IamA Two Time Liver Tranplantee who is celebrating their 5th Liverversary and who met my donor. AMA!
My Short(ish) Bio: I was diagnosed with two auto-immune disease at age 2. The first was Primary Sclerosing Cholangitis, a disease that causes scarring on the bile ducts, causing the liver to also scar and become damaged. The second was Ulcerative Colitis, which is an inflammatory bowel disease.
I was put on a myriad of medications and steadily deteriorated until, when I was 7, I received my first liver transplant, which had immediate issues. Thankfully, I was fairly healthy for a while from 3rd – 5th grade, but ended up deteriorating rapidly when I was in 6th grade and had my second liver transplant when I was 16, after waiting 18 months (8 of which were out of state closer to the transplant hospital due to rapid decline in health).
On February 5, 2014, at approximately 8:30 PM, I was taken into the OR and after about 13 hours, at roughly 9:30 AM, February 6, 2014, I was closed up. This transplant was via a process known as a Domino Transplant. One patient dies (in this case, it was a child in Washington D.C.) and their healthy liver is transplanted into another patient who has a disease called Maple Syrup Urine Disease (a non-communicable autosomal disease) and I received the liver from the MSUD patient. Since the MSUD patient and I had out transplants at the same hospital, by the same doctors and only hours apart, I got to meet her. She was 8 years old and from Kuwait, there was a language barrier, but she and her family were extremely nice. I have a picture of her and her mother, but only myself, my mother and my father are allowed to see it.
The surgeons had a hard time getting my abdomen open due to all the scar tissue, and I needed about 7 transfusions and almost had a heart attack on the table and I coded once as well. Regardless, I was able to make it through the surgery and now, 5 years later, this transplant is considered successful by transplantation standards. Sadly, out of 6 others who I got to know that received transplants around the same time I did, I and one other are the only survivors.
I am now a junior at the University of Florida Online majoring in Environmental Management in Agricultural and Natural Resources with a minor in Geography and am currently in the process of looking for grad schools in greenhouse horticulture and automation. I still don’t go out much, but that’s mainly because I suck at interacting with people my age, but I have two internships, one at a soil science lab, where I will be today (so sorry for delays in responses!), and another at an aquaponic greenhouse.
If you want to help transplant families get through the tough financial times (like 8 months away from home!) please consider donating to the Children’s Organ Transplant Association, a non-profit that sends fundraisers to help organize fundraising events so families can make it through the tough times! - https://cota.org/give/
Also consider donating your time, money and toys/games to a local hospital (children’s or otherwise!) boredom in the hospital for days or weeks or months on end isn’t good for healing!
My Proof (SFW): https://imgur.com/YS1SU9u
Pics in the Hospital and Today (NSFW): https://imgur.com/a/lCM0ndJ
EDIT: My first gold! Thanks so much! I'm trying to answer everything but I'm at the lab, lunch break is ending soon, so hopefully I get to the rest later today! Thanks for all the kind words, I really appreciate it!
EDIT #2: I want to thank you all for your fantastic questions. It was an honor to talk to you and answer your questions. I'll be around Reddit, so feel free to ask anything else! It truly amazes me how many people have had transplants, and even more shocking how many have PSC. I hope everyone stays happy and healthy, whether your have serious medical issues or not!
I'm also adding some support groups for transplant recipients, please take care of your mental health, whether you're a recipient, donor or caretaker!
Please talk, your mental health is just as important as your physical health!
Also, please, at the very least, consider becoming an organ donor. One healthy person who has passed can save 8 people with organs and help 50 people with tissue. It's cost and hassle free and doctor's will not act upon the organ donation clearance until they have done EVERYTHING in their power to save you first and then speak with an emergency contact; saving your life is their top priority!
More information on how one donor can save and enhance many lives: https://share.upmc.com/2015/04/the-impact-of-one-organ-donor/