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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

166 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 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 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 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 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:


    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

  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:


    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:


    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. Johan Sleuthen Says:

    There was a procedure done in a hospital with stem cells. A guy had a necrotic heart. They injected stem cells into it, and new healthy cardiac tissue replaced the necrotic tissue. This could work for lungs too. Also, these days, you can clone your own organs, so I don’t know what the hold up is on these procedures. Get snapping people. Notify your doctors of these procedures.

  78. 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.

  79. 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.

  80. 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!

  81. 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

  82. 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!

  83. 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)

    Jorge Garreton

  84. 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

  85. 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

  86. 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.

  87. 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.

  88. Cassie Buckner Says:

    I am going on 17 years post bilateral lung transplant. I teach full time, I had a daughter through gestational surrogacy, I have been married for 7 years….I am going strong and I have never felt better. I hope I live another ten years. I haven’t found any website that states statistics from patients living past 15 years. Everything I read is very depressing. Maybe databases will get updated soon.

  89. Rosalie Lopez Says:

    This is a reply to Jan Steinberg about someone who has undergone a second double-lung transplant. I was first transplanted in September 2009. I went through chronic rejection rather rapidly in 2013, but wanted to keep on living. I am very blessed that a transplant center considered me a viable candidate for a second transplant. It is rare. The risks are greater and you really have to be physically fit to be considered for a second time around. I had the second transplant done in September 2013. I am now six months out and feel great. I am so glad I never gave up hope and took care of myself so I could get through the second surgery as best as possible. There’s no way to predict how long these second donor lungs will hold out, but the transplant team gave me some idea that the time would be less than the first go-round. I am never discouraged, even to be afraid of my eventual demise. Right now, all I think of are many reasons for living another day. I chose fighting to live because I love life. I know what it is like to be on a downward trend of rejection and near the brink of death. That will come soon enough. It is truly important to stay mentally and spiritually well–uplifted by whatever moves you. Physically, I was out of the hospital in nine days in the second transplant compared to the three and one-half weeks the first time. For me, the risks of the second transplant outweighed the reality of dying in short order without it. I started a website: It is still a work in progress, but maybe someone can find encouragement there. Good luck to all. Rosalie

  90. 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.

  91. 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.

  92. 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.

  93. 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.

  94. 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.

  95. 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?

  96. 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.

  97. 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.

  98. 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.

  99. 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

  100. 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!

  101. Maria Says:

    My dad just had a double lung transplant in Stanford, June 28, 2014. He was diagnosed with pulmonary Fibrosis, and although the doctor told us his condition would progress slowly because he was very active, he took a dip for the worse. I swamy father fight for his life, he got worse quickly! He was unable to breathe on his own and was placed on an induced coma. 3 days after getting on the list, our blessing happened, there was a match! I know it’s scary but its also scary when you get to the point where you feel like a fish out of water. Good luck to all of you may God be with you like he was for my family.

  102. 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?

  103. 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.

  104. 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.

  105. 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?

  106. 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.

  107. 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.

  108. 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

  109. 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.

  110. 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!!

  111. 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!!!

  112. 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.

  113. 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.

  114. 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

  115. 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

  116. 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.

  117. 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.

  118. 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).

  119. john Says:

    January will be my 5 year anniversary. I got my double lung transplant at Tampa general because of alpha 1. Best choice i ever made.

  120. 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.

  121. 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.

  122. 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

  123. 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.

  124. Mary H. Says:


    University Transplant Center in San Antonio, Tx. is wonderful! I had a double lung transplant on Aug 1, 2014, so 3 mos out. The doctors and nurses are on top of everything. For the first couple of months you will have tests performed weekly and meet with your transplant team.
    You will need insurance. The cost is approximately the same as any other transplant facility.

  125. John Wholey Says:

    I am now 58 years old . I received a bilateral tx on jan 11-12 jan. 2013
    I had interstial lung desease that progressed to bronchia teosis
    My last six minute walk was done the day before at 30 yes30 lts of o2
    All has gone extremely well. I can’t say enough to exspress my appreciation
    For my care givers. Also BWS hosp. In Boston your the best
    Remember everybody exercise!!! Eat well be carefull but enjoy
    The gift you’ve been given for as long as it lasts.

  126. Anthony B Says:

    it great to see many people doing well with there lung transplant. My father had a single lung transplant about 1 month ago. He had pulmonary fibrosis that was unknown cause. Before tranplant he couldn’t walk with out a oxygen mask at 12L. I just want to get some answers.To the people that have been going for years and still well. I would like to know if use don’t mind how your life style. And also possibilities recommendation that I could take for my father his 66 years old.

  127. Steven G Says:

    I was 23 yrs old when I was listed for a heart-dl tx due to congestive heart failure. I had been born with a bad heart that began to fail at age 22. My transplant was done at St Louis Childrens- the best place ever.I had a 50-50 chance of surviving surgery and those same odds for the first year. That was over 19 yrs ago. Those first years were rough on me, but at the same time, I still led a decent life. My daughter was born in 96. I never thought I would live to see her grow up. I wrote long, often tear-stained letters to her for years. (Sometimes I still write one to say what an awesome kid she is). In December she will be 18 and she will graduate high school in the spring. I don’t know why or how I’ve beaten the odds. I haven’t been a model patient or person, but I have had support from so many friends, family, and good doctors. I live in Dallas Tx and go to Baylor Dallas for my check ups. I have a great doctor there and recommend them.
    On the flip side, I knew a girl who had a dbl lung and her brother, who was also a dbl lung. Both had CF. The woman had 9 good years before she passed. I’d only 1st known her brother (he wad mid-20s) when he was tethered to O2. He flew through his 1st year. To see him free of O2, running around for hours, was awesome. I thought if anyone would make it, he would. A little after a yr he was struck down by a virus that led to rejection and his ultimate passing.
    So there’s the good and bad of tx. None of the three of us would have made a different choice. My friends 1 yr post-transplant was better than the 3 I knew him before. I’ve been blessed to see my child grow from a newborn to a marvelous young woman.She, too, understands the gift we’ve both been given.
    Having said ALL of that, I don’t think I would have a 2nd transplant. I would do the 1st again, but it was a hard few years at the get-go (for me) and I’m not sure I could stand it physically.
    My friend had 1 very good year post-transplant but didn’t get to enjoy it much more than that. My first two years just wasn’t worth it to me- all up and down, but I’m 19 years out. This transplant life is a crazy thing.

  128. Annette Tillemann-Dick Says:

    I was led to this moving chain of questions and comments after posing the following question to my google search engine: Does anyone know someone who has had a third bi-lateral or double lung transplant? Though there don’t seem to be any responses to that query, the reason I am curious is that both my daughter, and a friend we met during her first transplant at the Cleveland Clinic, have now had two bilateral or double lung transplants. I suppose just asking the question says a lot about how we feel about the transplant. For both of our transplants the going was very rough, though in different ways. In both cases, the joys of life post-transplant, made the extreme challenges well worth it. You’ve heard of extreme sports…well, lung transplants are extreme medicine…intense, dangerous, potentially wild and crazy..but with lots of upside potential to balance the almost indescribably intense lows. For caretakers and companions, it is so important to keep your eye on the prize and not get discouraged by the many and varied challenges along the way. Your informed presence can make a huge difference for the one you love. Informed does not only mean that you have read lots of stuff on the procedure…informed is that knowledge that only you have about the patient because you will be the one who knows him or her best; that information and the insights, intuitive inspiration and concerns you may have can help your transplant recipient get the best care possible. I was by my daughter’s side almost perpetually and when things got a little better usually two family members or an incredible friend would sit with her. It did make a difference. Don’t worry about how bad it all looks, the drugs will shield your beloved from much of the pain for the most part. Both transplants afforded my daughter unbelievable years of happiness and meaningful existence. she is still doing very well after the second transplant…though between the two she has just reached the five year mark. They have been five infinitely extraordinary years for all of us…not perfect, but perfectly wonderful.

    To the mother with the young son: Try, try, try to believe in the miracle of his presence with you and try to be strong in your faith because he will draw strength from you. At one point, after my daughter’s excruciatingly difficult first transplant, I was deeply discouraged and felt that we perhaps had made a mistake subjecting her to such trauma…a dear friend took me aside and said, “Annette, you can’t draw strength from her, she has to be able to draw strength from you.” That was a much appreciated wake-up call.From that moment forward, with God’s help,I sought to be positive, helpful and strong. Remember to love your patient, to massage them, to keep their body moving as much as possible when they are dormant, if they receive a tracheotomy and have to, eventually, be weaned from the respirator remind them that they won’t drown …because it feels like drowning when they start to learn to breathe again. As with anything in life, it can really help to seek guidance from G-d, the Source of all wisdom and knowledge… but if your answer, whichever way you receive it, is to move forward with a transplant, do so with hope and a determination to find a path through the trials. Though there are persistent challenges there is a heightened perception of the gift of life when it comes through the bequest of another’s lungs.

    Much loving encouragement and hope to all.

  129. Kenneth j Skvorecz Says:

    Hi all. In March 2011 i was diagnosed with IPF. My Mother(56) died 23 yrs ago, her sister a few yrs later n then my cousin(50) a year prior to my diagnose. I saw the same doctor as my cousin who followed herr instructions n within 6mths into the lung transplant process for approval ha died. It took me 6mths to get approved n was 34 on the list at UMC in Tucson nm. I was only 48, n determine to find a cure or away to stop the progression of IFP. With no cure n only knowing it is a Aut Inmune Disease i concentrated on curing my inmune system. I started with removing metals, chemicals, pesticides, herbalecides n paracites from my body using Zeolite. I told my doctor who seem not to care, just wanted me to take the posionous drugs to prep me for double lung transplant cause i lost half my capacity. Biopsy left me with nerve damage around my ribs too. I told my doctor im not taking any drugs until i get a transplant. In Jan. 2012 UMC had lost there Surgeon which was ok with me cause i was doing well. Though on oxygen therapy i continued to clean my body of all the negative bacteria using DigestaCure a product frrom the Aloe plant. It slwly kills all that bad bacteria throughout the body n yes they use the cure word for Auto Inmune Diseases. So many disease is caused by poor Inmune system. I slowly learnt ur gut intestines equates to about 70% of our inmune system. I ask myself how did i get here. ANTIBIOTICS like penicillin which kills the bad n good bacteria kills the gut. Which i had a very bad allergy reaction too the drug at the age of 10. The Doctors never told my mother to put good bacteria back in my gut which over the next 38 yrs of my life have never put any gd bacteria back in my body. Hmmm, makes you wonder why 100k are diagnosed with IPF. Sorry i dont like yogurt. And they dont have a cause for IPF? So, i put all knds of good aceria in my gut n colonize my gut n colon n intestines with different good bacteria. And yes for years i had all kinds of gut pain n sweats prior to puttig gd bacteria back in my body. So i was no longer on a transplant list in 2012. In july 2012 my doctor told me i was deteriating still from the blow tests takin. I told her i still hav a constant soreness in my bronical tube which makes it hard to do the blow test. She ignored me n that was the last time i saw her. I continued to battle the coughig up of mucus daily as i cleansed my body. In Oct 2012 i started bikram yoga some call it hot yoga. You ask how with 2 half lungs. Slowly n with no oxygen. It was the hardest workout i ever done. All my life ive been very active in sports n a workaholic. My muscles my whole life have been sore. Im always stretching them. So i would try n go everyday to yoga but hav to soak in salts from the dead sea n get deep massages weekly if not daily. I found gd supplements for the joints n muscles that helped me keep going. I even started taking Nitric Oxide which helps dialate the blood cells to help get more oxygen to my muscles which helped during yoga. I found i was able to finally do 100% of all positions without fatiguing my muscles, wow. I was impressed n excited. So, up to Oct.2013 1yr of yoga i was never able to complete the 30 day change. 14 days max. Plus i would hurt my self by pulling things in my legs. Also, up til then i been under much stress n Aniexty from doctors, losing Insurance, bills, spending my life savings on all the good stuff insurance doesnt cover. Lost my 23 yrs career as a Field Service Engineer in the Semiconductor Industry 10yrs cleaning Ti n TiW chambers(metal dust) n 23 yrs of dirty polymer chambers. All no good for lungs. So, in Sept. 2013 i went into the hospital for broken heart syndrome, another disease they dont understand. Its a no brainer, life stresses n anxiety causes adrenaline to bombard the tip of my heart causing mass chest pain cause the heart cant pump enough oxygen to my muscles plus half capacity doesnt help. Like i said i push myself hard. And deal with heart attacks weekly. And yes more drugs from doctors. I found amino Acids help with relaxing myself instead of drugs. By Dec2013 i completed 36 days straight of hot yoga, wow. But have over done it on my knees n my legs hav had enough. So, i also found 2 enzymes called Serra Rx n Serracor-Nk along with NAC(N-AcetylRx) plus clear lungs(chineese herbs) all from Pivotal health. They have helped reduce the mucus in my lungs n disolve the scaring in my lungs n keep my lungs clean which all allowed me too meet my 36 days straight 90 min. Workout in Bikram yoga. Plus going gluten n dairy free has helped too. The next s ridding my body of candida(Yeast infection) which is caused by antibiotics. You see gd bacteria keeps the yeast in our gut at bay and cause i didnt put gd bacteria back in my gut you get candida n you develope leaky gut which causes foods n stuff to get into ur blood system which leads to allergies. Boy, did i develope all kinds of allergies over 48 yrs. So, candida causes sores in the mouth typically after eating certain foods. Candida thrives on Sugar flour products n dairy. Wow, yes its hard to rid the body of it. So, i turned to Colonics every 2 weeks n now 3 weeks n my assistant can see the candida being flushed out of my body(looks like white n flaky). At the same time colonics is flushing all the toxicians in my body out faster which is allowing my body to heal itself faster. But i must be honest with myself. I get bored over time n it is hard to keep doing the same thing over n over again. So, through 2014 i stopped yoga, gone back to eating glutten, dairy, n some sugar treats, plus stopped most of all my suppements. Its Nov.23 2014 and im drowning in mucus daily my chest n back is so tight from coughing n the muscle spasms is killing me. So, i guess i tested myself n found what works n now i must start doing it all in a more moderate pase. However, Oct 2014 i had a MRI scan done n compared to my 2011, 3 yrs earlier. And my new lung doctor said they look great. So, it be about 4 yrs now n i believe i can live with my 2 half lungs though its hard to do physical tasks without oxygen cause of my heart condition. Ill be 52 Dec. 7 n know i must keep a gd outlook on life n keep doing the things that work. Its is a life changing experience where it becomes ur life. U must find the gd things in life along the way, thats all n except it n move on. I Pray daily n at times hourly for a better life. I believe i can prevent my lungs from being attacked by my inmune system by curing my inmune system. There is no drug that can cure ur inmune system just make it worse n then eventually take ur life. I do want to say its amazing what the medical society has achieved n i do appreciate n respect the trait n there accomplishments. Its just said to see n experience doctors just dont know it all n dont have the time to answer ur questions. I believe drugs can be gd or bad for ur health. I choose no drugs cause i believe drugs might have contributed to deteriorating my Auto Inmune System n because genically its in my genes that im susceptible to IPF. They said i had 3 to 5 yrs to live without a lung transplant n its been 4 yrs now. So what u think. Stay the course…the buck stops here. I hope this helps those who are told u have 50% lung capacity n will die without a lung transplant. I say NOT!!! is the cure. Ty n god bless you all.

  130. Don Guenther Says:

    I was told by doctors at Baylor Dallas that I had a very short time to live because of my recently diagnosed fibrosis for which “there was no cure except transplantation and I was too old for transplant”. I was on 7-10 liters of oxygen 24/7. I was subsequently turned down by UT Southwestern, Tampa General, Cleveland Clinic and other lesser known hospitals without personal examination or review of my records. I telephoned The Methodist Hospital in Houston and was invited in for evaluation on Dec 2,2010. I had a single lung transplant Jan 10, 2011 at the age of 77 yrs and 10 months. At my request, my follow up care was transferred to Baylor, Dallas (same department that told me I was too old) after a few months. My point in writing is to encourage people to not let self serving hospital criteria discourage you and to consider forward thinking, extremely competent hospitals such as The Methodist in Houston. Great people!!

  131. Tommy George Says:

    Hi everyone, just stumbled upon this site and glad I did .You see I am 73 will be 74 march and am just now trying to get evaluated at Duke in North Carolina. I have PF,PH, and Emphysema. I have 20% lung function. My Dr. has not given me any life time limit. But I am having more sop now. walk 20 ft. and stats. drop to low 70s and high 60s so I am thinking it is about time to be trying to get some new lungs . so would like some opinions from some people by age. and if anyone has had a lung transplant form duck let me know how it has gone for you. Thanks Group Tommy

  132. Karen, UK Says:

    Hi, my brother was diagnosed with Alpha 1-antitrypsin deficiency in the early 90s. He had a double lung transplant in 2010 and has just started on kidney dialysis. He has been well though, it made a huge difference to his life.
    I was diagnosed with Alpha 1-antitrypsin deficiency in 2012, so not at transplant stage yet. each time I go for regular tests they are pleased with me, but as you all know lung problems can be very debilitating and you tend to run your life around things you know you can do, rather than things you want to!
    Anyway, I just wanted to say how inspiring your comments are and if ever its decided that I need the transplant I wouldn’t hesitate.
    Thank you and good luck to you all

  133. Shane Says:

    My Dad has ILD and will be seeing a lung specialist in two weeks. He has Medicare and I think the worry about cost of a transplant is weighing heavily on his decision. My question is how much does it cost with insurance(just a round about figure) and how many pills do survivors take daily. How much are the cost for prescriptions? You can’t put a price on a life. I think my Dad is afraid of getting a transplant, not surviving, and leaving his family with huge medical bills. I am hoping if I can get somewhat of an idea I can calm his worries. Also, he recently talked to a local double lung transplant survivor and was given the impression he will not be able to be in large crowds(which isn’t a issue for him) he should be very leery of germs(he has many grandchildren in public schools, will he be able to see them and be in the same room as long as they are healthy?) and this guy said he takes 40 pills a day? Will he be able to go hunting?(shoot a rifle) Any information would be much appreciated as his appointment at the U of M is soon.

  134. Kate Says:

    i have risen enters syndrome and have been told I need heart lung transplant. I would love to hear from someone who has been through this procedure. I know about the drugs and the procedure but I really want to hear from someone who has actually gone through the procedure. I would like to know about how you coped and what it was like in the first 6-12 months.



  135. Kate Says:

    It should read eisenmengers syndrome.

  136. Nora Herbert Says:

    I found out yesterday that my sister is now on the waiting list for a double lung transplant. She is 61 years old. But a very young 61, the doctor said besides her lungs she is in good health. The doctor said because she has such a positive attitude and even though she has bad lungs she still is as active as she can be. So all I can do now is hope and pray that their is no rejection and no infection and that it allows her to have a better quality of life for how ever long that God still wants her this side. If anyone could help with any advice that I can pass onto her then I would be grateful.

  137. Hal T. Wenaas Says:

    I rec’d a double-lung transplant on Oct 7th 2001. I suffered from immobile cilia syndrome & asthma. I had a bout of rejection and had a heart eblasion in the 30 days after transplant. Since then it has been great. I am very thankful for the gift of beautiful lungs from my 19 year old donor, Dustin. I have not been in the hospital since my transplant. I take a few pills every day but life is great. I work pt and have been enjoying life. I am an ambassador for lifesource and speak regularly to dr’s Ed kids about organ donation. I has been very fortunate and blessed to have 3 grandchildren. I have a positive attitude and love life. It hasn’t always been easy but I have been married to my sweetheart for close to 38 years. I have had some skin cancer problems lately but we are keeping that closely watched. Love reading your stories here. Don’t worry about all your numbers so much and just stay positive and enjoy your family.

  138. marilyn johnson Says:

    I was diagnosed with pulmonary fibrosis when I was 48 years old. I had a single lung transplant at ucla in sept of 1998. I am 16 years out and doing great. I have travelled and seen 5 grandchildren born the lord has blessed me with these extra quality of life is great

  139. Fred Says:

    I had a single about three years ago. About one year later rejection set in a couple of months later I was diagnosed with BOS group 3. I have accepted the stats because they are true as indicated by the best hospitals in the country. Sometimes I think that maybe I could have done this or that and just maybe I could have avoided the rejection and subsequent BOS. Then I snap back to reality and I realize that I did nothing wrong, things happen. Currently my life is good and I have been stable for about one year with a FEV1 of approximately 50%. I have a positive attitude, however the tall odds are never far away from my thoughts.

  140. Liz Says:

    I have LAM (lymphangioleiomyomatosis, a lung disease only women get), and the docs want me to start the process for transplant. However, my life is still pretty good. I’m not ready yet.

    Not widely known is that research shows Vitamin D can dramatically improve outcomes. “Low vitamin D levels are associated with increased rejection and infections after lung transplantation.”

    Google: Loyola University Medical Center Vitamin D lung transplant
    Here’s one paper:

    Here’s a video from the Loyola University lung transplant center about Vitamin D:

    Similar research found the same regarding heart transplants.

    A very important 2009 study shed light on just how critical vitamin D supplementation is for transplant recipients. Researchers examined the relationship between blood levels of the active form of vitamin D (1,25-dihydroxy vitamin D) and one-year mortality rates of heart transplant patients.

    They found that “one-year mortality was 3.7 per 100 person-years in the tertile with the highest [1,25-dihydroxy vitamin D] concentrations, 13.2 per 100 person-years in the intermediate tertile and 32.1 per 100 person-years in the tertile with the lowest [1,25-dihydroxy vitamin D] concentrations.”
    This means that the mortality rate was over eight times higher at one year post-transplant in the group with the lowest one-third blood levels of active vitamin D compared to the group with the highest one-third levels of active vitamin D. The researchers also found that higher blood levels of vitamin D were associated with lower levels of the inflammatory marker C-reactive protein, as well as the cytokine TNFα (Zittermann, 2009).

    Vitamin D scientists agree that optimum blood levels are 40-60 ng/ml (or 100-150 nmol/L)

    When I do finally get a transplant, I will make certain that my Vitamin D levels are at the upper end of “optimal” and will continue to keep them there!

  141. Brad Watson Says:

    Received single lung 2/19/14 at Inova Fairfax Hospital in Falls Church Virginia. Surgeon was Dr. Nelson Burton with over 30 years lung transplant experience. Pioneer lung transplant doctor Dr. Steven Nathan founded the transplant group. Found this extraordinary team by research through the Scientific Registry of Transplant Recipients containing nationwide data from all transplant hospitals. It all there, survival rates, organ time out of body (ischemic re-perfusion times), number of transplant performed and much more.

    To all ipf folks and others with end stage lung diseases,GET ON A TRANSPLANT LIST NOW. OBTAIN A LUNG ALLOCATION SCORE NOW. GET INFORMED AS SOON AS POSSIBLE AS TO IF YOU ARE A TRANSPLANT CANDIDATE OR NOT. You may NOT be a candidate! FIND OUT! DO NOT WAIT. IPF patients can fail suddenly (in as little as 3 days)so do not wait to get on a list. Please!
    You may wait months/years based on your score but you are LISTED!

    Score, you say? What score?

    Any transplant you might receive is based solely on your lung allocation score (LAS) prepared by the transplant hospital. ONLY THE LAS SCORE IS USED TO DETERMINE WHO GETS A DONOR LUNG WHEN PLACED ON A NATIONWIDE TRANSPLANT LIST. The points range from 0-100, 100 being dead. I was 99 when I received my lung due to a B+ blood type, only 12 % of population. I went from 30 points to 50 points in 3 weeks and 50 points to 95 then 99 in 8 days. I was diagnosed a little over 14 months earlier. Yes, I went pretty fast!

    Lungs are matched by chest size and blood type. Minimal HLA (Human Leukocyte Antigen)matching, (I believe 4 ea) is done due to the lung being very fragile, unlike hard organs. As my medical staff told me, they use a good lung but the “the lung you get is the lung you get”.

    Chronic rejection is believed to be caused by one or more of the following:

    1. Amount of time the lung is out of donor body (the less the better)
    2. The greater the HLA match the lower the incident(s) of rejection. That is, after the 4 HLA’s are checked the rest is the luck of the draw. Long term survivors most likely have an excellent HLA match beyond the first four antigens.
    3. Amount of colonizations and/or infections post transplant. These include pneumonia, bacterial and other vial infections.
    4. Amount, severity and longevity of Reflux disease (gerd)and aspiration into the transplanted lung.

    The general term for chronic rejection is broncolitis obliterans syndrome (BOS). You can also look it up in wikipedia. Or you can read this excellent abstract: A review of bronchiolitis obliterans syndrome and
    therapeutic strategies

    There are other factors but these are the major ones. You are trading one disease for another as you may have to face chronic rejection post trans plant that can be overcome. But they are manageable AND YOU HAVE BEEN GIVEN A SECOND LIFE THAT IS PRICELESS. ONLY OTHER ALTERNATIVE IS DEATH. Do not make your decision a hard one. Go for it. Or just wait for the alternative. It us your choice.

  142. Bob Calhoun Says:

    I developed PF in 2006 as a by-product of an autoimmune disease called polymyositis. Attacked my lungs and progressed rapidly. My pulmonologist at Yale New Haven in CT. facilitated entering the pre transplant programs at Columbia Presb. in NYC and Brigham and Women’s in Boston. They are in different organ listing zones so it made sense. As things developed, after 18 months Columbia dropped me from their program as being too high risk. What? Trust me, they are highly protective of their survival stats. We called Brigham, and they basically said that was nonsense, come on up for a clinic visit. We did so, they said I had no condition they didn’t fully expect, and listed me that day. Much to our surprise 4 days later they called and said to come up, they had a donor. This was good, as I didn’t have much time to stew about it and scare myself. I was 62 years old. The next day (Oct. 25, 2010) I had my right lung transplanted in about a 7 hour procedure. I believe my donor was living and on life support. I would have gotten the full set but Brigham has a firm policy about not disturbing cardiac bypass grafts, which I had received (3) in 2007. No problem. I was off ventilator the following day, walking around the ICU with help, generally feeling pretty decent. Little pain, except a real annoying shoulder stab which turned out to be a drain tube that was bumping against a nerve. Had a slight glitch with a small stomach ulcer, but was out of the hospital in under 2 weeks. Well into the dreaded 5th year, I feel fine, despite the daily intake of the fairly nasty drugs which immunosuppress my system and keep the lung happy in its new home.

    The negatives: Fatigue, achy legs, diabetes brought on by meds, gradually deteriorating kidney function, fuzzy thinking at times. But, then again, I’m also 66 years old, so much of this is a byproduct of age, old sports injuries and wear and tear from an active life and the hard outdoor work I did for a living. The daily pill doses are annoying, I wash my hands very frequently, avoid sick people and large crowds whenever possible, even throw on a mask now and then if I feel threatened. All a small price to pay IMO.

    The positives: A no brainer. 5 years of spending wonderful time with my family, and especially sharing my grandson’s life as he grew from 5 to 10. What a boy he is! Being around my friends, still able to do pretty much anything I feel like without lugging an oxy tank around. I indulge my hobbies, and still work, although others now do the heavy lifting!

    I don’t dwell on survival stats. I feel that my transplant gave me the precious gift of extra time with the people I care about. There is no question my days were seriously numbered before the surgery…the docs at Brigham indicated it could have been down to weeks, not months.

    My advise: If you are contemplating transplant, take care of yourself, do as the docs tell you, go to rehab to strengthen yourself, even if you need 20L of O2 to exercise, as I did. You have a LOT to gain. Post surgery, again, listen to your docs, take your pills, exercise, and enjoy the gift you’ve been given every day, no matter how long that may be.

  143. Debbie Says:

    my 45 year old son recently had a double lung transplant due to Alpha-1 Def. We are at Methodist Houston fantastic doctors & nurses here! He put off getting on the list because he was afraid he would die before his kids grew up; stubbornness & determination kept him going for 7 years with lowest 19% function. He got on the list 6 months ago & has a rare blood type so when a match came up they called us. Thank God for continued healing!

  144. Dave Davis Says:

    Hi all,
    I’m 65, an alpha-1 patient. I’ve been on replacement therapy for 25 years. I had a bad 2014 with pneumonia, valley fever. I think 2015 will be better. A Doctor in Tucson UMC wants me to get evaluated. They are restarting their program. I’ve fought through everything this last year. I constantly exercise and watch what I eat. You could say I’m in training right now for the tx. I’m scared to death because even though I am on 02 24/7, I still feel I have a life. I’ve been off prednisone for almost a year now and I see that is an essential drug needed for the transplant. I just want to thank everyone who responded on this story. The overwhelming consensus seems to be its worth it.
    Thanks again

  145. Jan Says:

    My husband was diagnosed with Intersticial idiopathic lung disease in January 2013 at the Cleveland Clinic and was in the stages of being assessed for transplant. What a kick in the gut it is to be sitting in the head transplant Drs office at the clinic! I heard ALL of the stats on survival, rejection, hardest transplant to perform, most rejected organ, hardest to match & size, $$$$ for the monthly drugs to stay alive. All my husband heard was new lungs would give him a new lease on life and I had to go with it, as to not bring him down. We’ll never know, because he bled to death on May 21, 2013 after a nurse stepped on his drainage tube after an emergency procedure at our local Summa Hospital to drain fluid from around his heart. The Coumadin did him in. I miss him so much I can’t breathe some days, but at the same time wonder if it wasn’t some kind of blessing in disguise. I did NOT want to see him suffer from the long, long road of uncertainty, drug side effects, rejection, etc. I wish all those on this post the very best – keep fighting.

  146. Katariina Says:

    I don’t know if anyone is reading this comment thread anymore, but I just want to say thank you everyone for sharing your experiences.

    My good friend (and ex-fiancé) who is only in his early 20’s has Cystic Fibrosis and is now on the list for a double-lung transplant. I’ve been trying to get all the information I can on the procedure, especially when done on young people with CF. What I’ve learned isn’t exactly positive, but it’s the reality; any transplant, let alone a double-lung transplant, has its’ risks. An about 50% chance of survival after 5 years sounds bad, but it’s better than without a transplant. I just wish he will get energy to do things, to follow his passion, regardless of the exact years. It’s such a relief to hear people with CF in their 40s still going strong, or other young people who have have successful stories to tell.

    Of course, there are the expensive drugs, rejection, serious side effects from the immunosuppressants.. at it’s best it will still be a hardship. But then again, that’s how I see it, not having lived with CF or any other serious disease my whole life. He’s used to feeling like crap, not being able to breathe, staying at a hospital; he probably has a much more informed opinion about what constitutes worthy risk.

    I can’t help but worry, though, I guess that’s natural when the person is someone who has had a lasting impact on your life.

    I’m also being a little selfish here, because I wish to see him again. We live a half a world apart and I’m a poor student, so I can’t just get up and fly over to him tomorrow, but maybe in some years time. It’s a confusing feeling, being so far away from what I consider my second family in these dire times.

    PLEASE consider donating to his transplant fund! Here’s a news video:

    And here’s the donation link:

    At this moment, he has raised $6,800 out of the $45,000 goal.

  147. chuck e Says:

    for tommy george; I am 78 years old, and had a single lung transplant 5 1/2 years ago at Duke. I have had a few minor problems, but really nothing compared to death. Dont let your age hold you back for a minute.

  148. Cindy Lodge Says:

    I am the wife of Jerry. He had a double lung transplant almost eleven years ago at Duke. We spent our third wedding anniversary in Durham, NC while he did his post transplant rehab, before returning home, three months post transplant. Fourth of July, 2004 was his transplant date. Now we have TWO anniversaries to celebrate each year! What a blessing these years together have been. I wanted to address the medication question. At the beginning, the evening of his transplant, he was given big doses of anti rejection drugs, namely Prograf (tacrolimus), Imuran and prednisone. Other lung recipients know there are other anti rejection drugs as well, but these are the ones he took. There were also a couple of antibiotics. Foo ax for bone strength was given for a few years because prednisone can weaken bones. Also calcium was given for bone strength. He also takes Prilosec twice a day to prevent acid reflux. It would not be good to be re fluxing stomach acid which might get aspirated into the lungs, causing infection. He also took an experimental drug called Valcyte. It helped to prevent the growth of CMV virus in the lungs.

    he also took Mag-Ox 400 for more magnesium. Cholesterol medicine is also taken to keep his heart and circulatory system healthy. Sometimes, he would take Lasix, a water pill, if he had any swelling of the ankles or hands. If a patient develops diabetes from taking prednisone, they would need to continue monitoring blood sugar levels and take some insulin. Jerry did not need to do that.

    An immediate effect of taking Prograf is hand tremors and difficulty focusing the eyes to read. Eventually, his body adjusted (guessing 6 mos?) And his hands did not tremble anymore. As the months go by and the blood levels are monitored, the amount of medication is reduced. Duke gave us a medicine organizer box with seven days of compartments across and four times of day down. It looked difficult at first, but, once you have the system down, it works great!

    You want to be SURE to. Do exactly what your transplant and Pulmonary team tell you to do. Take your mess on schedule. Pay attention to little details of cleanliness. A little bottle of hand sanitizer in your pocket I your constant companion. Keep your hands out of your mouth, eyes and nose. Practice this Before transplant. Your care giver should do the same.

    Cherish those new lungs. They are a very important part of you. They are a gift. Someone died and their grieving family donated them so that you could live! What a gift. Our prayer for the months before transplant was that Jerry’s new lungs would fall in love with his body and they would thrive together. And our prayer was answered.

    When you regain your strength, do what you love! Jerry loves gardening. Our yard looks like Paradise! Ht has to wear a broad brimmed hat, a sunroof long sleeve shirt, a mask, gloves and sun screen, but, because it is his passion to garden, that’s what he does.

    You and your pharmacist and your team of medical staff will have a long working relationship. And you will have a new life. Enjoy!

  149. Michael Says:

    My Dad had a single lung transplant on May 13, 2001, Mothers Day. My Dad was 64 at the time and was in the end stage after being diagnosed with IPF. He is now going on 79 and is 14 years into his new life.

    My Dad was hesitant at first to have the transplant, but is happy now that he got it done. For those who are hesitant, do it. My Dad would not have seen nine of Great-Grandschildren if he didn’t go through with the transplant.

    Has it been difficult? Yes, but it’s well worth it and the best part is that we’ve had him around for these extra years. Strong family support is the key to long term survival. Without it, those statistics become accurate despite all of those who have posted here showing that many have beaten the odds.

  150. Andrew Says:

    My grandfather was diagnosed with Idiopathic Pulmonary Fibrosis about a year and a half ago. Unfortunately, because of his age, he would not be a candidate for a lung transplant. However, I understand there are two new meds approved recently that may help slow progression. There is a great site for IPF patients that discusses lung transplantation and the new organ allocation system, as well as new therapies. This site has been a big help in educating my grandparents on their options.

  151. Joan Cutler Says:

    Hi, my name is Joan and after being given a bone marrow transplant for Leukemia, I developed Bronchiolitis obliterans (Basically my brother’s transplanted cells and my organs had a big fight and my lungs lost.)It’s been a six year battle to survive. I am being evaluated at the University of Michigan in Ann Arbor. I qualify and have gone through all extensive testing but they are holding off on listing me. They say I’m doing too well at this time.
    I have 3 children and a husband – all very supportive but I find myself in a state of sadness and loneliness these days. Just getting normal chores done around the house has been hard. I’m back on oxygen now for any stair climbing or going out side.
    I haven’t felt this in so long but I wish I could just leave this life. It’s so hard to be apart of life when you can’t breathe. Although it would be hard for them, I know my children and my husband would be ok.

  152. Rick Says:

    I had a double lung transplant at Houston Methodist Hospital on Nov.5th, 2010 so I am about to go on my 5 year. I am 57 years old and I was a heavy smoker with COPD. I am very good about taking my meds but not real good on washing my food and exercising. So far this has all been worth it. I had some real bad days in the hospital but God saw me through all of them. For the first time however I feel a bit apprehensive about my 5 year anniversary. Is this going to be it I keep thinking? I am now doing better with keeping active. Everyone keep thinking positive thoughts as much as possible.

  153. Heidi Says:

    Greeting all. My sweet, sweet mommy who suffers from failing lungs is battling a terrible infection in ICU right now. While I am so angry at her doctors for not suggestign a transplant a year ago when she was already in bad shape but was strong, my focus now is WHAT CAN I DO?? I am desperate for any contact info any of you have or recommendations of hospitals. She is in NJ now but we will transport her ANYWHERE. We need a hospital that is more mature as to infectious diseases and then we eed a hospital that will consider evaluating her for a transplant. John’s Hopkins has already said they would but the more options the better.

    I noticed some postings regarding LIVING LOBE DONORS. We have people willing to give her whatever she needs. If you have experience with living donations and can recommend a facility, please let me know.


  154. vicki Says:

    I’m a single lung transplant as of May 2014 due to IPF.
    I was told I was too old-70, but another lung doc gave me hope, so I went to get evaluated from St. Luke’s Hospital in Houston,TX. I got placed on the list Jan 2014 and got a single lung 3 1//2 months later.After one month in the hospital and 2 months in therapy I’m doing GREAT!!! At my age it took me a while to get back to normal, but it was all worth it. I now have eating and drinking restrictions plus lots of pills,but I’m alive and enjoying life with my family.
    I knew I had a lung disease since 2008 but it didn’t slow me down till I got a stomach virus. I was put on oxygen and had to dial up the level fast. That’s when I decided to try for a transplant.
    My advice is put all into God’s hands and go for it.I wouldn’t be here if not for transplant. I’m blessed every day and can’t thank ALL donors enough.

  155. William Says:

    had double lung transplant at Ut Southwestern St Paul in dall on August 31 2014. It has been a hard year. have had no major rejections, but reflux issues and fluid around the heart. Dr. said that time has doubled since survivig 1 yr without rejection. Lots of expense and travel but doing well and look forward to more years. Glad to find this site to read about others experiences. Good luck to all and God Bless

  156. William Says:

    I had a double lung transplant at UT Southwestern Dallas on August 31, 2014. It ahs been a long hard year. I have had several medical setbacks but thankfully little rejection. It has been very expensive. I have maxed out 2 insurance policies and just got on Medicare. The part D plan does not cover much on the antirejecton medications, but there are grants and programs to help pay. Would do it all again.

  157. Samantha Says:

    My little sister Amanda got her double lung transplant on July 25th 2013. She was 14 years old and she had pulmonary hypertension for her entire life prior to her transplant. She passed her two year mark and I couldn’t be prouder. Her first year after transplant was constantly in and out of the ER, because she would throw up a lot, but that all went away slowly, and now we got the hang of making sure to keep her hydrated if she vomits so that she can take her meds properly. I feel like fitness and exercise is a big part of keeping her lungs healthy, she’s young but she makes a point to work out every single day. She eats fresh foods (for the most part..) but I think the one thing that singlehandedly kept her alive and strong is her faith. She literally survived all the odds. She was only 14 when she was rushed to a children’s hospital in Toronto with severe pneumonia. She was the sickest child in the ICU and the doctor told us flat out that she had a 10% survival rate. She went through open heart by pass surgery, TWO stints on life support and even a stroke in a span of a month and a half while in that hospital bed. She only waited one month before a lung donor was found for her and she bled after surgery and had to go in again to patch it up. God bless those surgeons and doctors, she really has a guardian angel looking over her. Sometimes I can scare myself looking at survival rates online, but I remind my self that if she can beat the odds once, then she can do it again.

  158. Devin'ss mom Says:

    Hi my son was diagnosed witha lung disease called langer hans cell . He had a procedure done where they put talcom powder in his lungs. Since then hisoxygen levels haven’t been below 95. We got tomorrow for his ct scan pray for him please. They want him to have a double lung transplant but after reading articles like this makes him not want to do it. He keeps saying I’m going to die anyway. Please tell me away I can get him to think about it more. He just turned 20 August 31 so I can’t make him do it.

  159. Toni Says:

    My sister had a single lung transplant in August, 2015, at 64 years old. She had COPD with 17% lung capacity. However, all her other organs and vital signs were good, and was told she was an excellent candidate for a lung transplant. One week after the surgery she was not getting stronger and was not walking yet. She was having hallucinations and would be talking to people who were not there and reaching out for things not there, but she would come to and respond when people would talk to her directly. She wasn’t coughing enough nor breathing deeply enough, and wasn’t getting enough physical therapy or the right kind of therapy. They had a vibrator gadget that was supposed to loosen up the secretions in her lungs, but it didn’t seem to be working. Her doctor didn’t seem to be too concerned. He said she would probably stay in the hospital for an extra week and have to go to a rehab facility for a couple of weeks before being released to go to her apartment with her caregiver that was near the hospital. Well, to make a long story short, she never made it out of the hospital. She landed back in the ICU after her heart started a-fibbing 10 days after the surgery. Her electrolytes were out of whack… sodium was too low and potassium was too high… and CO2 had been building up along with fluid both inside and outside of her lung. She was intubated and bronched every few days in the ICU where she remained for 16 days before they finally decided to do something. Unfortunately, they didn’t really know what the problem was, but thought they would do a trach and insert a direct feeding tube. Well, it seems they waited too long. She went into surgery 26 days after the transplant and didn’t make it out of that surgery alive. They opened her chest back up and discovered that her heart had shifted out of position and was stuck to her lung, and when they separated it, a hole was torn in the heart… and although they patched it up and had her stabilized for a little while, her heart gave out and that was it. I don’t know how often something like that happens. That’s why I’m telling the story here. It seems to me that there were a number of things that went wrong. Possibly she was given too many drugs which caused acidosis, alkalosis, lack of appetite… and they should have had her on a bi-pap machine to remove the CO2 that was building up instead of using that new vibrator gadget… and they didn’t do enough tests or the right kinds of tests on her heart and lungs and blood gases. Also, possibly the transplanted lung was too large, which was the left lung, and maybe the heart didn’t fit snuggly enough in the niche to keep it from moving around, which may have caused pulling on the sutures which in turn may have caused the fluid build up and adhesions. She died on the operating table 26 days after the initial transplant surgery. Don’t know if this will help someone else, but who knows, maybe it will. She didn’t really have much of a choice. She wouldn’t have lived long without the surgery. She knew there would be risks, but I don’t think she was prepared for that kind of scenario. At least she tried. She wanted to live.

  160. Henry Says:

    I just wanted to thank all of you for sharing your experiences in these comments. My wife was recently diagnosed with PVOD (a rare and very aggressive form of Pulmonary Hypertension) and will be requiring a double lung TX.

    It’s obviously terrifying and coming at a very early time in our lives and in our marriage. We’re both 28 years old and have only been married two months. We’re well aware of the daunting statistics regarding her condition and life following a transplant. However, these comments have shed some serious light on the whole process, making it all seem very likely that we’ll be to shoulder this burden.

    Thanks again to all who’ve already posted and I’m hoping more do so in the future. Information is power. And I’m grateful for all of your contributions.


  161. Brandi Says:

    Yesterday made 5 years for my mother’s surgery. She is a Scleroderma patient who received a transplant at Tampa General Hospital in 2010. Prior to the transplant, she was oxygen dependent & miserable. Though she has had complications ever since 2011 including her present battle with pneumonia, I thank God for TGH & her receiving a double lung transplant.

  162. Christian Says:

    I’m so glad to read of the many transplant success stories. I work at a major transplant center in the ICU and I bear witness to all the failed transplants. If a patient does well, they’re out of here pretty quickly. I might never meet them. But the ones that immediately tank and die months later still on the vent, or the ones that are admitted with rejection and then exist at this facility for months on end until they die, those are the ones I see. Those are the only ones I see. And I see a lot of them. I guess I see the 50% that do poorly.
    My friend works in the pulmonary lab and tells me that in the introductory talk they give potential transplant candidates, they basically talk it up, giving only a positive picture. I really think candidates deserve to hear both sides of the story.
    I routinely watch patients become pulmonary cripples and die slow,unmerciful deaths. I have seen the unmistakable look of regret in the eyes of many a patient. I have witnessed individuals who died sooner with and because of the transplant, than they would have with their native lungs. And I have seen their family members live with that truth.
    It’s a gamble, for sure. A big gamble. I wish you all the best in such hard choices and circumstances.

  163. Wayne Land Says:

    It was at 6 pm while we were having dinner the phone call came that a lung is available for my wife Rose so we finished our meal and off we went to the University of Alberta hospital in Edmonton, AB, Canada for her to be given new life. That call came on December 4, 1995. This year, as a family, we will celebrate 20 years. Rose had a goal to meet her first grandchild. She has now met 7 and is ‘NANA’ extraordinaire. We were told the survival rates ranged between 3-5 years post transplant. Well, Rose has never been known to be overtly punctual but in this case we are ok with it. Actually we are blessed beyond measure. She lives each day to the fullest. Pouring herself into our children and grandchildren. A rich testimony and meaningfulness of her FAITH, FAMILY and FRIENDS.

  164. Cindy Says:

    My husband was just diagnosis with IPF just today. He goes back to the Dr. in two weeks to see what our options are . He is 61 but in good health other than the IPF. The Dr. did talk to us about the transplant in the future . It is so good to see all the success stories posted knowing there is hope for us in the future. I have decided to hand it over to God and let him guide us in the right direction .

  165. Donna Says:

    I am a 58 year old female that was diagnosed 2 years ago with Idiopathic Pulmonary Fibrosis. I have faded fast in the last 2 years. I have been on oxygen 24 / 7 with 6 liters on rest and 8 liters on movement. I can walk only short distances before I am short of breath. My lung Dr. recommended a lung transplant, and the Cleveland Clinic won’t even see me until my BMI is 3.2 so I am dieting, actually doing pretty well because I never feel like eating so that’s 1 good thing. However after reading this I now don’t want to go through the Cleveland Clinic, and I’m thinking of a single lung transplant so that if my body rejects the 1 lung I still have 1 to fall back on, however I’m not sure if that’s how it goes. I was told that there is a 3 – 5 year span after being diagnosed, and am reading that there is a 5 year lifespan after transplant surgery. I’m horrified of what lies ahead. They say that they don’t know what caused my IPF, I never worked in a factory, and I have never knowingly been around black mold. Now, I find out that the marine corp base, Camp LeJeune, NC had a contaminated water system for 30 years, from the 1050’s through the 1980’s. My husband was in the corp and we lived in Camp LeJeune from 1976 – 1977 and I was also pregnant at the time so now we are concerned about our daughter. I remember being there a short time, and contracting a horrid UTI. The Dr. said it was one of the worst he had ever seen, and I have not experienced that kind of pain since Thank God! I’ve heard that they are paying medical bills, but no cash settlement. I’m in the process of filling out the paperwork with the VA, so we shall see what happens, but it sounds to me like there are places much better than the Cleveland Clinic for this surgery so I will be looking into other avenues. Thank you for all of the information that you all have provided and I wish all of you a long life full of breathing easy!

  166. Wayne Land Says:

    It was December 4, 1995 during our dinner hour we received the call for my wife Rose to go receive what turned out to be a single lung transplant for Primary Pulmonary Hypertension. PPH. Initially it was thought she would need a heart lung transplant but the surgeon was able to repair the heart and replace one lung. The prognosis of the day was if things went well she might enjoy a survival rate of 3-5 years. On December 4, 2015 we had a 20 year ‘lungaversary’ celebration. Rose had one goal in mind and that was to live to meet her first grandchild. All 7 came to the celebration dinner. The three things that got her through were her Faith, Family and Friends. We have enjoyed great blessings and great hope.


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