At 8:40am Joe and Heather took a cab with us to Northwestern Memorial Transplant Clinic for post-op visits and labs. The 10 minute trip to the hospital, 19th floor elevator ride and walking into the clinic took a toll on Michael's energy level. We checked in with the clinic front desk while Michael walked straight to a seat in the back of the crowded waiting room where there were several empty chairs. He sat back and leaned his head back, closed his eyes to rest. As he began to catch his breath, he heard a gentle voice say "I'm sorry, I don't want to bother you but I see you are wearing a mask. Are you in the Dr. Leventhal study?". It was a question that perked Michael right up, how would another patient know unless maybe they were a previous patient. By the time we had checked in and walked to the back of the waiting room, Michael had met PATIENT #8, Lindsay! She had been in the study 1.5 years ago. She was the picture of perfect health. Radiant, happy and glowing with joy. She was also born with PKD and her mom had passed on because of this damaging disease. Lindsay's kidneys were so large (each the size of a football) that it required to have them surgically removed before she was able to receive a donor kidney. The bilateral nephrectomy surgery was a difficult one, considered to be riskier than a transplant due to potential complications on account of infections. After healing from her bilateral nephrectomy, Lindsay underwent the research study that Michael is now in the process of. She is completely off all immuno-suppresents and is currently only taking one pill a day to avoid infections. Amazing, right? Lindsey had wonderful things to share about the study as well as Dr. Leventhal and his staff. The reason she was there today was to get re-immunized. After a Stem Cell Transplant the patient is likely to lose some or all of the natural, or man-made disease immunities they used to have. Quite simply this is because the high dose chemotherapy killed off many or all of the antibody producing cells that provide immunity. What are the chances of meeting two study patients in 2 days? Coincidence? I personally don't believe that, there is a purpose for everything that happens between heaven and earth. We hope to stay in touch with Lindsay and share this journey with her, Larry and others in this study as we find one another. Michael was called into the clinic and brought back to be put on a fluid IV as well as to receive a Neupogen shot. While on fluids, Irma and Dr. Leventhal came by to check up on him. Dr. Leventhal took a look at Michael's incision stating it looked good and that he expected Michael's blood count to be even lower today. He was right, the labs showed that Michael's white blood count was now at .1 and his platelets were 66,000 (normal range is 150,000-350,000) creating a risk of bleeding since the principal function of platelets is to prevent bleeding. We saw evidence of this when the nurse removed the IV and it took a while to stop bleeding. While there, Michael was met by another Pharmacist who quizzed him on his medications and went over each one carefully. They expect him to take full responsibility for his medications, not only is he to learn the name of each pill but also the dosage, color/look, how many to take and how many times per day. He did fairly well since I had started quizzing him myself Monday night, we felt that it was crucial that he recognize his medications. We also took pictures of each of his medicine bottles showing full detail of each label and created a file on his iPhone specifically for them. An A.M. and P.M. alarm was set up on his iPhone to remind him it was time to take his medications. We saved the 24hour/365day Transplant Hotline number on both of our phones. I'm sure there will be many more things to remember, learn and make notes of as we move through this process and experience more. Joe was released today from the doctor's care and allowed to fly back home to Canada tomorrow afternoon. His appointment went well and Joe is bouncing back quickly. Today, Heather and Joe went Christmas shopping and walked around the downtown area. I ran into them in the lobby of our hotel and he looked really good after an afternoon of walking around and shopping. Its amazing how rapidly he is healing.
Lindsay - Patient #8.
Michael and Lindsay at the clinic.
Dr. Leventhal examining Michael.
Joe and Heather visiting the Aquarium.
Post Transplant day 6. You are not alone, and we are truly finding out that we are not either in so many ways!
God's blessings, Lilly :)
We feel it a privilege to be with our boys as they walk through their journey with PKD. Their wives have been by their sides and we have shared many precious moments as a family. We are thrilled Joe and Heather were able to return home to their family and look forward to the day when Michael will be going home as well.
ReplyDeleteLove, Mum & Dad