chongli Posted January 26 Share Posted January 26 (edited) I have never heard of this guy, but he was endorsed as a great member of Bills Mafia by King of Phinland. The gofundme was just $120 15 minutes ago and is now over $400. Edited January 26 by chongli Quote Link to comment Share on other sites More sharing options...
scuba guy Posted January 26 Share Posted January 26 Does it say how high he is on the transplant list. 1 Quote Link to comment Share on other sites More sharing options...
stuvian Posted January 26 Share Posted January 26 is this Pinto Ron? https://www.gq.com/story/meet-pinto-ron-bills-mafia Quote Link to comment Share on other sites More sharing options...
BBFL Posted January 26 Share Posted January 26 2 hours ago, stuvian said: is this Pinto Ron? https://www.gq.com/story/meet-pinto-ron-bills-mafia That article is for Pinto Ron. Buffalo Ron is not the same person. 1 Quote Link to comment Share on other sites More sharing options...
chongli Posted January 26 Author Share Posted January 26 (edited) 3 hours ago, scuba guy said: Does it say how high he is on the transplant list. He hasn't been placed on the list yet, This is from the guy's wife: https://www.gofundme.com/f/ezras-liver-transplant [the liver transplant list stuff is bolded:] "Hi! I’m Karen, Ezra’s mom. I’ve been trying to gather my thoughts and process what is going on. When we were first called about this precious boy, the very little information given included the statement, “…he’ll probably need a liver transplant within the year.” We said yes to him, not knowing how long he’d stay. It’s been ‘easy’ to know he might need a transplant SOMEDAY while not needing a transplant now. His first year with us was eventful, with travel, hospitalizations, and surgeries. We had a solid 3 years of relatively good health, and the ability to focus on other needs he has (speech, PT, sleep). You wouldn’t know he’s sick. He is a ball of charm and energy and is going at 110% at all times. I was given the impression that our trip to NYC for transplant evaluation was “very preliminary” and that there was still the possibility to try other interventions. That this was just to create a chart for him and get baseline information documented with the liver team. That was not the case. I can describe it only as an orientation. We had consults with each individual of the liver transplant team (2 of which know Ezra from his time in NY in 2019 - one is the surgeon that fixed him up then). Surgeons, infectious disease, nutrition, social work, cardiology, ultrasound, bloodwork, echo…it was a long few days for our guy. All this to say, he’s going on the list. His liver has been declining and since the summer he’s had bloodwork, ultrasound, endoscopy, MRI, and biopsy. There’s so much scar tissue (cirrhosis) that blood isn’t filtering through efficiently. This is putting extra pressure on other organs and can ultimately put stress on his heart and lungs. He has an enlarged spleen already. We are still early in the process and his surgeon shared with me the advantages to getting him on the list now - 1) he’s well, not in and out of the hospital, fighting infections, etc. This means that we don’t have to settle for the first liver that comes along. We can be choosy. 2) the longer he’s on the list, even if lower priority at first, the easier it is to get him bumped up based on length of time waiting. 3) we have time to find a living donor match, which may give us more control over preparing, planning, and scheduling. That said, Ezra can accept a living donor and we have a QR code that leads to a questionnaire for anyone that may want to consider donating. So, whether we have the luxury of choosing a date on the calendar, or we get a call at 3am on a Sunday that we gotta go, recovery is going to be a whole journey for our family. We are to expect about a week in the PICU following transplant. He will have follow up visits multiple times weekly for the first month post-op, then weekly for months 2-3, then every other week for months 4-6. He will likely continue to be seen in NYC 1-2 times per year indefinitely. He will be discharged from the hospital on somewhere near a dozen medications. His immune system will be suppressed. If all goes smoothly, we’ll be able to live at the Ronald McDonald House. Yes. Live there. Im worried for this little boy and what he’s about to go through. I’m worried for my kids who really can’t comprehend how our lives are about to change, even if temporarily. I’m worried for the logistics, finances, everyone’s mental and emotional health, and our littlest baby as well. We are going to be trying to put together a plan for when this happens, as well as hoping to have a ‘go plan’ for if things do happen suddenly at any point. We are grateful for our famil. Our support system. Our VILLAGE. We know that we’re going to need you more than ever and we are trusting that God will be calling you to tally around Ezra and our family in all the different ways. Any funds raised will help with travel expenses and supporting our guy through this." ---- second post: Oh, and the fund is now: "$2,782 raised of $100,000 goal" Edited January 26 by chongli 1 Quote Link to comment Share on other sites More sharing options...
chongli Posted January 26 Author Share Posted January 26 Here are two more twitter posts I found: 1 Quote Link to comment Share on other sites More sharing options...
BBFL Posted January 26 Share Posted January 26 The body is so very strange… 5 weeks after donating my liver 19 years ago it was at 97% it’s original size. Prior to that I was naive and didn’t do enough research to know that you can only donate your liver one time prior to passing away. Not saying I regret the decision but seeing as they refuse you to donate a second time I hope none of my children fall into the same situation as young Ezra where I can’t help their quality of life. I know there’s complications that can come with donation but if indeed the body can regenerate that organ it should be a choice for repeated donors… Maybe have a time frame between each surgery? 1 Quote Link to comment Share on other sites More sharing options...
BigAl2526 Posted January 26 Share Posted January 26 2 hours ago, BBFL said: The body is so very strange… 5 weeks after donating my liver 19 years ago it was at 97% it’s original size. Prior to that I was naive and didn’t do enough research to know that you can only donate your liver one time prior to passing away. Not saying I regret the decision but seeing as they refuse you to donate a second time I hope none of my children fall into the same situation as young Ezra where I can’t help their quality of life. I know there’s complications that can come with donation but if indeed the body can regenerate that organ it should be a choice for repeated donors… Maybe have a time frame between each surgery? Yeah, the liver is one organ, perhaps the only organ, that can be split and part of it donated. Both parts will then grow back to the original size. The donor candidate doesn't have to be dead. 1 Quote Link to comment Share on other sites More sharing options...
BBFL Posted January 26 Share Posted January 26 7 minutes ago, BigAl2526 said: Yeah, the liver is one organ, perhaps the only organ, that can be split and part of it donated. Both parts will then grow back to the original size. The donor candidate doesn't have to be dead. Very cool organ. They took like 40% of my liver for donation but I just find it strange they don’t let you donate a second time unless you’re dead lol 1 Quote Link to comment Share on other sites More sharing options...
scuba guy Posted January 26 Share Posted January 26 3 hours ago, chongli said: He hasn't been placed on the list yet, This is from the guy's wife: https://www.gofundme.com/f/ezras-liver-transplant [the liver transplant list stuff is bolded:] "Hi! I’m Karen, Ezra’s mom. I’ve been trying to gather my thoughts and process what is going on. When we were first called about this precious boy, the very little information given included the statement, “…he’ll probably need a liver transplant within the year.” We said yes to him, not knowing how long he’d stay. It’s been ‘easy’ to know he might need a transplant SOMEDAY while not needing a transplant now. His first year with us was eventful, with travel, hospitalizations, and surgeries. We had a solid 3 years of relatively good health, and the ability to focus on other needs he has (speech, PT, sleep). You wouldn’t know he’s sick. He is a ball of charm and energy and is going at 110% at all times. I was given the impression that our trip to NYC for transplant evaluation was “very preliminary” and that there was still the possibility to try other interventions. That this was just to create a chart for him and get baseline information documented with the liver team. That was not the case. I can describe it only as an orientation. We had consults with each individual of the liver transplant team (2 of which know Ezra from his time in NY in 2019 - one is the surgeon that fixed him up then). Surgeons, infectious disease, nutrition, social work, cardiology, ultrasound, bloodwork, echo…it was a long few days for our guy. All this to say, he’s going on the list. His liver has been declining and since the summer he’s had bloodwork, ultrasound, endoscopy, MRI, and biopsy. There’s so much scar tissue (cirrhosis) that blood isn’t filtering through efficiently. This is putting extra pressure on other organs and can ultimately put stress on his heart and lungs. He has an enlarged spleen already. We are still early in the process and his surgeon shared with me the advantages to getting him on the list now - 1) he’s well, not in and out of the hospital, fighting infections, etc. This means that we don’t have to settle for the first liver that comes along. We can be choosy. 2) the longer he’s on the list, even if lower priority at first, the easier it is to get him bumped up based on length of time waiting. 3) we have time to find a living donor match, which may give us more control over preparing, planning, and scheduling. That said, Ezra can accept a living donor and we have a QR code that leads to a questionnaire for anyone that may want to consider donating. So, whether we have the luxury of choosing a date on the calendar, or we get a call at 3am on a Sunday that we gotta go, recovery is going to be a whole journey for our family. We are to expect about a week in the PICU following transplant. He will have follow up visits multiple times weekly for the first month post-op, then weekly for months 2-3, then every other week for months 4-6. He will likely continue to be seen in NYC 1-2 times per year indefinitely. He will be discharged from the hospital on somewhere near a dozen medications. His immune system will be suppressed. If all goes smoothly, we’ll be able to live at the Ronald McDonald House. Yes. Live there. Im worried for this little boy and what he’s about to go through. I’m worried for my kids who really can’t comprehend how our lives are about to change, even if temporarily. I’m worried for the logistics, finances, everyone’s mental and emotional health, and our littlest baby as well. We are going to be trying to put together a plan for when this happens, as well as hoping to have a ‘go plan’ for if things do happen suddenly at any point. We are grateful for our famil. Our support system. Our VILLAGE. We know that we’re going to need you more than ever and we are trusting that God will be calling you to tally around Ezra and our family in all the different ways. Any funds raised will help with travel expenses and supporting our guy through this." ---- second post: Oh, and the fund is now: "$2,782 raised of $100,000 goal" Also see if you can find out Ezra's blood type would be more likely to find a living donor with more common blood types O positive or negative. Thanks 😊 1 Quote Link to comment Share on other sites More sharing options...
BBFL Posted January 26 Share Posted January 26 2 minutes ago, scuba guy said: Also see if you can find out Ezra's blood type would be more likely to find a living donor with more common blood types O positive or negative. Thanks 😊 Type O is considered a “universal donor” FYI. Though I believe if recipient if Type O they can only receive from Type O candidates. 1 Quote Link to comment Share on other sites More sharing options...
scuba guy Posted January 26 Share Posted January 26 (edited) 6 minutes ago, BBFL said: Type O is considered a “universal donor” FYI. Though I believe if recipient if Type O they can only receive from Type O candidates. Yes correct o neg universal donor. But in liver donations there are other factors also put if type o he has a much greater chance of getting a new liver. Edited January 26 by scuba guy Spelling 2 Quote Link to comment Share on other sites More sharing options...
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