Patient Stories

“Having a rare condition like veno-occlusive disease really makes you appreciate every milestone, no matter how seemingly small, in the journey to recovery. Returning home to hug my kids after a prolonged stay in the hospital reminded me to cherish every little moment.”

Signs and symptoms of veno-occlusive disease include:

  • Weight gain
  • Hepatomegaly
  • Right upper quadrant pain
  • Elevated serum transaminase
  • Elevated serum transaminase
  • Ascites

Steve and Crystal’s Story

Life Before and After Stem Cell Transplant

 

When Steve began experiencing flu-like symptoms, he and his wife Crystal didn’t think his condition was serious. His primary care physician and urgent care doctors thought he might have mononucleosis or tonsillitis, but Steve and Crystal knew these theories were unlikely since Steve had his tonsils removed as a child. When he realized antibiotics weren’t improving his symptoms, Steve decided to visit the emergency room. Crystal was at an after-school activity when she received a call from Steve to tell her he had leukemia.

A bone marrow biopsy revealed that Steve had a relatively rare blood cancer called acute myeloid leukemia (AML),2 a condition that includes symptoms such as fever, fatigue, night sweats, loss of appetite, weight loss and symptoms of anemia.3 This explained why Steve was feeling feverish and getting tired so quickly.

The couple decided that Steve would start treatment right away and, soon after, his scans were clear of leukemia cells. To decrease the chances of the cancer returning, they decided to pursue a hematopoietic stem cell transplant for Steve. Fortunately, his sister was a match and donated her stem cells.

After receiving successful treatment for his AML and quickly finding that his sister was a match for Steve’s stem cell transplant, Steve and Crystal were feeling optimistic that his health would improve. They were expecting their second child soon and were looking forward to the future. However, a follow-up visit with his doctor revealed cause for concern: abnormalities in his liver, caused by veno-occlusive disease (VOD). Stem cell transplantation is a frequent cause of VOD – a condition in which some of the veins in the liver become blocked, decreasing blood flow and putting the organ at risk for failure.4,5 His liver continued to deteriorate, to the point where his kidneys were starting to fail, too.

Feeling disheartened, the couple leaned on each other and Steve’s parents for support. They had been there with Steve and Crystal through every step of the cancer journey, accompanying them to his appointments, to the hospital and even during treatment discussions.

Steve was feeling extremely fatigued and incoherent as a result of his VOD, so Crystal and his parents discussed his options with his doctor and agreed on a treatment plan.

Fortunately, Steve’s condition started to improve, setting him on a path to recovery. While in the hospital, he was even able to watch Crystal give birth to their son through a livestream on a tablet.

Now in remission, Steve is grateful that his doctors detected his VOD early, which helped him and his family identify an appropriate treatment approach. Crystal feels lucky to have Steve by her side because she knows there was a period of time where his future with their family was not guaranteed. Two years later, the couple is enjoying life with their two young children and are happy to be feeling “normal again.”

U.S. residents can learn more at KnowVOD.com.

1Carreras E. Early complications after HSCT. In: Apperley J, Carreras E, Gluckman E, et al, eds. The EBMT Handbook. 6th ed. Paris, France: European School of Haematology; 2012:176-195.
2SEER Stat Facts: AML. https://seer.cancer.gov/statfacts/html/amyl.html Accessed October 14, 2019.
3American Cancer Society. Signs and Symptoms of Acute Myeloid Leukemia. https://www.cancer.org/cancer/acute-myeloid-leukemia/detection-diagnosis-staging/signs-symptoms.html Accessed October 14, 2019.
4National Cancer Institute. NCI Dictionary of Cancer Terms: Hepatic Veno-Occlusive Disease. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/hepatic-veno-occlusive-disease Accessed October 14, 2019.
5Senzolo, M., Germani, G., Cholongitas, E., Burra, P., & Burroughs, A. K. (2007). Veno occlusive disease: update on clinical management. World journal of gastroenterology, 13(29), 3918–3924. doi:10.3748/wjg.v13.i29.3918.