Michael and Sharon Shipley My Story and Yours Michael and Sharon Shipley Recipient/Donor Husband and Wife

Mike’s Family History 1945 – Captain Thomas Hickey USAF(my father), towards the end of WWII. Died in 1961 from Polycystic Kidney Disease (PKD) at the age of 41. I was 5 years old at the time.

Mike’s Family History 1956 – Left to Right: Elizabeth (Betty), Michael (being held), Robert, Thomas & Nancy. My father, Thomas was the photographer.

Mike’s Family and Polycystic Kidney Disease (PKD) Thomas Sr. – Died 1961 of PKD Thomas Jr. – 1998, Robert (brother) donated kidney, Good Samaritan Hospital, Phoenix, AZ Nancy – 2003, Deceased donor kidney, Univ. of WI, Madison Michael – 2005, Sharon (wife) donated kidney, Univ. of IL, Chicago

Mike’s Siblings, Their Families and Kidney Disease Nancy 2 children positive, 1 child not tested Thomas Adopted two children Robert Child born with 1 kidney Michael 1 child positive, 1 child negative

What is Polycystic Kidney Disease (PKD)? PKD is a genetic disease (passed from an affected parent to their child) causing uncontrolled growth of cysts in the kidney. A normal kidney is the size of a human fist and weighs about a third of a pound. Once a person has PKD, they have a 50 percent chance of passing it on to each of their children. Also known as Autosomal Dominant Polycystic Kidney Disease (ADPKD).

What is Polycystic Kidney Disease? (continued) Affects approximately 600,000 people in the US PKD is the number 4 cause of kidney failure in Americans Found in all races and occurs equally in men and women Imaging tests such as ultrasound can be used to screen for PKD

PKD Kidney as Compared to a Normal Kidney (kidneyfund.org) http://www.kidneyfund.org

Size Comparison of Football to PKD Kidney (kidneyfund.org) http://www.kidneyfund.org

Common Symptoms of PKD Kidney cysts Enlarged kidney(s) Liver cysts Hypertension (high blood pressure) Back and/or side (flank) pain Blood in the urine Frequent urinary tract infections Kidney stones Kidney failure

The Future of PKD Tolvaptan To date, there is no cure for PKD Approved for use in Japan, Canada and Western Europe In the US, the Reprise Trial, may slow the progression of kidney disease in PKD US FDA requested the Reprise Trial with expected completion in late 2017 To date, there is no cure for PKD

Mike’s Story Pre Transplant

What Are The Options For Patients With Kidney Disease? Dialysis Hemo Paritoneal Transplantation Living Donor Kidney Deceased Donor Kidney Average Longevity 5 to 10 years 12 to 20 years 8 to 12 years

Our Family

What Is The Transplant Wait List? United Network For Organ Sharing (UNOS) UNOS manages the list of all people across the U.S. waiting for an organ transplant. UNOS ensures deceased donor organs are distributed fairly using a transparent system.

What Is The Transplant Wait List? (Continued) Kidneys Blood type and antibody matching Time with kidney failure Priorities Being a child Past live kidney donor Wait Time Not on dialysis Have a GFR of 20 or less

Average Wait Time For A Kidney Transplant Nationwide 3 to 5 years Factors that determine how long you wait How well you match with the available kidney. Your blood group and if you are sensitized with high antibody levels (from prior failed transplants, blood transfusions, and/or pregnancies). How many donors are available in your local area.

Sharon’s Story Pre Transplant

Chosing a Transplant Center Things To Consider Insurance coverage and cost Location for ease of going to/from the transplant center Living donor donations Participates in a “kidney paired exchange program” (not available in 2005) Wait time for a kidney transplant Each center has their own criteria for accepting patients for transplant Support group availability

University of Illinois Hospital & Health Sciences System

Sharon’s Story Transplant July 12, 2005

Da Vinci Robotic System

Mike’s Story Transplant July 12, 2005

UIC Hospital Kidney Transplant

UIC Hospital Kidney Transplant

UIC Hospital Kidney Transplant

UIC Hospital Kidney Transplant

UIC Hospital Kidney Transplant

UIC Hospital Kidney Transplant

UIC Transplant Picnic

UIC Transplant Picnic

UIC Transplant Picnic

Sharon Closing Comments

Benefits of Living Donation Having a living donor eliminates the recipient’s need for placement or shortens their time on the kidney transplant waiting list The survival rates are significantly better The recipient knows the donor’s lifestyle/medical history (and after 25 years Mike should of known mine) The living donor’s kidney almost always starts functioning immediately The recipient has time to plan for the surgery

Benefits of Living Donation (continued) The recipient may have a chance to avoid dialysis The surgery can be scheduled at a mutually agreed time The most important aspect of a living donation is the psychological benefit. The recipient can experience positive feelings that the gift came from a loved one or a caring stranger. In turn, the donor experiences satisfaction of knowing they have contributed to the improved health of the recipient.

Transplantation Statistics Currently 116,649 people in the U.S. waiting for transplants Transplants by organ type (1/1/88 – 7/31/17), Kidney 59 %, Liver 21.6 % As of 9/6/17, Illinois has 4,400 people on the kidney wait list

Finding A Living Donor Family Relatives Friends Co-workers Strangers Advertise, including social media

Finding A Living Donor (Continued)

PKD Walk