The mystery surrounding lung-transplant survival rates
There were more than 1,800 lung transplants in the United States last year, and 190 of those occurred in California, according to data from the federal Organ Procurement and Transplantation Network. A recent story in the San Francisco Chronicle takes a closer look at the challenges facing lung transplant patients and explores why a significant number don’t live beyond the five-year mark, despite improvements in survival rates.
Erin Allday writes:
Only about 55 percent of patients survive five years after the transplant. Those rates are better at Bay Area hospitals, where about two-thirds of patients can expect to survive that long. Nationwide, only a third of patients live 10 years.
It’s unclear what, exactly, goes wrong after the first year. Most patients die of what’s known as chronic rejection, which causes the airways of the lung to deteriorate slowly. Doctors don’t yet know how to prevent or stop that process.
“I started doing (lung transplants) in the early ’90s, and it was really primitive then, and it’s gotten a lot better. All sorts of things have improved,” said Dr. David Weill, director of Stanford’s Center for Advanced Lung Disease. “But we haven’t solved the mystery of that slow loss of lung function.”
Previously: Regular exercise may boost lung transplant patients’ heart health, quality of life and Given a second chance, lung transplant patient moves forward with gusto
November 1st, 2012 at 5:44 pm
I am a double-bi-lateral lung transplant receipitant. I had both sets transplanted in 1991 within 16 days of each other. My tranplant center is UPMC in Pittsburgh PA.
November 2nd, 2012 at 5:16 am
Most patients die off is terrible wording.
I would like to see some references to your statisticd
November 2nd, 2012 at 6:23 am
The statistics in this article are somewhat misleading. The writer failed to mention on MAJOR statistic which is: 100% of these patients would not have survived without transplant!!!!
November 2nd, 2012 at 4:10 pm
This isn’t a good article at all. We know what goes wrong, infection and rejection. We can prevent infections and that helps prevent rejection but you need to find a careful balance. Exercise is extremely important to long term success post-TX especially for patients with CF because mucus can collect in the new lungs and patients must make every effort to keep the new lungs clean!
November 3rd, 2012 at 9:27 am
I received my new lungs 5-25-04. I would have died from bacterial pneumonia
My center is St Louis. this article leaves the reader ill informed. Why take one stat and twist it to a negative! I hope you do more research on you next piece!
November 7th, 2012 at 3:22 pm
I am eleven years out on a single lung transplant living the good life of a writer and full time grandmother. I have written three books about my transplant experiences. All are available on amazon.com. This article is way too negative.
November 27th, 2012 at 4:28 pm
I received a heart & lung transplant at Stanford on 7/1/2000. I think I have survived partly through being a (former) musician, using music as a healing & calming force. I’ve always been careful about avoiding germs with my mask & having all the vaccines every year. I make sure I get Fresh Air every day. I have some inner sense of what I need to stay healthy, or at this point, alive. The doctors & nurses at SUMC have helped enormously.
December 19th, 2012 at 4:10 pm
I am a transplant nurse. I am also so glad to see so many posters are survivers of lung disease and doing so well with their transplants. Unfortunately in my experiences, and most of the research Ive encountered does support this article, as negative as it may be. Each lung transplant patient I have had over the years has passed due to chronic rejection. All of them performed at the Cleveland Clinic.
January 14th, 2013 at 7:01 am
My Mother just celebrated 9 years on a single lung transplant. Her breathing is somewhat labored now , she is 68 years old but still doing good.
January 18th, 2013 at 4:32 am
Dear Cindi; Your mom was 58. Why did she need a transplant. I am wondering what criteria was used at 58, which I’m am so glad to hear. I read mostly about much younger candidates. Thank you.
January 20th, 2013 at 4:02 pm
I agree that this article is too negative to help me in any way except to be cautious. My new lungs (received in St. Louis due to cystic fibrosis) are over 14 years and still serving me extremely well despite chronic rejection for about 4 years. Breathing the outside air deeply still feels like a luxury! I’m a teacher and choose to work only 3.5 days a week to allow plenty of time for physical/mental/spiritual health care. I do not wish to always be “busy” like so many around me. My husband is also a huge support.
January 22nd, 2013 at 11:04 am
I am a 46 yesr old man who is diagnosed with pulmonary fibrosis.I have been referred by my Dr. for lung transplants,Honestly I do not know if I should or shouldn’t.This is a scary time in my life. On one hand common sense says go for it. On the other hand the risk is so high I think living a few moare years in my current condition isn’t a bad choice. I just don’t know.
January 23rd, 2013 at 6:32 pm
Greg…My partner had pulmonary fibrosis and had a single lung transplant 9 months ago at The Methodist Hospital in Houston. The change is amazing! He’s so glad he did it. He’d not be around now if he hadn’t done it. I encourage you to speak to transplant recipients one-on-one; speaks to docs too of course, but speak to the folks who’ve had it done. They have the perspective.
January 30th, 2013 at 7:12 am
I am currently on the lung transplant list. I have bronciectasis and cant breath without oxygen. I cant wait for my new lungs and will do the best i can at taking care of them. i will let you know how it goes.
January 30th, 2013 at 2:30 pm
Exactly Greg! I’m 47 yrs old. I don’t know what to do. My Dr. told me to start thinking about transplant. I have bronciectasis, NSIP and asthma. Basically pulmonary fibrosis. Currently on Oxygen for exertion. I’m from Canada, would it make a difference to get a second option in the States?
February 10th, 2013 at 7:20 am
Greg and Alana, I am 43 and have been on O2 for 18 y due to pulmonary fibrosis which is the result of aspirating on gasoline. I have been assessed for tx, but must lose about 30 lbs. I too wonder about all the negativity surrounding transplant. I am alive today, and may be for the next 18 y, but I am now on 8 lpm at rest and 30 lpm for exercise. This is not “quality” life. I want to run, swim, and play with my grandchildren. I think I’m gonna “roll the dice” and go for it! Good Luck!
February 25th, 2013 at 4:58 am
Hello Lola, Alanna and Greg…I’m a 47 yr old woman who was diagnosed with Idiopathic pulmonary fibrosis in October 2009. I was blessed enough to be placed on the list and ultimately receive a double lung transplant in feb 2012 at Temple Lung Center in Philadelphia, Pa For me there was very little hesitation to choose transplantation. I was on 8 liters of oxygen and just carrying my car keys was a struggle. I admit that yes, there are lots of things to consider for every individual but in the end it came down to this for me: Was I willing to exchange a condition I couldn’t live with for a couple of conditions that I could live with? A resounding yes was my response. Now i have high blood pressure and recently, diabetes. Both are managed with medication, diet and exercise. I am also working daily, exercising and enjoying my 18 yr old daughter along with family and friends. All in all, life is great. Join me.
March 5th, 2013 at 5:48 am
I think that you should do what ever is going to benefit you in the long run.
March 7th, 2013 at 3:54 am
I am a 44 year old male in the UK with Idiopathic Pulmonary Fibrosis who is about to start the assessment process for lung transplantation. I’ve responded well to Prednisone, Mycophenolate and N Acetylcysteine. I feel pretty good although it is a hard disease to live with. My lung function results show progression and in my laymans eyes point to a five year timescale after diagnosis. I’m currently in year 2. I will need a transplant. Ideally i’d like to get as much life out of my own lungs as possible and then be fortunate enough to have a transplant at the right time. In reality though I’ll have to make the jump before then. I’m not scared or phased in fact I’m quite positive about my future. I wish everyone here the very best.
March 14th, 2013 at 9:47 pm
Hi i am a 27 year old male who did a double lung transplant 6 years ago due to CF. My lungs are starting to reject and i will be put on the list very shortly here for another TX.wondering if there is someone out there who has done this and is it worth it.I STRONGLY believe the first one was worth it.wish everyone all the best,,,
March 25th, 2013 at 7:54 am
Hi..I’m writing on behalf of my brother. He is 36 years old,, he is currently in the hospital in I.C.U…..dx is Pneumothorax. The doctor says his lungs look like swiss cheese but he does not recommond a lung transplant ????????? because most people only live for 5yrs. We r looking to change his doctor but have no idea where to begin.
Does anyone have any suggestion? ?
Thank you in advance,
Feeling hopeless in NJ
March 27th, 2013 at 1:20 pm
Im a52 yr.old female n had a lung transplant evaluation at sahnda 7yrs.ago with 20% lung capacity..im now felling more fatigue n using 4 on o2 but ive been in alot of paun for the past 3 months around my ribcage n back..so i have decided to go to florida hospitol n do another evaluation bc i cant live in this pain n with o2 all day..i knw its a hard desicion but i have made 7 yrs extra..so wish me luck everyone n i wish everybody the same
April 2nd, 2013 at 2:46 pm
I was diagnosed with IPF four years ago. I had a very aggressive version of the disease and was on O2 very soon. Because of my poor condition it was very hard to get on a transplant list. Last year at the age of 47 it finally happened and I got my double lung tx at UPMC. It was a hard decision to make and the recovery was very hard. Doctors and even patients can be quite glib about lung transplantation but it is a very serious endevour and anyone considering it should educate themselves as much as possible. I have been very lucky and my situation has worked out for the best but I do respect those who decide that tx is not for them.
April 6th, 2013 at 1:55 pm
Milton thanks for writing. Its great to hear that
someone has lived 23 years on a lung transplant. You made my day! I had my double lung transplant 3-1/2 years ago. I am currently 47yrs old. The first 6 months was not easy but these last 3 years have been great. For me this was an easy decision as my Sarcoidosis(Originaly diagnosed with NSIP) progressively got worse and it was clear when I was down to 25% levels that a transplant was realy the best option. Now that I have had my Txplant I cross my fingers every visit to the Hospital as there are no signs of rejection. The 5 year average is a little misleading because a lot of us don’t make it past the 1st year. For those that do the average is more like 8 years. I wish everyone the best and hope science will come up with a cure or some other option for organ rejection. Kenya I do not know what the survival rate and prognosis is for Pneumothorax so please weigh your options. Your Brother is 36years old so when you consider your options he should much more likely to handle the transplant and if so 7-8 years is more like the average for him. Best of luck and God Bless all.
April 18th, 2013 at 11:56 am
Hi,
My father was diagnosed with IPF in 2008. Now he is on 3 lpm of O2. I want to know is this the right time to get transplant done?
April 30th, 2013 at 11:32 am
I am a cystic fibrosis patient 16.5 years post lung transplant. I had living donors.
May 7th, 2013 at 5:37 pm
Milton Congrats at 23 Years ..! I am out 18 years Dblt from University of Min/ Fairview University
Alpha 1-antitrypsin deficiency
Work Everyday Driving City Bus..
May 11th, 2013 at 4:54 am
My husband was diagnosed with IPF in 2009. He received his new lungs September 26 2011. He was 59 years old at TP. This is not an easy process and having a support system is vital. He is doing very well 18 months out. Back to work full time for over a year now. He is a man of deep faith which sustained us all through this. We found out last week he has chronic rejection and treatment begins next week. We don’t know we what the future holds but we do know he would not have had this time of good health without TP as his IPF was killing him quickly. Deep faith, strong family support and a positive outlook is vital in the transplant process. He would do it all over again. Good luck and Godspeed to all in your decision about TP. We can’t say enough about the wonderful Doctors and staff at IU/Methodist in Indianapolis. Simply the best!
May 18th, 2013 at 5:43 am
Am from Srilanka & searching reg the lung transplant for my loving 34 years old sister. doctors advised to do the transplant as soon as possible, but unfortunately , my country does not have good facilities for the surgery.
can you please tell me the cost you spent for a lung transplant …. this would help me to find the money as heard it cost alot…. pls
May 18th, 2013 at 2:43 pm
I was diagnosed with IPF in 2004 after 3 years of being misdiagnosed. Once I was correctly diagnosed, I stabilized for several years, however, periodically, I would have a crisis and land in ICU. Gradually deteriorated until in 2010, when i was using 10 lpm of o2 at rest and over 20 with exertion. TX was an easy decision for me because I knew I didn’t have much time left. Had TX in July 2010 at age 64 at university of Utah Medical Center. Recovery was difficult because I was so badly debilitated when TX was done. Was it easy? NO. Was it worth it? ABSOLUTELY! Nearly 3 years post now, and no regrets. I know it is a harder decision for those who are are still fairly functional. Just know that recovery may be more difficult if you wait too long.