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The mystery surrounding lung-transplant survival rates

The mystery surrounding lung-transplant survival rates

Updated 3-3-14: This story and video focus on living long-term with transplanted organs and discuss why some transplant patients exceed standard expectations.

***

11-1-12: 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

118 Responses to “ The mystery surrounding lung-transplant survival rates ”

  1. Milton Hart Says:

    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.

  2. Sally maddox Says:

    Most patients die off is terrible wording.

    I would like to see some references to your statisticd

  3. Ed Rosemann Says:

    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!!!!

  4. Alison Says:

    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!

  5. Bette Omeara Says:

    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!

  6. Shirley Jewett Says:

    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.

  7. Joyce Steinlauf Says:

    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.

  8. Marie Says:

    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.

  9. Cindy Says:

    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.

  10. Barbara Says:

    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.

  11. Anne Says:

    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.

  12. greg Says:

    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.

  13. Brian Says:

    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.

  14. diana gainsville, florida Says:

    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.

  15. Alanna Says:

    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?

  16. Lola Says:

    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!

  17. Wendy Says:

    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.

  18. Raven Says:

    I think that you should do what ever is going to benefit you in the long run.

  19. Jan Says:

    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.

  20. Henry Says:

    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,,,

  21. Kenya Says:

    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

  22. jolanda..orlando florida Says:

    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

  23. lp Says:

    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.

  24. Stewie Says:

    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.

  25. Deepa Says:

    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?

  26. Maria Says:

    I am a cystic fibrosis patient 16.5 years post lung transplant. I had living donors.

  27. Dan Says:

    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..

  28. Kelly Says:

    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!

  29. Natalie Says:

    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

  30. Mary Says:

    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.

  31. Nancy Says:

    Natalie: I had double lung TX at UCSF in 2011. The assessment process is long and taxing. They do not list you unless you have 6 months or so to live. The total bill for my stay was $980,000 BEFORE the insurance discounts, and that does not include all the testing for the evaluation. My insurance negotiated what they would pay for the TX, so perhaps you can do that too. I wish you and your sister well.

  32. Gloria Says:

    My husband was diagnosed with UIP 5-10-12 and we have now begun the process of trying to get on the transplant list at Barnes Jewish in St. Louis. It will be a 4 day testing to see if he is healthy enough to receive new lungs. This will be the very end of July and 1st of August. Can any one tell me what their life and health is like since getting a transplant, please? There is no cure or treatment for this disease and transplant is the only option for survival however it is still frightening. I’m afraid of nearly everything right now so any words of experience would help with the fear of the unknown. Thank you

  33. Gloria Says:

    Deepa:I don’t know much I’m new here and looking for information too but I want to say have faith in your fathers doctors they will know when the time is right. I know it’s easier said than done but they are the best at what they do and will not give you bad advice. My thoughts are with both you and your father and wishing you good news and good health.

  34. Swati Says:

    Natalie, I am from india and will be taking my mother to Chennai’s Frontier Lifeline hospital for lung transplant. The surgeon who operates there has performed close to 100 transplants at Pittsburg, US. The cost is approx Rs 1,000,000 (about USD 18,000). It’s the next best option at a fraction of the cost as traveling to the US with this condition is next to impossible and the expense is beyond many of us from the subcontinent.

  35. Katie Says:

    For Henry: I am a Cystic Fibrosis patient who has had two lung transplants. My first double lung transplant lasted two years and ten months. My second transplant was living related on April 28, 1999. It is definitely worth it to be re-listed. The last 14 years have been amazing. As people say a transplant is trading one set of problems for another but, I would much rather deal with complications from transplant than any other options. Good luck!

  36. Ami Says:

    My son received a double lung transplant at the University of Minnesota in 2006 at the age of 8 and then a liver tx in 2007 at age 9 1/2.

    Sadly, as the transplant nurse above said, these statistics ARE accurate. Frightening, I know. Pediatric tx numbers for 5 year survival are at about 55%. He had his 7 year anniversary on those lungs this February.

    As thrilled as I am that he has passed that 5 year mark and has made it to 15 years old, I must still be realistic. The numbers will continue to fall. The disease that destroyed his precious organs once has twice returned, with one recurrence being again in his lungs.

    I do not see lung transplant as a lifelong fix. What I do see, however, are the past 7 years we were given with our son that we would not have had otherwise. And we move forward. Keep him from getting lazy (little gamer that he is), make sure he’s taking his meds, and remind him to treat the precious gifts he was given with the love and respect they deserve. That is the best thank you he can give to the parents who gave of their own children so selflessly.

  37. rukhmini Says:

    i am fron india, my husband is detected with high chest infection and is asked to have a transplant, doctors have lost their hope and say that transplant will hardly increase life expectancy to 2 to 3 years. but i still have hope, he is a soldier and went from many bad conditions before and survived, his recovery rate is abnormally high but i know there are limits to human body. i am so scared, i cant lose him we are just married two months ago,please suggest me every possible way to save him, medical and divine both.. please pray for my husband.. i love you pankaj, god bless you.

  38. Allison Says:

    I am a heart-lung transplant of 25 years: 3/30/1988. UPMC. I chose not to go to Stanford because they were concerned with statistics. Looks like they still are.

    Each person in unique. If you are waiting for a transplant, do not be alarmed with statistics. Just prepare mentally and physically. You will be fine. The main objective is to enjoy your life. There will be a new set of obstacles with a transplant due to medication, but it is worth living.

    Finally, we will all pass away, but I am glad that I took the risk to get the transplant, and I live for two people. I am forever grateful to my donor. So many blessings.

  39. Ted Says:

    I had a single lung txp at UCLA in 7/2001 as a result of COPD. I’m now 72 and never expected to live this long. I’m doing great and feeling better that I did 10 years ago. Just keep a positive attitude, exercise regularly, and have a good support group.

    There are scary incidents and a lot of medicine. Just live each day as a reward for going through the process.

  40. Sue Says:

    My husband had a double-long transplant in 2008 due to lung damage from burns in a car-fire. He is doing great and has recently started working full time. He went into supposedly ‘chronic rejection’ 3 months after his transplant. However, he started sitting up for 2 hours after eating. A slight acid reflux was causing the rejection. His FEV1 went from 1.2 to 3.0 in four weeks. The Drs were amazed and we thank God for this miracle. That was 4 years ago!

  41. Rick Says:

    I am going on 3 years post double lung TX and I am having a lot of reflux. My Hospital is The Methodist Transplant Center in Houston TX.

    Now my doctors want me to get a “Nissen Fundoplication” operation. I watched this surgery being don on Youtube and so far I am saying No Thanks.

  42. Barbara Says:

    I had a single lung transplant and last fri.
    marked 16 years. I cannot do much but still alive
    to enjoy my show dogs

  43. Melody Says:

    My 62-year-old husband received his double lung Tx at UCLA in 2006 after suffering from IPF. He is now 69 and in chronic rejection. His initial recovery was difficult and he was hospitalized for two months. He is thankful every day he received his transplant. I think important for the family to remember, it’s sometimes a difficult journey, but life was the only choice for us.

  44. Laquita Says:

    My 30 year old daughter received a double lung transplant at UT Southwestern St. Paul on 31 December 2010. The first week she has some issues with the medicine so they changed her anti-rejection medicine. She then had a great recovery and went back to work 4 months after her transplant. She enjoyed life. Went on vacations, spent time with her dogs, friends and family and did very well. She never had rejection or infection. Four weeks ago she started having shortness of breath. They are now doing a workup to see if she is a candidate for another transplant. Hopefully she will be approved. I know it will be difficult but The first transplant was a perfect choice and the second one will be worth what she has to go through. It has given her 2 years and 8 months more life and hopefully another she will live to enjoy more of what the good Lord has in store for her. Considering the options she and I feel that both are worth it. She has had 2 years 8 months longer than she would have and we have had the pleasure to have her in our life so we pray to keep her longer!!!

  45. Devra Says:

    My father is 67 and had a single lung transplant march 7 th 2013
    He also suffers from idiopathic pulmonary fibrosis . At lease now he only has
    One bad lung. I am sooo thankful that my father was given
    A second chance or he would not be here today.

  46. Marcy Volk Says:

    Today my husband,Peter,celebrates his one year anniversary date with a new set of lungs. He had his bilateral lung transplant at UCLA performed by Dr Ardahali….his pulmonologist is Dr David Ross director of the UCLA lung transplant program. Peter was diagnosed with IPF in Sept 2010…he was on 6 liters of oxygen; by the time he had his transplant on Sept 7, 2012 he was on 15 liters of liquid oxygen and failing fast. This post is to give hope to people who are contemplating whether or not to get a lung transplant. If you need it….DO IT!!! After Pete’s transplant there were some bumps along the way but he has not suffered any rejection. First, educate yourself…read, read and read some more…ask questions and do everything your dr says. Yes, it’s scary but you can do it!! Be vigilant in your care both at home and at the dr’s office…if you read something that your dr hasn’t mentioned ask about it…Personally, I don’t pay attention to the statistics…I have heard of too many people hitting 15 years plus with new lungs…If you need more information or support go online…Pete belongs to a couple of support groups on Facebook regarding IPF…and Lung transplantation…surround yourself with positivity and people who have been through it. It’s a miracle, really. Special thanks to UCLA no. 5 in the nation and no 1 in the west….A wonderful, knowledgeable group of professionals who only want the best for their patients….God Bless!

  47. Tom Stitt Says:

    My wife received a life saving double lung transplant at UCSF in February 2013 after 1 year on the waiting list. She lived with lung disease for over 30 years. We also went through a successful round of treatment for antibody mediated rejection at UCSF thanks to research by Duke, UCSF and others. To put any lung transplant outcome or survival rate data in context requires embracing 3 key things: 1. Lung transplant trades one form of lung disease for another disease – let’s call it transplant disease – that extends life but requires constant care and monitoring; 2. Every lung transplant patient had and now has different risks, pre and post-transplant complications and post-transplant care environments – outcome comparisons need to take each patient profile into account; and, 3. As my fellow transplant care giver Claire likes to say “Lung transplant is not for sissies.” Claire, her husband Scott and I are both still mourning the recent loss of our mutual transplant friend Ed Davis. As the article points out, compared with other forms of organ transplant, lung transplant is still in the early stages of medical research and practice. And unlike other organ transplants, post-transplant lungs remain exposed to the environment. Finally, lung disease is not a “popular” disease in terms of research funding, celebrity awareness programs or prevention efforts. We’re proud to be part of the ongoing lung disease and post-transplant life quality research programs at UCSF.

  48. Gail Clark Says:

    I was 59 years old with COPD & had a bi-lateral lung transplant on July 10,2010 At Duke Univ Med Ctr. At that time I had 11% lung function & unknown before the surgery I was in complete heart failure. Dr Duane Davis said I would not have lived more than a few more days. I have had several bouts with A! acute rejection but other than that I have not had a sick day since my surgery. I am thrilled that I was able to have my transplant & feel blessed everyday. I feel great & can do whatever I want to do.

  49. Debi Lou Says:

    I am just over one year with my double lungs.. I am doig wonderful.. yes, the survival rate might be five years at least, but that includes all kinds and ways of death.. (accidents, drug, etc) I have meet many that are over the 10 year mark.. dont try and discourage this wonderful advancement in saving someones life.. it is a miracle and I would not be here today if not for a wonderful unknown donor …

  50. John Waltrich Says:

    I received a double tx in 2010 due to a bag of what I thought was heroin. It was talcum powder and destroyed my lungs. I have been clean 4 yrs. I am 60 yrs. Old. After tx I immediately started a DEDICATED yoga routine, at LEAST once a day, but usually twice. Pilates once a week. Two regular strength conditioning classes. Two aerobics classes every week. I have the highest PFT numbers U of Penn has ever seen. I feel great! Anyone needing to get some insight into TX and the process as well as post-TX recovery can e-mail me at johnwaltrich@gmail.com.

  51. ike martinez Says:

    Hi, I have had ipf since 04′ it has gone up and down for years till recently. Now I’m on 8 liters resting at home but still working. Use 5pulse while driving and 15liters to recover when I drop. I’m going through the tests and hopefully will get the transplant soon. To all that have had a transplant and to those who are waiting good luck. I think I will enjoy my next Faze in life.

  52. elly Says:

    My dad has ipf . He’s 65 years old and on 3 ltr continuous flow. Doctor told him the onlyway is to get transplant at duke or stanford as they has higher sucess rate it true? Btw how much it probable cost? I heard its about usd 1 million ??? Is there anywhere cheaper but also have bingger sucess rate?

  53. Ce Ce Says:

    My dear friend Alice lived 12 years with a single lung transplant due to alpha 1 antitripsin deficiency. She exercised daily with treadmill, stationary and regular bike, walked, hiked and kept active even when her lung capacity deminished with chronic rejection. She passed this spring following a brief infection. She inspired me and all who knew her at Emory med center. She was in her late 60s and not able to have another transplant. They originally gave her three years life expectancy. Go all you curve breakers. Live life to the fullist.

  54. Renee Rasmussen Says:

    Hi,

    My husband had a heart/double lung transplant on April 1, 1988! It has been an up and down road but he is doing amazing and we are so thankful he was able to get the transplant! It was done at Stanford University hospital. Don’t give up and don’t listen to the negative news!

  55. Rose Wilkinson Says:

    I will be 65 in June. I have no other medical problems than COPD. I have heard that people 65 and older are not really considered for transplant due to age. Does anyone know if this is true? I’m on 2-4 liters depending on what I’m doing. I would give anything to be able to just do normal things. garden, go to grocery store, dance.
    I live very close to Cleveland Clinic- and was assed there in 09. But I’m down to 30-25% lung capacity. Hope I am not to old to be a candidate.

  56. Jim Barrentine Says:

    I was 63 when I received a single lung transplant 3 years and 9 mos ago, I would tell you to get yourself evaluated and go for it. It will change you in ways you can’t believe.

  57. wendy Says:

    @Rose, my father just had a transplant at 69, they have no age limit at UT Southwestern St. Paul as of now. Best of luck to all of you!

  58. Grant Says:

    I have CF, I had a double lung transplant in
    Edmonton Canada April 2012, thE Decission was easy, slowly
    Die with zero quality of life or get a transplant. I can say the
    Experience is marvelous it is so wonderful to breath with no
    Effort. Thank yiu my donor and The LT team in Edmonton, you
    Are the BEST

  59. Kiki Says:

    Reading all the above, I never listen to statistics for good reason they are just that!, people are not textbook we all respond differently to any eventuality life throws our way mentally and physically. I have alpha on antitrypsin in 2009 the gave me 2 years max to live and would have listed me there no then for a double lung transplant I was 48 year old with a 22 per cent fev, I couldn’t walk or breathe I was effectively dying, I turned it around bought a dog and walked topped doing what harmed me and go myself working on beating my prognosis , I am 52 my fev toy is 42 per cent I was and feel I had a chance again , keep focused and positive I never give up or in and although I can’t stay this due to the nature of my disease I keep going, I know one thing here had I been able to go through on 22 per cent I would of regardless of stats, and I would have been internally grateful when that door of life starts to close you gab a handle on another one quickly, when my time comes again 5 years or not I am going to open that door and get me through it as quick as I can, unusual for a alpha one patent to receive one lung?, to lady above who posted wondering was this due to her bing older?

  60. Pam Barnette Says:

    Houston Methodist Hospital will evaluate you

  61. Diane Says:

    To Rick(from July 15, 2013: find out why your doc wants you to have the operation! My husband has UIP, and will be on a transplant waiting list soon I hope. How did he get UIP? Silent GERD (acid reflux). Doctors won’t tell you there is a medically proven connection between GERD and fibrosis but I know for certain the cause of my husbands fibrosis. He ate a pack of Rolaids a day and the docs heard me tell them this all the while they were trying to find a diagnosis and a cause. Ironically, to present my husband as a tax candidate, he had to have the test that showed, what do you know….acid reflux,

    3 years later, inflamation turned into fibrosis, no cure, option: transplant!

    Would hate to hear your new lungs were damaged needlessly.

  62. Teri Klewin Says:

    Dr. Weill from Stanford performed mg double lung in july2006, I’ve had a number of unrelated Heath issues since, but my lungs are doing fine and am living a good quality of life in Arizona.

  63. Sandra Says:

    My brother was diagnosed with IPF in February of 2013. By July, they gave him 2 weeks to live. He was going into pulmonary distress regularly. He, by nature, has led a very sedentary lifestyle. After going on the transplant list at Methodist Hospital-Houston on August 8th – they had a donor by August 9th. It was actually 7 hours after hitting the list. They did a single lung transplant. He has not been able to do much of anything since. He was hospitalized 4 months and recently got out.
    He seems to either have a fear of the pulmonary distress or really shortness of breath at all times. He is still on 3L of oxygen and more to move around. He has had fluid drained off the new lung on 2 different occasions and it continues to build. He will not get up for about ‘anything’. The family continues to tell him if he doesn’t move the fluid is going to cause pneumonia. We wonder if there was some type of brain trauma going without the oxygen for so long. Does anyone know of memory loss/damage once the transplant takes place?
    He appears to be happy doing nothing and living as an invalid. What a shame to throw away such a chance at life (or maybe he cannot help it). Can anyone relate to what I am asking?

  64. Beth Davenport Says:

    I had a double lung transplant 10/1995 due to Alpha 1 at Sentara Norfolk in Norfolk Virginia.
    Living life with much enthusiasm. Honoring my donor by making the most of each day. Cheers!

  65. carolyn Says:

    I am a 57 year old woman, diagnosed 3 years ago with COPD. I have always had issues since a young child with bronchitis. Unfortunatly my profession was auto body repair and I worked in a body shop with paints and other materials of the sort for 19 or so years. Still felt ok. Changed positions and worked for a insurance company writing appraisals. 1/2 and residences and 1/2 at auto body facilities. And.. I was a smoker. In August I could not complete the spiro level testing. Currently on oxygen 3.0 when doing housework, etc. and 5.0 when walking and going out. My doctor want me to go to Boston for a second evaluation and states I am a perfect candidate for lung transplant. So scared. I currently can go out, drive, do minor errands and am fully functional at home-cooking, cleaning, etc. I don’t know what to do. They also stated something about a lung reduction. I am just so scared and don’t want to exchange a semi normal life for the unknown.

  66. Gary Says:

    I had a single lung transplant 4 -7-02 . At the great cleveland clinic . Doing
    Good got a little cronic , but we have been winning. I’m 63 retired coal
    Miner. Before surgery I had 3 lung collapse 8 chest tubes probably 50 day
    N hospital .I was going like a snowman n July,
    13 per cent function .One descison go for it . Keep God n your Heart

  67. Bill Erickson Says:

    I am a 66 year old man with a IPF diagnosis over a year ago, which has now been confirmed as UIP: from a VATS procedure. I also have been studying the statistics and wondering if it is really the right thing to do. I have had a complete very intense full work up to see if I am a suitable canadate for a Transplant, and have been cleared to go when the time comes. As of yet I am clinically still to “healthy” to be on the waiting list. Although I know that UIP is considered to be “relentlessly progressive” I still have some inner belief that I might beat the odds and survive longer then the typically stated 3-5 years. Very well could be wishful thinking on my part. The few individuals that I have personally talked with who have had a double Lung Transplant have all said with out a doubt, that “it is the right thing to do (for them) and have had no regrets”. And as my friends say, “whats the alternative”. I have read these most interesting and heartfelt comments from others in this posting’s and can see that making a true and forthright commitment to doing everything I can to be a worthy candidate for this amazing procedure, is the right thing to do. I will embrace life and hope that my living longer will give me the opportunity to give back.

  68. Victoria Gambrel Says:

    My father had a heart-double lung transplant in 1995 at St. Louis Children’s hospital. Today, he is doing better than ever and without the transplant I would not be here today. However, I also know of two friends of the family who died recently due to infection in their lungs. Both were transplant patients and suffered from CF. Transplants are a tricky business but everyday I am thankful every day my dad is one of the lucky people who both survived and continued to live his life.

  69. Daniel Says:

    On Jan 9, 2014, I celebrated my 13th transplant anniversary. I received a single lung transplant in Wisconsin due to Alpha-1 Protease Deficiency, at the time, my lung function was @ 14% of predicted. Basically, if one follows “THE RULES!”, i.e., keeps infections down, avoids the STOOPIDS (changing diapers, cat boxes, fishing…NOT watching where you put your germ grabbers) then life is gr8, and can be normal in expectancy. However, it also depends on the reason for a transplant. Those with CF will STILL face problems associated with salt transport and organ failure. Transplant IS NOT a cure, it’s a treatment. Treat your lung like it is ALWAYS open to infectious influences (take your meds appropriately) you will be ok.

  70. Star Says:

    Do not put a lot of energy into the stats or you will make yourself crazy. You are not a statistic! Some who do not make it pass from things that are unrelated to the transplant. many people who are transplanted have other health issues which contribute to early passing. They don’t go to the dr in time when they get a bad cold, then turns to pneumonia. They don’t eat right, and they don’t exercise which is the most important thing you can do to continue on. When you exercise you are telling your body you are alive and well. I have talked with many transplant patients and they will all say they same EXERCISE IS SO IMPORTANT. You will not be here long with out exercise. There are rules you must adhere to after transplant. 3 yrs out dbl TX excellent health walked half marathon at one year out and doing again this year! A positive attitude also is key. Transplant is a gift of a wonderful new life without worries. After after facing death you will never be afraid of dying again which makes life so much richer.

  71. Daniel Says:

    Hi, I am 14 years old and my father is 49. He has chronic bronchitis and copd plus he is on 24 hour oxygen. He is currently being consulted for a lung transplant. I honestly believe that he will not make it through surgery and that is backed up by 3 years of medical classes. If he does happen to make it I believe he won’t make it more then 5 years. I am having trouble getting an explanation from my parents about his situation and I hope I can hear some more positive comments about the lung transplant. Don’t forget, these are people who have survived the surgery( dead men can’t comment)

  72. David Benson Says:

    Bill I am a 65 year old man who was diagnosed with UIP (mine was idiopathic so they can’t say how I ended up with this disease) and was placed on the list 11-1-13 I got the call from Barnes Jewish Hospital on St. Louis on 1-1-14 and received my double lung transplant @ 1:22 AM 1-2-14. I was discharged from the hospital on 1-10-14 and I’m now recovering in our temporary housing in St. Louis. Although they can’t pinpoint exactly when I was afflicted with this disease they saw evidence of it in an old chest X-ray from 2008. I could have had it before then. I am doing very well and hope to be one of the fortunate people who survive well beyond the average life expectancy. I wish you the best of luck and can only speak for myself but I would do it all over again just being free of the concentrator and oxygen tanks is wonderful.

  73. Richard UK Says:

    I am a 56 year old man who was diagnosed with ILD/IPF some two to three years ago. Like many I pondered really hard as to accept the opportunity to have a double lung transplant knowing I was getting worse by the day.

    After getting on the active list I finally got the call. Even while being transferred to the hospital, I was still unsure even though I was on a constant 6/hr. o2.

    I consented on arrival. I am now so grateful to my donor and their bereaved family for the rejuvenated life I now have. I am now just seven months post operation and feeling so well it is only describable by individuals who have had it done.

    The condition that causes the problem is scary, the operation is even more scary. Waking up and the realisation is scary and frightening but when you finally get back on your feet and realise just how easy it is to breath it all becomes worth while.

    To me it felt like, and still does, being thirty years younger.

    Bless all those involved, my donor, whoever he or she was. Their family, they should be very proud now. My family, for there support over the years. The hospital and practice staff from the guys that simply clean the wards to the surgeon who carried out the operation, you are simply priceless angels.

    Finally, those who have been told they need a lung transplant. Be scared, you have a right, but be positive. It is so rewarding in the end. Good luck.

  74. Linda Easterly Says:

    I had my double lung transplant 3 years, 2 months ago. Of course recovery has been a bit of a roller coaster. I fit pretty closely into the article above. My new lungs have fallen victim to chronic rejection. I understand the trend downward will not change.

    But these three years have been worth having the transplant! I’ve gotten to see my 4 grandchildren through the tender young years. I’ve gotten a bit of bonus time!

    The comments have mostly been written by people who are doing well. Fantastic! But a lot of us aren’t so lucky. Yet, I wouldn’t change the road I chose. It’s been an incredible 3 years. Three whole years to love and be loved!

    It helps a lot to know where you’re going from here…because of His actions, not mine.

    If you’re trying to figure out whether or not to get a transplant…remember that it’s not about the number of years you’ll have, but rather it’s about the quality. You’ll sure enjoy a life without oxygen, long or short.

  75. Courtney J. Says:

    Hi,

    My story is about my mother, though she is not with us anymore, I’d like tbis not to discourage others. After 6.5 extra years of life we were blessed to have been given, I have gained a new appreciation for the disease, which is Idiopathic Pulmonary Fibrosis. I have been nervous my whole life to get tested for the gene, as there is a 50/50 chance I will have the gene. I really strongly encourage those of you on the fence about transplantation to really do your research, I know every situation is different, however, my mother having a double lung transplant allowed me to spend my adolescent years with a mother, I dedicated all of my time to ensure she lived those years to the full extent, as did the rest of my family, she even got to meet some new grandchildren and experience life. I wish you all the best of luck in the future. Keep your families close and live everyday like it’s your last, dont let anything get in the way of being who you want to be! My mothers lungs were transplanted in Toronto General Hospital, Ontario Canada.

  76. Donna Says:

    I agree with many, this article is very negative. I’m a 46 yr old PROUD mom of two U.S. Marines. my world is now turned upside down. diagnosed with this disease IPF. so unfair, life is sometimes cruel. I have to keep positive, if I hear negativity from people I try to disconnect myself from them. knowledge is also power. I had an idea of what I had but just needed it in stone. I will def. have a double lung transplant given the opportunity. someone asked me, well what if there is only a 20% chance of survival rate? then I take that chance. when it’s your life you take control. I want to live, I want to see my sons get married one day ,have children. I have a lot of things I want to do in my life. stay positive, family is all that matters to me now. God Bless all of the people who have this disease and hopefully soon there will be a cure. have faith!

  77. Paul B. Says:

    Hi there guys. I am 51 and on July 3rd 2013, I was diagnosed with Interstitial Lung Disease, a restrictive lung disease that has over 150 types. They did a biopsy on July 5th and nicked a blood vessel causing one liter of blood to fill my lungs. I was intubated and on life support for 6 hours, then in intensive care, I contracted Staff Aureus Pneumonia, just minutes after being told my biopsy showed I had Cryptogenic Organizing Pneumonia (once called BOOP). A glass-like granular pattern that is bilateral and affecting the lower lobes. My upper lobes are fine and clear. I have no velcro sounds or wheezing of any kind in both lungs, presently. Thank God! Anyway… I spent 47 days in the hospital. Being treated for three Pneumonias, Bronchiectasis, and the underlying disease. Somehow, miraculously through faith and hope, I survived, and despite being told I would eventually need a transplant, I am home working and living normally on 5mgs of Prednisone and no oxygen at any time. I am immuno-supressed so going out and doing anything is a huge risk. SO i stay home most of the time. I am normally at 98 (blood-ox) while resting and 93 when working out on treadclimber and weights. But I have relapsed two times once in late December and once this week. I’m back on 10 mgs. On Friday, I go in for a second opinion at Columbia Presbyterian in NYC because Yale simply wants to double check if they should put me on Imuran or if the doctors at CP will see something with fresh eyes. I’m told I don’t have any scarring, or fibrosis, but when I get relapses I do get winded and I get horrified that I will eventually get worse and need a transplant if we cannot keep the lower lobes from getting filled with blood and restricting my breathing. They think it might be auto-immune related. The doctor I am seeing is a transplant specialist, so I know I will get realistic answers, but I am horrified reading about rejection rates above. I wonder how long I will live like this where I have to be on long-term Prednisone and Imuran. They suggest that if the prednisone fails to work or I hit a wall, like I am hitting on the 5mgs, that Imuran (aszathioprine) will be needed to be used as a sparing-agent to ween me off of Prednisone. but I am hearing that Azathioprine is used for Transplant patients, and many lose their hair and get cystic tumors and warts and all kinds of terrible things. Has anyone here experienced terrible results with Imuran(Azathioprine) and does anyone think I am needlessly freaking out. They say that the Cryptogenic Organizing Pneumonia, which I have usually responds well to Prednisone, but if I keep hitting a wall at 5mgs, what are the alternatives. Just wondering what to expect for the next ten years of my life.

  78. Janice Says:

    My husband had his double lung transplant at age 48 in June, 2001. Almost 13 years ago. He has never been in rejection. Reason for TXP Silicosis. Recently he has had a few bouts of the flu and we are praying that he will recover from this once again. Since his TXP we have enjoyed our 3 children and 8 grand children born in the past 9 years. We Thank the staff and Doctors at Mayo, Jax everyday for the years they have given us. Would he make the decision to do it again…you bet he would! God’s Blessing to all of you. Take Care.

  79. Laura Watts Says:

    I will be 63 in June, and was transplanted in May, 1998. (Out 16 years). I had a double lung transplant at university of Penn for Cystic Fibrosis. In the beginning years, there will be some problems because of high immunosuppression. My life is awesome! I am grateful to God and to my donor family who gave me lungs, and to my sister who gave me a kidney, to the entire Penn Transplant team, Dr. Holsclaw my CF Dr, Dr Doyle, my Nephrologist, and Dr Osterman, my gastroenterologist. There are multiple dr’s in my total care. I exercise religiously, eat well, get my proper sleep, and try to minimize my stress. Making the most of your post-transplant life is important—every day is a gift. Be happy, and your body will love you for it!

  80. Sylvia Says:

    Paul, I wanted to take the time to respond to your March 10, 2014 comment about your concerns regarding the immune suppressant drugs. I have idiopathic fibrosis and am on 4 liters of ox 24/7. I have had every single test to get on the transplant list at Columbia in NYC. And trust me there are many. But all the tests I never minded. I am extremely healthy and physically fit I worked out daily, ate healthy and never smoked or drank. I never earned this disease, just like none of us did. But I have it and that is that. I was never diagnosed until end stage. I need a lung transplant or I will die, sooner than later. It was a very difficult decision for me to decide to put carcinogens (Imuran) in my healthy body that I had worshipped all my life. At first my doctor thought I was ungrateful because I was one of her few patients that she had highly recommended to have a lung transplant. I was patient and tolerant with her and just told her that I needed a few weeks to think about whether I should subject my body to these known toxins. It was hard for me to destroy my body with toxins in the name of living a bit longer. Live, but live how?? I love the success stories for sure. In fact my 2 daughters loved the success stories too and sent them to me daily and they suffered so and cried and cried. I went to my doctor and told her I would take the pred and the Imuran to ready my body for the transplant. I had to do this for my family because they had love and hope for me. I love them so. I was on the Imuran for only 5 weeks. You get blood work every 10 days when you first go on it to make sure you and your body is all right. I had become so sick in the 5 weeks that I thought I would not live another day if I swallowed one more of those pills. I had awakened early one morning and every single joint in my body was on fire and I was afraid to move. I remember thinking, well this is the day that I will not walk again, I shook the thought as I said to myself that I had no choice that I had to walk as no one was going to carry me. I slowly moved my legs to the edge of the bed and put my feet on the floor. Get up I thought, walk and I did, feeling the fire on my joints, just keep moving I thought, and I did because I had to, I had no choice. But I did not take my Imuran that day, nor did I end up taking it ever again. Funny thing, it was a Saturday and my doctor called me from Yale. She had gotten my blood work regarding the Imuran and she told me it was off the charts, not to take even one more pill. I never told her I had already decided not to. She referred me to an oncologist for that Tuesday. Never told me it was an oncologist until I got to Yale and noticed the doctor I was scheduled to see was at Smilow, the canacer part of Yale. I thought, what the H—l?? I had more blood work, no veins left from all my tests for the lung transplant tests. I said just dig, there’s nothing else to do. Half hour later 3 doctors came to tell me that they wanted to admit me to have a bone marrow test, radioactive tests and more blood work. They told me that I had developed ALL leukemia, a very aggressive leukemia that will take you in less than 6 months. No real treatment for adults and given my ipf, certainly no treatment for me. Oh well. Just another cliché. I told them no, that I wouldn’t be staying at their hospital.nor was I having all those unnecessary tests, that I was going home. I told them that I couldn’t believe that Imuran had the power to take over my so healthy body in just 5 weeks and no bone marrow test (ouch)nor radioactive tests and no hospital as I am the crusader to die in my home where I live alone in my old comfortable Victorian. The doctors looked at my daughters with a look telling them, that their mother was just in that denial phase and upset. But they didn’t know me at all. I wasn’t afraid and in a stage of denial, I just was going home and didn’t care what I had, after all I was already dying, I knew that, what was a little leukemia? I was put out however because I had been blessed with ipf for whatever reason and was well prepared to end in peace with my disease. But I must say I was honestly put out that I might die of some other disease that had not been chosen for me and was caused as a result of my poor judgment. The FDA labels Imuran as a carcinogen in the human body. Look it up. but in defense of all the 50% of lung transplant patients that the Imuran doesn’t kill, you have my support and blessings.. Or for those of you that choice to live with the illnesses which these drugs cause in the human body, I respect and honor you. You have my full support. But for the other 50% of us, please be fair when you write about your successes. It’s just how important is living to each of you?? And how much family support and caretakers do you have and how much insurance and money do you have?? I think the number one cause of death in transplant patients might be the deadly skin cancer, the one with black sores all over your body. You know that ugly killer skin cancer that our early aids patients were dying from. All autoimmune diseases can become rampant because don’t forget we are suppressing our immune systems to keep our new lungs. So if we develop skin cancer, lung cancer, kidney failure, gird, pancreatic cancer, diabetes, blindness and on and on. Jim, don’t worry about the warts, they are the least of your worries. I have lost 56 pounds gained in 9 months from the pred. I have had $6000.00 lens implants as my vision was worse that 600 in each eye, it was excellent before the pred. I am a good weight now but still have fat pads underneath my skin all over my body. incidentally, I never ate a lot on the pred, was always naseaus, but the fat pads kept coming like wild fire. I was just lucky that I never developed the famous buffalo hump on the base of my neck, but I did lose over 50% of my hair. In addition the Imuran in my body caused something which attacked my central nervous system. It started on top of my head and went all down my entire body to the bottom of my feet. It felt like shingles, only just under my skin sending burning, prickling shocking to the surface. It lasted 9 months and the doctors could never diagnose it and you know what, I just don’t care. It was the worst thing I ever experienced in my entire life and I truly felt like slitting my throat just to escape it and trust me I am no baby when it comes to pain. I currently have nerve damage and brain damage, memory and focus to this very day. Gabbapenten helped a bit, but no longer take it. I have learned to live the the prickling, shocking and burning. Well, I have been drug free for a year now and am still here acutely affected by my burning joints, fat pads, nerve and brain damage and leukemia, but apparently not ALL leukemis or I would not still be here. Have not been back to the oncologist, very nice doctor, but why, more tests, To me it doesn”t matter. My pul doctor tells me to go as although most places won’t give a transplant to clients that have cancer, that NYC would if I had CLL leukemia, instead of ALL as it was much slower acting. I just smile at her, and I think, Have you lost your mind?? Well, I am so sorry, if I burst any ones bubble, but the drugs are toxins, but you must understand that some people do much better than others with these drugs than I did. It was just lucky that my doctor started me on the drugs prior to my transplant to get my body ready for the transplant because if she hadn’t I would probably not be here, because once you have the transplant your drugs become your sidekick and all that goes along with it. I hope this has not discouraged anyone in terms of a transplant. Look at all these beautiful success stories. They are all true. But don’t forget, I don’t see one blog about the other 50% of us. I read so many transplant blogs and only can find good stories, just like my daughters were finding. But those of you that are too sick to write or too kind to write, get someone to tell your story because the quality of life is what matters, not just the days and the minutes. Thanks for listening. I didn’t make this up. t’s really all very true. and it’s true my oxygen tank is my sidekick. but it is all PURE and those drugs, well, just say they are just a part of my past. Sylvia

  81. Sandra Says:

    Thank you Sylvia for the beautiful article. This is exactly what we are going through. I asked back a few months ago if ANYONE could relate to the story of my brother I told on December 16th. Not ONE response. It’s absolutely great to hear all of these success stories – but not everyone is successful and I’d like someone who can relate to our situation. Now, my brother is back in the hospital for another bronchioscope and is severely anemic receiving a couple pints of blood. The leukemia you speak of hit home with me. The biopsy is TODAY, so we shall see what they have to tell us. Thanks again!

  82. jorge garreton Says:

    inmuran is poison…I got intoxicated after couple of weeks minimum dosis (march 2013)

    I waited for the trasplant with the oxygen therapy and stood 2 month at the clinic waiting with a sucessfull end (October 2013)

    Suerte
    Jorge Garreton

  83. frank hardina Says:

    my name is frank hardina 3 years and 11 months ago ihad Ipf i never smoke or drank i didnt have to much time to live the most 6 to 8 weeks had only 5 percent of oxgen left i already new i wasnt going to make it iam catholic inever belive in miracles now i do we got the call in 3 weeks i live in los angeles i had to carry 12 tanks of oxgeny to survie surgey last about 14 hours after the transplant two months later i didnt want to continue you my wife told me dont you give up do it for your donor and your son and daughter after leving for 4 months in san diego i came home then i had a mild hreat attack they brought me back to life and took me back to san diego they put a pace maker in me they told me my hreat beat went down to 30 beats they dont know why my hreat didnt stop know i know iam here for a reason i see life different at one time i had a great job making 14000 a month now i dont even have one fourth which i was making but iam a million time happier i was upset with god now thiers a reason for me to be here i have great respect for people who go threw this god bless all of you he already did me

  84. Jan Steinberg Says:

    Hi I have a neighbor whose 47-yr old daughter is waiting for her second – yes, her second – double-lung transplant. The neighbor just told me, very tearfully today, that his daughter is deciding that she no longer wants to go through with this second procedure. She wants to call it quits and let nature take its course. He understands that – but is deeply saddened by it – and is hoping that someone somewhere can help her to change her mind. He asked if I could find someone who has successfully gone through two double-lung transplants who could communicate with her about it. Would you have any idea how to find such a person? Is there anyone out there who has the energy and willingness to make contact with her to share the unique thoughts, and feelings that go with this experience? Thanks. ~Janet

  85. Sherry Amagliani Says:

    My husband was recently diagnosed with IPF. He is 46 years young and I am so scared. His father died from IPF in Jan. 2012 and what a horrible way to die. The doctors have mentioned transplant as a possible option, but my husband is still in the tons of testing phase for the IPF. The next test determines if he needs to go on oxygen when he exerts himself. When would the option of transplant become available? What criteria does he have to meet? I have so many questions and as many tears since we have decided not to tell the family until we have all the facts. Please forgive me if this is not what this forum is about. I just know that transplant can give my husband a better quality of life and will let me love him for longer. Thank you for listening to my crying and whining. Good luck to all of you. My prayers are with you.

  86. Kay Morse Says:

    My father (72 years old) is 9 years out from a single lung transplant 9 years ago for IPF. He was given 6 weeks to live prior to the lung transplant. Without it, he would have missed his grandchildren’s graduations, and the birth of a granddaughter. It hasn’t been easy, but if he can survive 9 years (he’s not what I consider “compliant”) then my prayer is that all of you who are considering it will also make it at least that long. Peace.

  87. Liz Clark Says:

    I am a double lung transplant recipient, diagnosed at 57 in 2007 w/IPF. I was blessed that I was on the list for only 8 months before I received the call. My transplant was done on Easter Sunday 2012 in San Diego, CA (Dr. GordonYung).I know the stats are not as hopeful as we would like but I have faith, support and a desire to live my life to the fullest. I’m a miracle and my decision was never about longevity but about the quality of life. Transplant is a personal decision. I wish everyone the best of luck. God Bless You.

  88. Anna Says:

    My husband is 56 yo. Had his double lung transplant in 2006 (NYC Columbia Presbeterian). Did well for the first 3-4 years, developed a cold. His lung function went down from 110 to 30 in a “blink of an eye”. He is “stable” and we are thanking God for that. As a nurse, myself
    I not only understand the medical aspect of this procedure/ +/-, but also I ache aa a wife. He has a chronic rejection, and although breathing “ok” with his non thriving lungs, we were told he may need a second transplant. Need to think and plan now… Because the process is long. Endless pain and aching, but his lung transplant was def. the best decision one could make.

  89. Jerome Says:

    I am 2 years, 6 months post a double lung transplant due to Cystic Fibrosis. I’m a 33 years old male. The lungs have took me many places I certainly would not have been able to achieve prior to transplant. With plans to continue to aim high and find new thrills in life. My real question/ concern is how to manage side effects form all the harsh immune suppressants? From poor memory, to felling like you are moving in syrup and lack of sleep. As well as accessional joint and body pains.

  90. Chris Says:

    I have pulmonary fibrosis diagnosed earlier this year. Doctors don’t know how I got it, (non smoker) but I’m pre transplant right now (not yet put on the list), but they said in about 3 years I may need a bilateral transplant. As you all know the prognosis of this disease isn’t good at all; according to the statistics I’ll be dead within 3 – 5 years. But according to the lung transplant survival rates I’ll be dead within 3 – 5 years anyway so I’m thinking what’s the point? I’m 37 now and it’s a bit unsettling to know I’ll probably be dead before I turn 45. Because of articles like this I wonder if I would even want to go through with a transplant if it turned out I needed one.

  91. Jeanne Says:

    It is impossible to predict the prognosis for any lung transplant patient. What is certain is that the choice is usually between the passing away soon from lung disease versus having a chance to live. As to outcomes, for some transplant patients, the surgery is painful and difficult. For others, recovery is a relative breeze. I don’t think that any doctor knows how successful a transplant will be because there are so many variables, some of them still a mystery: the health of the donor lungs; whether the size, antibody and blood match are close enough; the overall health and strength of the recipient; surgical uncertainties; the patient’s ability to tolerate the rejection medicine regime; the patient’s chance exposure to infections; etc. My husband was 68 years old when he had a double lung transplant to replace his IPF-ravaged lungs. His breathing tube was removed within hours of surgery. He walked out of ICU to his room within 24 hours. The hospital discharged him six days after surgery. He had no complications whatsoever (which is not to say that he won’t at some point). Almost 3 years later he lives a completely normal life. His high school classmate had a single lung transplant for IPF at about the same age and was never released from the hospital, passing away within a month of surgery. My point is this. Transplant surgery gives you a chance at life. There seems to be no way to gauge your prognosis. Advice: be as healthy as you can prior to your surgery including eating right, aerobic, stretching and especially strength-building exercise every day, educate yourself about oxygen delivery systems to maintain your comfort and clear thinking, attend classes and gather as much info as you can about ways to cope with and treat your illness, participate in support/education groups, focus on why you want to live, and keep a positive attitude. You might pick up reading material (such as “Love Medicine and Miracles” by Siegel) to help your perspective. And consider thanking your caregivers on a regular basis. No way anybody can tackle the transplant process alone. Hope this helps someone. You are all in my thoughts.

  92. Pete Says:

    I am currently 11 years out from a single lung tx due to A1AD. It seems like yesterday. The smartest advice given to me was by the surgeon who told me that getting the transplant was just trading one disease for another. Truer words were never spoken. In spite of the many problems that not only I but I am sure most transplant patients have endured during their post tx journey, I believe almost all would agree that it was worth it. I have noticed that some people keep saying that only the living were happy with their tx decision. I have personally spoken with numerous individuals who are no longer alive and the vast majority said that they made the right decision concerning their lung transplant. Is it tough? To quote Dick Martin, “You bet your bippy it is!”. Is it worth it to watch your kids grow, graduate, get a job, get married, give you grandkids, all the smiles, hugs and tears you get to share with them? Duh!!! What do you think life is about?

  93. Richard Kramer Says:

    To all concerned. I ended up reading these comments, after reading this article, because my best friend, has been fighting pneumonia, for the past three weeks, and it has been of concern, to me. But then, after reading many of these posted comments, I decided to say something. My friend, had a double lung transplant, 19 years ago, he doesn’t just work, he runs a business, under constant stress, truly, one of the strongest, and craziest persons, I have ever known, and still so, I feel for him now, as many depend on him. But after reading these posts, I decided to offer, some encouragement instead. This August, he will be turning 55 years old,
    good luck to all, and turn every statistic, into your own destiny.

  94. Dawn Says:

    I was told I had developed Rheumatoid arthritis, food allergies, severe acid reflux and an interstitial lung disease about 9 or 10 yrs ago. USCF lung clinic put me on 60 mg prednisone then began weaning me off as they tried Imuran (azathiophrine). I became stable and they sent me home on low dose of pred and 50 mg of Imuran am and pm. Here I am 10 yrs later and now I am needing a lung transplant. I have had no problems with the Imuran. I have lots of hair. No rashes, nausea, and it definitely slowed the progression of the disease. I don’t need to think about it-I want to live. I am used to taking pills and I want to be here. Pain is relative. I had a long talk to God for he is my father. It has been decided that if a lung comes available for me matching my needs and if I survive, God intended it to be. He is in control-not me. I have lost weight, exercise regularly and eat healthy. I have done my part. I have an excellent support group of fantastic friends and family, a home to live in San Fran while I recover close to the hospital and the best husband in the world. Now God is in charge. Thank you everyone for your comments and your prayers.

  95. The devil according to stanford Says:

    I’m mid thirties with cf and on 2nd double lung tx. Both were done at crampford. Oops I mean stanford. I have always been very active in sports except for last few years before my first tx. Rt before transplant games first txed lungs went bad. I am by far not ur average Cfer. I have always walked the line. And not the straight and narrow line. They began getting mad at me for things. Things that are not new to or for me at all. I have always been the same way. They have taken my behavior personal. It’s true that after last stay (of two months) I wanted to never return there. Quite the paradox. Insanely pissed n irritated at the same people I am forever soo truly and extremely grateful and indebted too. That feeling started to go aWay but then The last few appointments have been..glance at numbers n bloodwork super quick.( Like ten seconds )then right into lecture. Who wants to go to that. They’ve focused on everything other than my numbers. There is a reason I was always more of a Berkeley type guy..laid back and relaxed, have a good time while still being intelligent. Still get stuff done. I’m am one of busiest people a lot of my friends n family know volunteer, coach n play a sport , work n school but am not and don’t like people that act snobbish or on a soapbox. They have become like the principals office. F that. I heard many a patient complain about them but until last six months or so I still stuck up for them. Wore their shirts shorts n hats. I have a feeling they might tell me to find a new center and it will be because they like you to “do as we say , when we tell you”. The absolute wrong way to get me to do anything is to TELL ME like ur my parents, as if they’re almighty. I would rather not leave stanford simply out of loyalty to the center for giving me life twice and to some of the drs for speaking on my behalf. I’m not a grudge holder. Never have been. However, if I can’t be relaxed or at least not stressed out about going to see them something needs to change. Maybe they could simply treat me n not judge n threaten. That’s all I’ve asked for. I hate this predicament.

  96. Donnie Insco. RN Says:

    After taking care of the sick, now I get to be a patient. I have IPF and am trying to get evaluated for transplant. Not a quick process. I have discovered it is much easier to be a good Nurse than a good non complaining patient. I am a
    Person of faith, but must confess that I am so frightened about death and the
    Future of successful treatments. I will beg God’s blessings on everyone that
    Is affected by lung disease and their loved ones and ask you all for your prayers. Thank you for reading my comment

  97. D.J. Says:

    Chris Says, I had double lung transplant 12/06/2012, and I was in the same boat. Felt like why suffer! Well you have more than a 50% chance to live more than five years after transplant, and you will need help and a will to live. I would be gone, game over your done before 12/01/2012. Look at the info your Doctor gives you, it was way better than I thought it would look. I was very happy to see my wife and three kids after the transplant!

  98. Ginny Says:

    I’m trying to compare a lung transplant and a lung volume reduction surgery. It looks like a LVRS does not increase life expectancy but does increase quality of life, etc. just like a transplant does. The surgery, while risky, is still not as risky as a lung transplant and of course no problem with rejection. Anyone else tried to make this comparison?

  99. Chris Says:

    Before even hearing about LVRS, I asked my doctor about just removing the scarred portion of my lungs which is in my lower lobes. But I was told that isn’t an option, and a full bilateral lung transplant would be the only course of action should I get to that point. I would much rather have a LVRS than a full blown transplant if only because there is no risk of rejection or having to take 20 meds daily.

  100. Chris Says:

    I’m not sure why my previous comment regarding LVRS was removed, but all I wanted to say was the LVRS does seem like a viable alternative to a lung transplant. Before even knowing about LVRS, I asked my doctor about removing the scarred portion of my lungs and I was told that this would not be an option and that a full blown bilateral lung transplant would be my only course of action should I get to that point. From what I’ve read LVRS should improve lung function by allowing your remaining lungs to work better and it seems to make sense as the scarring prevents the lungs from expanding fully and with the scarred portion gone, that will allow you to get full use of your remaining lungs. LVRS seems to only be used for Emphysema patients, but I don’t understand why it can’t be used for PF as well.

  101. Chris Says:

    Hi D.J.

    How are you doing with your transplant as you approach your two year anniversary?

    Any complications such as rejection symptoms?

    How many meds are you on? (I’ve read that people take as many as 24 meds per day).

    How do these meds make you feel?

    If you don’t mind me asking, what was your original Dx to require a transplant?

  102. Amanda Says:

    Hello All,

    My dad is currently in the process of being added to the tranplant list. He received his three yes’s (Social worker, doctor, and surgeon), we are just waiting for it to be presented to the transplant board at Cleveland Clinic for the final decision. I will be his primary care giver and I must admit i am prety stressed out because I dont know what to expect, what I will need to do for him, etc. I want to be prepared for what is to come so I can be more help than not for him. Any suggestions? Tjanks in advance.

  103. Lucky Lungs Linda Says:

    After developing Emphysema, Acute Bronchitis and MAC (MicroBacterial Avim Complex at age 58, I had my Double Lung Transplant March 10, 2011. I was 63
    And still doing well. I did not have diabetes afterward unlike my other Transplant friends. I was told by a Family Practice Doctor that he would not have the Transplant since it was a lot to go through for just a few more years. WRONG, I know a Veterinarian that is 13 years Post Transplant. I would Definitely recommend a Transplant to give you more years and enjoy getting your life back. I owe everything to TAMPA GENERAL LUNG TRANSPLANT Doctors and
    Staff. I would do it again. Life is to short not to.

  104. Lucky Lungs Linda Says:

    To those Care Givers after Lung Transplant:
    First and foremost Listen to your Doctor. He will give you instructions, probably
    a list of information. DO NOT have visitors in the hospital or at home for weeks
    Everyone wants to visit, however, germs are very dangerous post Transplant.
    My husband was asked to be with me a year post Transplant so he quit his job..
    Perhaps other Doctors offer different advice but I have not rejected or had any
    “Bumps” except Bronchitis just last month. You will be fine. I slept so much with
    the pain medications that he could actually play golf in our Community. Good Luck

  105. Linda Says:

    My disease began several years ago with COPD, Acute Bronchitis and the real killer, MAC. I developed MAC after Enbrel sapped my immune system. I took
    Enbrel for Rheumatoid Arthritis for over a year. I was determined to fight even when I was on Hospice. I was on TP list for 14 months at Tampa General and received my Double Lung Transplant March10, 2011 at age 63. My point is to NEVER GIVE UP and LISTEN TO YOUR DOCTORS. I played golf 5 months
    later. Amanda, please try not to feel stressed out caring for your Dad. He will
    sleep a lot and need you to be strong and calm.

  106. Cathi Says:

    I have taken the time to read nearly every comment on this message board and because of this, have a newly found hope and determination to survive my inevitable trip to the TX table…I have recently been diagnosed with Alpha 1-antitrypsin deficiency having been mis-diagnosed 20 years ago with “asthma”…I was told I have “Severe Emphysema” – the CAT scan literally took my breath away…I will be 50 in 3 mos…I have 4 daughters and 6 grandchildren (waiting on the 7th) – I have A MILLION reasons to live and not ONE to die…The statistics are paralyzing at best BUT knowing there ARE folks out there that have beaten the odds is so encouraging – I am a fighter…a competitor…I LIKE to win!! I am otherwise healthy and only use O2 to exercise…I have no idea how long it will be before I will be evaluated for the tx list but should that day come I will be EXCITED to dream of the possibilities of dancing, running a marathon, CHASING my grandbabies through the yard…living every single day with JOY and thankfulness – Brightest Blessings to ALL of you!!

  107. Carmen M. Moser Says:

    In 26 days, I will celebrate 20 yrs. out with a D/L transplant.
    My transplant was done @ the Univ. of MN.
    My surgeon was Dr. Vibhu Kysettrey.
    I have also gone on to have 2 kidney TX’s.
    Life is good!!!

  108. Mags Says:

    Read THE LUNG TRANSPLANT HANDBOOK by Karen Couture. It’s available at Amazon for around $25 and written by a long time survivor and friend. I had a single-lung tx 5/3/13 at the University of Chicago – was tx at age 65 from COPD, going from 14% lung function to 78% overnight. I am thankful to God, my donor, my entire amazing transplant team, my family, neighbors, coworkers and friends for all the support. Yes, the journey was scary – but the quality of my life has improved so very much that I cannot imagine saying no to an opportunity to be transplanted. I do suffer some side effects from the drugs I need to take, however, consider them a small price to pay for being able to breathe. To all who have posted on this site, I wish you peace and good health for yourselves and loved ones.

  109. Raven Ransburg Says:

    I’m Raven, I was diagnosed with pulmonary fibrosis last year. I don’t know to many people my age with this disease. I just turned 18, I will be getting evaluated for a lung transplant. Your stories give me hope.

  110. Robert Says:

    I’m a very successful double lung transplant recipient of 18 years. I have a question? Have any of you been able to buy term life insurance? Because of the success rate or lack of success rate for double lung I have been unable to secure life insurance . If anyone has had success with any companies would you please pass it on. Thank- you

  111. Joy Says:

    my son received his double lung transplant October 2013. my sons doctors told us in july he went into First stage of rejection it’s terrifying I’m scared everyday.since then they have put him on really aggressive steroidshe’s doing a little better the fear is still thereis it with the secret every day he does not knowmy baby is only 10 years old

  112. Linda Says:

    My Grandson was 6.5 months when he received his lungs. He was born with surfactant disorder.
    St. Louis was the transplant hospital and
    they were wonderful. He has had his lungs for
    seven years and went through rejection 2 yrs
    ago. His life is quite normal. He does attend
    a school on the National Jewish Hospital campus
    that works with cronic illness.
    When we dicided to move forward with the transplant so many advised against it.
    We were trading one set of problems for another.
    Thats life and every day is better because I
    breathe air that was in his lungs. It has been
    rough at times but we love him and it was all
    worth it.

  113. Jim B Says:

    I am now five months away from being five years out from my single lung txp. I cannot believe how blessed I am. I have been thinking about my donor a lot lately and truly blessed gift he gave me and I continue to do the things necessary to keep it working at peak efficiency to honor his memory.

  114. Laurice Says:

    I was diagnosed with PF on feb 20 2014 and was just placed on the transplant list on sept 11 2014. I too had concerns about life insurance and was able to obtain it with Mutual of Omaha (Robert).

  115. Mary Jo M Says:

    I am 58 years old and was diagnosed with IPF in June 2013. My disease was much more aggressive than the medical experts thought. I was transplanted July 18th, 2014 (single lung). I was a few weeks from dying when I received the amazing gift of a lung. I was in the hospital 2 months before transplant and 2 months after. During my hospital stay I unfortunately missed my daughter’s wedding but I hope to see grandchildren born and watch them grow.

  116. Melissa Ott Says:

    My husband underwent bilateral lung transplant at age 41 because he had CF. He would maybe have lived 5 more years without it, maybe less, maybe more. He made it to the 9 month mark and died of rejection. Our experience was a nightmare. I wish we were never told it was his only option. I believe strongly that his CF team and his transplant team should have prepared us with these poor bit very realistic expectations prior to considering the surgery. Perhaps we would have passed on it and enjoyed a better quality of life with the time we had left together. Everyone is different and will have different opinions on the issue. Our experiences are all unique, I just feel the experienced providers involved in these transplants should presenot the reality of what can be expected when applied to a patients situation and not hold back in order for them to be able to make this huge and life altering decision.

  117. Nancy Says:

    My son is 10yrs old they want to do a double lung transplant on him I’m scared for him myself I DNT want to be selfish and not do it but I’d rather have him here with me then not with me

  118. Jeremiah S. Says:

    I have CF and I’ve unfortunately been going downhill over the course of the last few years. Just two years ago my lung functions were still in the upper 40% to lower 50%. They’re now in the lower 30′s

    So now I’m supposed to get evaluated for transplant and to see how long it might be before I’ll need one. It’s a scary though and I’ve of course researched about the different hospitals around me.

    Unfortunately Austin, TX. doesn’t have any hospitals that do lung transplants. And Austin is too far away from Both Houston and Dallas to be an acceptable location to get one. Which leaves San Antonio and the newest hospital to start doing them Scott & White in Temple, TX. I used to go to Scott & White when we lived up in that area when I was little. So I have a bit of a preference for trying them. But it’s scary when there are no statistics to go off of since the hospital has only been doing them since 2012.

    I personally am not sure which to choose. I’ve heard mixed feelings about the San Antonio location. (This is coming from Nurses and others from my CF clinic) Not really having to do with the treatment, but the lack of communication about appointments and the steep requirement of money to your name. It’s a lot to have to deal with at 30yrs old.

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