Quick precis of my story: I was waiting for an angio appt (told 6 month wait) when my heart decided it could wait no longer and I was admitted via A&E and eventually had a stent fitted. It was also discovered that I had Cor Triatiatum since birth, explaining why I'd be pulled out of games etc. at school breathless and with blue lips and had periods of fatigue and breathlessness throughout my life. They have not given me any further appointments to follow this up which concerns me. Does anyone have experience of this condition and what treatment was given? Also, one month post stent, I'm still having sharp pains in the heart area which I understand can be caused by stretching of the artery during the procedure (I was in considerable pain during it and was given morphine.)How long does it take for this to settle? Thanks for any advice.
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choralsinger
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Morning choralsinger. I had to look that one up! Have you got your hospital discharge letter from when you were first diagnosed? It should state the next steps. As your condition is rare it’s likely cardiology will keep you under their care. I’d suggest phoning the cardiologist’s Secretary and chasing the next steps. The number should be on the discharge letter. Unfortunately things can get overlooked (I speak from my husband’s experience) so actively chasing is necessary. If you don’t get anywhere, contact the PALS service at the hospital concerned. They’ll help you.
Good luck and all the best to you and your loved ones. Let us know how you get on.
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