My life before I was diagnosed with Aplastic Anemia was pretty busy! I was finishing up my travel nurse assignment in Washington and heading home for Christmas. I had plans to reunite with my fiancé, finish wedding planning, and get ready for my new job in a new nursing specialty. For a few years, I had been traveling off and on as a travel nurse, but I was excited to be back and begin a new chapter with my fiancée as newlyweds.
When I finally arrived home on Christmas Eve, I began to experience an audible pulsing behind my ear. My family mentioned that I looked pale. I was increasingly becoming more fatigued even with lots of required rest. Slowly it would become hard to walk, go up the stairs, get off the couch or take a shower without feeling out of breath. Eventually, I experienced fainting spells and petechiae, which led to the ER. Hospital admission and testing followed. The audible pulsing behind my ear continued.
Looking back, I noticed that I had frequently become sick and had canker sores for the past 6 months to a year prior to my diagnosis.
After a week’s stay in the hospital, the diagnosis was confirmed with a bone marrow biopsy. It was Severe Aplastic Anemia (SAA). As a NICU nurse, this is not a diagnosis I was familiar with. Being a rare disease condition, I had not heard about it from anyone either. While I began to learn that my bone marrow had failed to produce any blood cells for a reason that couldn’t be identified, it did not hit me right away that SAA would change my life.
Soon after, they explained that while I may “feel” fine at the moment because I just received several bags of platelets and PRBC transfusions, my body was in fact not fine. It was barely hanging on unless I received a bone marrow/stem cell transplant to cure it with a new start. When my doctor explained that I would need to become a patient full-time and cancel all the plans I had lined up for the rest of the year, it began to click.
And all of a sudden, I found myself unashamedly wailing on my hospital bed.
After the tears dried, I quickly adapted to this new life as a full-time patient. Too much was happening so quickly that I wasn’t processing my emotions but rather just trying to keep up clinically with the treatment plan, information, and next steps.
At first, when it was harder to keep myself smiling, there were others that helped do that for me. My cousin sent photos and videos of her children laughing and dancing away often, which undoubtedly would lift my mood with impeccable timing any time I needed it. I’d receive messages from strangers, family, friends, and those I had not been in touch with for a long time. As annoying as it felt at times to have my mother by my side almost 24/7, I don’t think it would have been as easy to go through treatment alone when the “noise” died down.
The fight with SAA continued. My fiancé provided me the space to feel all my feelings, eat special meals when I didn’t want to eat, and reminded me of my beauty when I didn’t feel it. I got through treatment because I had unwavering support from family who held the fort down at home; family who donated platelets; my brother who became my transplant donor; family who fed my mother warm meals so she could care for me; family who handled the hospital paperwork; a whole community who prayed for me; my sweet dog; and my fiancé who cared for me yet still saw me beyond my diagnosis. I was not alone. They made my life easier by allowing me to focus on getting better, and nothing else.
At times, I found myself beginning to lose purpose. At first, the hobbies were fun, but I felt as though I was losing purpose in my days and my life. This was not the life I knew. I didn’t know it at the time, but it helped when my cousin had asked me to finish a puzzle that she could glue together and hang in her son’s wall. It was such a simple task, but it kept me going. If you are a friend or family member of someone going through SAA treatment and you feel that it is appropriate timing, it could be helpful to ask for simple favors.
To be on the receiving end of care from wonderful nurses is such a blessing. There are nurses whom I’ll never forget for how they made me feel, for the hardest moments, for the scary ones. Because they made me feel safe, I was brave. They helped me believe I could overcome this. From my first day admitted to the hospital to my first bone marrow biopsy to central line placement procedures to going through chemo, hair loss, and my transplant, I was feeling anxious, worried, distraught, isolated, sad, but many times scared. During your most vulnerable moments, there’s no better feeling than establishing a trust and a bond with the nurses.
The side effects from the process lingered throughout treatment and recovery. I mostly felt fatigued and nauseous at times with stomach aches, dry eyes, and bone pain. Fatigue was handled by becoming increasingly aware of my body’s signals and making it a point to rest and take naps. Nausea and stomach aches were handled by staying on top of medications and having clear communication with myself and my nurses. Dry eyes were tolerable, but noticeable. Eye drops were all that were needed and continued for a while. Not much helped with the bone pain, but it was tolerable enough.
I was diagnosed with SAA in Jan 2024. I started chemo prep + fresh marrow harvest transplant at the end of Feb 2024 thanks to my amazing brother who was my donor. By June, I was declared in remission and beginning to see my counts slowly coming up. Recovery would be my focus for the next 6 months after remission. With caution, I began to see some friends and family. While I didn’t begin the new job I was supposed to, I will now begin medical school in July 2025. I can only be a better future physician through the experiences I’ve had as a prior nurse and now as a patient/SAA survivor. For that, I’m grateful.
At the time of my diagnosis, I realized that life would be different for a while. After remission, I began to realize that SAA would continue to be a part of my life now. A new normal was now created, and that was okay. I am almost 16 months post-transplant and am continuing to visit my PCP regularly as well as check-in with my Hem/Onc specialist for monitoring. I have been getting revaccinated with all my childhood vaccines and continue to have a few more bone marrow biopsies scheduled into the future. The large pile of required medications are also gone. Transitions back into society can be isolating at times because you have changed and gone through a major life experience, but I utilize it as my strength. You are not alone.
I’m grateful for the fast-tracked treatment I had and the relatively smooth recovery afterwards. It wasn’t perfect, but it wasn’t the worst. This was a mentally, spiritually, and physically hard period of my life, but it’s all relative. You are so much stronger than you know. I can’t help but be grateful for the support and help I had that helped me bounce back to a better version of myself. For my first rebirthday (1 year post-transplant), I actually was able to run my first half-marathon with a PR (Personal Record)! I would’ve never imagined this for me. While I find that some days, I still find myself without the stamina I used to have and am aware that my white blood cell counts are lower than normal, I can’t help but look at where I am today and how far I’ve come. Yes, there are minor things I can’t do, but there’s still so much more I am able to do! It’s a balance and a lot of self-awareness.
My advice for anyone facing treatment for Aplastic Anemia? First, don’t go through this process alone. You don’t deserve that.
There are days that you might want to be alone and you have every right to be. But don’t give yourself more than 2 days in a row to be alone. Just trust me on this.
We might need to be socially distanced, but we weren’t designed to live alone. In this age of technology we can use it to our advantage to bring those far to be near - video and phone calls, text messages, and support groups. Have fun conversations with who you know is going to make you feel good and safe, not stressed and anxious. I had not thought of using social media to find others going through SAA, but now as I have begun to share more and more of my story, many individuals have reached out to me from all over the world. Given its rarity, my only hope is that I can help them in any way that I can, knowing I would’ve appreciated speaking with others going through the process on a personal level, especially early in my journey with SAA.
The two hardest parts about being in the hospital for me was being unable to sleep and being unable to get some fresh air outside. If there’s any way that you can advocate for yourself in a safe manner to be able to have fewer interruptions at night and get a chance to step out or sit by a larger window or whatever else that you may think that you need, please don’t be afraid to try to speak with your team (nurse, tech, provider) and anyone who is willing to listen and advocate for you to get what it is that you may need. You never know what options could be available if you speak with the right people.
If you ask what I learned from my journey, something that comes to mind time and time again is the fact that everything is temporary. The bad moments, the good ones. So it’s important to learn how to appreciate the present moment and learn to live in it. Learn to understand that you can and should sit through the dark moments as long as you need to and move through them because it will be over. Learn to live deeply through the bright ones because they too will be over before you want them to be, but they will come again.
Gaining more knowledge and advocating for yourself are so important, but there will be a time when you need to let go and have faith if that’s your thing.
Take it day by day. That’s all you need during this time.