Can I Ever Feel Good Living With PNH? Here’s What I Learned
“Can I ever feel good living with PNH?”
This important question has gone through my mind many times after receiving my diagnosis. When I was in remission from aplastic anemia, every 6 months, I had a check-up appointment with my doctor. Blood tests were run to gather details on any major health changes. During a routine 6-month doctor’s appointment in 2016, I learned my red blood cells, white blood cells, hemoglobin, and other blood counts were low. This meant I was no longer in remission from aplastic anemia.
I was shocked and confused, as the routine six-month check-ups had become like clockwork. I went to the doctor, and they said all my test results were good. I smiled and, in excitement, drove away from the doctor’s office in peace. This day was not like that.
My primary physician was an oncologist. Since I was her only hematology patient, we were learning together more about aplastic anemia. In her research, she found information on aplastic anemia patients also diagnosed with paroxysmal nocturnal hemoglobinuria (PNH). For precautionary measures, my doctor said, “I want to check you for PNH. I don’t expect the test to be positive, but I want to rule it out.”
The next day, I received a call from my doctor (this is never a good sign) saying, “You have also been diagnosed with PNH.” In my confusion, complete fear filled my body. I knew how to fight aplastic anemia, but now I was left with understanding a new rare blood disorder and its attacks.
I questioned everything about life at this time. I did not understand how this was my life. I wondered if I would ever fully feel better from PNH. The research on this disorder, in 2016, didn’t fill the Google search history with much data. I knew symptoms would come, I knew there were treatment options that would affect my daily life, and I knew my life would be full of all things health-related.
Slowly but surely, I learned of the effects of PNH. The symptoms I have experienced have taught me important lessons about health and listening to my body. Now, 9 years out of my diagnosis, I understand that feeling good while battling chronic illnesses is encompassed by tapping into different areas.
To better answer the question first posed, I had to understand my diagnosis, find a specialist, learn to listen to my body, and not forget to live life.
1. Understanding my diagnosis
To get to a positive position with PNH, I first had to better understand my illness. In the beginning, I did not feel I was in the right headspace to research my illness. At that time, I leaned on my parents, who were my caregivers. They researched to better understand what I was up against.
This lead me to become familiar with both illnesses, treatment options, how they reacted in my body, and what blood counts were the most important to review for health improvement. Becoming familiar with this information helped me understand my fight and draft a plan for what I wanted and how I was going to get the best care for myself.
2. Personalize my care
The Personalised Care Institute explains, “Personalised care simply means that patients have more control and choice when it comes to the way their care is planned and delivered, taking into account individual needs, preferences and circumstances.”
When it came time for me to review and select a treatment option, I had candid conversations with my doctors about what mattered most to me. Since I was 26 years old at the time, I was more concerned about how the future looked for me. I explained how I wanted to have kids and live a long, good life with a family. As I expressed these concerns to my doctor, we examined the pros and cons of each treatment option and selected one that would accommodate my needs.
To better prepare for the future, I was also able to freeze my eggs to alleviate any worries or doubts I may have about my future. As personalised care is defined, I felt like a part of a team that included my health professionals in deciding the best course of action for me. a team that included my health professionals in deciding the best course of action for me.
3. Listen to my body
In my PNH News article titled " By listening to my body, I know when to schedule a checkup, " I explain how I listen to my body by looking for bruises on my legs or understanding how long I feel fatigued at any given time. Noticing symptoms and taking a mental note or writing them down helps me understand my body.
As with fatigue, my body is asking for rest. I have learned not to push my body past exertion and to give in to what it wants and needs. Resting when needed helps me rejuvenate and feel ready to take on another day.By listening to my body, I know when to schedule a checkup, I explain how I listen to my body by looking for bruises on my legs or understanding how long I felt fatigued at any given time. Noticing symptoms and taking a mental note or writing them down helped me understand my body.
As with fatigue, my body is asking for rest. I have learned not to push my body past exertion and give in to what my body wants and needs. Resting when needed helps me to rejuvenate and feel ready to take on another day.
4. Don't forget to live life
Brandi’s Podcast — Coming Soon
This is one of the easiest things to forget while battling a chronic illness - remembering to live life. It is so easy to put your health first in mind, where everything else takes a back seat - and I mean way in the back! Living life helps us remember that life will continue. As I have battled blood disorders, there have been times when it was easy to seclude myself and stay indoors. In those times, I felt that what I was going through was greater than continuing to live.
Life is hard at times, but one beautiful thing about it is that we learn how to fight through the tough times. As I look back on the tough moments in life, I am proud of myself for continuing forward. Even when I didn't know how I was going to make it out of the situation.
I learned to continue you to live because it wasn't only for me. I was living for my family, prayer warriors, and friends who wanted to see me win.
Even at times when I didn't think I would feel better living with PNH, I discovered that there were many avenues I had to take to get to this point. As I continue to live with PNH, I feel better because of these 4 important values.
About the Author:
Brandi Lewis is a blood disorder awareness educator, TEDx speaker, writer, and nonprofit founder living in Alabama. She is passionate about helping others diagnosed with a chronic illness. She was diagnosed with aplastic anemia and PNH, the symptoms of which began in 2009. Her nonprofit, Brandi’s Blessings, was created to spread awareness and support blood disorder patients. Her greatest accomplishment is saving three lives by having people register to become a bone marrow donor. Brandi currently sits on different boards to further expertise and information for blood disorder patients. She is a dog lover of a labradoodle, Milo, and thinks laughter is the best medicine. Learn more about her at www.brandilewis.com.
