On Wednesday we returned to our safety net, the Duke post transplant group. Aaron is being monitored by many people but first & foremost are the nephrology group at Duke. Our main contact group however are the post transplant coordinators and they are wonderful. After 2 1/2 years of talking with Erynn (coordinator) on the phone we finally put a name & face together in clinic and she was even more caring & personable than on the phone if that is possible. To know that this group of transplant RN's is within contact 24/7 is a comforting thought. They encourage us to call about anything going on particularly since this is a new experience for both of us. We have nothing to gauge these symptoms with now having a new kidney & pancreas. Something may be totally normal and expected or it could be a life threatening problem or a risk of losing an organ.
Aaron is trying to do everything they ask him to do and even though he doesn't feel his best due to surgery he is really pushing himself some. He can't drive, can only pick up five pounds, must stay away from crowds, etc. so that limits him to home at this point. He has to like my driving & not be too grumpy about it. He's making great progress and has done well but Duke is particular about their patients & will monitor him very closely for a year or more. At that time it becomes less frequent but we still have that lifeline available.
Clinic went well this week although his Prograf levels were low (main anti-rejection med) and they have increased the amount he takes but they did reduce his prednisone (also anti-rejection) by one pill per day. His pill box absolutely looks like a small pharmacy but soooo worth it. We tease him that his two snacks per day are taking the pills morning & night.
We are also grateful for his caregivers at the VA who have been in contact this week and continue to care for him even from a distance. I think they are all excited for him to have improved health as they have seen him at the worst point of health problems. We give a special thanks to Kanni and Pam who are so reachable and never seem to think a question is too small to ask. They also try to make our lives easier. And thank you Kanni for checking on Aaron at Duke several times with your busy schedule. Also we thank our special VA doctors who have continued to follow Aaron's progress at Duke. All Aaron's doctors (Duke & VA) have been the epitome of caregivers with the emphasis on "care". A special thanks also to his surgeon, Dr. Collins, for the special "extra" care you provided. We cannot say enough about how you cared for us both. You will certainly have a special place in our hearts always. We now have labs scheduled in Hickory this week and of course wintry mix is in the forecast. Then we will return to Durham the following week so I can't wait to see the forecast for that week. Remind me next summer to not complain about the heat.
Until then....
Barbara
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