Our PKD Surprise Journey: To know the road ahead, ask those who are coming back.

Michael is still recovering slowly. Sometimes, it feels excruciatingly slow. I see them as baby steps in the right direction with a few wobbles and trips. Sleeping and eating, two of the most basic human needs, seem to still elude him. He has had a couple of days where he slept, once for 4 hours straight and another time for 8 hours but last night he was back to pacing from the bedroom to the living room, unable to find rest for his tired body. It has to be maddening, I can't imagine being so exhausted that you plead for sleep and rest and you still can't find it. The doctor has stated that he doesn't know what else to do for his insomnia, so I'm to assume that we are to wait until something in his body starts recognizing the benefit and need of what we take for granted every night when we lay our heads on our pillows, close our eyes and drift to a place where we dream and recover from our day. Michael's appetite is slightly better than what it was before but he still can't eat a whole burger nor a whole sandwich, normally just half. He has been drinking shakes to get extra calories into his body. Right now he needs high fat and high calorie foods, if he is only going to eat a bit, it better be something that will add volume back to his thin body. He is down to 184 pounds, he has now lost 35 pounds since the start of this transplant journey. He has been taking daily walks around our neighborhood to strengthen his body, the days have been gorgeous, pretty much paradise. His Neuropathy is not as difficult as it was previously but he still wants to keep the house at a toasty 81 degrees since his body continues to battle with these cold spells. His blood work is truly fantastic! We are so happy and blessed to know that his kidney is working great, his Creatinine level is holding steady at 1.6. Though Michael is still quite uncomfortable, its an immense relief to hear that things internally are working the way they should! At least something is working, right! Michael's incision finally closed up! Can I get a "Yes"! It closed up rather nicely and his scar is not as long as we initially thought it would be. As we go through this journey, we consider the small group of Patients before us and the small amount of data that is available concerning this cutting-edge kidney transplant protocol. There have been a few "unexpected" symptoms and complications, some that we were ill-prepared for, being unfamiliar with what to expect has made me feel like we have been walking in the dark, by faith and with the help of some brave patients who walked this journey before us. We are truly grateful to these patients who have reached out and opened painful memories that were most likely safely put away. Memories, that I gather they would have rather have kept locked away but true to their courageous spirits, they shared with us their experiences and have reassured Michael that he will once again feel healthy and good. In that hope, we are focused on and in that hope we hold on to tightly.

Mepron ~ Michael's new Antibiotic ~ Monthly cost? $1,557 ~ It looks and taste's like yellow finger paint!