Our PKD Surprise Journey: Gaining Ground on PKD

According to the article Michael had read concerning the Chicago research study, they were still accepting patients. There was a link to an email address for the transplant coordinator (Laura Coleman), Michael immediately emailed her his background information regarding his kidney disease and his desire to be part of the study. Laura emailed Michael within a few days requesting additional information to determine if he would be a good candidate. After this was confirmed, Michael was given a new contact, Irma Dixler, BSN, RN. She worked directly with Dr. Leventhal in the research study, she would now be Michael's main contact going forward. In April 2011, Irma asked that Michael email her his medical records, including doctor's notes, labs and diagnostic testing. After this was received we were contacted and asked if Michael could fly to Chicago for an appointment on May 6, 2011 to attend a Kidney Transplant Orientation & Evaluation. When that day came around, Michael was a bit disappointed considering he wasn't given an opportunity to meet Dr. Leventhal and simply had a brief meeting with Irma. The Orientation & Evaluation turned out to be a generic meeting for all kidney transplant patients and was not aimed for those in the research study. He was asked to fill out a Health Questionnaire, provide proof of health insurance and provide another copy of his medical records. Michael's specific questions concerning the study, procedures, eligibility and availability would have to be postponed. Now he had to wait as his records were reviewed, he worked on being patient as he anticipated what the next step would be.

Link to this study:

http://www.clinicaltrials.gov/ct2/show/NCT00497926?term=kidney+transplant+stem+cells&rank=9

Michael, Irma and Joe today during their recipient/donor consultation.

Joe had his port removed this morning. He said it wasn't painful and it was quick, just the way it should be! Along with that, they had their recipient and donor consultations, more blood work and an EKG. During the consultation, they were informed on what to expect before, during and after the surgery. The procedure was explained to both of them and they were given an 8am surgery time on December 1st. While waiting for their consultation, Michael and Joe met another PKD patient who was also there to get a transplant. Sitting by her were her father as well as her sister, who was going to be her donor. She shared that her kidney function was at 18%. She described some of her PKD history that included high blood pressure, flank pain, nausea and fatigue. Along with this, she had one of her PKD kidney's removed due its large size and excruciating pain. When the kidney was removed, it measured 18 inches in length, the biggest her surgeon had seen! Michael felt awful sharing that he felt completely fine and normal. His kidney function is at 11% and he has his blood pressure under control with medication, besides a cyst bursting a few years back, he has never experienced an ache, low energy or has he ever felt "ill". Thank God, right?

Freedom for Joe from that apparatus called a "port".

PKD Kidney's removed from an unknown patient.

Michael relaxing and being a happy boy.

This evening Matt and his wife Sasha came to have dinner with Michael and Joe. Michael has been friends with Matt's parents, Tim and Karen, for over twenty years. Michael has always been Uncle Mike to Matt and Matt has always been Matt Man to Michael. So cute, right? Matt came to the United States from Canada to attend college in Bethel, Indiana. He is a wonderful young man with a huge heart, especially for the poor and abused children of Africa. Matt and Sasha are newly weds, married this past September and I can't wait to meet her! The "crew" is getting larger by the day! YAY!

Andrew, Brandan, Joe, Michael, Sasha and Matt!