The War May End but the Fight Continues After Rare Disease Diagnosis

by Damian Carbajal
Air Force Veteran & RARE Patient Warrior

In 2017 I felt as if I plateaued in a job that no longer served me. I pursued retraining which led to a flight physical and eventually a new adventure as a Flight Engineer. While doing the physical, discrepancies within my blood were identified. Looking back, I suppose the Air Force gave me my “make a wish” and let me fly. This adventure began.

By 2019 I had made it through BFE, SERE, IQT/MQT on the AC-130W and was on course to deploy. I completely dismissed my fatigue and shortness of breath as the doctors didn’t seem too concerned. After one hell of a trip out the door in Iraq I think we all had an interesting 2020 and I kept going.

The year began with me returning and not processing my experience or seeing my father’s decline in health. My last flight was at the end of February and by March a whole pandemic ensued. I was put into isolation because my leadership and I didn’t know the severity of my disease versus COVID. By June my father passed and I was crushed; but I kept going.

As time passed I tried to be positive and pour myself into my service but after a decline in health, an awakening car accident and Med Board God had a different trajectory for me. By March of 2022 I was medically retired and truly lost a sense of identity and image. Appointments at this point had increased from once a year to every six months, to every three months, to every month, to every two weeks, to once a week. I was being seen at the Mayo clinic for the possibility of Aplastic Anemia or Myelodysplastic Syndrome.

A couple days after retirement, I was at Mayo Rochester and came back with a new diagnosis: Short Telomere Syndrome with a Dyskeratosis Congenita (bone marrow failure) and TERC, U2AF1, and RUNX1 gene mutations. After a few months of overindulgence, I was notified that a bone marrow transplant was necessary and three possible donors were identified. I decided to make a change and pushed forward.

I poured my love into my puppy and made a huge investment into my personal wellness focusing on: physical, mental/emotional, nutritional/hygienic, spiritual, social/family/community, financial, intellectual, environmental, medical/psychological, and professional aspects. By May 2023 I felt ready and pressed on.

Now, after eight or nine months; I have triumphed over two bone marrow transplants, about 20 rounds of chemo, one zap of radiation, 70 days in patient, about a hundred transfusions of hemoglobin, platelets, magnesium and potassium, my first encounter with COVID, RSV, EBV, HLH, GVHD, a number of flirts with death, a weight flux of 77 kg to 59 kg to 86 kg to 78 kg, thousands of pills, countless side effects and so many lessons learned. I have lost the most comprehensive love of my life, shed so many things that no longer serve me and am proud to say; I’m still here and I’m continuing to move forward. I lost family members, lost out on holidays, memories, and many events but gained faith, resilience, and my health is improving!

I’d like to thank my God, my family, my friends, my community, my donors, my entire medical team, and countless others who took time to offer me love, support, caregiving, prayer, good vibes, well intentions and even visits. In the moments I was ready to give in, you kept me engaged, focused on healing, and most of all fighting each day. I love you all and look forward to the next journey ahead and the adventures to come. Much love and thank you all!

Totis Viribus, Amor Fati, Memento Mori