Well, first off I’m sorry to hear that. As someone who’s been there before, that is definitely frightening and you’re feeling a lot of emotions right now, which is perfectly normal.

If you were just diagnosed with lung disease – It does not automatically mean you need a lung transplant. Many people who are diagnosed never need a lung transplant and are able to be treated for their disease. A lung transplant is a last option as you are essentially trading terminal disease for a new life but with many problems of it's own.

What exactly is lung disease?
Lung disease, oftentimes called Interstitial Lung Disease, or “ILD” is a very broad category of conditions that affect your lungs and airways. These conditions can be infections, chronic conditions such as asthma, COPD, pulmonary fibrosis, pneumonias and more.

Can lung disease be cured?
I’m not a doctor so I’d say more often the terms used are “treated” or “managed”, meaning that if the specific disease is identified and responds to treatment, then the doctors may be able to keep it from advancing so that you may be able to live a normal or relatively normal life. A successfully managed lung disease may still pose life challenges and restrictions, but still less challenges and restrictions than life after a lung transplant.

What kinds of treatments are there?
Treatments range from simply observing the patient to see if the disease is stable or progressing, administration of  medications such as steroids or other more specialized drugs, lifestyle changes, and more. Lung transplantation is only a final option once all other treatment routes have failed and the patient’s life is at risk without a transplant. 

Where should I get treatment?
If you were diagnosed with lung disease I would suggest getting the opinion of a major healthcare center that specializes in pulmonary (lung) disease. Just about every hospital has a pulmonologist (a Medical Doctor who specializes in lungs) but they typically are not as versed in the rarer diseases.  In my case I was seen at two major medical centers in Minneapolis and they both told me “You need to go to the University of Minnesota.”

Again, I would not worry at this stage about needing a lung transplant. Most people diagnosed with lung disease do not end up requiring a lung transplant, and even if so, it usually takes quite a long time for the disease to progress to that state. However, for some unlucky people like myself, who are an extremely minuscule percent, the disease progresses rapidly.

What about natural or over the counter treatments?
I would highly discourage these unless your Medical Doctor approves or suggests them. Unfortunately many people who are desperately looking for a cure are susceptible to believing anything that offers even a glimmer of hope. Even more unfortunate are the scam artists who prey upon these vulnerable people and try to sell them "proprietary" herbal remedies that are expensive and do absolutely nothing positive for the patient's outcome. 

When I was diagnosed with ILD, I too was searching for an answer and came across a few of these online, and also some of my more distant "friends" suddenly appeared out of the blue who just so happened to have a side business selling herbal treatments that were "scientifically proven" to work. The claim is always the same, it's that the big medical industry doesn't want you to know about this herbal blend and there's usually someone proclaiming to be a doctor behind it (oftentimes a chiropractor, who are NOT medical doctors.)  Fact: If the pharmaceutical industry was able to make a drug that worked so well, they would have done so long ago.  I know the claims by these companies can sound amazing and promising, but they are preying on your desperation and ignorance of how the human body works.

 

Well, I’ve been right where you are too. Same emotions as when you were first diagnosed with lung disease but maybe a little more perilous this time? It’s all very, very, normal.

First off, DON’T READ EVERYTHING YOU SEE ONLINE! One of the biggest frustrations I had and still have is that everyone (myself included) hops online and types in “lung transplant life expectancy” and sees “three to five years.” and that simply is not true for most of us. In my immediate circle of friends is a five year survivor and a 7 year survivor, you’d never know they had a double lung transplant unless they told you. In my hospital’s support group there’s one patient who’s 27 years post transplant, and I’ve read of some who are now over 30 years out!

While it’s true that some of us don’t live that long due to complications, 3-5 years, especially for someone younger, is abnormally short.

The truth is, if you need a lung transplant you are terminally ill. On June 8th 2025 I went into the hospital as a terminally ill patient with end stage lung disease, and early in the morning on June 9th I was wheeled out of the operating room, no longer terminally ill, and no longer a patient with lung disease.

So what are the first steps?

#1. Paying for it.
Well, sadly if you’re in the USA the first step is figuring out how you’re going to pay for it all. Hopefully you have insurance that covers it because it’s likely going to cost over $1,000,000 just for the transplant and time in the hospital, if it all goes as planned.  Mine was about $1.3 million for the surgery and 23 days in the hospital, all inclusive, not including a $30,000 out of pocket expense due to insurance deciding the center was out of network specifically for lung transplant (make sure to check, specifically for lung transplant!), plus a $4,000 max out of pocket for the year, plus misc other expenses such as parking and meals for people taking care of me.

Unfortunately I don’t know anything about medicare, but your hospital should have someone who can assist you with figuring this stuff all out. You might also qualify for SSDI as well, so make sure you check with your hospital’s case manager.

#2. The second real step is getting LOTS of testing done.
Your transplant hospital is going to have to do an extensive amount of testing on you, and it’s going to be exhausting. Most people refer to it as “hell week” because you’re at the hospital almost every day for about a week just having tests done, or waiting to have tests done. You’ll likely have the following:

• blood work
• radiology (X-rays, CTs, etc)
• swallow studies to test for reflux
• bone density scans
• pulmonary function tests
• psychology
• dental (can be a source of infection)
• counseling, family planing, and financial
• cancer screenings
• immunizations must be up to date (most centers do require COVID vaccinations)
• alcohol, tobacco, and drug screenings

The testing is to make sure that you are a good candidate for transplant, and to test your antibodies and measure you to make sure they can find a suitable match when the time comes.

The rules may differ from center to center, but most seem to be the same. If they detect ANY drugs, alcohol, or tobacco use, legal or illegal, they will remove you from the transplant list! This could be a fatal mistake–you will need to abstain from all of these substances and they will test you at random during regular blood draws! The testing is so sensitive they can detect alcohol use 3+ weeks after consumption!

#3. The transplant team makes a decision.
This is one of the most nerve wracking points. Your center’s transplant team will review your case and go over your medical file to determine if you are eligible to be put on the list for a lung transplant. Sometimes people are told they aren’t sick enough yet and it’s not worth the risk of surgery yet.  Some are told that they’re too sick to have the surgery or a disqualifying condtion was found. And some are told that they meet the requirements, and they are then typically placed on “the list” within a few days, after the patient is informed and have agreed that they want to be on the transplant list.

Things to consider 

The patient may be asked if they wish to accept “high risk” category lungs, these are lungs that could potentially come from donors who died while incarcerated, due to a drug overdose, with a history of IV drug use, or other documented behaviors that put them at higher risk for diseases like hepatitis or HIV than the average population.  This is a personal decision for the donor to make, the screening process is extremely thorough  but nothing is ever 100% perfect. However, accepting high risk organs might get you a match sooner, and might get you a younger set of lungs, and lungs, just like any other body part wear down over time and a younger set tend to perform better than an older set…but not always!  I was completely comfortable with the thought of accepting high risk lungs and when I received “the call” I was told that they were not in any risk category.

Once you are on the list you may get a call from the hospital AT ANY TIME, so you need to be prepared.  It could be anywhere from hours to months before you get the call, and once you accept the organs the process begins and you go to the hospital.  So this is the time where you really need to make sure everything in your personal life is ready.

I’ll cover that more in the page dedicated towards being on the transplant list.

These are all generalizations. I’m just a guy who had a lung transplant in 2025. I’m not a doctor and I’m not a transplant center, but having been reading about transplants for a couple of years I’ve seen a lot of common things.

Generally: You need to be sick enough where a transplant is needed to save your life, but healthy enough to survive the transplant and recover

 

Insurance: In the USA you need a way to pay for the cost. Just the surgery and initial hospital stay will likely be over $1,000,000 and you will have dozens upon dozens of follow up visits in the first year alone. 

Weight: This is a difficult one for many and varies by center, but plan on trying to achieve a BMI of under 35, ideally under 30. Typically you will not be able to be on GLP1 weight loss drugs while on the waiting list and sometimes after transplant due to the increased risk of acid reflux, which is extremely dangerous for lung transplant patients.
https://www.nhlbi.nih.gov/calculate-your-bmi

Age: This varies by transplant center but the general cutoff tends to be around 70 years old. I have heard of some centers going above that in some cases, considering “biological age” more than actual age.

Someone to care for you at home: This can unfortunately be a hard one for some people. Your center is going to need you to have someone who’s able to live at home to care for you for 90 days at home after your lung transplant. You won’t be able to drive for 90 days while your incision heals, and someone will need to be with you at home 24/7 to help care for you and monitor you to ensure that you aren’t having complications. Sometimes people spike a fever and get confused, don’t take their medications, or have a fall, have a seizure, or just need general assistance around the house. You’ll need someone to go with you to your appointments as well.  This can be a really difficult ask for a lot of people, especially working families, or single people who don’t have someone who can live with them. 

Tobacco/Alcohol/THC/etc. As  far as I know, all centers have a zero tolerance policy on the usage of these while you are going through organ transplant evaluation or listing. You will likely be drug tested without your knowledge with your regular blood work. This is not your generic workplace testing, my center’s blood lab is able to detect if I had consumed alcohol for over 3 weeks prior. THC is legal wher I live, but it’s still not allowed while on the transplant list.  This is one of those things where if you can not follow simple rules, you are removed from the program. The centers tend to be very strict on this and will not listen to excuses. One drink, one smoke, one edible, could risk your life!

Immunizations: You will be required to have a lot of vaccinations. As of mid-2026 the COVID vaccine is still one of them at every center I know. If you are firmly against getting that vaccine, then most if not all centers will be firmly against performing a lung transplant on you. This is a fact, they’ve heard all the arguments against the COVID vaccine, and if you want to have your life saved with a lung transplant you will need to follow their rules.

General good health. You need to be in general good health…other than the obvious terminal lung disease of course.  If you’ve been treated for cancer recently, that can be a red flag, depending on the type of cancer. Other diseases, conditions, etc. can all impact the center’s determination on if you will be an acceptable candidate for lung transplant. Every single one of us are different, and so are the transplant centers. 

I do want to stress that this list is by no means an absolute sure thing. It was written in mid-2026 based off what a single person knows.  Every single day technology is advancing and medicine is improving. A rule with a transplant center that might have been true last night could have changed this morning.