“You have Sickle/Beta-plus Thalassemia. I am going to write you a prescription for folic acid.”
Over the years, I have learned that taking care of your health is a big part of being a prepper. It is important to be in the best shape possible, both physically and mentally should an emergency situation arise. It is important to be knowledgeable about any health conditions you may have and how to treat them.
I didn’t learn I had sickle cell until I was 23 years old and only after having a major crisis.
After months of hospitalization, doctors’ visits, daily blood tests, and misdiagnosis after misdiagnosis, I finally knew what was wrong with me. Looking back on occurrences in my life, it all made sense. Always having aches and pains, especially when I didn’t drink enough water. I have sickle cell and I found out after having a crisis that nearly ended my life.
I came home from work with a pain in my knee. As the night went on, the pain became worse. My mother suggested I go take a hot bath in an attempt to ease the pain. As I sat in the hot water, I felt the pain radiate from my knee down my leg and then the other leg began to have pain. Before long, the pain was intolerable and I could no longer stand. My family helped me get dressed, carried me to the car and took me to the emergency room. At the emergency room triage area they took my information and began asking questions about the pain I was having. Shortly after that I passed out. When I woke up it was a day or two later.
During the time I was unconscious, my mother says I was given tests and blood transfusions. But even after all of that, there still was not a diagnosis for what happened to me or what was wrong. At one point, the CDC was called in and I remember being quarantined.
At one point, they wanted to perform a bone marrow biopsy. The initial attempt at this procedure was unsuccessful. Apparently, the doctor thought he would be able to shove the biopsy needle in my back with ease without having to use anesthesia or anything else. My cries of pain and disgust made him unable to complete the biopsy at that time. After I was discharged, I went back in for the procedure as an outpatient. At that time, anesthesia was given and the biopsy was performed. The results of the biopsy puzzle me to this day. I often wonder, given the events taken together, if perhaps the biopsy was done improperly, but at this point, no one will ever know. The results showed that I had “crystals” in my bone marrow. The doctor, when discussing the results with me, asked if I had ever injected anything into my bone marrow. I said “no”, internally outraged, but realizing that sometimes people do strange things so perhaps it was not out of the realm of possibility that someone might inject something into their bones. I also began to have little legions/rash spots on my body (mostly my arms and abdominal area.) Subsequent tests and biopsies of the spots were inconclusive. No one was ever able to figure out what was causing the rashes. I am not sure if it was even caused by what would become my initial diagnosis but no one seemed to know what was happening.
Then there was a diagnosis. The doctors said I had parvovirus. I did not know what that was but I trusted that the doctors would know what they were talking about. I began to research parvovirus and even had a nurse friend look up some information for me. The diagnosis seemed strange but I was a layman, I trusted the doctors and I went along with it. The CDC website says “Parvovirus B19 infection can also cause painful or swollen joints (polyarthropathy syndrome), which is more common in adults. It can also cause the body to temporarily stop making new red blood cells. This can lead to transient aplastic crisis, hydrops fetalis, congenital anemia, pure red cell aplasia, or persistent anemia.” (http://www.cdc.gov/parvovirusB19/about-parvovirus.html)
Once discharged, I began outpatient treatment. I went in to the Cancer Center daily to have my blood levels taken. I was prescribed steroids, which began the process of weight gain.
After a few weeks, I went to see my primary physician who I had been seeing since I was about 13 years old. He did not see me while I was in the hospital and I do not think the hospital doctors consulted with him. At the time I did not know that he was not only an internist but a hematologist as well. I had my records sent to him and as he reviewed the tests the doctors at the hospital had performed and the results, he immediately says that he would like to test my G6PD levels and would like to have a complete CBC performed. I went back to see him after the bloodwork was done and he explained to me that I had sickle-beta-plus thalassemia. He went over sickle cell disease and what it meant and finally after months of treatment and uncertainty, I had a diagnosis. I knew what was wrong and I knew what I needed to do to take care of myself, at least preliminarily.
Upon hearing this diagnosis and what it entailed, my mother remembered that after my birth, a nurse in the hospital had mentioned that I could never live in high altitudes. She did not know what that meant and sadly, she did not ask for a further explanation. Perhaps, they had done some preliminary infant testing and the results came back positive for sickle cell but at this point, we will never know.
I also had memories of things in my childhood that now made sense. I used to have frequent pain in my legs growing up that I now think were crisis episodes. About a year before the crisis that lead to my diagnosis, I visited Disney World with my family. After a day at the park with my family and swimming laps in the pool at the hotel, we returned to our room exhausted from the day. That evening, I began to have severe pain in my legs. I chalked it up to having walked around the park all day and then swimming. I suffered all night and needed to take over the counter pain medication in order to ease the pain.
I had heard of sickle cell before only because I have family members who have the disease. I know that it causes extreme pain that requires hospitalization and transfusions among other issues and interventions. However, I was not aware that my parents were carriers of the trait and for that matter, neither were my parents.
After the experience and subsequent diagnosis, I began to research the disease on my own. I wanted to be well versed in the disease and be able to take care of myself. I also wanted to be able to visit a doctor again and participate in my care. This experience taught me that it’s never ok to just “lay there” and let a doctor just do whatever. It is always best to be an active participant in your medical treatment. That is not to say that doctors do not know what they are doing, BUT your medical treatment should be a collaboration between you and your doctor. If you are seeing a doctor who refuses to acknowledge your concerns, answer your questions and discuss any conditions and possible treatments, it is probably best to find a new doctor.
In addition to all of that, my husband has hemoglobin C. This was discovered during the routine prenatal visits for our first child together. This means that with each pregnancy we have a 25% chance of having a child with the disease. Our first born, has thalassemia minor and our second, has the sickle cell trait. These are facts to know so that we can best take care of my health and the health of our children.
Over the years, through my research and paying attention to what works and what doesn’t work, I have learned how to keep hydrated, what foods make me feel best, how much rest I need and generally how to keep myself as healthy as possible. With the retirement of my primary physician, it took me a while to find a new hematologist and primary physician but I have found that now. I have had some setbacks since the time I was diagnosed, losing insurance, trying to find a doctor who accepts Medicaid and is knowledgeable about sickle cell. It is quite difficult to find a doctor who is caring, compassionate and knowledgeable while not being biased.
Having sickle cell you quickly learn that medical professionals often times do not know about the disease or what treatment entails. There is often a stigma placed on sickle cell patients because patients often need to receive painkillers to get relief from painful crisis episodes. For patients who visit their doctor or emergency room on a regular basis because of constant or recurrent pain episodes, some health care professionals may begin to treat the patient like a drug addict and/or accuse them of just coming in for the pain medications. Often times, hospitals or doctors are not able to provide adequate pain management treatment.
Having sickle cell requires that you take care of your health and know what does and doesn’t work for you. Working with your doctor and being an active participant in your healthcare is also very important.
Through my experience I have learned to advocate for my family and myself when it comes to health issues. I have learned to research any and all health conditions that you may be diagnosed with and ask questions when visiting the doctor. A doctor’s visit should not be one-sided. It is the patient’s responsibility to participate in their care.
Every day with sickle cell is a new experience. Pain management is an everyday struggle. But I am thankful to finally know that I have sickle cell so I can face it head on.
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