Since they live so far away, it is nearly impossible for me or my physicians to intervene.
many people have died from Torsades who were never diagnosed? The medical
community needs to be educated on this deadly condition.
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