Sarah Murnaghan has cystic fibrosis and needs new lungs to save her life.

[DizBelle]

Even if an exception was made for this particular child, it doesn’t save her. If you’re a CF child and you need a transplant so early in life, unfortunately, you are not going to live very long. I can’t fault these parents for wanting a few more years with their child. It sucks that they skirted the system, but grief is weird.

What would her life expectancy be if she got a lung transplant? Exactly how much more life will she gain?

 

[minkydog]

I have a friend whose 30yo DD has CF. She got a set of lungs 18mo ago. Unfortunately, she began rejecting in Oct. She spent most of the last 6mo in the hospital befor she died in April.

I have another friend who got a kidney 2yrs ago, started rejecting within 6mo. He has been so very sick. He had the kidney removed last month and is back on the transplant list.

Getting the transplant is only half the battle.

 

[crashbb]

What would her life expectancy be if she got a lung transplant? Exactly how much more life will she gain?

Really hard to say. About 50% of CF patients who receive new lungs are alive 5 years after transplantation - some are still alive 15 years later and some die very shortly after transplant.

But, median values only give you a very general idea. For example, median age of survival (without transplants) is about 37 years (or was when I was doing my PhD - which would be using data from about 2009). That doesn't help this 10-year-old. We do know that this little girl is among the most severely affected by CF (CF has a wide range) - it is quite rare for a child to be at the stage that a transplant is needed.

Although the lungs won't have CF, Sarah still does. So, she has all the other CF issues. Also, some of the CF infections are likely still in her body and the new lungs are prone to being attacked (especially with the post transplant immunosuppressants).

But, there is always the hope that even a few years buys enough time for a cure or better treatment to be found.

 

[pigletgirl]

Really hard to say. About 50% of CF patients who receive new lungs are alive 5 years after transplantation - some are still alive 15 years later and some die very shortly after transplant.

But, median values only give you a very general idea. For example, median age of survival (without transplants) is about 37 years (or was when I was doing my PhD - which would be using data from about 2009). That doesn't help this 10-year-old. We do know that this little girl is among the most severely affected by CF (CF has a wide range) - it is quite rare for a child to be at the stage that a transplant is needed.

Although the lungs won't have CF, Sarah still does. So, she has all the other CF issues. Also, some of the CF infections are likely still in her body and the new lungs are prone to being attacked (especially with the post transplant immunosuppressants).

But, there is always the hope that even a few years buys enough time for a cure or better treatment to be found.

Isn't 5 years about the "norm" for a lung recipient? Or can it be a lifetime for how long the lungs are "good" for?

 

[Tinker'n'Fun]

I know each organ is different. My father had a heart transplant. At the time he received it the paperwork did have a section with life expectancy so yes the transplant team did evaluate that in the process.

My father's life expectancy was 5 years at the time. He lived almost 8 years before he passed. He received his heart call 15 minutes after my son was born. So I can remember the dates very well.

My father remained in CICU for over 6 months and is was just around 9 months before he left the hospital. He spent every single day on medication that made him feel like crud. But he had the undying will to stay alive. He absolutely feared death, more than any quality of life one can have. He suffered through medicine induced diabetes, medicine induced prostate cancer, and finally dialysis. His life was something I could never ever do. But it was his choice as an adult. He was miserable to everyone except his drinking buddies and my children. I know that the bonds they made with him were a miracle. I did not know any of my grandfather's and the bond was and still is something I can not even comprehend.

Please remember these parents are fighting for time that is NOT and WILL not be the same child. There are some transplant (Kidney comes to mind) where some live much more of a normal life.

My sister is unable to recover from the experience we went through from the initial disease to the horrible time we lived after it. Trust me when I say more than one life was lost that day.

Again, I can only wish the best to the family and the challenges that face them. Death is a process that no one treats the same. It took me years to even become an organ donor. I know that seems backwards. We should be the first you would think. After living through the experience I couldn't be on the list with a clear conscience. I am now as I have been able to reconcile everything and process.

This is another reason why last minute court rulings are so against every grain of my being. I am going to be a broken record - please take time to do some research. Even if it is just a few articles.

 

[roomthreeseventeen]

I know that the bonds they made with him were a miracle. I did not know any of my grandfather's and the bond was and still is something I can not even comprehend.

Sorry to hear about your father, but I am glad for your son's sake that he was able to get the transplant. My grandfather died when I was 8 as well (from Lou Gherig's) and while I have lots of wonderful memories with him, my younger siblings have fewer, and missed out on knowing a great man.

 

[CPT Tripss]

Does a patients projected life expectancy after the lung transplant factor into their priority on the list?

Doesn't appear so . . . http://optn.transplant.hrsa.gov/resources/professionalResources.asp?index=88

 

[Hoodie]

Bumping this because she's being prepped for her transplant. After waiting 18 month on the pediatric waiting list, she is set to receive adult lungs after 1 week of waiting.

 

[HeatherC]

Just saw this on CNN and Fox. But they just said she was being prepped for surgery and made no mnetion of whether it was an adult or childs lungs. Where did you hear adult? Just curious...

 

[Hoodie]

One of the news reports I heard was that they were adult lungs.

I'm sure we'll get the full story at some point.

 

[TLSnell1981]

Little Sara is out of surgery and her prognosis is good. The doctors said, the surgery went extremely well. Hopefully, there will be no complications.

 

[Sunnywho]

ETA: I was an organ donor, until we discovered that I have a rare genetic disorder that makes my organ bad for me, much less for transplant. But my wife, sister, and parents are all organ donors, and I am proud of them.

I also was an organ donor until I had to take myself off the list for similar reasons. I think if you are willing to be an organ recipient, then you should also be willing to be an organ donor. I am willing to be an organ recipient if the need arose.

All the best to Sara. Good news today about the surgery. Absolutely the mom was right to go to the media with the story. You do all that you can do for your children.

 

[Brownsfan317]

Just a couple of thoughts:

1. I find no fault in the parents filing a lawsuit to fight for their child. They are doing what they feel are in the best interest for their child. I would fight just as hard for my own.

2. If her doctor has decided that she is able to take modified adult lungs but is not on the adult transplant list, doesn't that make it unfair to her? To me, that seems that although medically she has been cleared, policy is in the way.

3. It saddens me to hear that people would chose against organ donation. No program is perfect. By choosing not to donate (when medically ok'd to), it does not hurt the Human Service Secretary or Congress. It hurts someone's DAUGHTER, SON, BROTHER, SISTER, MOM, DAD, FRIEND. Certainly everyone is entitled to chose what happens with their own body and I don't think negatively about anyone who choose not to be an organ donor. I do wonder though if a healthy person who chooses not to be an organ donor and is so against it would feel the same way when facing the transplant list. Do you say "no thank you" when you need that kidney or lung or heart because you are so against organ donation?

I am grateful to the families that had to make that tough decision. My dad no longer has to sit through dialysis three days a week and watch as others die because they kept waiting for the match that never came. (He did not get his kidney because of money or any other unethical way either ). Although we lost my husband, it gave us months with him not on dialysis three days a week and quality time with our son (4 years old at the time) that he will never have again.

 

[Mokat76]

Nothing against Sara, but someone else probably will die because her parents did what they did. I don't think that's right. Who are they to say their child's life is more important than that of an adult waiting for lungs? That said, I hope the child has a good life.

 

[roomthreeseventeen]

Little Sara is out of surgery and her prognosis is good. The doctors said, the surgery went extremely well. Hopefully, there will be no complications.

I think this is misleading. Very few people with CF (like none) have a good prognosis.

 

[sacall]

I think this is misleading. Very few people with CF (like none) have a good prognosis.

Not true at all. My daughter has CF, her prognosis is very good to live a long life. There are people currently living with CF well into their 70's. Please visit cff.org for information. With new drugs and treatment options for patients with CF, it is not the death sentence it used to be.

Stacy

 

[roomthreeseventeen]

Not true at all. My daughter has CF, her prognosis is very good to live a long life. There are people currently living with CF well into their 70's. Please visit cff.org for information. With new drugs and treatment options for patients with CF, it is not the death sentence it used to be.

Stacy

Data from the CF Foundation Patient Registry, a tool that tracks health statistics from patients treated at CF Foundation-accredited care centers, shows that more than 45 percent of all people with CF in this country are 18 years or older. Also, the Foundation calculates the median predicted age of survival for people with CF. This number is based on a statistical method of using life table analyses developed by insurance companies to calculate trends in survival.

In 2009, the median predicted age of survival was in the mid-30s. The median predicted age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2009.

 

[Octoberbride03]

I think this is misleading. Very few people with CF (like none) have a good prognosis.

She will have a much better prognosis with her new lungs than if she had not received them. She would very likely have died THIS WEEK without them. She was fast approaching the point where she would have been too ill for the surgery.

As for her CF while the transplant didn't cure it, She will be able to live a much more normal life with them. Lung transplants for CF are not new and a very effective treatment for those who need them. I used to do fundraising for CF so I am thrilled for Sara and her parents.

 

[sacall]

Data from the CF Foundation Patient Registry, a tool that tracks health statistics from patients treated at CF Foundation-accredited care centers, shows that more than 45 percent of all people with CF in this country are 18 years or older. Also, the Foundation calculates the median predicted age of survival for people with CF. This number is based on a statistical method of using life table analyses developed by insurance companies to calculate trends in survival.

In 2009, the median predicted age of survival was in the mid-30s. The median predicted age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2009.

We should add rest of the article:
What is the life expectancy for people who have CF (in the United States)?

There is no way to accurately predict how long a person with cystic fibrosis will live, as many different factors affect a person’s health. Severity of disease and time of diagnosis are two such factors. Many people have a mild case of CF, while others can have moderate or severe cases.

In addition, some adults with cystic fibrosis have only recently begun to use new treatments, while an infant diagnosed at birth will have the advantage of starting specialized treatments that were not available even a decade ago.

Data from the CF Foundation Patient Registry, a tool that tracks health statistics from patients treated at CF Foundation-accredited care centers, shows that more than 45 percent of all people with CF in this country are 18 years or older. Also, the Foundation calculates the median predicted age of survival for people with CF. This number is based on a statistical method of using life table analyses developed by insurance companies to calculate trends in survival.

In 2009, the median predicted age of survival was in the mid-30s. The median predicted age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2009.

The steady rise of the median predicted age of survival suggests how improvements in treatment and care are advancing the lives of those with CF. In 1955, children with CF were not expected to live long enough to attend grade school. Today, thanks to continued Foundation-supported research and specialized care, an increasing number of people with cystic fibrosis are living into adulthood and leading healthier lives that include careers, marriage and families of their own.

So, why you say, and I quote, "Very few people with CF (like none) have a good prognosis" - that is not true at all. MANY have good prognosis, my daughter being one of them.

Stacy

 

[Octoberbride03]

Nothing against Sara, but someone else probably will die because her parents did what they did. I don't think that's right. Who are they to say their child's life is more important than that of an adult waiting for lungs? That said, I hope the child has a good life.

That's not her parents fault, and the sad fact is someone had to die on Tuesday so she could have them. It is the nature of the beast that they did not create. She was at the top of the list and every adult on that list had a lower score than she did. So odds are they could wait.

But bottom line is the list of who's on is determined by UNOS. If I know my child's life can be saved but isn't simply because of an age number I'll fight to change it, not just for my child but for everybody. Wouldn't you?