My Story: Diagnosing Aplastic Anemia
Have you seen the 1987 film Adventures in Babysitting? Most days I am quite sure that if a film was made about my wild international adventures in diagnosing Aplastic Anemia, the result would be even more ridiculous and unbelievable than the Hollywood comedy. Rewind a year and a half, to November 15, 2011. At the time, I had just finished a master’s degree in Peace Studies and was living across the world in Pristina, Kosovo with two friends, working with a local nonprofit organization, traveling, and trying to figure out my next move in life. On that day, hours before heading to Istanbul, Turkey for a week-long getaway of couch surfing, culture and sightseeing, my medical adventure began.
Just as my friend Chelsey and I were finishing packing, I received an unexpected email from my California-based family doctor. Before flying to Kosovo a few weeks prior, I had seen my doctor after noticing unusual bruises that kept reappearing. Having recently finished school, I didn’t have insurance so my adventure actually began when I asked a drug store clerk what natural, over-the-counter vitamins I should be taking to combat my self-diagnosed anemia presumably caused by my vegetarian diet. I’m not as dumb as I may sound. I’ve heard the “don't ask WebMD!!!!!!!” lecture many a times. In my defense, I considered myself a very healthy 26 year-old who had never broken a bone or gotten a cavity. I'd had a handful of colds over the years and the chicken pox when I was 9, but I hadn’t taken so much as a Tylenol in years. After deeming the Walgreens pharmacist “useless” for not recommending a vitamin, I finally agreed to fork over $75.00 to have my doctor tell me that I was perfectly healthy. And that’s exactly what happened. After seeing pictures I had on my phone of some of the bigger bruises and giving me a basic check-up, I got the go ahead to travel abroad. As a precaution, my doc ordered testing for a complete blood count (CBC) and von Willebrand. I had the blood drawn and boarded my plane the next day, feeling a little relieved to have my suspicions confirmed that the bruises were no cause for concern.
Just as my friend Chelsey and I were finishing packing, I received an unexpected email from my California-based family doctor. Before flying to Kosovo a few weeks prior, I had seen my doctor after noticing unusual bruises that kept reappearing. Having recently finished school, I didn’t have insurance so my adventure actually began when I asked a drug store clerk what natural, over-the-counter vitamins I should be taking to combat my self-diagnosed anemia presumably caused by my vegetarian diet. I’m not as dumb as I may sound. I’ve heard the “don't ask WebMD!!!!!!!” lecture many a times. In my defense, I considered myself a very healthy 26 year-old who had never broken a bone or gotten a cavity. I'd had a handful of colds over the years and the chicken pox when I was 9, but I hadn’t taken so much as a Tylenol in years. After deeming the Walgreens pharmacist “useless” for not recommending a vitamin, I finally agreed to fork over $75.00 to have my doctor tell me that I was perfectly healthy. And that’s exactly what happened. After seeing pictures I had on my phone of some of the bigger bruises and giving me a basic check-up, I got the go ahead to travel abroad. As a precaution, my doc ordered testing for a complete blood count (CBC) and von Willebrand. I had the blood drawn and boarded my plane the next day, feeling a little relieved to have my suspicions confirmed that the bruises were no cause for concern.
Halloween, my first night in Kosovo
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Underground scene, Gracanica, Kosovo
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Pristina, Kosovo
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Now, back to November 15. An email came from my doctor who had been unsuccessfully trying to reach me by phone, not remembering I was abroad. He explained that the CBC test showed a very low platelet count; 27 compared to the normal 150-450 range, which was causing the bruising. He also found that my white blood cells and red blood cells were also quite low; a concerning combination. He said I could have a potentially life-threatening bone marrow disorder and recommended I see a blood specialist right away. Right away… as in, after my trip to Istanbul, right? After all, I had no clue what platelets were or what bone marrow did, and I felt fine. My friends, however, had another trip in mind. We cancelled our bus and hitched a ride instead to Skopje, the capital of Macedonia, where a United Nation’s doctor friend had recommended I seek care. So, we ate Turkish baklava, did a little sightseeing, and made a pit stop at the hospital. Having no appointment, we strolled in and waited 30 minutes to meet with the ‘English speaking doctor’. Turns out, I could not have found a more helpful, caring doctor if I had actually put any effort into it.
Dr. Martin drew some blood and after 5 minutes, analyzed it under the microscope in his office, ashing his cigarette into the sink as he spoke. (In the U.S. I never waited less than a few hours for blood results!) Unconcerned about giving a misdiagnosis, or speaking too soon, he looked up from his microscope, quickly glanced at a few of my bruises and told me he suspected I had a rare disease called Aplastic Anemia. He kindly explained to my friends and I that if he were right, I would need a bone marrow transplant immediately because it appeared to him to be a very severe case. Seeing from my blank stare that I didn’t understand what he was saying, he wrote an email to my mother, a nurse in the U.S., explaining his suspicion.
In order to confirm his preliminary diagnosis with testing, he recommended that I travel to a hospital in either Greece or Croatia to get a bone marrow biopsy. He explained that he could do the procedure, but figured that my U.S. doctors would have more respect for the findings of doctors in those countries. He worried that if he performed the painful procedure (7 on a scale of 10, he guessed) that I would only have to get it redone once I went back to the U.S. He urged me to return to the U.S. but called a hematologist friend in Thessaloniki, Greece and asked her to see me ASAP. I got the sense that Dr. Martin was concerned that I was uncomfortable with the medical differences, the language barrier, and being away from family during this time. I explained that I have lived and traveled around the world and was perfectly comfortable. Besides, I didn’t want to do anything drastic to ruin my plans if it turned out to be nothing. Not to mention the fact that I had no insurance at home. It was a pretty amazing experience to be in Macedonia visiting a doctor for free simply because I was a sick person who needed care, and to see the look on his face as he tried to wrap his head around the idea of ‘being uninsured’. We left, not having filled out any paperwork or paying Dr. Martin anything for the hour of his time.
The following day, Chelsey, Sofie, and myself hitched another ride with a friend to Greece, thinking ‘ROAD TRIP!’ We were trying to be responsible, while not letting the little medical drama ruin our first time in the country.
Dr. Martin drew some blood and after 5 minutes, analyzed it under the microscope in his office, ashing his cigarette into the sink as he spoke. (In the U.S. I never waited less than a few hours for blood results!) Unconcerned about giving a misdiagnosis, or speaking too soon, he looked up from his microscope, quickly glanced at a few of my bruises and told me he suspected I had a rare disease called Aplastic Anemia. He kindly explained to my friends and I that if he were right, I would need a bone marrow transplant immediately because it appeared to him to be a very severe case. Seeing from my blank stare that I didn’t understand what he was saying, he wrote an email to my mother, a nurse in the U.S., explaining his suspicion.
In order to confirm his preliminary diagnosis with testing, he recommended that I travel to a hospital in either Greece or Croatia to get a bone marrow biopsy. He explained that he could do the procedure, but figured that my U.S. doctors would have more respect for the findings of doctors in those countries. He worried that if he performed the painful procedure (7 on a scale of 10, he guessed) that I would only have to get it redone once I went back to the U.S. He urged me to return to the U.S. but called a hematologist friend in Thessaloniki, Greece and asked her to see me ASAP. I got the sense that Dr. Martin was concerned that I was uncomfortable with the medical differences, the language barrier, and being away from family during this time. I explained that I have lived and traveled around the world and was perfectly comfortable. Besides, I didn’t want to do anything drastic to ruin my plans if it turned out to be nothing. Not to mention the fact that I had no insurance at home. It was a pretty amazing experience to be in Macedonia visiting a doctor for free simply because I was a sick person who needed care, and to see the look on his face as he tried to wrap his head around the idea of ‘being uninsured’. We left, not having filled out any paperwork or paying Dr. Martin anything for the hour of his time.
The following day, Chelsey, Sofie, and myself hitched another ride with a friend to Greece, thinking ‘ROAD TRIP!’ We were trying to be responsible, while not letting the little medical drama ruin our first time in the country.
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Thessaloniki, Greece
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We enjoyed a typical touristy weekend on the Thessaloniki coast, and forgot about the purpose of our trip until Monday morning…the dreaded day of the bone marrow biopsy. All I knew at the time was that it involved drilling through the bone to take a sample of marrow, and I could hardly handle the thought of my daily blood draws! (Chelsey had even resorted to bribing me with cappuccinos and donuts as a reward!)
We navigated our way on public transportation to the George Papanicolaou hospital just outside of the city which, we were told by everyone we got directions from, was named after the Greek inventor of the ‘Pap Smear’. We arrived to a jam-packed waiting room, where we were told to wait for a few hours. We took seats on the floor and watched as everyone scoffed at the crazy foreigners sitting on the dirty floor. We wouldn’t learn until many months later about the danger of germs for someone with my condition…hence the stares. With nothing to do but wait, and trying to avoid procedure anxiety, we entertained ourselves by taking silly photos of each other, and laughing hysterically, forgetting we were among a serious group of hospital goers. Rookie mistake.
We navigated our way on public transportation to the George Papanicolaou hospital just outside of the city which, we were told by everyone we got directions from, was named after the Greek inventor of the ‘Pap Smear’. We arrived to a jam-packed waiting room, where we were told to wait for a few hours. We took seats on the floor and watched as everyone scoffed at the crazy foreigners sitting on the dirty floor. We wouldn’t learn until many months later about the danger of germs for someone with my condition…hence the stares. With nothing to do but wait, and trying to avoid procedure anxiety, we entertained ourselves by taking silly photos of each other, and laughing hysterically, forgetting we were among a serious group of hospital goers. Rookie mistake.
This is what people do in waiting rooms, right?
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This went on for at least an hour...
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Eventually I saw a nice and knowledgeable doctor who explained the process to us, but disappeared and was replaced by two very young looking students. My friends were escorted out and I was asked to lower my pants. To ease my anxiety, my friends gave me music and headphones to help distract me. Although I was given no drugs or numbing agent, I did find it laughable that Destiny Child’s ‘Bootylicious’ was the first song that came on as they were driving a corkscrew-like tool into my hipbone. The procedure only lasted 5-6 songs, but it felt like an eternity of hitting ‘next’, ‘next’, searching for an appropriate song. Turns out, there are none.
I was quite sure that Dr. Martin was being conservative with his 7 out of 10 pain prediction. The idea of anything piercing my bones gives me the chills, although it was more the pain of the two student docs using their combined body weight to force the initial puncture. That’s the fun of having no drugs—although I couldn’t sit through a YouTube video of the same procedure, I have a pretty good idea of everything that was happening back there! When they were done, I lay on the table trying not to vomit from the pain, but they said I couldn’t lie down. Since sitting up made me feel sicker, I decided to leave, and find my friends. I only made it to the exam room doorway before fainting, but those nice docs threw my arms over their shoulders and carried me to the waiting room. My friends couldn’t believe it when they dragged me though the doorway, handing me off to them, blue lips, slurred speech, ghost-white face and all, according to them. I immediately threw myself onto a row of chairs, pushing some things onto the floor, and making a big enough scene that the doctors decided to take me back.
After an hour or so of rest, I felt fine, left only with the expected stabbing pain in my hip and the shooting pain down my left leg. We were sent with a little pay slip indicating the treatment I received to the accounting department for payment. I was warned beforehand that as a visitor to Greece, I would need to pay the full-uninsured price, but the amount was unknown. I thought of the student loans I had yet to begin paying off, and imagined taking another one out just to pay for this crazy day. I was beyond shocked when I was handed my bill of 27 euros, about $35.00. I read somewhere that the same procedure at home would have cost me $12,000 without insurance!!
I was quite sure that Dr. Martin was being conservative with his 7 out of 10 pain prediction. The idea of anything piercing my bones gives me the chills, although it was more the pain of the two student docs using their combined body weight to force the initial puncture. That’s the fun of having no drugs—although I couldn’t sit through a YouTube video of the same procedure, I have a pretty good idea of everything that was happening back there! When they were done, I lay on the table trying not to vomit from the pain, but they said I couldn’t lie down. Since sitting up made me feel sicker, I decided to leave, and find my friends. I only made it to the exam room doorway before fainting, but those nice docs threw my arms over their shoulders and carried me to the waiting room. My friends couldn’t believe it when they dragged me though the doorway, handing me off to them, blue lips, slurred speech, ghost-white face and all, according to them. I immediately threw myself onto a row of chairs, pushing some things onto the floor, and making a big enough scene that the doctors decided to take me back.
After an hour or so of rest, I felt fine, left only with the expected stabbing pain in my hip and the shooting pain down my left leg. We were sent with a little pay slip indicating the treatment I received to the accounting department for payment. I was warned beforehand that as a visitor to Greece, I would need to pay the full-uninsured price, but the amount was unknown. I thought of the student loans I had yet to begin paying off, and imagined taking another one out just to pay for this crazy day. I was beyond shocked when I was handed my bill of 27 euros, about $35.00. I read somewhere that the same procedure at home would have cost me $12,000 without insurance!!
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Starting to get the color back in my face...
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Happy with my $35.00 bill in an old wheelchair
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The test was supposed to rule out Acute Leukemia, which although the results were a little inconclusive, it did, and I was celebrating that. As far as I understood, Leukemia was the worst-case scenario, so I was relieved to have a diagnosis of anything else. Obviously I knew very little about cancer and literally nothing about Aplastic Anemia, but I figured I had nothing to worry about. Unsure about what my next steps should be, I spoke to my family about coming home, about finding insurance now that I may have a preexisting condition, and debated going to Canada or Germany where I could stay with family and receive affordable care. I consulted twice more with Dr. Martin in Macedonia, and he convinced me to get on the next available flight. Being as stubborn as I was, it basically took him explaining the fact that soon I may be unable to fly home without risking bleeding to the brain. I bought a flight home and left Kosovo a few days later, but I couldn’t resist stopping briefly in London to visit a friend. (Again, I felt fine!) My plan was to “run home”, see a few doctors, get cleared, and be back in time for a makeup trip to Istanbul for New Year’s on my way to my master’s graduation ceremony in Austria.
Once I arrived home to Central California, things were a whirlwind, and far less exotic for my taste. Christmas time was spent going from insurance appointments to doctor appointments and quickly switched to trips to the ER and a local cancer center. It was not long before I realized that the New Year’s trip everyone else knew wasn’t going to happen, wasn’t going to happen. And it was unlikely I would be able to attend my graduation, a celebration and reunion with classmates I had looked forward to for so many months.
It seemed the altitude on the flight home triggered something and literally overnight my symptoms intensified, and I no longer “felt fine”. Three days after I returned home, I received my first platelet transfusion, and continued getting them twice a week, along with the occasional red or white blood cell transfusion. A large plastic bag filled with freezing cold thick yellow liquid (the platelets) would be transfused into my arm vein over the course of an hour, and would raise my platelets to a safer level. Since the cells only live a few days, they would die and be replaced by another big yellow bag full. A majority of the time, I waited many hours, and up to two days for blood to be driven in from other cities, as my local blood banks had none available. My family spent Christmas Eve wrapping presents in the ER waiting room while I was in the back, waiting for a delivery of platelets to arrive from Sacramento, 2 hours away. Over the next few months, I received a total of 49 blood transfusions, each one enabling me to make it 3-4 days at a time until I could be officially diagnosed and treated. As much as the transplant saved my life, I would never have been able to have a transplant if not for those 49 individuals who donated blood.
Once I arrived home to Central California, things were a whirlwind, and far less exotic for my taste. Christmas time was spent going from insurance appointments to doctor appointments and quickly switched to trips to the ER and a local cancer center. It was not long before I realized that the New Year’s trip everyone else knew wasn’t going to happen, wasn’t going to happen. And it was unlikely I would be able to attend my graduation, a celebration and reunion with classmates I had looked forward to for so many months.
It seemed the altitude on the flight home triggered something and literally overnight my symptoms intensified, and I no longer “felt fine”. Three days after I returned home, I received my first platelet transfusion, and continued getting them twice a week, along with the occasional red or white blood cell transfusion. A large plastic bag filled with freezing cold thick yellow liquid (the platelets) would be transfused into my arm vein over the course of an hour, and would raise my platelets to a safer level. Since the cells only live a few days, they would die and be replaced by another big yellow bag full. A majority of the time, I waited many hours, and up to two days for blood to be driven in from other cities, as my local blood banks had none available. My family spent Christmas Eve wrapping presents in the ER waiting room while I was in the back, waiting for a delivery of platelets to arrive from Sacramento, 2 hours away. Over the next few months, I received a total of 49 blood transfusions, each one enabling me to make it 3-4 days at a time until I could be officially diagnosed and treated. As much as the transplant saved my life, I would never have been able to have a transplant if not for those 49 individuals who donated blood.
Was all prepped for surgery until they realized my platelets were too low so I got a quick infusion (The yellow bag is platelets although my friends joked I got mango juice injections since I love it so much)
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The day after Christmas, back in the hospital for more blood transfusions!
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My new doctor at the cancer center wasn’t quite sure what to think about the Greek hospital report, so he performed another biopsy. The good news is, my experience in Thessaloniki prepared me for some of the more painful aspects of my treatment. I was so anxious in the days leading up to my second biopsy, and instead of goofing off in the waiting room like I had before, I was crying on the phone to my best friend in London. As it turns out, they do use numbing agents among other things here in the U.S. so the procedure was a hundred times less painful than I had remembered!!! Don’t get me wrong…getting a corkscrew driven into your bone is not pleasant. But it definitely didn’t cause the hyperventilation I experienced before. I never thought my reaction would be, “that was it??” I felt like doing a cartwheel when it was done! Well, almost.
Early in the new year, my doc initially thought I had Myelodysplastic Syndrome (MDS) but officially diagnosed me with Severe Aplastic Anemia. It is a rare autoimmune disease, with an unknown cause, in which the bone marrow is damaged, causing a deficiency in the three blood cell types; platelets, red and white blood cells. A bone marrow transplant was my only option-- I needed to find a donor quickly. Although the transfusions were working in the meantime, I learned that the more foreign blood products that were introduced into my body while searching for a donor, the greater the risk that I would reject the transplant. I was sent to see the incredible transplant team at Stanford, led by Dr. Miklos and Dr. Logan, who wasted no time in searching for a donor and arranging for my transplant to happen as soon as a donor was identified.
My three siblings were first tested using a cheek swab, and later a blood draw. Full biological siblings have a 25% chance of matching your DNA closely enough to be an eligible bone marrow donor. If the results came back negative, I would then search the national marrow donation registry for an unrelated donor. Of all the stress my diagnosis brought, the donor search was by far the scariest part. I felt totally and completely dependent on the generosity of strangers to voluntarily donate marrow. I had never done it—I had never even heard of doing it! And now I expected it to be done for me? I felt the pressure that was put on my siblings, who wanted desperately to be a match, something that was absolutely out of their control.
I don’t know if it is possible for anyone to understand my relief the day that my donor was found. After a bit more testing and a health exam, my older sister, Shannon, was confirmed as my donor (read about her experience as a donor here).
The transplant itself was quite beautiful. The days leading up to it were awful, and the following few months were miserable, but the day of the transplant I slept peacefully. I was hospitalized for 14 days before the transplant, and during that time I got pneumonia, went into septic shock, spent 6 days in the Intensive Care Unit, and received 5 straight days of chemotherapy. The transplant day was such a relief, I felt like my body could finally rest knowing it had made it to The Day. When my doctor brought in the bag of bright pink bone marrow and told us that Shannon was doing great and was sleeping off the anesthesia, I was ready! We read the marrow some inspirational messages out of a quote jar my friend Amy had sent me (yes, we read to the marrow!), and sent lots of positive energy into the bag. And then, once I saw the pink fluid entering the tube connected to my heart artery, I slept.
Today I am healthy, happy, and determined to live life to the fullest. Days away from my one year anniversary, my “second first birthday”, I cannot believe the past year. SO much has happened, so much has changed—including my DNA!!!—And my health has recovered so tremendously that sometimes I forget I was ever sick. My doctor reminded me last week that I am not invincible, nor am I in perfect health. I have the immune system of a 6 month-old baby, but am building a strong immunity every day. I am finally through my initial recovery period and can begin working after being disabled for more than a year.
My story has a very happy ending, and none of it would have been possible without all of the amazing doctors, caring nurses, the 49 blood donors, my completely selfless donor, my family or my friends. While I can forget about the pain, the nausea, or the exhaustion, I never want to forget the experience. I want to remember it for every person out there going through a similar experience, and especially those searching for a donor. I am determined to give my story an even happier ending; to use it to spread awareness about the need for lifesaving donors and encourage those around me to register. If, as a result of these debilitating 12 months, one life is saved from the addition to the registry, these will be the most meaningful 12 months of my life.
Thank you for reading, and for considering your part in saving a life through marrow donation!
