Severe Aplastic Anemia and PNH Diagnoses Came out of Nowhere - Marianna's Story | Aplastic Anemia & MDS International Foundation

Severe Aplastic Anemia and PNH Diagnoses Came out of Nowhere - Marianna's Story

As a typical community college student, Mariana was busy. Classes, studying, day trips, all were part of her life. Yet during one shower, she dropped to the floor, suddenly dizzy. A few weeks later she would be out of breath, with unusual bruises on her skin.

At the end of the semester, she fainted in the grocery store while on vacation. Her parents dropped everything to drive the miles in a hurry, returning to an appointment with her family physician. Not yet diagnosed, she went to the first class of the new semester as usual, going to lunch and shopping with friends. The nap afterward was interrupted by a call from her doctor, who instructed her to go to the hospital immediately!

From the Emergency Department, Marianna was admitted to the ICU for her first of 5 blood transfusions. Before she was released, she had a bone marrow biopsy, returning home to wait for the results. She had her birthday while waiting.

On February 5 she saw the doctor, who was very kind as she explained both Severe Aplastic Anemia and Paroxysmal Nocturnal Hemoglobinuria. In the upcoming weeks, she would have many blood transfusions, B12 injections, and blood draws while they searched for a transplant match.

Even though she had multiple 10/10 matches, her wait grew longer as the COVID-19 pandemic hit, filling hospitals and delaying her treatment. She was too exhausted to do much more than stay in bed as she waited. Finally, in May, she was selected as one of the first to be admitted to the freshly reopened unit.

Day 1 of her transplant preparation was surgery for a trifusion catheter and receiving fluids. Day 2 included chemotherapy, and Day 3 focused on methotrexate. Marianna was so happy that her mom, a nurse, was allowed stay with her during this time, living with her on the unit. Her mom kept her spirits up as she spent the next days with nausea and fatigue. Finally, the day of her transplant came: May 28. She enjoyed her favorite cupcakes, and the room was filled with decorations. A priest blessed the bag of life-giving cells by phone she received them.

After the transplant, she only experienced mild GVHD (Graft vs. Host Disease) symptoms with some allergies, skin issues, and taste buds. She was fatigued as well, and had some fevers, but when she had a few days without fever, she went home, after only three weeks!

During the summer, Marianna had a few short hospitalizations. One was for treatment for Post-Transplant Lymphoproliferative disorders and mild lymphoma. At 100 days, she showed 99% engraftment. No trace remained of aplastic anemia or PNH!

Although it seemed like a slow recovery to Marianna, she now “feels like herself!” She says she can almost forget this ever happened.
What advice does Marianna share with others? First, she says, “Don’t be afraid to ask for help from everyone!” She says it might be difficult or embarrassing, but all the help you receive will lead to recovery.

She also reminds other patients not to feel guilty about things like food or exercise. Sometimes, she says, you need to do what you can to feel better, so be kind to yourself.

And “Give yourself time,” is her last word for patients. Your recovery will come in the time that you need.

Finally, Marianna shares this bit of wisdom, “If you feel like something is not OK, then have it checked out!”

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Stay tuned here for updates on Marianna’s evolving story!