Tuesday, November 15, 2011

PKD There is Hope

For months I saw Michael on his laptop researching, making calls and studying how our country as well as other countries were handling this disease .  One afternoon he came across a site that made him stop in his tracks.  "TOLERANCE the breakthrough to organ transplant."  A transplant tolerance protocol that had been started in India in 1998 with small doses of pre-transplantation donor-specific transfusions. By 2010, they had more than 1500 kidney transplant recipients transplanted under continuously improving transplantation induction protocol. Doctors in India were transplanting donor stem cells along with the kidney to create this "twin" system of donor and recipient. The new system would recognize the kidney as its own!  Now this was exciting but I wasn't too sure about Michael going to India to have this procedure done.  There was so much to think about and I honestly did not like the idea of Michael being operated outside our country, what if something major happened?  How would it be handled? What were the risks? Would our health insurance even cover it? Would his brother agree to fly across the world and put his life on hold for 3 months and go through a risky procedure in another country? My brain exhausted itself. Michael, on the other hand was excited and wanted more information. Michael had several email conversations with the hospital in India and was seriously considering this route.  He also spoke to a doctor in New York, Dr. Mark Hardy. He had an impressive list of credentials and Michael was determined to talk to him. During Michael's research, he found Dr. Hardy's cell number! A direct life link to the doctor who so highly addressed the transplant tolerance protocol that was happening in India and who himself had interest in the transplant tolerance induction. Michael got a hold of Dr. Hardy on his first try!  They spoke for a while and the doctor agreed that he liked what was going on with transplants in India but he wasn't sure if it was ready for prime time. After Michael's conversation with this doctor, he was determined to find out exactly what transplant tolerance was and who else was doing it. India could not be the only place doing this remarkable life altering transplant!


After four days of Neupogen shots, both Michael and Joe are feeling their side effects.  Bone and muscle aches and a general "flu-like" ache are the most common side effects while on Neupogen. Michael and Joe are managing the side effects mostly with Tylenol. Today was their last day on Neupogen but the side effects have peaked and the pain is uncomfortable. Hopefully they will have relief soon since that part of the study has been completed. The next step? Stem Harvesting which was done this afternoon. Stem cells are formed at the marrow and are common blood cells from which other specialized blood cells, like immune cells, develop. By transplanting stem cells from the kidney donor into the recipient, researchers hope to prove that the cells will mature in the recipient's body and work to prevent rejection of the new organ, allowing the immune system to accept the organ as its own. The stem cells are collected from the kidney donor using a process called Apheresis. This process involves passing your blood through a special machine that strips the stem cells from the blood, and then returns the blood into the body. The procedure took about 4.5 hours and 21 liters of blood was filtered! Both Michael and Joe had tingling in their lips, arms and hands during the procedure which is common.  They were given calcium and magnesium tablets to counter-act this reaction. The brothers are resting comfortably in their hotel room tonight.  Tomorrow is their "rest day" to do whatever they want in Chicago, I believed they earned it!  Don't you?


Michael's Labs going in - 11% Kidney Function and STILL feeling FINE!

The Apheresis Machine.




Joe during the harvesting of his stem cells.


If you ever wondered what stem cells looked like......


"Dr. Mike will see you now" (lol)


16 days to transplant.  We sincerely hope that those who find this blog and are fighting this same fight will find relief, answers and companionship.  You are not alone, and neither are we.


God's Blessings.  Lilly :)

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