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Seeking A Living Liver Donor

Please read until the end, and please be patient with me while I ramble because when I'm emotional my thoughts are all over the place.


I feel like I should put a "Trigger Warning" for my mom and sisters because this post talks about Noah and transplants...


This is a hard week for my family.


All of our FB memories are posts praying for Noah, begging to find a match, and bad news after more bad news. In two days the FB memories will be of my mom announcing he's earned his wings. Pictures of my mom and sister holding him while he stopped breathing. Friends and family sharing old photos of him and stories about how his life touched theirs.


Yesterday my FB memories pulled up a post about how guilty I felt praying for what felt like the death of a child just to save Noah.


This morning I did a photo shoot for a family at the request of one of my friends (who knows this family) after I shared the following FB post from her (my friend's) page a couple of weeks ago about this family.


I shared it because two days from now, two years ago, we lost my little brother while he waited for a transplant match that never came. If you don't know his story, you can find a small piece of it here.


& I wish I didn't know what it feels like to feel like you're praying for someone else's death so your loved one can live and the guilt that comes with the hope and the fear that comes with each passing day a match isn't found, but I do.


Amanda's FB post, the one I saw and shared, read;


Dear Family, Friends and Acquaintances,


I am writing to share the story of my husband, (Joe Brogden), and ask for your support and help. Joe is in liver failure due to an auto-immune disease, PSC (primary sclerosis cholangitis), which he was diagnosed with roughly two years ago.


Joe needs a liver transplant. Joe has two choices: wait for a liver from a deceased donor or find a living donor. Joe has been placed on the deceased donor transplant list through Piedmont Hospital in Atlanta, Georgia and has been evaluated at Duke University Hospital for a living donor candidate. It is unknown the length of time he will wait to receive a liver from a deceased donor, due to the lack of availability for that organ. He is already very sick and will only get much sicker while he waits. Joe’s doctor at Piedmont Hospital and the team at Duke Hospital said his best option at this time is to have a transplant from a living donor, because the transplant can happen sooner and spare his health from continued decline.

People with liver disease’s unfortunately have no medical therapies that can supplement or treat them while they wait for a transplant. So as one waits for a liver, their disease only progresses and deteriorates them more.


A living donor can be anyone who is healthy and volunteers to donate. They must have a blood type that is compatible to his, which is O. In a living donor transplant, the doctors remove a portion of the donors liver and transplant it into him. Within three months, both the donor’s liver and Joe’s liver will have regrown to the normal size.


I hope someone will consider being a living liver donor for Joe.


To learn more, or to be reviewed as a potential living donor, you can contact Olivia Pruett at Piedmont Hospital at (404) 605-2960 or Kristen Lott at Duke University Medical Center at (919) 613-7777.


I never thought I would be asking for this type of help.


With my whole heart I thank you.


You can see the original post here share it to your FB as well. As of right now it's been shared 185 times already, but not to the right person just yet. Which is why I'm writing this blog post.


Because posts about Noah were shared thousands of times, and because of that many people reached out to me offering to be tested to be a living donor. I even had someone message me asking if it was possible to donate a lung to him. I had to keep explaining to people that as much as we appreciated the offer ("appreciative" is a word that doesn't feel like it carries the exact weight of how we all felt) that because Noah's wasn't strong enough for two transplants, it had to be a deceased donor - so he could get both lungs and a new liver at once.


& that didn't happen.


But.


Noah became a donor. He changed lives while he was here on Earth and he saved them as he left us.


I want to encourage every single person who follows me or my family on social media and who followed Noah's story and grieved with us to consider honoring him, and kids and people like him, by checking to see if you're a match for this man. & if you're not for him... for someone else. #BecauseOfNoah






This man has a seven year old (the same age as my kids), a five year old (who likes Barbies like my girls do), and a wife who need him.


& he needs a new liver.


Currently, he's on the wait list for a deceased donor. & I'm praying that if he can't find a live donor that a match is made sooner than later, and in time no matter what.


& I'm right back to feeling guilty for praying for one life over another.


But then I remember that every single day there are car accidents, and drownings, and people have heart attacks. People die every single day. But not every single one of those people let their family know they want to be donors. They don't tell their loved ones to let their last act be to be a hero, like Noah's was, and they don't all register to be organ donors.


So many more lives would be saved if more people were registered donors.

Noah's life may have been saved.


& I know not everyone can be a match for this man, this father, this husband.

But most of you can be donors - you just have to register here.


Some of you reading this are thinking, "No way. If the hospital knows I'm a donor they won't try as hard to save me." & that's simply not true. How do I know for sure? Because Noah had doctors and specialists in multiple states including the National Institutes of Health and Chapel Hill - where doctors would have crossed paths with potential matches for Noah often. If doctors allowed others to die to save their favorite patients - Noah would be here.


That's not how that works.

My girls are donors.


When we were in the NICU there were tiny babies waiting for tiny organs and my girls weren't supposed to live. I remember thinking they could be donors for other babies. I'm thankful they are here and I didn't have to follow through with that like my mom had to for Noah. I'm thankful I have them, and I'm also thankful my mom and sisters know that someone else still gets to hug their kids another day because of him.


I'm a donor, and have been since HS.


& I'm not afraid that because of that a doctor won't try to save me.


What I am afraid of, today, is that this family will have to watch their husband and their father's health deteriorate like we watched Noah's do while they wait for a match, when they just need to get their story and their request seen by the right person.


A person willing to reach out to the people mentioned in the post (who's information I'll share again at the bottom) and willing to undergo surgery and the uncomfortableness that comes with recovery (Google says a donor can expect to spend seven days in the hospital and recover for 4-6 weeks after) to save a man's life and to spare his family from loss. But, for sure reach out to these people for more information about that;


To learn more, or to be reviewed as a potential living donor, you can contact Olivia Pruett at Piedmont Hospital at (404) 605-2960 or Kristen Lott at Duke University Medical Center at (919) 613-7777.


I would give anything to have found a match for Noah in time. Anything.

So many of my friends and family feel the same way.


We couldn't save him, no matter how many posts we shared or how many people wanted to see if they were a match.


But we can help save this man.

& meeting him and his family almost exactly two years after we lost Noah feels like God nudging me to do something.


So this is my attempt to do so.


Please, please, please make a phone call if you even think you're compatible with O blood (his type).


Because of my heart problems and my reactions to anesthesia I can't (even if I'm a match) - but I can share his story and ask all of you to do so as well so that we can connect him with a living donor sooner than might have happened otherwise.


You can share his story with your friends and family even if you can't donate part of your liver, too.


& you can register to be a donor after you pass and save a life, or several, 80 years from now.


#AllForNoah - because of him I can't just scroll past posts asking for help saving a loved one.


<3








I also want to share my thoughts on the guilt that comes with loving someone on a transplant list and praying for their life - because I know that other friends/family who have been through it felt the same way and they've reached out to let me know I wasn't alone in the guilt and I hope that this sweet family can not feel guilty for praying for their husband and father to find a donor this way if a living match isn't found.


I've been thinking about it a lot this week, because the guilty feeling has been replaced with something closer to anger; anger that comes from not understanding why a match for him couldn't be found in time.


June 12th, 2019


I hope the family that will one day make a tough call after losing their child knows that we are not praying for the death of their child when we pray that transplant happens soon.


I hope those parents know that our family has spent months talking about them and praying for them. Praying for their strength in a moment that hasn’t happened yet. Hurting for them - and we don’t even know them. We just know that the day we get the best phone call of our lives will mean someone else is having the worst day of theirs.


& that reality isn’t lost on me. It isn’t lost on my family.

We’d never pray for anyone to lose a child. Not a person in the world deserves to bury their baby. We aren’t praying for anyone’s death - even though sometimes I feel guilty because it FEELS like we are. People, even children, die everyday for 5839292 reasons. We are praying for those families - for the families who will already be losing a child. Most statistics online show an average of 20,000 teen and child deaths a year the last few years in the United States. (According to sources like this one - https://www.sciencedaily.com/rel.../2018/12/181219191100.htm).

Not every child is eligible to donate organs... but of 20,000 - many are. & those are the families we are praying for. We’re praying that IF a child has already died and IF their parents are able to and IF they choose life for others that THAT child is a match for THIS child that we love.


We are praying that every time a child is involved in an accident or tradgedy strikes that the parents of that child are able to say, “Yes - we will donate organs,” when asked to do so in the middle of the worst moments of their lives so that children like Noah can get past the worst moments of THEIR lives. I can not imagine making that call. I honestly just can’t. But I will if I have to one day because I will never forget how it feels to watch Noah live through this chapter of his life.


We are desperately praying for families that say, “Yes,” to organ donation and we are praying that of all of those families saying, “Yes,” everyday - that one of those children is a match for Noah.


We are praying that sooner rather than later one of those children is a match... but we aren’t praying for a child to die “just” to save Noah’s life. It’s a hard thing for me to wrap my head around - but I hope parents of children on my friends list who have passed and donated organs know that nobody wanted their child to die. That the families’ who had their lives changed by organ donation have probably spent time crying for you and your loss. They feel guilty for celebrating that their child will live because of new organs.


I feel guilty when I pray for a miracle for Noah.

We don’t want another child to die. We want Noah to live. & we understand the reality of what it means for him to get new lungs and a liver and none of us take it lightly.

So when I ask for prayers for a transplant for Noah - please know I’m not asking you to pray a child dies, either... but I am asking you to pray. Fervently.



Please pray fervently for the Brogden family, now.


& to be reviewed as a potential living donor, you can contact Olivia Pruett at Piedmont Hospital at (404) 605-2960 or Kristen Lott at Duke University Medical Center at (919) 613-7777.


Because nobody should ever have to say goodbye to a loved one just because they couldn't find a match. Ever.


& pray for my family and Noah's friends. Especially my mom and sisters, because this week is particularly hard for them. & for Sawyer.


Tomorrow feels like a good day to take the twins to get a new Pusheen and talk about how funny Noah was and how good he was at hide and seek.


Pretty sure Noah would agree.










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