Patient
Definitely have the same problem have had hypertension since I was a child & despite having left ventricular hypertrophy, 90th percentile Coronary artery calcification for my age, mitral valve regurgitation & thickening & history of asthma & I like Allina not the people that answer the phone @ the adult congenital heart disease clinic are not helpful they just relay what someone else has said to the doctor and they don't let me tell them what is wrong with me. They don't understand the jargon what is being said & it is impossible to explain all of that on the phone without being able to get an appointment. Very frustrating to be told I don't have a symptoms that they call "The silent killer". Adult Congenital Heart Disease is a misnomer like Disabled Adult Child it confuses people and puts them on the defensive, is deeply engrained, and goes against all the principles of self-determination, preventative, & daily maintenance in health care. Instead they should be transitioning from a reactive to a proactive approach to heart disease, and not treating people with heart disease & adults with disabilities with defensiveness & suspicion because of their beliefs about their health. Google AI says that they have a similar program at St Cloud Hospital but they don't have it specifically for adult congenital heart disease it also says that specifically within Minnesota there may be areas where it is difficult for people to access the care that they need & that's important to know it does seem there are places in Wisconsin, Canada, Iowa, New York which are accepting patients for complex specialty care.