Our PKD Surprise Journey: Farewell 2011

Today is the last day to a monumental year, complete with challenges, old and new things, good and bad times, blessings, but most importantly a new chance at life. I'll be bringing in a quiet new year in our home in Florida with Jill and her boyfriend Artie, while Michael will be bringing in 2012 in Chicago with his parents. As I take a deep breath and close my eyes, a slow smile spreads across my face as I wish this year good-bye. Thankful for the biggest blessing and gift that Michael could ever receive, a kidney that has not only given him a new sense of hope and a new life but unmeasurable relief and peace. His brother Joe is the one to thank for all this and we will always be immensely grateful. Joe is doing well back home in Canada with his wife Heather and 3 children (Vanessa, Joey and Briar). I hope that when Joe brings in the New Year tonight, he will have a quiet moment of reflection and enjoy a smile as he remembers the irrefutable impact he made not only in his brother's life but in mine and Jill's as well. BIG NEWS this week, Michael had his Chimerism test on Thursday! One small vile of blood was taken from him and sent out by courier to be tested. We will know within 4-5 days whether this clinical trial worked for Michael, and we pray that it did! The idea behind this study is to chimerize the organ donor's immune system with the recipient. A successfully chimerized immune system recognizes both the donor organ as well as the recipient's native tissues as self (its like fooling the immune system into thinking Joe's kidney is Michael's own, pretty sneaky if you ask me!). Creating a harmonious environment where there is no need for immuno-suppresive drugs and also no danger of graft-versus-host disease. Michael's PICC line was removed on Friday and he is no longer needing IV fluids and his blood work is looking great! With chemotherapy and radiation, side-effects happen and one of them is called Neuropathy, which Michael is now tackling. Neuropathy is when there has been damage to the peripheral nerves which send sensory information to the central nervous system. Some of the symptoms Michael is experiencing are inability to sleep, pins and needle sensation on hands/feet, burning feet (so much he had to put wet towels to cool them off last night), skin is extremely sensitive to touch and flu-like body aches. His body is going through a lot of healing, we don't know how long these side-effects will last but we hope that this too shall pass quickly and be a distant memory soon. Michael and I have been in contact with Patient #8, Lindsay, and she has been incredibly supportive and available to answer Michael's questions and provide an empathetic "understanding" of what he is going through. She is brimming with hope and good news and she easily and happily provides that to us. She has been off all immune-suppresive drugs for about a year now and doing great! We are so happy that we "bumped" into her in Dr. Leventhal's waiting room! We also have been emailing patient #14, Larry who had his transplant right before Michael on October 27th. He is home now and recovering, its so wonderful to be able to reach out and support one another. When you are going through this type of clinical trial and you know there have only been 14 before you that have traveled this long and winding road, its difficult not to feel "alone". But its been amazing how we have been able to "accidentally" run into 2 of Dr. Leventhal's patients and stay in contact with them throughout this. Last week, I took it upon myself to contact Patient #2, Rob. We were given his number by Dr. Leventhal's team as a contact person who we could reach out to and ask questions in regards to this clinical trial. Rob was great and easy to talk with and most importantly he was enjoying health. He had the surgery 3 years ago and is currently on no medications. Below is a video of Rob as he shares some of his experience.