Part 1: Illness

        Other than all the issues with the infections described below, the main symptom of Aplastic Anemia for me was fatigue. I was tired all the time, due in large part to the low hemoglobin. I always felt significantly better the day after a blood transfusion. I would try to get all the chores done then, because the other days, I could hardly walk or stand without getting winded and my heart rate jumping up.

Onset

        My AA basically appeared overnight. The week before I was hospitalized for three weeks, I hiked 11 miles with no problem. The first sign that something was wrong was when I noticed small, reddish dots (petechiae) around my body, then began to bruise extremely easily and severely. I felt and looked fine otherwise, but a blood test showed that my platelet count was at 6k (normal is 150k-450k). My other cell lines were fine and I got a platelet transfusion that day. A few days later, my platelets plummeted again and I went back to the hospital for another transfusion. My other cell lines (red and white blood cells) also began to quickly go down and that’s where they stayed. From June 2021 until after my transplant in November 2021, I had to get blood and platelet transfusions about once a week, sometimes more.

Infections

        From June through September, I experienced nonstop infections caused by microorganisms that normally live in the body and only pose a threat when the immune system is compromised, as was the case with me. No matter how many precautions I took, there was nothing I could do about these infections. Early on, I got sepsis multiple times, which happens when the infection spreads into the blood stream. If not caught early, this will lead to death. I basically lived at the hospital. I felt like a pinball being thrown around with no control over my life.

        By September, I felt that I could not go on as things were. I learned what I could from what I had experienced thus far and made changes accordingly. These changes were:

• Taking my temperature and blood pressure every day 
• Also taking my blood pressure before I left the house any time because if it was too low, I was prone to fainting
• Writing down all my symptoms, no matter how small, in a notebook with the date
• Reporting my symptoms to my hematologist at the cancer center as soon as they appeared, even if I didn’t think it was a big a deal 
• Do not wait to report symptoms. Normally, I would wait a few days to see if they went away. Without an immune system, more often than not they did not go away and in fact got much worse. This is what led to sepsis early on.
• Went to the hospital as soon as I got a fever

        After implementing these changes, I stayed out of the hospital for three weeks straight and my next two hospitalizations before transplant only lasted 2 days and were not traumatic as my previous ones had been. I made important personal changes too but the ones above were essential for my physical well-being. If someone had told me to do all these things from the get-go, I think I could have avoided some of the suffering.

Patient/Self Advocacy

        Being in the hospital for so long under such dire circumstances felt like living in a different world where I was helpless and at the mercy of overworked strangers who did not really care about me. I had to tell nurses and doctors what I needed. Here are some ways I learned to advocate for myself:

• Asking for a 20 gauge IV catheter and not accepting anything bigger 
• This was huge. In the beginning, they always put larger IVs in me, which is good practice in an emergency setting but was not necessary for my long-term situation. I learned from the oncology people that blood products and medications can easily be infused in a smaller IV. There was no reason for me to have a larger IV but I had to fight for the 20 gauge every single time.

• Always checking that they gave me the right medications with the right doses 
• Asking for a repeat blood test if the result didn’t seem right 
• This was also huge. Most doctors only pay attention to the numbers without truly (or at all) assessing the patient. One time, my hemoglobin showed up as 7.4 when it was in the 6 range the days before and dropping. I didn’t say anything and it turned out that my hemoglobin was actually 5.5 and I didn’t get a transfusion because of delays until the next day when it was at 5.2. I felt physically terrible and then required more units than I would have otherwise. 
• Another time, my hemoglobin showed up in the 4 range so they ordered a transfusion of multiple units, but I knew it wasn’t that low because of how I felt. I said I would refuse a transfusion until a new test was taken. When the new test came back, my hemoglobin showed above transfusion level (every doctor knows that unnecessary transfusions must be avoided). 
• Saying no. 
• The patient ALWAYS has the right to refuse treatment. That includes refusing to take medications, to receive a transfusion, or to have an IV inserted. It also includes leaving the hospital against medical advice (AMA). Contrary to popular belief, leaving AMA usually does not have consequences with regard to insurance (i.e. insurance will usually pay for the hospital visit even if you left AMA).

        Taking into account medical recommendations and risks, you decide what is best for you and your health. Only you know what feels right and wrong and it’s important to communicate that so everyone is on the same page and you get the best care that you need.