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Lisa: Finding the Light

Lisa loved her work.
As a Senior Teacher in the UK, she dedicated herself, her time, and her passion to her job.  An average week saw her working 70 hours.
Following a beach holiday in the Canary Islands, she developed a strange rash on the top of her feet. A colleague urged her to go to the doctor.
The doctor suggested she was bleeding under the skin, sending her for blood work.  The next day, she went to the lab and a few hours later received a call from her doctor: “You are seriously ill.  The Hematology Ward is expecting you within the hour.” It was June 8, 2011.
Lisa’s brother accompanied her to the hospital, where a room was ready for her.  Although she believed the medical staff was overreacting, a nurse told her, “With that hemoglobin level (66), we’re amazed you are still standing!”
In hindsight, Lisa had missed important signs. The fatigue, the bruising, the dizziness, she had attributed to overwork. Like many patients, she had no idea that these symptoms could mean a serious condition.
The next morning, Lisa saw the specialist, who told her she would have a bone marrow biopsy immediately to look for leukemia. She looked out the window of her hospital room, watching people go about their day as normal, as she was waiting to discover her fate.
Later that day, the senior specialist gave her the news that her bone marrow was “empty” and that she most likely had aplastic anemia.  Googling the term was terrifying; she only remembers the words, “potentially fatal blood disorder.”
That evening, Lisa received her first ever blood transfusion. She was sent home the following day, but had to return twice a week for checkups and transfusions. The next week, she returned to work, putting in fewer hours but still working. Of this time, Lisa says, “I was in total denial.” 
She initially saw her disease as “a weakness” because she couldn’t do what everyone else could do. “I thought I was invincible - work was my life. If people knew I was ill, they would feel sorry for me and I didn't want that,” she said. For many years, Lisa never told anyone beyond close family and friends the name of her condition.
Then, the news came that she had a 42% PNH clone. With the additional diagnosis, Lisa was referred to the closest PNH hospital, in Leeds. There she would see a new specialist who confirmed a primary diagnosis of Non-Severe Transfusion-Dependent Aplastic Anemia. The specialist decided to treat that rather than the PNH. In 2011, the standard of care in the UK was to avoid transplantation for patients over 30. At 29, the specialist’s decision was to treat her with Rabbit ATG instead of bone marrow transplant.
Lisa spent two weeks in the hospital for ATG treatment. A partial response meant that she would still need transfusions in six- to eight- week intervals. Always optimistic, she tried returning to work one month after treatment, but the fatigue was too great. She eventually managed to return part-time five months after the ATG.
In April 2011, a decision was made to repeat the Rabbit ATG. This time, the treatment was much more difficult. She gave herself more time away from work to recover and became transfusion-independent within around two months. With the support of ciclosporin (cyclosporin,) she achieved normal blood counts and full remission in the years that followed.
During these years of recovery, Lisa said “The mental side of the illness was way tougher than the physical treatment and symptoms.” Panic and anxiety attacks kicked in as she tried to maintain her once-rising career in education and return to a ‘normal life’.  Her anxiety continued until she found a way to modify her work schedule, but reducing hours and responsibility meant losing over one third of her income. 
She returned to work full-time in 2017, five years after the second ATG treatment and just after her ciclosporin (cyclosporin) taper began.  She felt almost normal, which meant that she began driving herself hard at work again.
October 2018 came as Lisa took what she thought would be her last ever dose of ciclosporin (cyclosporin).  A couple of months later, she noticed unusual swelling around her neck.  She saw her doctor, who later told her that her thyroid function was “the worst he’d ever seen!”  She needed to take time off work and was given Thyroxine, which she would take for the rest of her life. 
Lisa returned to the hospital in Leeds for regular bloodwork in December 2019.  She discovered her platelet count had dropped and relapse was a scary possibility. Prioritizing her health had to become her new focus. She decided to resign her position and pause her career to focus on recovery. She began taking cyclosporin again, and made lifestyle changes - resting more, daily yoga, gentle walks, and a healthier diet. 
Unfortunately, her relapse spiraled and “scanxiety,” or anxiety with severe symptoms around medical tests, became the norm. She began therapy for this issue, which would remain beneficial in the months and years to come.
She began daily practices to support her mental health. Every day, no matter how hard, Lisa found three things to write in her gratitude journal. She says that this practice was a “Game-Changer,” along with adopting a dog. Her dog, she said, “changed her life.”
By November 2019 Lisa was transfusion-dependent again. In addition to ciclosporin (cyclosporin,) she received injections of erythropoietin to increase production of red blood cells. She also received funding for Eltrombopag but knew the next step would be transplant if this treatment failed. In March 2020, the team suspected the treatment wasn’t working and the search for a donor began. 
Despite her relapse and the Covid-19 pandemic, Lisa was coping well, and had been working part-time from home since the previous fall.  The transfusions interrupted her life, but she began looking forward to September 16: the date for her bone marrow transplant. 
Lisa decided to change her attitude as she began her transplant journey. Instead of hiding her diagnosis and treatment, she began sharing her journey on Instagram. Her blog was based on gratitude and focused on “Finding the Light in the Fight against Aplastic Anemia.”  This medium also became a way to connect with others, especially during the global pandemic.
Early in September 2020, Lisa arrived at the transplant center in Newcastle.  The conditioning regimen lasted 5 days and proved easier than anticipated. Her transplant took place over two days, with 9 bags of 3 million frozen donor cells infused through her Hickman line.
She had to stay a full month in the hospital. After discharge in early October, Lisa’s blood counts declined rapidly. She had to have transfusions again. One day at the end of October, Lisa had a particularly frightening experience when she awoke with petechiae on her face, bloodshot eyes and blood blisters in her mouth. She went to the hospital and received an emergency platelet transfusion.
As she was about to return home, a doctor and nurse came into the room. Their faces looked grave, “You can’t go home, Lisa. We’re really sorry, your neutrophils are zero.” The weeks that followed were the worst of her journey, test after test trying to find out what was wrong, an infection so severe that required admission to intensive care, and two weeks confined to her hospital bed. 
By late November, the medical team concluded that the transplant had failed. A second bone marrow transplant was the only option. Fortunately, Lisa had multiple matches on the worldwide stem cell registry and a date was set for January 2021.
While she prepared for the January transplant date, she was determined to leave her hospital bed and build up her strength. She worked daily with the physical therapist, starting with small walks in her room and built up to walks across the hospital and short rides on the exercise bike.
She had been in hospital for two months and visiting was limited due to the pandemic, so she was granted one-day visits home to see her family on Christmas and New Year’s Day, to support her mental health. She felt lucky to have a wonderful medical team who became a second family during her long hospital stay.
On January 20, 2021, Lisa received 8 million fresh stem cells from her new donor. She was discharged a month later and has recovered exceptionally well. 
During recovery, Lisa slept a lot but made sure she walked every day to build strength. Her family, friends and dog kept her going on the rough days. She continued the daily practice of gratitude and regular mindfulness meditation.  She developed secondary conditions, such as avascular necrosis in her joints and required venesections for iron overload but sees these as “a small price to pay for being alive."
Now, three years later, Lisa’s priorities have changed forever - health comes first and always will. It’s taken a long time, but she’s learned that without health, you have nothing. She is indebted to her donor and medical team for her second chance at life and feels so blessed to be here. Her mantra remains “Look for the light in every day” and Lisa now devotes as much time as she can to helping others find their light too.  
If you’d like to follow Lisa on Instagram, please refer to her page, My Plan C,  here:
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