Give for Texans – Amber’s Story

Transfusions sustain the trek to an unexpected diagnosis

Amber Schlaht’s journey through some of the most difficult moments of her life began shortly after one of her happiest.

Six months after she and her husband Ben married, Amber was diagnosed with Crohn’s disease, an inflammatory illness that affects the lining of the digestive tract and can lead to life-threatening complications.

After rounds of immune-suppressing medications, Amber was told by her doctors that surgery was required because of extensive scarring from the disease. She then had 18 inches of small intestine, several inches of large intestine, and her appendix removed.

Several months later, Amber began experiencing nosebleeds, vomiting and extreme migraines. A trip to a nearby emergency room revealed Amber was having liver and kidney failure, and her blood counts were very low.

“I was immediately admitted to the hospital and I literally was unconscious for a week,” she recalled. “During this time, they ran every test they could think to run on me. The following Thursday, they drained the outside of my left lung, and did a kidney biopsy and a bone marrow biopsy. I had about six or seven blood transfusions during that week.”

Soon after, Amber’s “world went into a tail spin.”

When her kidney biopsy came back with clots, she was given a tentative diagnosis of Thrombotic Thrombocytopenic Purpura (TTP), a dangerous disorder that causes blood clots to form in small blood vessels throughout the body.

Lab results to confirm the preliminary TTP diagnosis took three weeks. During that time, Amber began plasmapheresis, an automated process to remove the plasma from her blood and replace it with donated plasma.

“This process normally took about 4-5 hours, and I would get 25 to 30 bags a day of donor plasma for five days,” she said.

Tests for TTP came back negative. Eventually, hematologists concluded Amber had atypical Hemolytic Uremic Syndrome (aHUS), a rare genetic disease that causes abnormal blood clots, primarily in the kidneys.

“I agreed to do genetic testing that day, got all the required vaccinations for treatment of aHUS, and got a power port installed in my chest,” she said. “There are currently two treatments available for aHUS. I am receiving IV infusions of Ultomiris every eight weeks and will require this drug for the rest of my life.”

Now an advocate for the aHUS Foundation, Amber continues to actively share and support the importance of consistently donating blood, plasma and platelets.

“I can honestly tell you I am here and alive today because of the generosity of people that donate,” she said. “The blood transfusions and plasmapheresis that I received during that very critical time saved my life.”

You can make a lifesaving difference by donating blood, platelets or plasma. Please make an appointment by calling Carter BloodCare at 800-366-2834 today.

Your experience as a donor or recipient can save lives by motivating others to donate. To share your story, please visit our Tell Us Your Story webpage.