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No lung transplant
I was diagnosed with IPF in April ‘23. I was immediately put on oxygen 24/7 by my pulmonologist. I take OFEV 100mg 2x a day…so far no issues. My most current ct scan showed disease hasn’t progressed. I recently asked my pulmonologist about a lung transplant but he said I was too old (I’m 73) and overweight (5’7”… 205lbs) Anyone else hear about the restrictions for getting a lung transplant? I keep reading so many people who received them to save their lives.
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22 Replies
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Hello,
My physicians encouraged me to get a transplant evaluation. I was evaluated at the University of Maryland in the summer of 2023. I was 76 at the time. I had lost 35 pounds since my diagnosis in September 2020. The outcome of the evaluation was that because of my weight (100 lbs. 5’6″) and also my age, I was ineligible – at least at that hospital. Honestly, at this age, I think I would prefer to wait for the discovery of that ever-elusive drug that we all desperately need. If I were you and wanted to pursue a transplant, I would get an evaluation at the Cleveland Clinic or Mayo Clinic. I wish you the best.
Judy
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Wizard,
I suspect you’re going to see all sorts of replies here. I have been evaluated twice, going to be evaluated again soon. My understanding is that each transplant has their own criteria. I live near Tampa, Tampa General has a good transplant program, they have turned me down each time.. But they have said come back regularly for evaluation. Has been 2 years since i last saw them I have been advised that if they turn me down, go to another center, and to try to find one near me that does the most lung transplants.
I am not sure I would go through with one if qualified, but I want to be able to make that decision.
Pete Besio
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Mr Wizard 😁
I know for a fact the different transplant centers have different criteria for transplant. One friend of mine was turned down at Duke for obesity and cancer and accepted at St Joes in Phoenix. I know another lung transplant recipient who was denied at St Joes and accepted at University of Colorado. Each transplant center has their own way of rating a candidate, I’ve watched it for 9 years now and I’m clueless as to how patients are judged. You can’t do much about your age, but your weight and overall health are certainly things that can be addressed. Be in the best shape you can be then apply anywhere you’d like to go. A lung transplant is not easy and recovery can be quite difficult.
Dave – transplanted 2016
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At first I thought seeking a Lung Transplant would seem wise even though I’m 71, however my pulmonologist said that since my disease isn’t yet that advanced, I’m likely to live for several years before I was sick enough to qualify for a transplant but if I worsened rapidly we could consider it at one of the centers that take on older patients (there are several I’ve heard)
However, they all require you have a good support system with two people who will agree to be your caretaker for a few months after surgery. That disqualifies me right off the top I’m afraid.
I would think your extra weight is something you might be able to lose and qualify but you’ll likely reach a cutoff age – my guess would be more like 75-80 tops. All that aside, a lung transplant is the most complicated of all the transplants I’ve been told. It seems very difficult and for the first year or so you will face many difficulties with avoiding transplant rejection, side effects and many other hardships. For me, it just doesn’t seem worth it at my age. There is a lot to think about.
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Hi, I have had pulmonary fibrosis for over 10 years- I am now 53 – I had an exacerbation in 2020 which lowered my lung function dramatically. I am now on 02 – 24/7 and was referred to Vanderbilt Hospital in Nashville, TN in August 2024- I am overweight by 30 lbs to get put on the transplant list. Which is very hard to lose by the way when you’re so limited to exercise. I have heard that there are stipulations on age and weight and health. But my experience so far is just the weight for me at present. But I do have to say that the details of a lung transplant are like none I have ever heard of before. They told me I would have to live for 3 months close to the hospital, and that the rejection medicine I would have to take will eventually cause cancer and just the general cost of the surgery–these are just the tip of the iceberg…so at this point I am not sure if I will proceed or not. My insurance would not cover OFEV so I am on the generic for Esbriet (perfinidone) and I take 3 a day with no side effects as of yet..
I hope and pray that everyone here will get the help they need and support. It is an awful disease and maybe one day they will find a cure:)
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First, I agree with those who say that each program has their own criteria. But second, your pulmonologist seems ill-informed. If s/he is not with a teaching hospital that has a lung transplant team, I would not take his word on the age issue. On the weight issue, the criterion is usually under a BMI of 30, which you are not right now, but may be able to with diet. Good luck.
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I was diagnosed with IPF in January 2023. I contacted a transplant center in Grand Rapids Mi that is known to perform transplants on those who are denied at other programs. They told me that my age was a deterrent for the surgery since I had not progressed enough for a transplant and my age was a factor. I was 78 at the time. I had a second opinion on my medical care for this disease at Massachusetts General Hospital in Boston MA and they said they hadn’t done a transplant on anyone older than 75. If you are at a stage that requires a transplant, you have a sone time yet to search for a program.
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I’ve been evaluated twice. The first time I was on the transplant list for over 7 years but was taken of because I was too stable. I went through the second evaluation and was told I was too old (79). The rationale was that the survival rate with my age and condition was less than 50%. I didn’t like it but it made sense.
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There is a lot to digest in the comments to date. Can I suggest a free publication from the Pulmonary Fibrosis Foundation, Preparing for a lung transplant? It can be found at: https://www.pulmonaryfibrosis.org/docs/default-source/programs/educational-materials/preparing-for-a-lung-transplant/pre-transplant-booklet.pdf?sfvrsn=1762dcb4_9
The guide offers some general guidance for lung transplants and factors that may limit transplant as an option. As many have noted each transplant center (in the U.S.) may have limiting factors (age or BMI for example) they have established.
Sam …
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Hello…first time post for me. Was transplanted on Nov 14. I am 69 years old. My pulmonologist suggested an evaluation over two years ago, and I passed with flying colours. Went on the list on Dec 7, 23 and took almost a year to get the transplant. At the time of the evaluation, I hadn’t hit that sweet spot, and they told me that best for me to live with my old lungs as long as possible, until I can’t. That time came earlier this fall, and my weight dropped considerably-lost about 40 pounds since I was diagnosed in 2020, and I was on 10 litres of O2 and housebound.
So, the call came, transplant, 15 days in hospital and discharged. And best health decision I have ever made. I can now breathe without coughing. I’m gaining strength to walk a minimum of 1 km. No more fatique, food is so delightful, showers don’t kill me. I know there are potential hurdles ahead, rejection, infections, etc. but in my mind the risk reward balance here tips to the transplant. I know if I didn’t get it, I’d be gone in a short while.
Everyone needs to make their own decision, but I hope my positive experience, can be useful for anyone considering a transplant.
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I was diagnosed as well in 2023. I had an operation to repair my right diaphragm. (The left lung was the infected one) As of now I am not on oxygen or any mess. The surgeon put me on the transplant list (not sure I will do it) after the operation. I went from 215 to 165 by fasting which I believe helped. If you are serious about getting the transplant then I suggest you fast (only eat 7 hours a day) to qualify. Hod bless you and everyone on this site.
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I was diagnosed in 2017 . I’m 81 . A lung transplant is not in my future – way too old . OK – move on with the rest of your life , however long that is . Accept that you’ll go when God decides . Meanwhile , you have a life to live. As Red said in “Shawshank Redemption” : “Get busy living or get busy dying . ”
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My husband died two weeks ago of Covid/IPF. We had been evaluated at Duke, Temple, NYULangone, Columbia, U of Pennsylvania and Montefiore.
May I give my opinion as a wife of an IPF sufferer and now a widow of this ugly disease? Please look up the best transplant centers and see what they say. I’ve read of patients in their 80’s who have gotten transplants. Age shouldn’t be a factor As for your weight the center will tell you if you need to lose weight and how much. Now with diet drugs it may not be as difficult to lose the weight.
My husband was rejected due to several physical problems with his heart and aorta. Discuss with the transplant centers’s social worker concerning having 2 people to help you.
Please try. If the centers say no then at least you have tried. I know we did as much as we could to receive a new lung but it was not to be. The end was difficult but my husband was surrounded by people who loved him only the transplant centers can tell you no transplant. Best of luck
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Kathy,
I am sorry for your loss. This disease is horrid not only for the patient but also for the caregiver.
Your advice is sound. I would add that many centers, with a referral from your IPF care team, will look at patient records and decide if they would like to meet the patient for further consideration.
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HI Wizard – I am 72 with IPF. Live in Ohio. My pulmonologist wants me to pre screen for a lung transplant. I figured I was over the age limit. I know that The Ohio State University Hospital does transplants up to age 75. Also Cleveland Clinic transplants past the age of 70. I know at OSU your BMI has to be under 30. I was diagnosed 5 years ago and take OFEV 150 mg twice daily. No issues with OFEV. My recent PFT testing was not good. Pulmonologist told me that I am within the requirements to qualify for a lung transplant. Not sure yet what I am going to do. I have other health issues so I might do the pre screening to see if I even qualify. Was going to pulmonologist ever 6 months. Now going every 3-4 months. Just started weight watchers to lose some weight. Hope this information helps you. Marianne
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I agree that different centers have different criteria. The Mayo Clinic told me 74 was the oldest the did. The problem I have is how can our government allow medical institutions, who live off federal subsidies, openly discriminate based on age. Their discrimination can result in premature death of patients, isn’t that a conflict of their hypothetical oath? It is just a continuation of open age discrimination that is overlooked in America. They should be doing everything possible to save our lives.
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Wizard,
I’m truly sorry that you find yourself in this position. I don’t see anyone else saying this so I will: you have to live near a transplant center that is willing to accept you. When a donor becomes available, you need to be at the hospital ready for the transplant at a moment’s notice. That would mean moving to the proximity of the transplant center and living there for an unlimited about of time until a donor becomes available. That would likely mean losing your support system (who may not be able to move with you) that you will desperately need in the months after surgery; not to mention the cost of a move to what is inevitably temporary housing.
Also be aware that a successful outcome from the transplant still depends on your age, weight, health risks, etc. even if you find someone willing to perform the surgery. So when you find a center that is willing to take you, be sure to ask them their record of successes for people with similar age, health, etc. before you make your choice.
Sorry,
jon
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I was diagnosed officially March 2021. My lung biopsy also revealed that I had a 1/2″ cancer tumor in my left lung. Miraculously however, in the PET scan s month later the cancer could not be found. I remain cancer free and doing well by combining OFEV with a strong exercise program. I was disqualified from UCSF, UCLA and St.Joseph’s based on the criteria that you have to be 5 years cancer free. Now I am soon to be 75. Oh well, not my path. I believe there transplant centers nationally that will make an exception for someone that is around 70 that no other health issues.
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I want to add to my original response. Temple in Philadelphia accepts riskier patients for transplant. They actually state this on their website. They have the highest volume of transplants in the US and greater than average survival rates at 1, 3, and 5 years. I appreciate the above information about location and temporary relocation. My understanding is that you also have to be within a certain distance of the center post-transplant for a considerable period. I have not been evaluated but I don’t think age is a criterion at Temple or many other centers. I am 77, underweight (due to Ofev), and do not have 2 dedicated caregivers (certainly not 2 who could move with me). For the last 2 reasons, I don’t think I would be accepted. Lung transplantation is a big commitment and I truly admire those who have chosen to take that path.
Best wishes to all,
Judy
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Is your pulmonologist part of a group that does transplant? If not, I would contact your local transplant program directly. While age is a factor in success rates, the greatest factor is your physical age. How healthy is the rest, your body, your organs and so forth. Yes, weight can be a factor. Losing some weight will show them that you are serious about making the effort. Recovery does take a lot of effort and patience and a great support system
Once my pulmonologist gave me the criteria to qualify, I took action to get my weight down. Qualifying means going through an abundance of testing to verify that you’re healthy enough to go through the transplant and also to adjust any factors that may help you be even more successful.
I was blessed to get my transplant 10 months ago at the University of Minnesota. I am only 64. However, every Monday there are about 40 U of M transplant patients that participate in a transplant support group on zoom. There are several patients in our group that are over 70.
If you are a fighter and have a strong constitution don’t give up. Contact your nearest transplant centers directly by phone. Once you get in touch, they will help you navigate whether or not you might be a good candidate and what specific criteria they have for you to be evaluated.
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I have been on Zepbound from Eli Lilly direct I have lost 30 pounds and am breathing much better.
Diagnosed in 2020 on OFEV. Since these GLP-1 agonists may help other areas I’m wondering if my lung function is better
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Hello wizard
I was diagnosed with PF and ILD, along with RA in 2015.
I will turn 70 this fall, at the time of diagnosis, I had a discussion about all the options and treatments. A lung transplant is one the few major surgeries that will take considerable toll on you for years after, depending on how well you react to the procedure.
In 2013 I had surgery called “the whiple ” due to a rare condition called Zollinger Ellison.
Every medical center that does transplants have their own requirements, age, weight, overall health, mostly due to the experiences it has encountered.
I was recently tolled by a surgeon that he would never do surgery on me, because he felt I would not make it off the table.
I made the decision it to do any transplants, as I would still have the underlying inflammation because of my RA. Also the cost, many insurances do not cover such or maybe a little.
Exercise is always good, I had found that what really causes weight lose is diet.
I was on ofev, but my doctors took me off about a year ago, because I was losing to much weight to fast, they felt is was suppressing my appetite, nope still losing weight. This Friday will see if I go back on the medication.
As others have said look at all the places that do such transplants, maybe even in other countries.
The recovery time, of course will vary for each individual, my recovery time from my whiple took a little over 6 months with one revisit back to hospital due to infection.
And I had many friends and family members for support.
Good luck on this path we are all now adventuring on
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