In my continuing effort to be as prepared as possible for this crazy adventure, I spoke to someone who knows exactly what I’m going through, because she did the same thing for her husband! When we first started this process, my nurse mentioned that if I wanted to talk to another live donor she could make that happen. I put the conversation off for a while, but then after a friend had me talk to her friend that donated a kidney on behalf of her husband, I realized talking to someone who has been through what I’m about to go through would be very helpful.
While her situation is a bit different than ours–she and her husband are a little older than Derek and I, he had a different kind of liver disease–so much of what she shared was a lot like what Derek and I are going through. She and her husband do not have children, she is very competitive, and as soon as the option of live donation was offered up, she knew she wanted to be the donor. She was very honest, and gave real insight into what it might be like for me. It’s hard to tell a person what major abdominal surgery will be like because we all heal and handle surgery a bit differently, but she confirmed a lot of my positive assumptions, and assuaged a lot of my fears.
Their surgeries were on a Monday and she was home by Friday, with her husband home a day or two later. She mentioned that the biggest help was having someone bringing them dinner for the first month. A friend set up a calendar, and people signed up to make sure they had a low sodium, nutritious meal every night. She said it was the highlight of the day, sitting down at the table with her husband to have dinner. I’ve been making and freezing meals the past couple of weeks, but I know we will need help from everyone willing to get us to eat enough!
While we were talking, I kept thinking, this is so amazing! She understands everything I’m going through, I understand everything she went through and we just met! She mentioned that going through this with her husband was almost a gift, the only thing she could think of as an analogy was if they both climbed a mountain together. It affected them differently, but they were both working towards the same goal. Every time she answers the survey that Lahey sends periodically, she checks the box ‘yes definitely’ when asked if she would be a live donor again.
I’m so relieved that I was able to talk to her, it helped so much. I emailed my nurse right after and said I couldn’t wait to return the favor to someone else, to talk to a potential live donor about our experience. She emailed me back and said, “Patients mentoring other patients is so valuable. There is no one better to discuss a situation than someone who has lived it.” I couldn’t agree more.