Monday, July 1, 2013

My Thoughts On The Lung Transplant Policy Change

****DISCLAIMER – I am not a doctor and I am just expressing my opinion on the recent news of the lung transplant policy change regarding Sarah Murnaghan**** 

I was debating to blog about all this lung transplant policy change for children and decided I will give my OPINION.  As I am not a medical professional, this post is coming from what I have read online (I know not the best source) and also my very own opinion on this policy change.  

If you are not familiar with this recent lung transplant story in the media here is my summary.  Sarah Murnaghan a CF sufferer is 10 years old and is in need of a lung transplant as her CF had progressed to end stage life.  Sarah was listed on the PEDIATRIC transplant list.  In order, to be on the adult transplant list you have to be 12 years or older.  Sarah and her family were waiting for a pediatric set of lungs to become available. The issue about being on the pediatric transplant list is that there are very few pediatric donors and the chance at receiving a second shot at life is not as high as being on the adult list.  

Sarah’s parents took it upon themselves to do whatever they could to get Sarah listed on the adult list as they were told Sarah wouldn’t make it much longer.  In order for Sarah to be listed on the adult transplant list the family filed suit against the 11 and under rule.  A federal judge granted the policy to be overturned in favor of adding children to the adult transplant list on a case by case basis.  On June 11th the OPTN/UNOS executive committee approved a revision to the national lung allocation policy affecting transplant candidates age 11 or younger.  The policy basically allows a lung transplant program to submit a request to a national lung review board for a candidate 11 or younger to have an additional listing, at the same hospital for adult/adolescent lungs based upon the candidates Lung Allocation Score.  The Lung Allocation Score (LAS) is calculated based upon a series of formulas that take into account statistical probabilities of a patients survival post transplant as well as current health status.  Basically the sicker you are the higher your LAS score will be.  

The decision by the OPTN does not mean that children 12 and under will automatically go to the front of the transplant line.  They will also not receive special treatment just because they are children.  This simply means they will now be placed on the same list as everyone else based upon the severity of their illness just like people 12 and over are listed.  Sarah’s LAS finally mattered and she was now able to get that chance of a second shot at life.  Her LAS in her region was close to 100 (the scoring system is 0-100) which placed her as the sickest in her region.

In fact, Sarah got the call for her second shot at life and received her new adult lungs on June 13th.  Unfortunately, the lungs failed a few hours after the transplant as the lungs were of marginal use according to some internet sources.  People can debate if that was due to the fact that the doctors had to trim the adult lungs to fit Sarah.  Sarah was then put on life support until June 15th  when another set of adult lungs became available.  The issue with the second set of lungs was that the donor lungs had active pneumonia. The lungs needed to be trimmed as well to remove the pneumonia and fit Sarah’s chest cavity.     

Both sets of lungs were high risk especially the set that had active pneumonia.  In my opinion, the transplant team would not have used either set of these lungs unless it was a critical situation.  In this case, Sarah was in a critical state and needed to have any method available to save her life.  The Children’s Hospital of Philadelphia is ranked nationally as one of the best children’s hospitals in this country and are very well known around the world in transplant success.  These are some of the best doctors when it comes to transplants and why would we not trust their medical judgement.   

Currently, Sarah is in the fight of her life trying to get off the ventilators and preparing for extubation.  She will have surgery tomorrow to help with this extubation process.  Sarah has what is called a partially paralyzed diaphragm due to the transplant surgeries. All I can say is that this child has been through way to much for a 10 year old.  She is supposed to be enjoying her summer break and running around with her friends.   

So that is the groundwork for this post but I also want to talk about what I have read about people commenting on news articles relating to Sarah and her transplant.  I was shocked actually to read that many of the comments were negative. I understand that everyone is entitled to an opinion but some of these comments are over the top. They range from anywhere stating that Sarah has CF, even if the operation is completely successful…..well even if all future operations are successful……..she won’t live past 20. It is like using a bucket to remove water from a sinking boat. You’re buying time…..that’s all.  Or the comment of a lung transplant will only buy you 5 years of life.  When I read these comment I couldn’t believe that there are actually people out there who believe that giving the gift of life is not worthy if you do not make it past so and so age.  That is why people donate organs so they can give tomorrows to people.  No one should count the number of tomorrows because not a single tomorrow is ever guaranteed.  That is what Sarah’s parents want, the opportunity for tomorrows for their daughter.  Not only do Sarah’s parents want tomorrows WE all want tomorrows in this CF community.  

As far as Sarah cutting in line on the transplant list or taking the lives of two other adults potentially life saving lung transplants I am not buying that.  Sarah was put at the top of the transplant list because of her LAS score not because she was in the media. She was the sickest person on the list that is all that needs to be said.  No one knows the outcomes of any medical procedure until its performed in life. You have to put your faith and trust in the professionals who make these medical decisions that they are the right decisions for all parties involved.

So how do we make sure everyone on the list gets a second shot at life? Well if anyone invents a way to grow lung tissue in a lab that can be transplanted with no side effects they would solve this problem.  But until that day happens, WE all need to find ways to make this list as short as possible.  If you are not an organ donor you need to become one.  You don’t need to bring your organs with you when your gone. Plus why wouldn’t you want to give people a shot at more tomorrows?

Lastly, in my opinion the number one way to eliminate this CF lung transplant list is to make CF stand for CURE FOUND.  We are very close to seeing the light at the end of the tunnel with the exciting news from Vertex and the magical pill Kalydeco.  But the Kalydeco pill is NOT a cure.  We still need to keep the drug pipeline funded through the generous donations from individuals who want to see a cure for this disease.  Just remember the more people who are aware about CF the better off our community will be.

*** I hope I represented the transplant community well on this post.  I would love to feature a guest blogger who is either going through the evaluation for transplant/ is currently on the transplant list/or has had a lung transplant. Also, if anyone would like to share their thoughts either agreeing with me or disagreeing with me I invite you to be a guest blogger. I would love to feature you as well. Leave me a comment and I will let you know how to get a hold of me. ***

Shame on me! I didn't document the sites properly throughout this post. But I put the sites below that I did use:


  1. Well, here it is mid July and Sarah is still fighting for her life. Adult lungs aren't meant to be cut down to fit children and once you cut lungs down, they will not grow as a child grows. She is going to die. Except, because the transplant protocol was overridden by a judge and her parents, she will now suffer greatly before she dies. That is the problem most of us have with this. We aren't against another day, but when you know tomorrow comes at great risk and isn't guaranteed at all, and you know that your tomorrow involves suffering and not living, at what point do you say it isn't worth it? Children don't do well with adult lungs. Sarah is now on a ventilator, a feeding tube and is bed ridden, you know.... Life support. I don't have a problem with Sarah. I have a problem with Sarah suffering only to die because her parents thought she shouldn't die because they don't like the idea. It's kind of sick from a parental point of view-- I don't care if you suffer as long as I can say you are alive.

    I hope you are well.

    1. John, Thank you for this thoughtful and inspiring blog. As for Sarah Murnaghan's situation, I agree with the comments made by "Anonymous." This child's mother has done untold damage to the organ donor cause. Janet Murnaghan, launched a public relations campaign and lawsuit so that her daughter could receive a double-lung transplant. When the surgery failed, the mother (not the doctors) insisted that the organs were marginal and demanded another set for her daughter. Mrs. Murnaghan concealed both the failure of the first transplant and the donation of the second set from the public until a slip-up forced her to admit that there had been two operations. This child is still on a ventilator. She has suffered through four operations in less than four weeks and lives in agony. Why would anyone want to donate an organ that might go to the person with the most expensive lawyers and savvy pr campaign? This is especially so, given the child's prognosis, which is grim. The parents do not realize that they have transferred the pain of losing their daughter onto the little girl's shoulders, by insisting that Sarah endure one painful procedure after another and for what? In order for her to grow to adulthood, assuming no other complications arose, she would need at least two more double-lung transplants and she would still suffer from a chronic illness. I have deep sympathy for the difficulties these parents are going through in trying to save their daughter's life. But their grandiose sense of entitlement and selfish unwillingness to let a dying child go, is distressing. This incident has nudged people like me to reflect on contemporary society’s inability to accept the natural cycle of life and death. Medical science is a blessing to us all. But there has to be a balance between prolonging life and knowing when it is time to let go.