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This and That and Talk - My Transplant
Transplants | Last Active: Feb 14, 2023 | Replies (1670)Comment receiving replies
@rose999, Did you get an appointment schedule? You will receive a multi page schedule with everything you need to know about your tests and procedures. It is either mailed, or given when you arrive for registration.
Be prepared for a marathon-like adventure! Dress comfortably, and carry a light jacket or sweater. Don't be alarmed if you schedule is changed as you proceed through the testing. Sometimes things are added and rearranged, but you will be informed as the day goes on.
I'll be thinking about you.
Rosemary
Replies to "@rose999, Did you get an appointment schedule? You will receive a multi page schedule with everything..."
@rose999, Good for you - The online app is great! If you need further tests, I can assure you that you will be scheduled for them. There is a lot of 'behind the scene' communication between the departments at Mayo, so even if you are not scheduled in a particular department, I feel very confident to say that it can be addressed. If you are ever in doubt about a particular concern, be sure to discuss it with the doctor, NP, PA who will be seeing you.
I like your attitude - you say that you are excited about the upcoming visit:-)
I do not know what a study visit is. That is a term that I am unfamiliar with. Maybe you can let me know after you return home!
Rosemary
@rose999 and @rosemarya,
A study visit is typically an appointment where you meet with a study coordinator, and they let you know which clinical trials are open for participation for you. You can choose to participate or not, it's completely up to you. They will give you all of the information for each trial so you can decide if it's something you wish to join. You can also ask questions about clinical trials you have seen elsewhere, and they may be able to give you input on those as well.
Thanks!
-Kristin
Thank you. I am up for that. I also had St Louis Univ save some of my brother’s liver tissue (frozen.). My sister-in-law said we could donate it to whatever test could use it. He was thought to have died from FSHD MD but autopsy said liver disease. With the type of MD he had more muscles wasted away than expected. At his death he had only a couple muscles left.
Maybe the muscle wasting came from the liver disease as well as the dystrophy. MD has those muscles. Research is the future.it is like putting a puzzle together that has no picture until the end.
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Yes it is online in the app. There are already 22 appts. The first day is tight—but I will give it my best. What is a study visit? My guess is what clinical studies are open? I have some problems concerning my esophagus but I don’t see any appts that look at it. But then again I don’t know if there is room. My heart, lungs, and kidneys are having a thorough look. I think it also makes your local doctors take a second look at their work. I am more excited than anything. Thanks for alerting me to be prepared for change along the way- i would have imagined all sorts of things.