A Life with ITP

Below is the story of my mom. The name has been abbreviated for privacy but I hope it might help anyone who has ITP.

“Doctor, come quick!”

V.O. woke to the sounds of activity surrounding her hospital bed where she slept after falling from a ladder and crushing her kneecap. Through the blurred vision of sedation, she heard panic in their voices. Pints of drawn blood later, V. realized that viruses alone did not trigger her quiet but deadly disease of ITP (short for Idiopathic Thrombocytopenic Purpura).

ITP is an autoimmune disease that targets the platelets and results in dangerous sudden decreases in the body’s platelet count which can lead to both uncontrollable hemorrhaging and bleeding under the skin. A normal individual stays around the 200,000-400,000 level of platelets. Going in and out of remission, V. lived with an average level of 150,000 for many years. At the time of her accident, the levels dropped to a dangerous low keeping her blood from clotting. A blood transfusion was necessary to stabilize her condition.

V. was born in a hospital in Newport News, Virginia in 1943, a time when America was still fighting World War II and service men were far from home. With a touch of whimsy and solid sense of right and wrong, V. added the “e” to her own name early in life.

The family moved back home to Charlotte, N.C. after her father finished working in the naval shipyard in 1945. The ongoing international tension left V. with a lingering fear for her survival and a lifelong prayer to live long enough to have three children -- no more, no less. As a child, she was not aware of the rare quiet disease that would plague her.

V. first moved from home to attend Lees-McRae College in the quiet North Carolina mountain town of Banner Elk. A beauty with classic features and style, she claimed the title of Homecoming Queen and left with an associate in arts degree in medical secretarial skills in 1963.

For the next three years, V. interned and worked at Duke University Hospital to become a medical secretary. There, on what might have otherwise been a quiet day, V. stood talking to three doctors near the respiratory department. One doctor, a Japanese man, inquired about the purple dots on her ears. After sending her for immediate testing, the diagnosis was indeed ITP resulting in the purple “dots” or petechiae noticed on V.’s ears.

Had she not been in a medical research facility, it may have been years before anyone diagnosed the increasing nosebleeds and other symptoms believed normal in other patients. V. had her spleen removed while at Duke with the hope and belief that these measures would help her keep her platelets at a normal level. It grew back only to be removed again.

Shortly afterward, V. moved back home to be closer to her large extended family in Charlotte, N.C. V., among many others, learned what it took to live with the disease but it gave more than one scare to the family. Strong in her faith in God, V. prayed for three children with her husband, J., who she married in 1966. One beautiful little girl came first, swollen from the steroids the doctors pumped into V.’s body to keep her blood count high enough to survive the birth. 

The next birth, a mere 17 months later, saw V. laid up in bed rest, with a belly bigger than seemed possible. Due to the risk, it would be the last time V. would be able to have a child, with a hysterectomy scheduled shortly afterwards. The doctor said one would be risky and two would give him all the grey hair he did not already have. Before the birth, V.’s platelets dropped to 7,000 requiring 19 pints of platelets to be administered through her hand. 

V. prayed. In those days, ultrasounds were performed only if twins were definite. The doctor refused to believe her growing belly was anything more than the steroids again and even two heartbeats kept him from changing his mind until that day. 

When moms gave birth at that time, they were put under anesthesia and were unaware of their world until after the baby was born. The doctor delivered a beautiful boy and headed out to wash his hands. 

“Come back . . . there’s another baby in here.”

Out came a little girl, as healthy as the first. V.’s prayer and desire from her childhood came true with this third arrival. When she awoke, tears streamed as nurses carried in the two bundles born prematurely at seven months, weighing approximately six pounds each. 

V. rebounded from the births. For years, frequent occurrences of decreased platelet levels resulted in trips to the doctor for steroids to raise the platelet count to the required amount. Viruses often triggered this disease resulting in limited activity due to fear of cuts, bruises, and accidents that could be fatal to V. 

Living a low-key but steady life, V. praises God for every moment He allows her to live and for the health of her three children and grandchildren who surround her with love.