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Mariel
Member
Username: Mariel
Post Number: 99
Registered: 02-2008
| | Posted on Saturday, May 25, 2013 - 09:46 pm: | 
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This family will be on CNN tomorrow Sunday, May 26 at 8:15am talking about their dying 10 year daughter being declined an adult lung. What recommendations and courses of action do you have for this family? They are a friend of a friend of mine. Thanking for taking the time to respond.
http://mobile.philly.com/health/?wss=/philly/health&id=208909461&viewAll=y#more
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr |
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Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 535
Registered: 01-2007
| | Posted on Saturday, May 25, 2013 - 10:57 pm: |
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I know that children can be offered a lobe from a living adult donor, such as the child's parents.
The children's hospital of philadelphia has a web site on this topic:
http://www.chop.edu/service/lung-transplant-program/home.html
http://www.chop.edu/service/lung-transplant-program/lung-transplant-waiting-list.html
Are this child's parents not a match, or are they not healthy enough to provide a living donor lobe?
I believe that a child with CF would need 2 lungs, so they would need two living donors to provide the necessary lobes.
This procedure is mentioned on the Mayo's site, but I don't know if they offer children lung transplants.
http://www.mayoclinic.com/health/lung-transplant/MY00106
Has anyone asked at the child's hospital what the medical reason the child was kept off the waiting list?
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Mariel
Member
Username: Mariel
Post Number: 100
Registered: 02-2008
| | Posted on Sunday, May 26, 2013 - 07:00 am: |
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The child Sarah has been on the waiting list for 18 months, but only has a few weeks left to live. She is #1 on the children's lung list, but due to UNOS allocation rules, she is denied the opportunity for adult lung donors, despite being in a life/death situation. Apparently lung availability are segmented strictly by age, even though they can do a partial lung transplant to accommodate smaller people/kids. Thanks for weighing in, Jay.
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr |
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Mariel
Member
Username: Mariel
Post Number: 102
Registered: 02-2008
| | Posted on Sunday, May 26, 2013 - 11:49 am: |
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Here is the CNN video on Sarah:
http://www.cnn.com/video/#/video/bestoftv/2013/05/26/exp-10-year-old-hopes-for-new-lung.cnn
Help me understand why lung patients get compartmentalized by age? Why doesn't the sickest patient go to the top of the list like liver patients do, regardless of age? Why make an age distinction, especially since you can have a partial lung transplant to better fit small adults and kids with pretty good success too?
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17699
Registered: 05-2003
| | Posted on Sunday, May 26, 2013 - 03:25 pm: |
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Hi Mariel
My mother told me today to turn on CNN and I could not see this story until I logged on and you shared this with us.
I will be praying that Sarah receives new lungs soon.
This is so sad. If an adult receives lungs that are too large they trim them down so why can't they do the same for children? There must be a medical reason for this.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17700
Registered: 05-2003
| | Posted on Sunday, May 26, 2013 - 07:57 pm: |
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Please sign this petition for Sarah
http://www.change.org/savesarah
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Tamara
Member
Username: Heppygirl
Post Number: 104
Registered: 05-2011
| | Posted on Monday, May 27, 2013 - 11:41 am: |
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Terrible that it has to be liket this! When I was on the transplant list (in the Netherlands, and also when I was on Hig Urgency International, which means HU in germany, belgium, and a couple of other countries) I was also on the childrens list because of my small size..
Tamara
26y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, September 2010
http://muffinmeetsworld.blogspot.com
Anywhoo... |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17701
Registered: 05-2003
| | Posted on Monday, May 27, 2013 - 01:46 pm: |
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I agree Tamara- there needs to be changes.
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Mariel
Member
Username: Mariel
Post Number: 103
Registered: 02-2008
| | Posted on Thursday, June 06, 2013 - 06:08 am: |
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YAY! Progress! A federal judge has temporarily allowed a dying 10-year-old girl to compete with adults on their waiting list for a lung transplant.
http://www.wsoctv.com/ap/ap/health/judge-backs-dying-pa-girl-who-needs-new-lungs/nYDDf/
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17718
Registered: 05-2003
| | Posted on Thursday, June 06, 2013 - 08:52 am: |
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Hi Mariel
I am so HAPPY
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17721
Registered: 05-2003
| | Posted on Thursday, June 06, 2013 - 05:31 pm: |
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I am sure we will be hearing similar stories in the news in the next coming weeks.
"The orders granted this week have given Sarah and Javier hope. But Sarah and Javier are not alone," Harvey added. "Doctors need donated organs in order to give new life to patients, and organ scarcity is a major problem in our country. We hope that Sarah and Javier’s stories will remind us all to become organ donors and, if we face the tragedy of the loss of a loved one, consider a directed donation of their organs."
http://vitals.nbcnews.com/_news/2013/06/06/18805140-second-child-files-suit-for-lung-transplant-gets-on-list
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Mariel
Member
Username: Mariel
Post Number: 105
Registered: 02-2008
| | Posted on Tuesday, June 11, 2013 - 11:06 am: |
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Sarah M also has a community page on Facebook: "Sarah will win fanpage"
Sarah is at the end stage of CF, intubated and sedated. But yesterday, OPTN lung-transplant rules were temporarily eased to provide a case-by-case avenue for sick children to receive an adult donor organ, a shift in policy that followed pleas from Sarah's family.
http://www.bloomberg.com/news/2013-06-10/u-s-organ-donor-committee-votes-to-ease-under-12-lung-policy.html
I pray it's not too late for Sarah.
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17740
Registered: 05-2003
| | Posted on Tuesday, June 11, 2013 - 01:08 pm: |
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Thank you Mariel
I know- She needs a miracle tonight.
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Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 538
Registered: 01-2007
| | Posted on Wednesday, June 12, 2013 - 10:20 am: |
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Sarah Murnaghan got the call!. Adult donor found, and Sarah is in surgery now.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17743
Registered: 05-2003
| | Posted on Wednesday, June 12, 2013 - 11:08 am: |
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Thank you Jay for sharing.
I am so HAPPY for her and the Murnahan family.
Please keep the precious donor family in your prayers.
God Bless all Organ Donors and their Precious families.
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Mariel
Member
Username: Mariel
Post Number: 106
Registered: 02-2008
| | Posted on Wednesday, June 12, 2013 - 11:36 am: |
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I was JUST gonna post! Thanks Jay for sharing the incredibly happy news! Pray that it all works out successfully so that she is a beacon of change for children awaiting lungs. I have GOOSEBUMPS!
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17744
Registered: 05-2003
| | Posted on Wednesday, June 12, 2013 - 12:47 pm: |
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Thank you Mariel
I said in my post yesterday, "I hope she gets lungs tonight" and she did!
We are united through prayer!
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Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 539
Registered: 01-2007
| | Posted on Wednesday, June 12, 2013 - 08:39 pm: |
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Her surgery took about six hours, and there were no complications resizing or transplanting the adult lungs, according to family spokeswoman Tracy Simon.
A statement said the family was elated and that the doctors say Sarah's prognosis is good.
"We expect it will be a long road, but we're not going for easy, we're going for possible. And an organ donor has made this possible for her," the family said, calling the family of the deceased person who donated the lungs "true heroes."
Sarah "did extremely well" and was in intensive care after the procedure, Simon said.
http://www.cnn.com/2013/06/12/health/pennsylvania-girl-transplant/index.html
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17746
Registered: 05-2003
| | Posted on Thursday, June 13, 2013 - 01:47 pm: |
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Hi all
I am so happy to see this news! I am very proud of the Murnaghan family.
On a personal note- I believe this story will inspire others to think about organ donation if they have never thought about it before.
I have never seen or heard of an organ donation story receive so much national publicity.
All we can do is share our stories within our communities and continue to give back and make a difference.
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Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 582
Registered: 12-2009
| | Posted on Thursday, June 13, 2013 - 04:20 pm: |
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I too am very happy that this girl has received her transplant, I do wonder if the balance of the lungs were used for another person, has anyone heard?
I agree with Rise that it is good that this story received the national attention that it did, it could have a very positive affect upon the whole perception of transplant, however I also fear that some may see bringing the courts into the picture as a way to speed things up - that would not be good.
Jack Hollenbach
Received double lung transplant August 2 & 3, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
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Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 540
Registered: 01-2007
| | Posted on Thursday, June 13, 2013 - 05:30 pm: |
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I am thrilled that Sarah got her lungs, but I am also torn by this story.
When a federal judge can make a medical decision about who should get a transplant, based on a lawsuit, does this also mean that people will begin to sue when a person is denied a medical procedure?
And, of course, we all know that if someone can jump a place in line, that also means that someone gets pushed down in line, which could potentially mean that the person who lost his place in line may die as a result. We know that there are many people who die while waiting.
This particular result was excellent, since OPTN will now rule on these decisions on a case-by-case basis, rather than having to follow a fixed rule based on age, but who knows where this will lead?
Medical ethicists are weighing in and many are voicing concerns about this decision.
This is just one of many stories on this issue:
http://www.politico.com/story/2013/06/sarah-murnaghan-organ-transplant-policy-92694.html
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17747
Registered: 05-2003
| | Posted on Friday, June 14, 2013 - 01:24 pm: |
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I hear you all
Whenever I think about this case, I see all different view points and they all make sense to me.
I pray that this story only impacts organ donation in a positive direction that as a result of so much media attention people who view this story actually discuss with their family members their opinions and wishes on organ donation.
I am not sure if you saw all the interviews but this family was called with several dry runs and one family of a child who was going to be Sarah's first donor changed their mind.
Shortly after an adult donor became available. Donor families do change their minds which in my opinion must be the most devastating for both families.
For anyone who is reading that is waiting for their new lung(s) please do not dwell on this. Spend your quality time raising awareness for the need for more organ donors.
Call your local newspapers tell them how much the Gift of Life means to you. Perhaps create a blog and find creative ways to spread organ donor awareness.
I would like to see more donor families share their stories and talk about their heroes who blessed so many people with new lives.
The more people who decide on the Gift of Life the more that people like us will be blessed with the Gift of Life.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17748
Registered: 05-2003
| | Posted on Friday, June 14, 2013 - 05:41 pm: |
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If you are very interested in this case please read this pdf file that explains this case.
http://optn.transplant.hrsa.gov/ContentDocuments/OPTN_Exec_Comm_mtng_materials_06-10-13.pdf
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Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 541
Registered: 01-2007
| | Posted on Friday, June 14, 2013 - 06:53 pm: |
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Thanks for the link, Rise'
Interesting in that it was a GOP committee that requested that Kathleen Sebelius use the power of the Federal government to order OPTN to change their rules.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17749
Registered: 05-2003
| | Posted on Saturday, June 15, 2013 - 04:15 pm: |
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while surfing the CF forums, I found this:
"05-31-2013, 11:05 PM #5
NathanL
Junior Member
--------------------------------------------------------------------------------
Join Date: Apr 2013 Posts: 7
I posted this on Facebook a few days ago about Sarah's situation, so it's not necessarily targeted at those on this forum, but hopefully it will still dispel some of the misinformation about what is really happening here.
Here are a few of my thoughts about This story as the husband of a two-time double lung transplant recipient. The following is simply my opinion based on over five years of being heavily involved in the organ transplant community. Please, do your own research and come to your own conclusions, but if you agree with what I have to say below, please consider sharing this with your friends in the hopes of saving more lives.
The bottom line with any crisis transplant story like this is very simple. There are not enough registered organ donors in the US (and around the world). We've all heard of the law of supply and demand...quite simply, the demand for organ transplants far outweighs the supply of organ donors.
By last count, 94.7 million people were REGISTERED organ donors in the US in 2010. If you consider that the population of the US is nearly 317 million, we can calculate that less than 30% of the US population are registered organ donors. Now, consider that many people who are organ donors will die in such a way that some or all of their organs will not be viable for transplant, and that 30% gets even smaller. Imagine if that number were closer to 100%? How short would the wait be then for Sarah and the other 120,000 people waiting for an organ transplant? Currently, 18 people die every day waiting for an organ transplant, NOT because of the system, but because of the unwillingness of others to become registered organ donors.
What complicates Sarah's case even more is that very, very few parents will choose to donate their deceased child's organs. Parents, understandably, have a difficult time thinking ahead about the possibly death of their own children, and therefore rarely consider whether or not they would give the gift of life if a child were to die. Because there is rarely any forethought, and because parents of young children are so incredibly distraught at the time of their child's death, very few make the decision when asked at the deathbed to donate their organs. All that being said, there is an even greater shortage of small organs.
The system in the US is not perfect, but it is MUCH closer to perfect than it was just 10 years ago, and it is the most “fair” system of it’s kind in the world. The most frustrating part about this story is not reading about how the system is broken, but reading the comments of people who have read the misleading information about this story and claim they’ll never be an organ donor as long as the system is “corrupt”. I appreciate that this story is being shared around the world, and I hope that it will bring awareness and numbers to the organ donor registry, but I do wish the media would do their due diligence and report all of the facts so that people are not so mislead.
The system is more “fair” that what people are being led to believe. I won’t blame Sarah's family for this...having worked with the media several times I know how hard it is for journalists and reporters to get all of the facts correct and to not dramatize things in a way that is misleading. I can understand better than most the desire that Sarah and her family have to do anything in their means to find those new lungs for her. But, the facts being reported are somewhat misleading and incomplete. For example, I’ve yet to see any of the reports about this story list the dramatically increased risks of giving a small child like Sarah adult sized lungs...lungs that are trimmed or cut for any reason are immediately and incredibly compromised. It’s not, as we are being led to believe, simply about giving adults the first dibs at adult lungs because “those are the rules”...it’s far more complicated and “fair” that that.
I'll end with this. Shame on anybody who has pity on this little girl but is not willing to be an organ donor AND ask those they know to become organ donors. I’ll be praying for Sarah and her family, and I hope you will as well. She deserves new lungs just as much as anybody else. BUT, if all we’re willing to do is pray, if you aren’t also a registered organ donor or willing to become a registered donor today, I have a hard time believing that your prayers will accomplish much. If you have offered to pray, to send money, or to sign the online petition for Sarah, are you and the members of your family also registered organ donor? Are you, as a parent, willing to donate your child's organs for other children like Sarah? Because ultimately, more than anything else, that is what Sarah needs.
Please visit the websites below for more information about organ donation and transplantation and to become a registered organ donor yourself today." written by Nathan
http://forum.cysticfibrosis.com/threads/53146-Who-will-join-me-in-supporting-Sarah-Murnaghan
http://www.unos.org/
http://donatelife.net/
http://www.organdonor.gov/
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