Susan Long: A Rare Heart & Liver Transplant Story

Seeing a friend in person is preferable to a phone conversation or text; but OTS members know that the Zoom meetings held on the first Friday of most months also have advantages!  On November 7, members listened to a Californian, Susan Long, share her unique transplant journey: 

Susan was very athletic when younger, but over the years her liver developed cirrhosis – she was approaching end-stage liver disease.  She learned that she might have only three to six more months to live.  She decided to go to the Mayo Clinic in Phoenix, Arizona.

There she underwent tests – which showed that not only did she need a liver transplant, but her heart was in such poor condition that she needed a heart transplant as well, to support the newly transplanted liver.

This overwhelmed Susan and she said she “kind of gave up.  I was at that lowest point” when she started to lean on her faith.  She felt a sense of calm. Her daughters and pastors visited often in the next weeks.  Then her doctor at Mayo told her that a donor match had been found!  “They had the same blood.  I had RH negative, A negative blood.”

On February 20, 2023, Susan received a liver and a heart from the same donor.  Her surgery was the first time that Mayo transplanted a liver before transplanting the heart.  Her story made TV news in Phoenix, and the transplant doctor explained the rationale:  because the liver had a “sponge” function, it would help fight the antibodies that would threaten the heart.  So the surgeons relied on new “heart in a box” technology to keep the donor heart viable for four hours during the liver transplant operation.  Then the heart transplant was carried out over four more hours.

Susan’s transplant journey continued in the Mayo hospital for two more months before discharge.  She began to work again from home.  Later she progressed to working in her office. But suddenly her health worsened.  Her husband called Mayo in Phoenix, and she was airlifted from California back to the clinic.  This time, painkillers had to be coordinated with her anti-rejection medications.   She had to endure much more pain while the search continued for the problem’s cause. She couldn’t eat, and eventually she weighed less than 100 pounds on her 5’7” frame.

It took two months to diagnose what was happening.  She had been infected by a virus which spread “Valley Fever.”  This is a fungal disease found mostly in the Southwestern states.  It is spread by spores which are carried by the wind, in dirt from farming, construction etc.  Once diagnosed, Susan was given a prescription drug that she will need for the rest of her life.

Although Susan was recovering from valley fever, her kidneys were damaged and she was put onto a kidney transplant list.  She began dialysis and needed insulin.  Fortunately, her kidneys eventually healed to the point that she could leave dialysis, but she remains on the kidney transplant list.

Jim Hills, the host of the Wednesday Zoom transplant support group, shared a bit about his friendship with Susan over three plus years.  He also mentioned that Mayo Clinic in Phoenix now gives a valley fever preventative medicine to ALL transplant patients for at least a year.

OTS wants to thank Susan Long and Jim Hills for sharing this pathbreaking transplant story!

Thanks too to all who listened and gave support.  “No one should go through this alone!”