I hesitate to reply to actsoflight because I am a liver transplant recipient, not heart. I am over 2 years out from the transplant surgery now and doing well, thankful for every day of life that I've been given by the miracle that happened to me at Mayo Jacksonville. I've now had time to reflect on the caregiver's role and importance and that may be of value to anyone trying to plan for transplant, even though requirements may vary from institution to institution. First of all, a caregiver who can be present from the instant of the operation until the patient can return to independent living is so desirable. While it might be possible to cobble together a network of caregivers who can rotate in and out, I think one individual who is able to commit to a long period of dedicated service is the ideal situation. In my case, I live 5 hours away from Mayo in Jacksonville and I had a dear friend who was willing and able to hop in the car on a moment's notice and drive with me to JAX when I got notice that they had a liver for me. She wasn't my primary caregiver; that was my daughter who lives in Philadelphia who had arranged leave with her employer to be able to be my primary caregiver; she had come with me for a number of the preoperative visits to Mayo and was familiar with the transplant team and the physical layout of the facility and Jacksonville. She flew in when I was on the operating table and was there when I got back to the room on the Transplant unit. She stayed with me from that time, November 15th, throughout the postoperative observation period, returned with me to my home after my release, and went home the first week of January, so approximately 7 weeks. I had several very good friends who were able to assume the role of secondary caregivers, who would have stepped in and substituted for my daughter had the need arrived.

On reflection about arranging for a caregiver, there are a number of qualities and requirements which will make everything go smoother if present. The first is the willingness to assume such a critical role and the ability to take a substantial amount of time off from normal life. I might mention that while four weeks may be the average amount of time from transplant to return to home, there is no guarantee that it will be that short. Complications do happen and they can significantly extend the time needed to be spent near the hospital post surgery. Plans must be flexible.

Another thing to consider is the personality and abilities of the caregiver. It helps to have someone who is naturally compassionate, a person who would make a good nurse, who is attuned to the patient and sympathetic. In truth, it should be someone who loves the patient. Another quality which is invaluable is a detail-oriented and organized mind. My daughter is a natural organizer and note taker. I cannot tell you how much this helped my recovery because there is a role reversal that happens between patient and caregiver and the caregiver is "in charge" for a period of the postoperative time when the patient may be "fuzzy" at best.

The other point which occurred to me is that postoperative housing near transplant centers often includes endowed care houses and NPO facilities where the patient and caregiver may stay pre- and postoperatively for reasonable sums of money and enjoy great comfort and camaraderie with other patients in the same boat. Gabriel House in Jacksonville is just such a marvelous place. I would venture to guess that there is such a facility near UAB in Birmingham. Do the research because these facilities are worth gold in more ways than just money.