By Sara Bondell - November 13, 2023
Naomi Burgess needed blood. That’s what doctor after doctor was telling her.
Her bone marrow was so packed with cancer that the disease was spilling into her blood, leaving no room for healthy blood production. Her hemoglobin, a protein in red blood cells that carries oxygen, was dropping dangerously below normal levels.
A blood transfusion would bump her hemoglobin back up. It would prevent a stroke or heart attack. Blood would save her life.
Burgess told doctors under no circumstances would she be accepting a blood transfusion. She would fight blood cancer without a drop of someone else’s blood.
Finding Another Way
When Burgess was diagnosed with acute lymphoblastic leukemia (ALL) in the fall of 2020, she was overwhelmed by the typical feelings of shock, confusion and disbelief. But she knew her case was anything but normal. Burgess is a Jehovah’s Witness and will not accept blood.
Jehovah’s Witnesses believe the Bible clearly commands Christians to abstain from blood. Life is a gift from God, and one cannot sustain life by taking in someone else’s blood. Procedures such as transfusions of whole blood or any of its main components — red cells, white cells, platelets and plasma — are not acceptable.
“I knew so little about leukemia. I had no idea what to think, what to feel, what to fear or what was ahead,” Burgess said. “The one thing I did know was that since I am one of Jehovah’s Witnesses, my determination to always have bloodless medical care was going to come into the picture.”
Burgess had to explain her beliefs to multiple doctors when she was admitted to a community hospital after her diagnosis. She felt she was met with some resistance, and fear started to creep in. It was one thing to understand her religious teachings, but it was another to be faced with the real-time life or death decision. She weighed the pros and cons, and she prayed. She had the support of her husband, who is not a Jehovah’s Witness. She put her trust in God and asked her doctors to find another way — a bloodless way — to save her.
“I refused to be a hypocrite at such a critical moment in my life. That’s what I would have been if I gave up on my beliefs because suddenly it wasn’t personally convenient. I couldn’t live or die with that,” she said.
Doctors decided to work to build Burgess’ blood counts back up without a transfusion. She was given Retacrit, a drug that helps the body produce red blood cells, along with iron, fluids and oxygen. She underwent four rounds of “watered down” chemotherapy called vincristine combined with steroids to ensure the treatment didn’t cause her hemoglobin to plummet with no surefire way to build it back up.
During her monthlong hospital stay, she stuck to her spiritual routine. She began each day reading a chapter of the Bible, and she attended twice weekly meetings with her congregation via Zoom.
Burgess’ cancer burden dramatically decreased after four rounds of vincristine, but her only chance of cure was a bone marrow transplant. As a matter of personal choice, that option was off the table.
Burgess was only 45. She ran her own business and had just completed a four-year process to adopt her husband’s two children. She was terrified to lose the life she had worked so hard to build. She knew she needed to find another way to keep fighting.
Bloodless or transfusion-free medicine and surgery refers to the care of a patient without the use of banked blood products. The first bloodless surgery was performed in the U.S. in 1962, and in recent decades major hospitals, including Moffitt Cancer Center, have established bloodless medicine and surgery protocols for patients who refuse blood transfusions.
There is no such thing as true “bloodless” surgery. Patients will always bleed in the operating room, but there are ways to reduce the amount of blood loss and decrease the need for transfusions.
Currently, there is no synthetic material or substitute for blood readily available and approved for use. That’s why it’s imperative for patients who refuse blood transfusions to have a full-scale workup before any surgical procedure. At Moffitt, benign hematologist Vania Phuoc, M.D., helps optimize a patient’s blood prior to surgery and, in some cases, treatment.
Phuoc completes a handful of these consultations each month and says that number is growing. Each case is highly individualized, based on the desired hemoglobin threshold for a specific surgery, the average estimated blood loss and the surgical techniques that will be used. Phuoc’s job is to make sure a patient isn’t anemic, meaning they don’t have enough healthy red blood cells.
“If you have a person who is severely anemic to begin with and they lose significantly more blood during surgery, they are at risk for life-threatening complications, including compromised heart, lung, kidney and liver functions,” Phuoc said.
If a patient is anemic or doesn’t meet the desired threshold for surgery, intravenous iron as well as B12 and folic acid supplements can potentially get them to the goal. This is often used in tandem with erythropoietin stimulating agents — injections of medications that stimulate the bone marrow to make red blood cells — to help quickly raise red blood cell counts in preparation for surgery.
The same supportive measures can also be used postoperatively, especially if a patient loses a large amount of blood during surgery and would benefit from getting their blood counts promptly back to safer levels.
In the operating room, anesthesiologists and surgeons can administer medications and perform certain maneuvers to reduce blood loss. While these provide alternative options for those who will not accept blood, they also come with their own risks.
“Every patient, whether they accept blood or not, has very specific concerns. We tailor the way we care for the patient with their priorities and concerns,” said anesthesiologist Sephalie Patel, M.D., who helped create Moffitt’s bloodless surgery protocols. “Bloodless surgery is a request we can honor, but this one has such severe consequences that we need to have a more in-depth conversation with them about the risks associated with their decision.”
Patel estimates that of the about 12,000 patients who undergo surgery at Moffitt each year, 50 to 100 ask for bloodless accommodations. The majority are Jehovah’s Witnesses.
The teachings from the Bible for Jehovah’s Witnesses are clear regarding accepting someone else’s blood or receiving an autologous blood transfusion — a blood donation that individuals give for their own use. However, there are other options that are a matter of personal choice. This includes techniques that circulate a patient’s blood as an “extension of the body” as opposed to storing a patient’s blood for future use.
Acute normovolemic hemodilution involves removing some of the blood from the body prior to the operation and diluting the rest of the blood left in the body. This way, any blood lost during surgery doesn’t contain a high red blood cell count. Once the bleeding has stopped, the concentrated blood is recirculated back into the body.
Intraoperative cell salvage, or cell saver, uses a device to collect blood lost during surgery. Instead of throwing lost blood away, the blood is cleaned and returned to the body.
Surgeons can use certain drugs and a clotting promoter called tranexamic acid to stop excess bleeding during surgery. Selective embolization, a procedure that uses particles such as tiny gelatin sponges to block blood vessels during surgery, can also help reduce blood loss. In specific cases, laparoscopic or robotic surgery is beneficial because the gas used to inflate the abdomen with minimally invasive surgical techniques results in added pressure applied to blood vessels that limits some of the blood loss.
Even with all these options, careful preparation is the most valuable tool for surgical teams honoring bloodless accommodations.
“You can have adverse outcomes even in cases you don’t anticipate to be complex,” said Wade Sexton, M.D., a genitourinary surgeon who collaborated on Moffitt’s bloodless medicine protocol. “Given some of the more advanced cases that we see, if a patient won’t accept blood, there is added pressure and an added sense of responsibility. We slow down a bit and are more judicious in isolating everything that we think will bleed.”
The Broader Benefit
Reducing the need for blood transfusions is always a goal in the operating room, regardless of whether a patient will accept blood.
“We always want to minimize blood loss as much as we can,” Sexton said. “There is increasing data as to the detrimental effects of transfusion on different cancer-related outcomes. So, particularly at a cancer facility, anything we can do across the board to minimize transfusion is beneficial.”
Risks of transfusions include allergic reactions, bloodborne infections, fevers and acute immune hemolytic reactions, where a patient’s body attacks the transfused cells, causing kidney damage.
Since the creation of the bloodless medicine protocol, Patel has spearheaded preoperative anemia management for all patients. The standard blood management program now involves identifying patients who would benefit from initial hematological evaluations to try to improve the capacity for blood loss and ultimately rely on less blood transfusions.
Beating The Odds
Determined to avoid a bone marrow transplant, Naomi Burgess transferred her care to Moffitt. Her case was discussed during a meeting of doctors at a malignant hematology tumor board, and the experts decided continuing the low-dose chemotherapy regimen wasn’t the best option.
“This is a cancer that is occupying the bone marrow. It’s like a weed in the garden. It’s taken over the garden,” said Bijal Shah, M.D., Burgess’ medical oncologist. “Now after low-dose chemotherapy, the healthy flowers, which are the healthy blood counts, are starting to come back. We did not get rid of the leukemia; we just knocked it down. We made space for healthy bone marrow cells, so now what do we do?”
Shah started Burgess on an immunotherapy called blinatumomab, which targets a protein on the outside of leukemia cells. While Burgess felt optimistic about it, the idea of being cured never entered her mind.
“We have no crystal ball, especially when we are doing things that are out of the box. I can’t make any promises,” Shah said. “Even in the best of circumstances, when you talk about ALL in adults, we are only going to cure roughly 40% of them.”
The immunotherapy treatment caused Burgess’ liver enzymes to skyrocket. She had to pause treatment but was eventually able to continue. She went home after three weeks, and a biopsy in March 2021 showed the treatment worked. There was zero trace of cancer.
Burgess completed one more round of immunotherapy before switching to maintenance chemotherapy for the next two years. She endured COVID and pneumonia and battled all the side effects that come with high-dose steroids. Her body is exhausted from her three-year fight.
On May 25, 2023, she rang the bell after her last treatment.
“As I look back over the past two and a half years and consider the extraordinary journey I have been on physically, mentally, emotionally and spiritually, I can say without reservation, the most poignant decision I made was to loyally stick to my Bible-based convictions,” Burgess said. “That decision along with the doctors who supported my choice of bloodless medicine has led to my phenomenal results.”
Burgess believes there needs to be more education, awareness and acceptance surrounding Jehovah’s Witnesses’ refusal of blood. There is a common misconception that the religion doesn’t believe in modern medicine, but Jehovah’s Witness hospital liaison committees work with health care providers to clarify ethical issues and help congregants find the best medical care that fits within the boundaries of the group’s core beliefs.
“I was never interested in martyring myself, and I had no desire to die,” Burgess said. “I was determined to fight with every fiber of my being, but I was also determined to be faithful to my beliefs.”
Treating a patient who falls outside the standard boundaries isn’t easy, but it’s doable.
“This was extraordinarily challenging,” Shah said. “She is young, and I want to go full-court press. I want to do everything I can knowing she’s young enough and healthy enough to tolerate it. But she’s made her wishes clear. I appreciate that, and I am not going to go beyond that.”
Comfort, Endurance, Hope
On one evening in early June, Burgess and her family walk into the Jehovah’s Witness meeting hall, escaping the summer heat. Inside, she is met with a different kind of warmth.
Big, lingering hugs and well-wishes surround her. It’s the first Thursday evening meeting that Burgess has attended in person since the pandemic. She’s wearing a mask — still cautious about being immunocompromised — but it can’t hide her giant smile.
She sits in the second row, listening to Bible passages and reflections on themes like comfort, endurance and hope. It’s what got her through her battle. It’s what her congregation and faith will always offer.
“My body has been through the ringer, but I am alive,” Burgess said. “I fought blood cancer without blood and won.”
This article originally appeared in Moffitt's Momentum magazine.