FaintingUnicorn

Thanks, @Pistol! It's nice to have some reassurance that I'm not inadvertently being an impatient jerk. After asking here and in one of our local FB groups, I'm debating whether I should consider another clinic or resource, either as a primary source or in addition to Vanderbilt. In general, the feedback for the Vandy clinic seems to lean toward the negative. I hope they are isolated incidents, but this would be sadly consistent with some of our past experiences with Vandy specialists. They are just really big and really busy. Mayo and Semmes-Murphy are going on my list, as well as Paula Moore in Birmingham. I did call Vandy again...the girl I spoke to this time agreed and said she would have her manager check it out...no call yet. Sigh. I do plan to stay on top of it, but would love any other suggestions you might have in the meantime. I very much appreciate your taking the time to send me such a kind and thorough reply! ❤️

Hi friends, I know - kind of a lame first post, right? I promise I will come back and write more about my journey so far, and I will have lots of more interesting questions at that point, but... Right now I'm just stumped. My referral has been sitting at Vanderbilt for about five months, and I have received zero contact. Is that normal? First, I know I must be patient. I have no desire to jump ahead of the queue or pester anyone. I'm very much willing to be patient for something I know will be beneficial. And yes, Covid is wreaking havoc with doctor's offices all over the globe. So, I'm not wanting special treatment or to irritate anyone. I also know that, at most of these clinics, not everyone is accepted and subsequently seen, and that if you are accepted there is usually another very long wait to get in... But...how long is too long to wait for a response regarding a referral to an autonomic clinic? At what point do you presume that you have been rejected, and embark on an alternative path? I have called a couple of times, and the response on the phone has gone from a pleasant "You're under review - that's good!" in August, to a terse "Let me take your number so they can call you" in October...but they never call. My cardiologist's office has also called them a couple of times, with an identical lack of response. I had a TTT about a year ago (am I the only one who felt like it could be used as a form of torture?), and my bp drops all day long. Definite diagnosis of OI, with a variety of additional symptoms. Both my cardio and neuro are talking to me about Dysautonomia...but neither of them is willing to venture a guess at what kind, or any additional or underlying conditions. (I believe that this is out of respect for the docs at Vandy, since it is literally the next town over.) In other words, I have no conclusive answers for why my body is freaking out. I'd love some advice. Or, if I really do need to just continue to wait, perhaps some suggestions of other things I could do in the meantime? Thanks so much if you've made to this far. All my best wishes to each of you in your unique journeys! ❤️