Amanda’s Story: Growing up with PIDD
Tears stream down my face and puddle on my oxygen mask as the ambulance rushes me to the hospital once again. My oxygen level is dangerously low, and I am so weak that I can barely stand. My mom holds my hand tightly reminding me that she is with me. We learned long ago, within the first year of my life, to bring my favorite pillow and blanket from home as it is going to be a long several days. It is always the same drill. We get to the hospital, and we wait, and we wait, and we wait as they try to find a room to admit me to. I dread the IV process, as it always takes several attempts and results in the inevitable scars from the needles and the tape that rips my skin every time. I just want to go to sleep, I am so tired. What is wrong with me? Will I ever be normal? This was my life prior to being properly diagnosed with Primary Immune Deficiency disease (“PIDD”).
I am writing this to tell you that my disease is not what defines me. No, I refused to be the sick kid. Rather who I am today is a high school senior, a member of the National Honor’s Society and a varsity cheerleader where our team has won the state championship twice and got 2nd place the other time in competitive cheerleading and have also competed in Nationals at Disney all three years. Yes, the sick kid became an athlete. I am now focused on attending college next year with my fingers crossed on what school I get accepted into. But make no mistake, I have had, and still do on occasion have, my share of challenges with my disease.
Where to start? I always think back to a speech my dad gave at a fundraiser in which began, “Tired, scared, and frankly more than a little upset, which is the life of a parent with a child with PIDD before being properly diagnosed.” Everyone with PIDD has their own story, and so do their family members. Some details of my story may sound familiar and to some, they may not. What I hope is that you can take something from my story and relate it to your own. I hope a sentence here or there may help you on one of your bad days. I want you all to know that you are not alone, and the bad days will pass. While PIDD should not define us, it does impact us.
According to my parents I was a problem child, just not in the traditional sense. I was born prematurely and to make it simple to describe, my esophagus did not connect to my stomach. I spent the first couple of months of my life in the nursery ICU and underwent a lot of medical procedures, but I eventually made it home right before Christmas. While I was able to go home, I still had esophagus issues and when I turned one, I had a major operation that resulted in life-threatening complications. I obviously don’t remember any of this, but according to my parents I was in the ICU on a ventilator for almost two months while they slept on the floor of a waiting room every night and were told to prep for the worse. Spoiler alert…I am here today so I made it through. While I still have some esophagus issues that I am dealing with, the real scary stuff was behind me by the age of two.
This led to the next stage of being the problem child. I would get sick. My cold would soon turn into pneumonia. I would then have to go to the hospital for a few days. This cycle repeated on average every 4-6 weeks from the months of October through April for years. We all had our roles in the hospital. My mom always took me to the hospital and stayed with me for the first few days when I was very sick. She was there for comfort and protection. Her main job was to make sure I was taken care of while I mostly slept. Let me tell you, she could get tough with the nurses and doctors. I am pretty sure they all hated her, but she always fought for me. Then my dad would come and relieve my mom at the hospital, and the nurses would breathe a sigh of relief. He was there for recovery. His main job was to entertain me as I began to feel better. I still remember the walks through the hospital hallways pulling my IV along beside me playing I Spy and going to the playroom. After a day or so of that, he would take me home. We would then repeat the process again in a few weeks.
My parents estimate that I spent around a quarter of my life in the hospital up until the age of seven between my esophagus issues and PIDD. During this time, many of our vacations were cancelled or cut short because I was sick. I missed an incredible amount of school. I vividly remember staying home in bed while my friends were outside having fun. While I don’t remember everything, I do remember having these thoughts:
What is wrong with me?
Can I ever live a normal life?
Why doesn’t anyone have answers?
I feel so bad for my family for making them go through this.
I don’t want to be poked and stuck by doctors and nurses anymore!
We went through test after test, and no one had an answer. Maybe I had allergies, which brought about a full range of treatments. Those treatments didn’t seem to help at all, but they still required many doctor visits and way too many shots. Maybe I would grow out of it, like it was normal to be this sick, this often and then miraculously wake up one day and be healthy. Yeah, my dad was right as I too was tired, scared, and frankly more than a little upset. I remember thinking repeatedly, help…someone…anyone…help!
Then one day I met Dr. Patel and my life truly changed. At the age of seven I was diagnosed with Primary Immune Deficiency Disease and started getting my weekly infusions. My monthly hospital stay became a stay once or twice a year. Eventually, I averaged 1 hospital stay once every year or two. Now I am happy to say, the last time I was admitted overnight in a hospital for pneumonia was several years ago. Remember, I was there on average every 4-6 weeks prior to treatment. Yeah, once I was properly diagnosed my life changed and so did my family’s.
Now as many of you know, it wasn’t always easy just because I was finally diagnosed. Initially my mom had to take me to the hospital for the weekly infusions, which between travel time, wait time, and the process, took several hours of the day. We were lucky in that my mom was a stay-at-home mom, and I can appreciate that not every family has that flexibility. We then transitioned to weekly home treatments, where my mom gave me the treatments. That took hours because I would freak-out over the whole process. I dreaded the weekly drill of “taking my medicine,” did I mention I hate being poked. I hated that “bubble’ of fluid that was under my skin after the treatment reminding me I was different. During the first year or so, I still got sick, just not as sick. Since I still missed a lot of school, we learned how to work closely with my school administration and teachers on my health issues and how to work through my absences to keep up with my studies. I had to learn how to manage my time. Frankly, that is a skill that has really helped me as I got older, and my classes became more advanced and homework more demanding.
Eventually, my weekly treatments became just a regular part of my life. OK to be completely honest, I still argue with my mom on when to take my treatment. I have been doing this for years and some things never change as I know I must do the treatment, but I still always want to push it off until tomorrow. Amidst my procrastination at times, I am proud to say I haven’t been admitted to the hospital for several years now. While I still get sick more than the average person and get a nasty cough that seems to take forever to get rid of, I can usually manage through that and still go to school and participate in my other activities. We now have a system at my school where my mom and I meet with the school administration and teachers every new semester to give them my background to ensure flexibility in case I must miss class. Physically, I don’t think anyone would ever know what my body has been through. I like to go the gym and exercise and I have been in competitive cheer for over 10 years now. Mentally, I think I am stronger for all that I have had to overcome. I can appreciate what is important, and I tend to laugh off the small stuff.
One thing that has changed over the years is my confidence in being myself. When I was younger, I never wanted to talk about my disease or my history. Looking back, I suppose I just wanted to be “normal” and my life with PIDD was anything but normal. Now, I am open with my friends about my disease and my weekly treatments. It took time, but eventually I realized that I had to live my life and people would understand, which of course they did. Strangely, while COVID represented real health risks to me, it also brought awareness about Primary Immune Deficiency and overall health to the school system. I think that has also played a role with my change in being open about my health and my history.
If you are reading this, then you know the struggle. If you are a patient, then you are a fighter. I like to think my fight has prepared me for my next chapter. So, what is next? As a child, I am not sure anyone knew what was going to happen to me and the concept of me being an athlete or going away to college was at times a dream given my health. Well, here I am, excited for my senior year in high school and hope to win another state championship and even more excited to go away for college. I am excited to finally have the courage to tell my story so maybe someone out there reading this will find some comfort or some hope. One thing I am confident in is this disease does not define me. No way. I get to tell this story and my disease is allotted one chapter in what I hope to be a long and interesting story.
