Sunday, March 21, 2010

Many Days, Much News, None of it mine!




So CFSTeph got her lungs!! After a minor bump in the road, she is doing very well and hopefully was up and walking today!! Then, Piper got the call this morning but was not sent into surgery. Her wonderful, honest telling of the tale is HERE, and I encourage you all to read it. Reminds us that when it is not our time, it is someone else's time. Something good for me to remember.

I have been busy as a bee getting read for my reading . I have been shipping out the books, and picking out the poems to read- so exciting! I would love input on which poems to read, so if you have thoughts on that, leave them as comments, or email me at cysticgal@gmail.com . Don't have your book yet? So sad for you! You can buy it HERE. Copies are going fast! I only have 1/2 of the inventory left already!! YAY!

Here is a posting from Piper's blog that I would like to share with you, have a wonderful Sunday. -CG

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.

3 comments:

  1. Whaaaaaat? I thought that since CF was in a person's DNA that the new lungs would get CF too! Wow. Thanks for posting this. Wow.

    ReplyDelete
  2. Yep, thanks for commenting, Lucy :) Since the new lungs have someone else's cells and DNA, they won't ever contain the flawed cell structure that is present in CF. A lot of people don't realize, CF is not a lung disease, it's a cell disease. Our cells have defective sodium chloride (salt) ion regulation- which creates all of the problems!! No bad cells, no disease. :)

    ReplyDelete
  3. Hi! I was just looking around for bloggers like me and came across yours. My name is Katrina and I have CF & CFRD and am waiting for a double-lung transplant too. I read that recent stats you posted about people with CF on the national waiting list, and realize I'm one of the few who are over 34 on the list. I'm 39 right now, and will be 40 in June. Very interesting. I had looked on the UNOS database before, but I didn't see those stats. Thanks for sharing & wish you the best!

    ReplyDelete

Thanks for commenting! Your comment will be posted ! -CG