Our PKD Surprise Journey: PKD Settles In For a Stay

We sat together in a cold doctor's office (why are they always cold?), waiting for the doctor to come in and give us the test results from the Ultrasound. We were fearing the news of PKD since during Michael's ultrasound the technician asked him if he had a history of PKD in his family. Its funny how technician's are able to ask us these heart stopping questions but yet when we ask them a question they say that are not allowed to diagnose or share what they see. The doctor came in and started rambling on about some research drugs he thought Michael would benefit from. He confirmed Michael had decreased kidney function but he felt that he could bring most of it back with these new drugs. What a relief! The stress and weight on my shoulders lifted but the knot in my stomach was still there. We were given information on these new drugs and were almost on our way out when Michael asked the doctor about the ultrasound results. The doctor started flipping through the file and stated that he had not yet received it but would check with the front desk. We waited, again. Time was so still, so quiet except for the pounding of my heart. I have been here before, a long time ago. Sitting in a doctor's office, waiting and praying for good news but knowing in my heart that it will be life altering news. As soon as I saw the doctor walk into our exam room I started reading his body language, I couldn't wait any longer. And then it came, slowly but so very audible. He shook his head as he lowered it, pursed his lips and lifted his glasses from his face....all so very clear to me, it was not good news. The life altering words slowly came out of him, "I'm sorry but you have Polycystic Kidney Disease". I felt defeated, completely empty but full of sadness. How and why could this be happening to Michael. I looked at him, he was digesting the news already knowing what PKD was. He was so strong and brave but he too felt the blow that was dealt that day. I think we both tried to be brave for one another and in on our own way gathered this heavy load that was set in front of us and tried our best to manipulate it into something we could manage. The doctor wouldn't give us a timeframe of when we could expect the need for dialysis or a kidney transplant, he was vague which only produced more anxiety for me. What was he hiding? Why didn't he answer our questions? He then suggested we have a dietician come to our home, Michael's diet would have to be changed into a kidney friendly diet. There was a lot of quietness that day as we both absorbed all the information that was given to us.

Today Michael and his brother Joe started on their Neupogen shots, this will aid in the collection of stem cells for the stem cell transplant. Neupogen works by stimulating the production of a certain type of white blood cell called neutrophils. These specially processed stem cells that will come from Joe will help establish a “hybrid” immune system in Michael that will allow Michael's body to recognize the donated kidney as its own. This will eventually eliminate the need for immunosuppressive drugs. Cool, right? After Neupogen does it's job both Michael and Joe will have a central line put in an artery in their necks, they will be hooked to a machine that will collect the stem-cells. (Michael's stem-cells are also collected just incase his body rejects Joe's stem-cells and the need arises to transplant Michael's own cells back into him.) The bone marrow cells that are collected from Joe will be sent to University of Louisville to be processed and to bring out the "facilitating cells", these are the cells that researchers believe that help the transplants succeed.

This Neupogen bottle is worth $1000. Both Michael and Joe inject 4 bottles per day EACH for the next 4 days. That's $8,000 per day!