Krissy, I am so sorry you have had so much trouble. I have read so much about others experiencing the same kind of issues with their doctors. I know that I have been truly blessed.

To go to Vandy, I believe you have to have your GP, Cardiologist, etc. refer you. They contact Vandy, fill out the extensive forms that are required for the referral and send in all of your records....especially your positive TTT. Then Vandy will decide if you are a candidate for any of their research studies. (In case you don't know, Vandy is a huge research facility for this disease and they accept people for various research studies they have going on.....which are different all the time based on what they happen to be studying. In most cases you go and stay approximately 2 weeks for testing, evaluation and treatment.) If you don't qualify or if you aren't interested in participating in a study, you can just go for a 'clinic visit'. This is where you go for one full day for testing and a visit with one of their doctors. (This is what I did but not because I did not want to be a research participant. I did not qualify because of some of the meds I am on and the fact that my docs and their docs did not feel I could come off of them for the amount of time that would be required.)

My husband and I live in GA, so we drove up the morning of my appointment. I had to be there at 11:15 for the testing they do before you see the doctor. The testing is autonomic function testing (AFT). They do several different tests that include a more elaborate version of the poor man's tilt...meaning they have you hooked up to all the machines but they don't have you on the table. Then you do some breathing tests while they watch your heart rate and blood pressure and then they stick your hand in ice cold water for a couple of minutes and watch your vital signs with that as well. They are pretty easy tests but they give the doctor a lot of info.

Then at 2:15, I met with the doctor. His name is Dr. Satish Raj and he spent over an hour with my husband and me. He took a very thorough history and then he gave me his opinion of my illness. He was still concerned about some things so he asked if I could stay in town overnight and have more testing done the next day. So we did. It was amazing because we were there until after 6:00 pm and he managed to get a couple of very specialized tests scheduled at the last minute so I wouldn't have to come back until my follow-up appointment in June.

The next day, I had a nuclear medicine test called a blood plasma volume test. He ordered this because I am chronically hypovolemic (dehydrated) and that exacerbates my condition. He wanted to find out if I my blood volume is low and it turns out that it is. That answers some of the questions about my low blood pressure and why I pass out so easily. He also did another TTT to see if they could recreate my syncopal episodes. He said it was very unusual for someone with POTS to faint. Usually they have near syncope but not complete syncope. Well, I did pass out during the TTT. They also found out during the testing that I have a very low red blood cell count. That showed up during the nuclear medicine test but it does not show up on normal lab work. So I am very anemic even though normal lab work does not show it. So now, we are working on aggressively treating this as it causes a lot of bad symptoms.

Other than that, he gave me other tips for lifestyle change, most I'd already heard and tried to implement in one way or the other. He also did a few med changes, prescribed waist high compression stockings and suggested that I get into a cardiac rehab program where I can start swimming with assistance. (Hopefully calling it 'cardiac rehab' my insurance will pay for it!)

Now this expert will continue to be involved in my care. My local cardiologist will use him as a resource while managing my care. I have access to him through email, so I can ask him questions whenever I want....he always answers and I follow-up with him in June. He is also very willing to assist me in applying for SSDI. He sent letters to my PCP and Cardiologist explaining my disease, what my treatment plan should be and why I should be on disability. The packet he sent was humongous! I pray it will be enough to help me qualify.

All in all, I was very, very pleased with my experience there and I would highly recommend it to anyone who is seeking help. EVERYONE we came in contact with at that facility was super nice and helpful, from the FREE valet parking attendents all the way to the doctor....everyone went out of their way to be friendly and helpful in any way they could.

So, if you have any specific questions you want to ask, please feel free to. I certainly don't mind answering. I pray you find the help you need.