One in a Million
One year ago today (4/18), I underwent a liver transplant due to a genetic condition called HHT (Hereditary Hemorrhagic Telangiectasia), or Osler-Weber Rendu Syndrome. Roughly 1 in 5,000 people are diagnosed with HHT. Of that 1 in 5,000, up to 75%, have liver involvement. Of that 75%, only 8% become symptomatic. The data gets spotty after this, and from my research, I can only find 59 documented cases since 1985 of liver transplantation related to HHT.
My symptoms included chronic anemia, shortness of breath due to high output cardiac failure, fatigue, body aches, brain fog, and the hallmark symptom of HHT, horrific nosebleeds. Man, did I try to muscle through all that – doing much more than I should have for fear of falling behind. No one, except those closest to me, knew how sick I was. I don’t think I even knew. I likely wouldn’t have lived more than two years without this transplant. I would not have been able to see my children into the next phases of their lives or shepherd them into adulthood. My options for survival were pretty straightforward. Either I get a new liver, or I would die. Sit with that for a moment. Either I get a new liver, or I will die. I couldn’t will myself to be better. There were no other options.
By the grace of God, my incredible doctors at the UCSF HHT Center for Excellence, Dr. Miles Conrad and Dr. Jennifer Lai fast-tracked me into the world of organ transplantation. I received my diagnosis and plan in December of 2021, was officially listed on April 1st, 2022, got my call on April 17th (Easter), and received my gift on April 18th.
There aren’t enough words to express my gratitude to my donor family. To say I am humbled is a colossal understatement. I hope to meet them and thank them for their grace, courage, and selflessness during their tremendous loss. I will continue to write letters and hope they reach back out someday. I can’t imagine the pain they must have felt. I hope to honor them by living my life to the fullest, being a good person, and sharing the importance of organ donation.
To my own friends and family, there will never be enough words to express how much I love you and how thankful I am that I get to stay with you. To my mom, who also suffered from this disease, thank you for the gift of a roadmap, so that I knew what to look for. I wish you could be here to see this. I will always love you infinity buckets!
To anyone who’s gone through an organ transplant – I see you. I am proud of you. You are a fucking warrior. Live well. And to all of you, please consider organ donation. It truly is the greatest gift that you can give to someone.
Kristina, congratulations on your successful transplant. I guess I’m one of the 59. I actually had 2 liver transplants. The first one failed because of a blood clot. The doctors learned from me. They did a jump graft procedure which entailed taken the main artery from the donor liver. They learned a lot from me, and for future HHT liver transplant patients they will look at that very closely. So, I was the “Guinea pig”, but I am blessed to be alive and hopefully my procedure will help future HHT patients.
Again, congratulations and stay healthy!
Thank you for sharing your story, Kristina! Being a transplant recipient does not come without challenges of a different kind, but you are right – an absolute warrior, nonetheless! <3 <3
awesome!!! what a story! thank you for sharing. It is so helpful to so many people
Thank you for sharing your story,Kristina. Praising God with you (& Anthony’s) for your successful transplants.