@bcrandall
Hello! As stated by Colleen you asked some good questions.

I just celebrated my 10 months with a new heart by toasting my donor with a Gatorade.

What do I wish someone had told me (or that I had listened to maybe)? My ejection fraction (EF) was down to 9% prior to the transplant. I had convinced myself that I was doing okay and almost immediately after the transplant I felt absolutely amazing. It was the first time in a long time that I could feel my heart beating or hear blood rushing through your ears. I had gone from a heart barely keeping me alive to one beating at 65% EF. I wanted to get up and slay dragons so my caregiver had the unenviable task of slowing me down. .

Tips for keeping positive: I actually came up with a top ten list of Attitudes and Actions and have listed the attitudes below
1. Ownership. You (the recipient) and you alone are responsible for your recovery. You must be an active participant in your care and not a passive subject. The doctors, nurses, medications, technology, and capability are resources available to you. Ask questions so that you understand what is happening, why it is happening, what your responsibility is; and so on. Be involved in packing your pills for the week, laying them out daily and reciting what you are taking using the formal and informal names, how much, and why. Take charge!
2. Trust. Trust those around you particularly your caregiver and medical team but do not abdicate your responsibility for your recovery. See #1. Be confident in their competence. Communicate your physical and emotional state regularly so that those who are there to assist you can bring their expertise. You do not want them guessing at your condition. Blood tests and X-rays are only part of the equation. Ask your team “why” often. It will fuel your confidence in the prescribed course of action. When you have a “why” you can handle any “what”.
3. Gratitude. Express gratitude to everyone. You cannot return the gift of your donor, but you can pay it forward. You are here to help others. While you are responsible for your care, you must not become self-centered. Get outside of yourself and focus a little energy on others. Contact all the people that prayed, contacted, or called you prior to your surgery and have a heartfelt conversation with them. Tell them, thank you.
4. Choice. No matter how you feel today, how poorly you slept the night before, each day is a good day. Some days are just better than others. You no longer have your previous heart (and lung) condition. All of that is gone. You have a new heart (and lung and it is your heart (and lung). Refer to them as such. It is not the donor’s heart and lung. It is your heart and lung. I like to say, “It was not my heart, but it is now, and I am giving it the best home I can.”
5.No whining. Emotion is a very real issue but there is a huge difference between crying about a lack of progress and doing something about a lack of progress. Some people value the group sessions to get “it” off their chest. Others find time with the Cardiac Team Psychiatrist valuable as you learn more about yourself. In any case, this is an emotional roller coaster. Do not avoid it. Ride it so that you understand what and why you are feeling the way you do. In the end realize that however you are feeling, you can choose to feel and act differently.

There will be lots of slight physical challenges driven by medications, simple recovery, and so on. My attitude toward them is I am alive to complain about them. The alternative is much worse

What are some things you did that helped make sense of all the information?.
Treatment at Mayo is far different from any other organization at which I have had medical care. If you come prepared with good questions, the medical team will engage you in discussion. I go over my labs and ping the team with questions. When I am directed to to change a prescription dosage I ask (and now my team is used to it) what led you to make this judgement and what can I expect? In short, ask ask ask and at Mayo you will receive.

A caution on the Connect.Mayo site: Some people ask questions like "I am thinking of stopping my tacrolimus, what does the group think?" Come to us for emotional support. Go to your medical team for professional medical advice.

Good luck (oh, and my wife is still having a devil of a time holding me back.)
Best always,
s!