Benton Berman has a most unusual story which has resulted in his need for a stem cell (bone marrow) transplant on Thursday, March 21, 2019.
In August 2017, Benton became short of breath and a medical evaluation determined that he had multiple large blood clots in his lungs (pulmonary emboli or PE). Over time, these blood clots in his lung did not decrease in size and his shortness of breath increased. His condition was life-threatening. In February 2018, under the direction of Dr. Bartley Griffith at the University of Maryland Medical Center, Benton underwent a major operation (pulmonary thromboendarterectomy). During that operation, he was placed on a heart-lung bypass machine, his major lung blood vessels were surgically opened and the large blood clots were extracted. Benton became a medical celebrity as you can see from this University of Maryland Center article:
https://www.umms.org/ummc/health-services/heart-vascular/services/pulmonary-hypertension/patient-stories/benton-bermanAs Benton stated in the above University of Maryland article written after his surgery and recuperation period - "I was cured". However, an extensive medical workup from August 2017 to February 2018 failed to reveal a cause as to why Benton produced these large blood clots in his lungs.
Benton's unusual medical saga was to continue. Routine blood work in July 2018 showed a significant elevation in his white blood cell count. Since the blood cells are created in the bone marrow, a bone marrow biopsy was performed in August 2018 to investigate. The bone marrow biopsy demonstrated that Benton had primary myelofibrosis, a form of chronic leukemia.
In short, primary myelofibrosis leads to scarring of the bone marrow. The scarring injures the bone marrow which leads to a problem with blood cell formation. The result over time is severe anemia, weakness and fatigue. Some patients can go on to develop a form of acute leukemia. The cause of primary myelofibrosis is unknown and the only known cure is a bone marrow transplant. A two-part article written by the Mayo Clinic staff provides a more complete explanation of primary myelofibrosis:
https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057https://www.mayoclinic.org/diseases-conditions/myelofibrosis/diagnosis-treatment/drc-20355062There was no evidence to suggest a diagnosis of primary myelofibrosis when Benton first presented with the blood clots in his lungs one year prior to his bone marrow diagnosis. However, it is known that primary myelofibrosis of the bone marrow can predispose a patient to the formation of blood clots and can be a very rare cause of blood clots in the lung (PE).
That brings us up-to-date. On Thursday, March 21, 2019, Benton will undergo a stem cell (bone marrow) transplant from a suitable donor. Prior to that stem cell transplant, he will undergo high doses of chemotherapy and radiation therapy to destroy his diseased bone marrow. After the transplant, Benton will be hospitalized at the University of Maryland Medical Center (Allogeneic Transplant Unit on the 9th floor of the Gudelsky building) for a few weeks as he will be susceptible to a number of conditions, including infection. Benton would welcome visitors when he is up to it (Benton's cell (410) 303-4900; Terry's cell (443) 934-1409).
After his hospitalization, Benton will require weeks of recuperation in his home (19 Tanner Court, Pikesville, MD 21208). Once again, visitors will be welcome (please call ahead).
Benton has remained strong and courageous throughout this journey.
The address for Benton's Caring Bridge website is:
https://www.caringbridge.org/visit/bentonbermanWe hope that you will write notes of encouragement, support, memories, friendship, etc. using this website which can be seen by all. In addition, we would appreciate it if you would forward this website address to other family members and friends of Benton. This will allow all of us to play a role in Benton's path to a complete cure.
With love,
Terry Davis, Barb Siegel and Howard Siegel
