Twice a year I have to go the the hospital to have a check on my ICD and it's data. This last Monday I took the train to the AMC Hospital in Amsterdam and was met by a very friendly nurse who followed the procedure.
After that it was a long wait this time to meet THE Professor. He looks like a professor, he talks like a professor....and you can take it both ways. On the one hand I can tell all his cells in his body are absorbed with knowledge about the heart. He breaths cardiology, goes to bed with it and wakes up with it. On the other hand it is hard for him (and many with him) to 'translate' his knowledge to a normal level for a normal person like me.
I feel that they take my case seriously. I know that they know who I am, I am not just a number over there. But for me my SCA is about emotions, for them it's about a mechanical thing, like a car that stopped working.
Another hard thing is that every time I go there I feel that there are new 'diagnoses', new suggestions to be made. This time the professor said to me: "You do have some rhythmproblems, but these ones are not life threatening. These ones won't prevent you from turning 100 one day. These ones don't have anything to do with your SCA!"
"Huh...??? What are you saying, what does that mean?"
"Well we don't know what caused your SCA. We still don't, but it could have been a virus on your heartmuscle for example and not so much some genetic failure in your heartrhythm. The problem we have now is that your ICD does not know the difference between these rhythm problems and 'real' problems with your heart. So this causes some 'noise'. We will talk about this in our team and we may be able to treat you a bit better with some other medication. Treat, not cure."
I walked out the hospital 5 minutes later, feeling totally empty. All the energy was drained from my body. Why, I am not sure. This 'diagnoses' are not completely shocking, although I did think: "but this means that I might have (had) two different things". Being there just makes it real. Super real. For many days on I can 'forget', feeling almost 100% recovered now. (Spring and Summer coming definitely helps to gain more energy) My next visit to the hospital will be different: 1) my husband will be joining me, 2) I will take a day off and do something FUN to get rid of the more negative energy and regain some of my joy for life!