This and That and Talk - My Transplant

@lcamino, When you become a patient of the Mayo Transplant Dept, (and this how it was for me) you are assigned a pre-transplant nurse. She/he will coordinate your schedule during the time leading up to your transplant. And you are only a phone call away. She/he will also be available to answer any question. After transplant, you will have a post transplant nurse. And she/he is always a phone call away.
As for distance, I am 800 miles away, and I learned right away, that the care that I get at Mayo, extends the full distance. I no longer need to see my GI, for liver because my GI care is with the transplant dept. I do keep in touch with him - and he does my colonoscopy locally. I have never had a nephrologist because my kidney failure was sudden. And I do not need to have one since Mayo takes care of that too with the labs and yearly review. If I need any follow-up information, it has been directed to my medical facilities locally. My PCP directs and monitors my 'normal' things like my annual routine cholesterol. BP. gynecology, etc. And he gets my reports from Mayo.
My experience has taught me that I (actually husband) has to be very direct, almost aggressive sometimes, when I need to report to ER after hours for elevated temperatures, UTI symptoms, flu like symptoms, etc. My 'guidelines' are different than for general population, so sometimes the sign-in desk does not want to let me sign-in. If this ever happen, to you, or to anyone else reading this, be sure to tell them that, "I am a transplant recipient" - That usually gets a reaction of urgency. And always, there is a 24/7 phone connection to the transplant dept for the doctor / or you to call.
Before you leave the hospital, the nurses will teach you and your husband everything that you need to know. And, like me, you will probably get a binder full of information to take home. I still refer to mine!
I do hope that this helps to relieve some of your fears. Also, keep in mind that each organ, and each person is individually treated at Mayo. So our visits, our lab schedules, are each unique for us, but also very clearly defined for the routine post transplant stuff. And emergencies do happen, and they ,too, are well directed from a distance. (that experience can wait for another day).
Enjoy your day, and tomorrow, and the next day...
Rosemary

@lcamino, I forgot to add that there is an online patient portal that is awesome! Rosemary

Hello

Hi Amy,
Welcome to Connect. We look forward to getting to know you. Are you a transplant recipient? A donor? What is your interest in transplant?

I am heart transplant recipient 07/17/2015

@amynewheart, Hello, and welcome to Mayo Connect. Am I correct in reading your name, that you are a heart transplant recipient? I am a liver/kidney recipient, and have recently celebrated my 8th anniversary.
We are here on Connect to share our experiences, and to learn from each other, and to support each other. We ask questions and we help to find answers. We do not judge anyone because we realize that we each have different concerns. There are many discussions in the transplant group, and I invite you to jump in anytime.
This particular "This and That" discussion, is kind of a free flowing conversation. So pour yourself a cup of tea, and join us. .
Are you a transplant recipient? Can you tell us a little bit about yourself?
Rosemary

@amynewheart, Amy, I am extremely pleased to meet you. I always feel it is an honor to meet another transplant recipient 🙂
Rosemary

@amynewheart How wonderful that you received a new heart almost 2 years ago now. How are you doing? Teresa

Yes i received my new heart on 07/2015. I was diagnosed at age 26 with dialated cardiomyopathy. It is a pleasure to meet you.

Last couplemonths have been rough. Have been hospitalized three times for rejection 🙁 Had a biopsy this week and it came back as a grade 2, doctors made no changes to meds and i will have repeat biopsy in August