To her recent friends, her time fighting aplastic anemia “sounds like a fable,” Kami says.
Yet the disease, diagnosed in her freshman year at university, nearly killed her.
Like many patients, Kami’s first symptoms were fatigue and bruising. Then her menstrual cycle was so heavy that she says she hemorrhaged, waking up covered in blood. She passed out, so she accelerated her lab appointment. There she discovered her platelets were extremely depleted and her hemoglobin count was only 8.
Sent to the community hospital in her remote area, the doctors just scared her. She was stuck in an isolation/negative pressure room, and not allowed any visitors, except her mom. After receiving multiple bone marrow biopsies and 8 pints of blood the first day, the nurses encouraged her mom to take her to a different specialty as soon as possible. After the first night, her mom let her know many people were praying for her, which she said she knew because she had such strong faith in God.
The following day an ambulance took her to the City of Hope hospital that was two hours away. Kami was admitted there, where she received more bone marrow biopsies that confirmed the diagnosis of Severe Aplastic Anemia. She had daily transfusions, and so much medication prescribed for her. Her dad and brother traveled across the country to be with her as her chances of survival were slim. Although the specialists considered a bone marrow transplant, no donor was found for her. She started the intense ATG treatment, so far from home and her fiancé, who had driven the long drive almost every other day to stay faithfully by her side.
After a month in the hospital, getting intensive treatment and through sickness, Kami returned home, but she still suffered from major fatigue, bruising and other significant symptoms. Her gums would bleed and any stuffy nose or drop in blood counts would turn into a hospital stay.
A year later, the treatment team started looking for a donor again, as the treatment was not working to keep her blood counts stabilized. She underwent the ATG treatment regimen again and was told that this was the last time she could get this treatment, due to the body rejecting it any more times. The treatment seemed to be working and Kami was in and out of the hospital planning her wedding while being an inpatient numerous times. She developed sepsis after a kidney infection a week before her wedding and was granted a 12-hour pass to get married. With much prayer and faith, Kami and her new husband had to change the honeymoon plans, of course, and she had her blood counts checked several times as an outpatient the first week married. However, during that week, her blood counts started coming back up, surprising everyone (except her husband, who takes the credit to this day, due to being a main donor for her blood!) All joking aside, they both attribute her health success to the amazing God they serve and the staff at the City of Hope.
Two years later, she was pregnant. Kami was delighted, even though it was a high-risk pregnancy. Her daughter was born healthy, and two years later she had her son. At this point, she was strongly advised not to get pregnant again because the risk of bleeding was so high. They knew they had two miracle babies since the doctors had little to no experience with a patient giving birth after treatment.
Years later, each of these children chose the health care field- one as an RN in the same hospital floor where Kami stayed, and the other as a paramedic/firefighter. Kami herself earned two Master’s Degrees and is successfully working in education.
Kami always knew and was encouraged by others to share her story, but had been busy with raising her family, so when her daughter began working on the hospital floor where she was treated, Kami realized she had much to share with other patients. First, she knew she had to tell her story of having children after having treatment---so rare! Also, she knew she needed to encourage patients to advocate for themselves. Having to educate emergency physicians and other medical professionals about aplastic anemia and her treatment, she refined her skills in advocating for what she needed.
For patients with aplastic anemia, Kami has several recommendations. “Learn enough to advocate for yourself!” Find and keep your faith, as it is in your control when most of the decisions during treatment are not in the control of your body responses. Find all the information on the disease and treatments, then have it at your fingertips to show to doctors and medical staff. Don’t be shy about speaking up for what you need because most emergency doctors have never seen aplastic anemia; they should and almost always respond to your guidance about this disease.
In spite of having days with severe fatigue, Kami recommends a self care regimen including prayer and exercise. Some medications have challenging side effects, but she says that hiking and biking helped her physical and mental health.
The “normal” for patients is different for everyone. Fatigue can be emotionally draining, too, so take care of your mental health. Involve your family and support system to help support you in these times. Listen to what your body needs and don’t be reluctant to take the time you need on those tough days. And don’t forget to take all of your medications. She says she takes a “handful” of pills every day, but she’s thankful that they let her have good days with lots of opportunities to be positive.
Also, you may experience some trauma with the treatment. Isolation alone can feel abusive, so be sure to find a mental health professional who can help you work through these experiences. Find a safe place to get the help you need, then follow through.
Ultimately, Kami encourages everyone to keep your faith and advocate for their care. Remember that she has been in the same place as other patients with aplastic anemia, so no one should feel alone.