My 18 year old was diagnosed with medulary sponge kidney with nephrocalcinosis at age 10 and kidney function was at 60% at last checkup. She was diagnosed with long qt syndrome at 17 and has an implanted ICD and pacemaker. I found a notice from her doctor saying her last 2 checkups indicated high blood pressure and she needs to see her doctor. She is 18 and has decided she doesn't need to go. I am very concerned. What do these combined chronic health problems indicate? What can I tell her to convince her the importance of follow-up?
Long QT syndrome is a very serious condition where, as you know, patients are at higher than normal risk for potentially fatal cardiac arrhythmias. The fact that your daughter has an AICD in place tells me that her cardiologist feels that she is in a high risk category. As one gets older, the risk of a sudden cardiac event increases incrementally. That alone, should be worrisome enough to your daughter that she would get regular follow up. Separately, high blood pressure is a known contributor to heart failure, myocardial infarction and stroke in the general population. It is a "silent killer" and there is a much stronger push these days to get tight blood pressure control in anyone with high blood pressure. In patients with kidney disease this is even more important to do, as it may be harder than in patients without kidney disease to achieve the blood pressure control that is desired. Frankly, your daughter has to understand that, as an adult, she has to take responsibility for her health, and if she does not get appropriate follow up and treatment, then her risk if dying at a young age is quite real.
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