Lung transplant rarely prolongs life in CF
Reuters reports that lung transplantation in children with cystic fibrosis (CF) is not likely to prolong life and may do more harm than good, according to a look back at essentially the entire U.S. pediatric experience with lung transplantation for cystic fibrosis for the period 1992 through 2002.
According to a report in November 22 issue of The New England Journal of Medicine, a total of 248 of the 514 children with cystic fibrosis who were on the waiting list during the 10-year-period underwent lung transplantation.
"Children undergoing lung transplant did much worse than expected," Dr. Theodore G. Liou of the University of Utah, Salt Lake City, told Reuters Health.
"We fully expected, at the start of the study, that we would find a group that did well and others that did not do so well. Unfortunately, we found that the group that most likely did well with transplant was very small, while the group that most likely did poorly (worse than if not transplanted) was quite large," Liou said. Read the full article.
"Young Heart Transplant Patient Released From Hospital"
WKRN in Nashville, Tennessee posts this story about 12-year-old Jordon Hensley, who was fighting for her life just weeks ago but danced her way out the hospital doors Wednesday afternoon just in time for Thanksgiving. Read the story.
Transplant patient's heartfelt thanks
The Mercury News in San Jose, California has a wonderful story about Mary DiMaggio of San Jose and the Larrañaga family of Mondragon, Spain, who will not understand each others' words when they meet next month in Spain's Basque country. DiMaggio speaks no Spanish and no Basque. The Larrañagas know little English. It won't matter. The American and her Basque hosts share the alphabet of tragedy and the syntax of hope. They will talk in the language of the heart.
DiMaggio, 63, a woman with the sallow complexion of a long-time patient but the sturdy frame of a swimmer, is pushing herself to endure the long air flight for one overriding reason: gratitude.
Since a Stanford University Hospital transplant in August 2003, she has been kept alive by the heart of the Larrañagas' only son, Gaizka, who was killed in a traffic accident in Reno at the age of 32.
DiMaggio is telling her story publicly to remind people of the need to donate organs. "To be able to thank these wonderful people is just unbelievable," said the San Jose woman, whose husband, Horace, is a second cousin to Joe DiMaggio, the famous Yankee slugger. "Believe me, I wouldn't get on a plane just to go to Spain." Read the story
Young Hungarian heart transplant patient returns home
Caboodle.hu reports that eight-year-old Balázs Lőrincz from Babócsa (Somogy County), the first Hungarian child to receive a heart transplant, has returned home from the hospital, reports hirado.hu. He has to live under sterile conditions but is reported to be in high spirits and making a good recovery. Read the article.
“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”
2 comments:
Hey Merv!!!
All of these headlines about young CF patients not benefiting from transplant have been kinda hitting a sore spot for me -- I've also seen some rebuttals from CF docs and transplant centers saying they're absolutely false and that they're not analyzing data in an appropriate way...
Here is a note I submitted on another discussion on this topic:
One thing I seem to notice is that these articles claiming lung transplant is little help for a CF patient, particularly those under 18, is that they seem to equate success with longevity -- I think that is a wrong tac...
Life expectency for a CF patient is currently in the mid 30s... Yes -- a CF receiving lungs will likely still not make it to their mid 30s... But lung transplant survival for any condition pretty much sucks... On average (young, old, CF, other disease) sadly, 5 year survival is 50%... 10 year survival is probably somewhere between 10% and 20%... Granted, the study quoted mentioned that CF youth 5 year survival averages 33% and is markedly lower than average -- but average is still none-too-good... And, the CF patient who receives these lungs at 15, would almost certainly have not made it to 16...
Beyond longevity -- quality of life is an issue... In the several years before transplant, these patients are typically drowning in their own secretions -- and they likely have never, ever known what it was like to breathe "normally"... A new set of lungs may just give them 2-3-5-10 years where "normal" breathing feels freakin' AMAZING to them...
Yes, it is an expensive procedure with expensive follow up -- but the care while you watch them die is quite expensive too... I know that the transplant cost is beyond the cost of watching them die -- but I'm guessing that it's not several times beyond -- being hooked up to a ventilator, then dialysis and having organ after organ fail while you're family hovers over you in the ICU can become incredibly expensive... And for some reason, many of us CFers seem to be fighters and death doesn't come quickly or easily... We've been sparing with it for years already and we've been stronger than it is...
Their quote about only 5 of 514 "lived longer" as a result seems a little confusing... lived longer than what? CF life expectency? Than they might have if they skipped the procedure?
I'm not a child -- I'm 47 3/4 -- but I am a CFer and I had a bi-lateral single lung transplant 7 3/4 years ago (two lungs...) After struggling for 40 years, this breathin' stuff just blows my mind... I still think about it every day, even after 7+ years... I think it would have been fully successful if I'd gotten 2 or 3 years as well, but I'm glad I've gotten more...
I think that this perspective might make more sense if they simply claimed that lung transplant as a whole was not worthwhile -- I think it would be just as false -- Survival rates for any underlying condition in lung transplant are lousy, and not as good as they will be in the more distant future -- but after watching a young CFer toddling around on oxygen, still maintaining the strength to smile at you and engage you -- the thought of giving them a few, or several years of live with a seemingly amazing ability to breathe for the first time ever, to me, seems worthwhile...
Sincerely,
Steve Ferkau
Chicago, IL
CF / Double Lung Recipient
(but not young...)
www.ClimbingForKari.org
Thanks for your insights Steve. Hopefully others will read them and continue the discussion. Congratulations on your successful transplant and survival. The statistics are averages and I personally know several lung transplant recipients still going strong after 16 years. One lady will be celebrating her 22nd year tomorrow, November 26th. Merv.
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