I’ve been waiting for a while now to be contacted by the Evalve trial. I got bloodwork done as soon as they asked for it two weeks ago (after waiting five months to be contacted by them). They told me they would be in touch right away to get the rest of my testing under way. Since then… silence. I even left a few messages for them.
Today I get a call from the assistant of the doctor who is running the trial. She called, concerned that I didn’t get my bloodwork done. I explained that I did get it done, two weeks ago, and she should call and ask for it. This was the beginning of a very unsettling conversation:
The very nice assistant then told me I’m “all set for tomorrow”. Tomorrow? What is tomorrow? I asked. Apparently they booked a very big test for me and never told me about this. No phone call, nothing in the mail, nada. I proceeded to ask questions. The assistant explained I would be getting an echocardiogram. No big deal I thought, I’ve had those before. But then I thought about it and I asked if it was in fact a trans-esophageal echo (the one I need to complete my review for the Evalve trial –the one I’ve been waiting forever to have done). This is a pretty big deal to me considering I will be put under anesthesia and I had less than one day’s notice. And sure enough, it is the test I am going for in the morning. Good thing I know I cannot eat past midnight tonight AND that I would need to bring someone along with me tomorrow. Because not one person called to prepare me. How crazy is that?
This all made me very unsettled. If they can’t even get themselves together and organized to schedule my tests how am I supposed to feel good about any of this? How do I trust this operation to go into my heart through one of my main arteries and stick a microscopic clip onto a valve in my heart?!!! It’s scary enough and it’s even worse when you go into a situation where you do not trust anyone because of the rampant incompetence.
I’ve had my share of bad experiences in hospitals so I am already scared of procedures because I have seen doctors act carelessly. I have a hard time putting my trust into someone’s hands so when stupid stuff like this happens I feel so incredibly helpless. It makes me really nervous and while I just want to get this over with I am super nervous about tomorrow. I am headed to Columbia first thing.
I am getting these two tests tomorrow and from what I understand I will then be told if I have been accepted into the trial. I will then meet with the doctor in charge of the trial itself and ask my questions. I’m not even sure how I feel about any of this at this point… It’s all so fast.