Surviving Loss: A Journey from Losing Homeland to Surviving Bone Marrow Failure | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

Surviving Loss: A Journey from Losing Homeland to Surviving Bone Marrow Failure

Hello this is Sahar, a woman who fled her homeland followed by the failure of her bone marrow within 6 months. I am a daughter, a devoted wife, a mom to two adorable children. I am an Afghan refugee, but today I stand as a survivor- having battled Aplastic Anemia and undergone a life altering bone marrow transplant. 

"Life is a foray of mysteries," as expresses by Suleika Jaouad.  I led a simple yet meaningful life in Kabul, a city renowned for its unfortunate tag as one of the most dangerous in the world, a reputation sadly validated by the security challenges. My home was a place where I matured, attended school and university, found the love of my life, and exchanged vows. 

As a couple who had earned our LL.M degrees from the United States and had actively contributed to US projects, our lives took an unexpected turn. Our ties to US and more significantly our daughter’s US citizenship heightened the risk we would face in our homeland. The love of our home country ran deep, and the idea of becoming refugees was never a part of our plans. Yet, with our homeland’s safety vanishing, we had to make a difficult choice: to leave. As I packed the necessary items for my kids, I was also forced to pack my hopes and dreams for my country.  As I was leaving, I took one last look at our house, bidding goodbye to our bedroom, my kids’ toys and the newly furnished living room. We were evacuated on August 27, 2021. 

With tear-filled eyes and a heart heavy in grief, we boarded a military flight that carried us to Doha. Enduring four days in intense heat of Doha, we were eventually transferred to the United States as our final destination. 

After months of waiting and being poked for dozens of vaccines as part of the refugee status requirement, I received an incredible news from Chapman University, my alma mater where I earned my LL.M degree in 2015. They extended a visiting scholarship, granting me the chance to engage in academia once again. This opportunity would also allow me to create and teach a course centered around Afghanistan—a prospect I was incredibly excited about. I booked our tickets and we landed directly at Johne Wayne airport in Orange County. I settled into Chapman’s senior student housing and abruptly started my affiliation with Chapman. 

As we established ourselves in our new home, our case worker helped us connect with a primary care physician and undergo specific tests, ensuring no health issues for anyone. Our case worker scheduled our initial visit where our new physician ran tests that included a full CBC (complete blood count) analysis. A few days later, I received a call from my physician’s office, informing me that my platelets counts were low. Platelets??? I loved biology as a subject in my higher school years, but why had I always thought that we only have white cells and red cells in our blood. For those unfamiliar, platelets are a crucial component of our blood. It has cream to yellowish color and helps our blood to clot in case of injuries or bleeding. My primary physician referred me to a hematologist and urging me to schedule an appointment as soon as possible. 

On my initial visit to the hematologist, I stepped out of the vehicle, my eyes were immediately drawn to a stunning, sizable building that displayed the name "Compassionate Cancer Center." I felt numb and shaky at the same time.  As I entered the building, a staff member guided me to the hematologist’s office. He greeted me warmly and asked, "What brings you here?" I struggled to articulate, managing only to say, "I've been told my platelets are low."

He smiled and reassured me, "That's quite common among us Asians. Your vitamin B12 levels might be low. I'll prescribe some B12 injections to help increase them." However, it took a month for my health insurance to approve the injections.  I took them weekly for another month.

During this time, I ought ways to connect with my new community. I aimed to find a career that would keep me engaged with my Afghan peers. It dawned on me that a career in immigration could serve as a meaningful bridge between Afghans and Americans, allowing me to contribute and connect on a deeper level.

I set my sights on becoming an immigration lawyer. To kickstart this aspiration, I began working with CAIR Los Angeles to gain relevant experience while I prepared for the Bar Exam.

About a month into my job at CAIR LA, the hematologist called, informing me that I needed a bone marrow biopsy. I felt a sudden chill and asked, "Should I be concerned?" His response was measured, "Your red blood cell count has dropped, and I want to ensure there's nothing worrisome going on there."

I found myself heading for my bone marrow biopsy alone. As I caught sight of the table with the sizable needles, I couldn't help but voice my concern to the doctor, "Is it going to hurt?" 

He assured me, "I'll use lidocaine to numb the area, but since I'll be going deep into the marrow and get a sample of the bone, you might feel some discomfort." His words were accurate. The procedure turned out to be quite painful. It felt like a sharp knife repeatedly stabbing me and suctioning out my blood for at least 20 minutes. Despite the discomfort, I managed to refrain from reacting.

Once the procedure concluded, my doctor inquired, "Did you feel the pain?" When I replied truthfully, he remarked, "You're a tough person."

Two weeks after the biopsy, my doctor invited me to his office to discuss the results. He greeted me with the reassuring news that my bone marrow appeared healthy. However, he advised me to continue taking B12 tablets and scheduled a follow-up appointment in a month. I diligently stuck to my medication routine and carried on with my daily life.

Then, during a work meeting one day, I was suddenly overcome by extreme dizziness and a sensation of almost passing out. I interrupted the meeting and left. Later that night, I experienced a severe headache accompanied by ringing in my ears.

Recognizing the seriousness of these symptoms, I scheduled an urgent visit with my primary care physician the following morning. There they conducted a hemoglobin test, revealing that my hemoglobin levels were dangerously low. My doctor sent me to the emergency room, where I received my first transfusion.
The doctors in the ER asked me what was troubling me, and my response was simply, "I don't know." They insisted I schedule and appointment with the oncologist.

That doctor speculated that something in my diet might be the cause. When he asked about any recent additions to my diet, I mentioned ginger tea and avocados. He appeared doubtful but suggested, "Well, just stop those for now."

Despite following this advice, my visits to Emergency continued. I found myself needing platelets and blood transfusions. One day, a resident oncologist from the hospital shared that there might be an issue in my bone marrow. He inquired about my occupation, and I shared that I worked part-time at an immigration organization while also pursuing a course to teach at Chapman University, all while taking care of my two kids.

He smiled gently and cautioned me, "You'll find it challenging to maintain that routine considering what might be ahead."

By this time, I had the opportunity to develop and design a course curriculum focused on Afghanistan for political science students at Chapman University. While the prospect was exciting, delving into the subject matter was emotionally challenging. It was not possible to begin class without a lump in my throat.

On the second day of class, I received a text message from my oncologist, urgently requesting that I contact him. I left the classroom to call him back. He said that upon reviewing my bone marrow biopsy results again, along with other doctors, they now suspected I had a condition called "Aplastic Anemia."

In a hopeful tone, I responded, "Oh, thank goodness! It's anemia, so some iron supplements and I'll be all right, right?" However, his response was sobering. He explained that this was a different kind of anemia, one that involved bone marrow failure. He mentioned that for patients at my age, a bone marrow transplant could address the issue with a success rate of about 96-97 percent. 

Aplastic anemia is an exceptionally rare condition, often described as a one-in-a-million disease. In simple terms, it is a failure of the bone marrow, the spongy tissue responsible for producing red blood cells, white blood cells, and platelets in our body. In my case, my bone marrow had stopped producing these cells, resulting in bruising due to low platelets, fatigue and exhaustion from low red blood cells, and an increased risk of serious infections due to low white blood cells. 

This news came yet as another shock for someone who never had health issues in the past. 

During my last visit to the ER, their oncologists, considering my doctor's plan for a bone marrow transplant, transferred me to a different hospital with a note reading "bone marrow transplant candidate."

When I arrived, the doctors set aside my previous diagnosis and began a full checkup to accurately determine my condition.

After 11 days of check-ups and another bone marrow biopsy, the test results confirmed I have severe idiopathic aplastic anemia. One of the doctors gently asked me, "Tell me, what happened? Has some major issue occurred in your life recently?" That was when I burst into tears, recalling the shocking events of my losses.

There are two main types of bone marrow transplants: autologous, where the patient's own stem cells are collected and returned, and allogeneic, where stem cells are obtained from a compatible donor, often a sibling or rarely an unrelated donor. I was a candidate for an allogeneic transplant only.

My hematologist, one of the kindest and most empathetic doctors I know, was optimistic about finding a donor among my four sisters. She shared that in her experience treating young Afghans with leukemia, finding a donor within the family was crucial because the community wasn't well-represented in the registry Unfortunately, in my case, none of my sisters turned out to be potential matches, prompting us to explore the international registry. Miraculously, we not only found one potential donor but three. I received my bone marrow transplant after a week of intense chemo and radiation therapy, on March 24, 2023. After a month-long hospital stay, I successfully engrafted and returned home to my family.

All I know about my donor so far is that she is a lady two years younger than me, residing in Germany, with a blood group type A+.

This life-changing experience has profoundly affected my understanding of human connection and the true essence of compassion. The selfless act of a stranger giving a part of themselves to save my life made me realize that there is no us or them. It is we and us. We are all interconnected, regardless of our backgrounds, beliefs, or origins our humanity bounds us together.

Trauma can profoundly impact an individual's mental, emotional, and physical well-being, permeating various aspects of their life. While a part of me is grateful for confronting this disease in one of the most developed countries, another part of me strongly believes that this may never have happened if I had not lost my country. During the process of finding a new bone marrow, I lost my job, my hair completely, both my physical and mental strength and my children lost the mother they were used to.

As I navigate the ongoing healing process, it becomes evident that trauma, whether physical or emotional, can leave an enduring impact. The experiences of other Afghans further emphasize the delicate nature of mental well-being in the aftermath of such profound losses.

As I write this, my recovery is still ongoing, marked by regular blood transfusions every other week. My baby hairs are beginning to grow, a source of excitement for my son, even more than for myself. Living with the immune system of a baby forces me to acknowledge my limitations and avoid crowded places. The constant fear of relapse or future complications haunts me, but amidst these concerns, I realize how fortunate I am.

I've survived multiple occasions where I could have lost my life, including a brush with a suicide bomb. My survival became possible in the first place when my primary physician and the hematologist suspected that something was wrong. Luck smiled upon me when I found a potential donor in the registry, granting me a second chance. Treatment in a top-ranking hospital, under the care of skilled and dedicated professional transplant team, assured me of the curability of the disease. The nurses, both in and out-patient, made me feel beautiful even in my bald state.

I extend my gratitude to my unrelated but most related donor. I’m grateful for my parents whose unwavering prayers and love provided me with another shot at life. Special thanks to my two younger sisters and my sister-in-law who stood by me during the toughest months of pre- and post-transplant. To my oldest and youngest sisters who persisted in finding out if they were a match, I am thankful. I am thankful to my husband, for I am a survivor, he is my warrior. To my extended family and friends, your help and support have made this challenging journey much easier. I wouldn't trade my support system for anything else. 

My journey of life toward new adventures continues with an added mission: to raise awareness about the disease and promote bone marrow registration and donation among Afghan immigrants.