I am 49 years old and I was born with Severe Hemophilia. Factor was a new product when I was diagnosed in 1971. I have had the benefit of access to factor concentrate my whole life, but I also experienced the dark side of factor. I was exposed to both the HIV and HCV viruses in the 1980s. My HIV virus remains well-managed. HCV was my Achilles Heel. I eventually received treatment for the disease around 2007, but the liver damage was done. In 2008, I suffered a severe varices rupture and nearly lost my life. It was clear that my liver disease had worsened and I needed a transplant. I started going to a liver transplant center and was added to donor recipients wait list; I spent ten years waiting as my condition slowly declined.
Many transplant patients die waiting for an available organ since there are so many people waiting for so few donor organs. I did everything I could, sharing my story with friends and eventually publicly on social media, talking to researchers about various studies and programs that might increase my chances of getting a new organ, and changing my care to a larger transplant center. The summer of 2017 was the low point. I kept passing out due to lack of oxygen and was on so many pain killers my mind was going numb. There were ambulances at our house almost weekly taking me back to the hospital time and time again. It was widely thought I only had a few months left and it was becoming likely I would not be strong enough to survive a transplant.
Then I discovered a new research program at Northwestern Medicine specific to my condition. We went to meet the team and I had another mental break caused by increased toxicity in the blood and was admitted to the hospital. While in the hospital it was determined I had developed Hepatopulmonary Syndrome, which is a shortness of breath and hypoxemia (low oxygen levels in the blood of the arteries) caused by broadening of the blood vessels in the lungs of patients with advanced liver disease. My liver was causing me to suffocate. I had been passing out for months with continually documented low oxygen levels at the hospitals. It took a hepatologist at Northwestern Medicine to connect the dots; and this diagnoses ultimately jumped me to the top of the recipient wait list! In a period of two months I received four possible organ calls and the final one was the match. On October 27, 2017 I received a liver transplant.
It’s been a little over a year since I received my transplant. As a result, I no longer have Hemophilia, which is very weird. Factor VIII protein is produced, for the most part, in the liver, so with a new liver from a donor that did not have Hemophilia my body started producing normal factor VIII levels. It has been an amazing journey. I am grateful for this new chance at life. I could not have made it to this moment without the love, support and prayers from all my friends and family. I would especially like to highlight the important role the HTCs played in my journey. Throughout my life, HTCs have taught me to understand, accept and advocate for my Bleeding Disorder and ultimately for all my medical conditions. As my liver disease advanced, my HTC helped me work with my insurance company to ensure I had access to a Liver Transplant program with experience in Hemophilia transplants. They continually worked with various hospitals and emergency rooms where I was treated to ensure that my Hemophilia was treated first in any medical situation or emergency. They were always there for any medical question and were emotionally invested in my journey. When it was time for my transplant, they worked directly with my transplant team to create a surgery plan to prevent bleeding during and after the surgery.
In closing, to anyone struggling with major medical challenges, the biggest piece of advice I can give you is to learn all you can about your condition. Take charge of your medical care by being your own medical advocate. Build a strong medical team and support network around you. Finally, live your life. This was a lesson my dad instilled in me back when AIDS entered my life. I wanted to give up and stop going to school. He said keep going and follow your passion. During those scary times I still earned my AA, BA and MA degrees. It was one of the best decisions in my life.