@colleenyoung thank you Colleen, Laura and Rosemary! It is so reassuring to be in touch again. Colleen, I am so grateful for the info on the concierge service. I didn’t recall that resource and we need that help right now. I realized while reading your response that I am scared that there may not be solutions. A result of some very difficult consults in my home area which led to hopelessness. I need to remember that that has not and likely will not be my experience with Mayo. Last time I was there vastly improved my medical situation and the Mayo team are now already talking about possible answers. Having a rare disease is a strange experience. I have yet to meet, through any forum, anyone struggling with a similar situation, although I haven’t really searched. Diagnosis itself took years and much struggle to survive. Also, it was so hard for my husband and I to continue to work towards answers for an undiagnosed illness with medical doubt and dismissal. I am not glad to have this but it was a relief to finally find out what it is and receive appropriate and life saving treatment. Thank you for the acknowledgment of both my fear and my hope. We face ahead long plane rides and tiring travel as well as the whirlwind of multiple appointments over, as yet, an unknown number of days. But again, I remind myself of the relief of the support of the entire Mayo organization and the hope for renewed strength and health. This conversation has brought back the memory of the last visit and the hope for this one. I thank you. I will stay in touch and appreciate the responses from the members of this forum. I come out this time with an indwelling PICC line and carrying all the medical supplies to care for it as well as emergency kits, with needles, for an adrenal crisis. I am spending the next days making sure I have the appropriate documentation to get through security. Whew! But I feel emotionally stronger as a result of this conversation and a distinct hope of reducing or ending my frequent ICU visits. Again, I thank you and look forward to being in touch. Rhoda