Rhoda, I hope that you will have a safe journey to Rochester. I have just now read your message, and I want to encourage you to have all of your questions and concerns written on a list so that you and your husband will remember all of them.
Don't be shy about asking about genetic testing, or about asking any questions. My experience at Mayo has been that they welcome questions, and that they (at all levels of care) will provide answers in way that a patient can understand by breaking down the medical terms. I remember an occasion when a doctor asked for my list, and he read it himself and provided me with very complete explanation of my concerns, and how one could relate to another.
On another occasion, very soon after I arrived at Mayo from ICU in KY, one of the liver doctors asked me to describe the symptoms that I had been experiencing. I recited my list, until I came to a particular symptom that I brushed aside by saying, "O that's not important". (It had been shrugged off as not important at a different hospital) The doctor at Mayo askd me to tell him, anyway. And he wrote it down in his notes.
I understand the anxitey that you are feeling as you return to Mayo. I return annually, and there is always an excitement and anxiety for me, too. My husband and I enjoy sitting in the Ghonda lobby between appointments. We enjoy looking at the artwork that is displayed throughout the many departments, too. I hope you will be able to enjoy a few quiet moments between your appointments and procedures. I wish I could send some warmth and sunshine your way. I am sending a virtual hug.
@rosemarya so nice to hear from you! Thank you for the encouragement to ask questions as I tend to be shy. Fortunately my husband helps to make sure we get out all the information and questions. It helps me so to hear your experiences and reminds me that all the symptoms are important. I am excited, anxious and hopeful. I too love the lobby and, if I have the right one, the piano music that is often live there, especially at lunchtime. I have added questions regarding genetic testing to my every growing question list. The primary purpose of this visit is to end or minimize the episodes of infection which lead to adrenal and septic shock and the frequent ICU visits and you have reminded me that there isn’t any information or question that is not valuable. I know from Mayo that they are having me come back because they think there is something they can do and I hang on to that hope. I so wish for a return to the life of what I call the ordinary. Work, husband, family, the everyday times that are simple, ordinary and now precious and longed for. Being able to see a friend, make a meal, be with my husband without it being followed by disabling exhaustion or adrenal crisis. Especially longing for less fear of acute ICU level episodes and the freedom to travel a little. Right now we have been asked to stay home and close to the local hospital who knows what to do in crisis as not all hospitals know what to do with my somewhat rare situation. Thank you for your caring and encouragement. As we prepare to fly out on Monday, I am glad for the support. I too send a virtual hug and all my appreciation. I hope to stay in touch. All my best wishes, Rhoda.