Saturday, March 20, 2010

Because Inquiring Minds Want to Know

Some Real Facts about CF and Transplant:
  • As of March 12, 2010 (the last published data update), there are 274 CFers on the national organ transplant waiting list. 248 of these CFers are awaiting double-lung transplants. 30 are awaiting liver transplants. (Source: Organ Procurement and Transplant Network Data)*
  • 153 of these CFers are in the 18-34 age group. Of the remaining 121 cystics-in-waiting, 72 are older than 34 and 49 are younger than 18. (Source: Organ Procurement and Transplant Network Data)*
  • According to the CF Patient Registry, nearly 1,600 people with CF have received lung transplants since 1991. (Source: CFF. Note: I have no idea what the end-point on this data is, although I know it to be at least 2003 or later.)
  • Living lobar lung transplants (where part of a lung is taken from each of two living donors and transplanted into the recipient) is still an option for some people with CF. In 2003, 17 people with CF received their miracle from living donors. That same year, 126 CFers were blessed with the gift of life from deceased donors. (Source: CFF)
  • As many as 90% of people with CF are alive 1 year after their double-lung transplants. (Source: CFF. Note: I'm again unsure of the date for this statistic, aside from the fact that it is 2003 or later. The average survival rate after transplant continues to increase as newer and more effective treatment options and transplantation techniques are developed.)
  • After transplant, the new lungs will never again "have CF." People with CF who receive transplants will still have CF in their pancreas, sinuses, intestines, liver, sweat glands, and reproductive tract. (Source: CFF)
  • Almost everyone can be an organ donor. There is no medical condition, age, or race that automatically excludes you from all potential organ donation (even HIV positive people can donate to others with HIV, for example). All major religions in the US support organ and tissue donation. (Source: Donate Life America Fact Sheet)
  • You can register to become an organ donor in your state here: Donate Life America
  • People with CF living after transplant can: run half-marathons, be professional athletes who have carried the Olympic Torch, follow their dreams as an actress, raise children, get married, become "Heroes of Hope," volunteer, have careers, finish school, write a book, make a movie, learn to surf or scuba dive, live for 20 years (and counting) after their surgery, make a difference, ski down or hike up some of the tallest mountains in the country, advocate for other patients with CF or chronic illness, or...well, you name it, we do it. (And yes, I honestly know -- or know of -- people in every single one of those categories.)
And, the coolest fact of the day by far...
  • One of my personal blogger friends with CF received her special gift of life last Wednesday night! So make that 273 people on the waiting list!
*Note: These statistics count the total number of candidates, meaning that individuals listed at multiple centers are counted only once. Also, I am including the table below due to issues with the source link for this information. All data can be found in its original form by conducting a search on the United Network for Organ Sharing website, and is compiled by the Organ Procurement and Transplant Network. The first column represents total numbers; the third column represents liver candidates; and the seventh column represents lung candidates. All other columns represent additional organs, including pancreas, kidney, heart, and intestine, as well as multi-organ transplants.

Cystic Fibrosis All Ages

1-5 Years

6-10 Years

11-17 Years

18-34 Years

35-49 Years

50-64 Years


  1. Thanks for removing Steph from the waiting list!! She will like to see that when she recovers!

  2. awww 1 child in the 1-5 age group is waiting :( so sad :(

  3. Must Re Post on my blog and might even use to introduce the reading on Friday!! Love you!

  4. I keep hearing about your blog from a few other blogs so I wanted to stop by and say hello to a fellow cyster. :]

  5. Cool summary. Thanks so much for the hard work :)

    Here's a summarized survival table link that gives a bit more info but may be a bit older than the CFF:

    Of course this was for results inclusive of pre-LAS data and only through 2006. I'm guessing rates are getting a bit better since then.

    The lung chapter of the 2008 report is also a good read

    I may be preaching to the choir but figured the links might be good to share.


  6. I'm so happy and privledged to be one of those people who have received transplant!! Double lung and liver at that! The statistics are amazing...thanks for sharing. You will get your turn soon and there will be one less CFer on the waiting list! Love you!!