Organ Donation


Why am I a lung transplant coordinator?

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We, transplant coordinators, sign up for this with one goal: make a difference in somebody’s life. As a lung transplant coordinator I have the opportunity to make a difference with patients who have a deadly disease that a lot of you are familiar with that is called pulmonary fibrosis. As a lone coordinator of a new lung transplant program I have had the opportunity to do it all. I was the one making initial contact with a sick patient referred to us, walk them through the whole process, brake the news they were approved for transplant, place them on the waitlist and then call them once a donor was available. There is not a better feeling than offering hope to someone who is short of breath by just talking on the phone. A lot of work needs to be done by the transplant coordinator and also the patients/caregivers to get there. The reward is the actual transplant but there is still a lot of work to be done after the surgery. I have seen patients go through ups and downs when recovering. The proudest moment for me as a lung transplant coordinator is when someone finally rings that bell at discharge time. The patient is finally going home with his new lungs and a second chance at life. The patient and family is forever grateful but we are also grateful towards the patient who at the end of the day is the one who trusted us with their life. The next big milestone after that is the one year anniversary. To see the patient looking like a “normal” person again is very rewarding.  All the pain, suffering, tears shedding that occurred following the transplant is now forgotten: it was all worth it.   The patient is enjoying life again and making plans for travel or whatever else they like about being alive.  


If I had to give you one advice it would be to seek out a medical opinion at a lung transplant center especially if your treating physician is not doing it for you. Only a lung transplant center would be qualified to tell you if you meet the criteria to be a lung transplant candidate.

Should financial incentives be allowed for organ donations?

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           The National Organ Transplant Act (NOTA) was first signed into law in 1984 under President Reagan and underwent a few amendment in the following years.  What this law makes clear is that it is illegal to sale  human organs for transplant.  To this day it is still the law of the land.  There is, on average, about 120,000 people waiting for organ transplant in the US with the majority waiting for a kidney.  Last year was a record year with over 10,000 donors and almost 35,000 organ transplantations  in the US alone.  Roughly 20% (6,182 exactly in 2017) of those transplants were from living donors.

            It is not difficult to realize that not everybody will get a second chance at a better quality of life.  There is way more demand than offer.  The number of living donors has been pretty steady for the past 5 years according to UNOS data.  It is the number for deceased donor transplants that is expanding every year.  The increase in donors was credited to the opioids crisis who is unfortunately killing a lot of people.   Without any sort of financial rewards it would be difficult to imagine the number of living donors increasing from now on.  Any financial rewards is illegal at the moment in the US but we are kidding ourselves if we think brown envelops have never changed hands in the history of organ transplant.

              You need some very unselfish people to give a kidney to a relative and sometimes a stranger.  Unselfishness in this case is not enough to increase the number of living donors as we have seen over the past 5 years.  Money or some other form of financial incentives would most likely help.  At the moment everybody involved in transplant profits in one way or another with organ transplantation.  Transplant hospitals makes money off the actual transplant surgery and follow up care, physicians make a living out of those patients, drug companies make tons of money selling their medications and also let’s not forget about pharmacies who also profits from all that.  Organ procurement organizations (OPO)  also are able to stay in business by managing donors and maximizing donation.  Basically the only person not profiting from any of that is the actual donor or its family.    Should money (cash) be the only incentive???  Should only living donors get those benefits??  I don’t think so and will be covered in part 2 where we will cover the pros and cons of such system and different types of financial incentives. 

What is it the age limit to receive an organ transplant?

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Young vs less young

Usually, for younger patients, it is almost automatic to be accepted by a transplant center unless there is a major problem anticipated with compliance after the surgery or some other contraindications. For older patients it is a little more difficult because they sometimes have other diseases like diabetes, heart disease (for non-heart transplant patient), kidney diseases, etc. The physicians draw fire sometimes for wanting to transplant older patients (read more than 70 and for some center even 65) and argue with each other because they all have different opinions . The physicians’ response in this cases is “the patient is the one that showed up asking for help so we are going to help him if we can”.  Some older patients do get transplanted and end up doing well.  Some are denied because their multiple medical problems make the transplant too risky.  A transplant surgery should always be treated as an elective surgery.  If we don’t think the transplant will do any good, it should not happen.

Competition always brings the best

Don’t get me wrong though, some transplant centers will not do patients above 70 and sometimes 65 years old. It is more about the philosophy of the center and their aggressiveness. Another important factor who plays a role in accepting older patients is competition around the transplant center.  Is this the only transplant center in town and they can afford to be more picky??  Is there a hospital across the street competing for the same thing therefore have to accept older patients so they can do more transplants??  Just like in any business, competition will bring more service so look around and do your homework. 

MRB: like your life depends on it

Every transplant candidates case go in front of a medical review board who reviews everything in depth. This group includes physicians, surgeons, social workers, nurses, financial specialists and any other experts needed. As a group, they decide if someone is a good candidate or not. So, if you need an organ transplant and you have been turned down at some hospital solely because of your age, keep looking because you may find a hospital willing to transplant you.  You may have to travel to another city or out of state but at least you may get a chance.  It is simply possible that you may just be too old too.  No transplant centers have an obligation to transplant you.  

Million dollar question

Now is time to answer the question about age. There is not any written rule about age limit for organ transplant. It is based on each transplant center policies and belief. If you are an older patient, I would suggest knocking on every door until you are out of option if you really want a chance at life. You may find a transplant center willing to give you a new life.

The Truth About Organ Donation

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There are still a lot of myths about organ donation and that could explain why millions of people have not signed their state registry yet (in this blog I will mostly talk about deceased donors because living donor is much different). Education is the key solution to achieve higher success and it is just hard to reach everybody. The reason we are signing the registry is to become a deceased organ donor if we eventually become brain death. This condition, brain death, is used as a legal definition in many countries. It is irreversible and is usually caused by a lack of oxygen to the brain AKA brain anoxic injury. Before declaring someone brain dead, physicians will perform several tests so they can apply that diagnosis to the patient. They mainly look for reflexes like checking if a patient will breathe on his own after unplugging the breathing machine and will also look at pupils reactions (or lack of reaction) with light.

One of the main fears is that people are scared that their doctor will give up on them faster because there are potentially good organ donors. This is not true at all. If you knew how most physicians hate to lose patients, you would understand that they will do everything for you.  That could be true if they were receiving money for their patients organs but that is illegal in the US and hopefully would be unethical among all the physicians.  A transplant physician can’t be treating a potential donor as this will cause a major conflict of interest.

Once a patient is declared brain dead, the Organ Procurement Organization (OPO: regional organism mandated by the government to manage donors) come into play and will make contact with the family. If the potential donor has signed the registry, they don’t have to ask for permission to the family, the patient becomes automatically a donor. This is why it is important to talk to your loved ones about your intention regarding becoming an organ donor. SIGNING YOUR ORGAN DONATION CARD IS LEGALLY BINDING.

The coordinator from the OPO will have to interview the family or friends in order to get the most accurate social and medical history possible so transplant centers can make an informed decision about the quality of the organs for their recipients. The extent of the truth about a medical/social history for a donor is not known for the simple reason that who really knows you well enough to be able to tell everything to the coordinator. This is why blood tests are performed. It is to look for transmissible diseases like hepatitis B and HIV.  All the information collected by the OPO will be made available to the transplant centers.  Rest assure, nothing that could help identify a donor will be shared with the transplant recipient or its family.  Patient confidentiality is the main element of trust for the system to work.  Once a transplant center reviews a donor and is satisfied about the match, the transplant can proceed hopefully for a successful outcome.

In a different post I will tell you why I unsigned my donation card despite wanting to become a donor if I were to become brain dead.

Do I need to be rich to qualify for organ transplant?

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The answer is YES!! if you don’t have health insurance or can’t fund raise a lot of money.  For everybody else with insurance you don’t, not even close.  A lot of people I talk to think you need to be at least in the middle class with private insurance to qualify for organ transplant. This is a myth. Over 80% of the transplant recipients have Medicare or Medicaid as a primary insurance and have no job and live with social security.  As a matter of fact, a transplant center that does not have a contract with Medicare for organ transplant has no chance of running a large program.  Medicare is where the money is for the hospitals that do transplants so yes government insurance is good enough.  Most of the patients I follow as a transplant coordinator are on some kind of patient’s assistance because they have limited income and can’t pay for everything, especially the most expensive drugs.  Some of this assistance is provided by drug companies themselves and some by charitable organizations.  If you ask your transplant or financial coordinator they should be able to assist.  Yourself, as a patient or caregiver can actually apply directly.

The majority of patients waiting for kidney transplant is disabled and has Medicare as primary insurance. They have to go to their dialysis treatment three times a week for 4 hours a session.  It is very difficult to keep a job that provides insurance in this situation.  Most patients are wiped out for the rest of the day after dialysis. They rely on their social security income to make ends meet. They can still qualify to get a kidney transplant when time comes. The average wait time for kidney transplant these days is anywhere between 3 to 5 years. This is why a lot of people are working hard to improve the rate of organ donation because life on dialysis can be miserable.

There are not many people that could pay for their organ transplant surgery cash. The average kidney transplant cost around $500,000 USD without any major complications. A heart-lung transplant is on the most expensive with the price tag being just under $1,000,000 USD.

So, yes it is possible to get an organ transplant if your income is limited and you are disabled because Medicare is the most common insurance. Don’t think that they won’t treat you as good as a private insurance patient because no transplant center wants to lose the lucrative Medicare contract. Your survival is very important for your hospital!


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Frequently Asked Questions Regarding Organ Donation

Frequently Asked Questions Regarding Organ Donation

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1) Will the donor family have to pay the cost for the organs to be donated?

There is no charge for the donor family during an organ donation process. All costs are covered by the organ procurement organization (OPO). The OPO will get pay by charging the transplant centers who recover the organs. The family will only have to pay the cost of the funeral.

2) Will it be possible to have an open casket at my funeral?

Yes it is possible. Most of the donor can have open casket funeral.

 3) Can the family decide who gets the organs?

Yes and it is called a direct donation. If your family knows someone that needs an organ transplant and is potentially a good match, it can happen. The family will have to inform the organ procurement coordinator at the time of consent and then they see if there is a potential match.

4) If the family does not know anybody waiting for an organ transplant who decides where the organs go?

Nobody, it’s UNOS’s system called DonotNet. DonorNet is a huge database that includes the names and information of every patients waiting for an organ transplant. The ranking is based on blood type, how sick the patient is, location. The computer system will produce a match list based on certain organ criteria. Every organ has different criteria.

5) When will the donor’s heart stop beating?

This happens at the very end of organ donation. Once in the operating room and all the organ recovery teams ready to harvest the organs, the surgeon will apply a clamp on the aorta. This is called the cross-clamp time. This is when everybody starts racing against the clock because the timer has started. The heart has to be pumping blood again within 4 hours. Lungs have up to 6 hours to be ready to go. 12 hours is needed for the liver. Kidneys can be put on a special pump and wait up to 48 hours before transplantation.


If you have more questions feel free to send them and we will respond.

How to Choose your Organ Transplant Center

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It may not be easy to decide where to have your organ transplant with all the options you can find out there. Every hospital promotes itself as the best in its category (you have heard that before, right?!). The patients who live in a large metropolitan area are lucky because they may have access to several hospitals close to home. Kidney transplant is the surgery that is the most performed and has the most widespread locations. Hospitals are competing for potential transplant recipients and the more patients they have on a list, the more chance they have to transplant kidneys. The same applies for any other organs but with a slight variation for lungs and liver. These are the only two organs where patients are given a score more based on how sick they are rather than a priority ranking (first come first serve type).

Here are a few questions that a potential transplant recipient can ask the transplant center during interviews. Remember, as a patient you have the right to choose where your transplant will take place:

1. What is the patient/coordinator ratio once I get my transplant?

The reason behind this question is simple. You need to know if your coordinator will be overworked by following too many patients and if your calls are going to be returned. Lest patients per coordinator is better.

2. What is the average wait time on the waiting list?

Important to know as some centers have shorter wait time due to the fact they are more aggressive in accepting organs.

3. What is the survival rate after 1 year and 3 years?

That information is supposed to be communicated to you every 6 months by letter. It is mandatory that every transplant centers inform their patients about outcomes. Keep in mind though that some hospitals have lower survival rate only because they accept sicker patients that have been refused by other transplant centers.

There is another piece of information that is not well known among patients. Whether you are waiting for any type of organ transplant, you can transfer your care to a new transplant center for any reasons while waiting and you keep your priority on the wait list. You would not have to start all over. Also, you can be followed by more than one transplant center so you can increase your chance of getting an organ transplant. I suggest that if you do that, you go to two transplant centers in 2 different regions so you have access to more donors. You can do that as long as you respect your transplant center policy regarding distance to travel for the actual transplant. There may be some restrictions for heart and lungs. Whatever you do, just be as informed as you can be.


Lung Transplant: How Long Will I be Waiting

What to Choose? Deceased Organ Donor or Donation After Cardiac Death (DCD)?

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Actually, everybody on an organ transplant waiting list is waiting for a deceased donor. It is the kind or deceased donor that may be different. Just like I talked about it, there is the brain death donor. Remember that a brain dead patient is legally dead even though the heart is still beating. It happens that a potential organ donor does not meet the criteria of brain death despite suffering irreversible major brain injury. The organs cannot be used or planned to be used until the patient is legally dead. This is where Donation after Cardiac Death (DCD) comes into play. It has been done for the first time in the 1950’s but has routinely been explored as an option since the early 90’s.

Here is how DCD works. You have a patient, a potential organ donor, who has extensive brain injury. The family is talking about life support withdrawal (removing breathing machine that keeps patients alive) but the patient did not meet the criteria of brain death. The family can now be approached by a well trained organ procurement organization representative to discuss organ donation. If the family consents to DCD donation, medical management continues to keep the patient alive so the organs can be matched with transplant candidate. Once organ transplant recipients are matched with the donor’s organs, which can take several hours to achieve, the most crucial part of the whole process begins. Depending on policies in different regions of the United States, the patient is now brought to the operating room or can stay in the intensive care unit.

The life support is then withdrawn (breathing tube removed, medication stopped) and medical staff is standing by waiting for the heart to stop. Once that happens and they need to wait 5 minutes before they can do anything else. The heart needs to be stopped with no blood pressure for 5 minutes. A physician unrelated to the organ donation process declares the patient dead along with the official date and time. After those 5 minutes and patient is pronounced, they are rushing to resuscitate the donor and to put him back on the breathing machine. During all that time, transplant teams have been standing by at the hospital ready to recover the organs.

What happens if the patient does not die? Usually guidelines are strict and if the patient has not passed within the timeframe allowed, 1 or 2 hours depending on policy, the patient is sent back to the nursing floor and the transplant process aborts. Everybody goes home empty-handed.

For someone to receive an organ from a DCD donor, they need to be specially consented for donation after cardiac death. It may not be every transplant center that is comfortable with that so some may not be offering the option to their patients. Basically the patient waiting for organ transplant consenting for donation after cardiac death is giving himself more chance to get a transplant since it increases the donor pool. For the last few years, there was an average of 3 to 5% of donation coming from DCD donor. That number seems to be increasing every year. Some regions are more aggressive at pursuing DCD donor where others are more passive.


Facts about Organ Donation

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Becoming an organ donor is the single best action someone can take to be remembered after passing.  In the United States about 1 person out of 4 is a registered organ donor with their state.  In reality, more people may be willing to sign that card but they don’t do it due to a lack of time, motivation or whatever else.  Even if they do, sometimes they don’t talk about it to their family so when time comes to donate those organs, the family refuses because they are not sure it is the right thing to do.  Signing the organ donation card for your state registry is the first step toward becoming an organ donor.  You also need to talk about it with your family.  Some organ procurement organizations (OPO) have decided not to force family to accept donation after the death of their loved ones even if the signing of the card binds the potential donor legally.  They have chosen not to use confrontation.  So, it is very important that you talk about that with your family so they can honor your wishes.

Organ donation by the numbers.

There are over 110,000 people waiting for an organ (heart transplant, liver transplant, kidney transplant, lung transplant, pancreas transplant, etc.) in this country.  Out of those just about 72,000 are actively listed meaning that the other 38,000 are either too sick at this time (infection or other), do not fully meet criteria (need to lose weight) or have new health issues that just popped up.  Waiting lists are growing faster than patients can be transplanted.  The waiting list went from 18,000 names in 1989 to more than 110,000 today which is more than a 500% increase.  During the same time period the number of organ transplants went from 13,000 to 28,000, a 110% increase only.  The number of donors, including living donors, went from 6,000 in 1989 to

14,000 in 2010, again 110% or so.  The main reason for the increase in donors is the widespread use of living donors especially for kidney transplant.  The number of living donor is almost equal to the number of deceased donors.

Ways to increase number of organ donor

It used to be a time where only pristine donors were used with strict criteria.  A donor in his 50’s was considered pushing it.  Nowadays 65 is the new 50.  It is not uncommon these days to see 60 years old plus organs being used and for the most part they work just as well, for a while anyway.  Transplant physicians are considering using, on a routine basis, organs of donors up to 70 years old in good health.  This is called extended criteria donor.  Lungs from smokers are also used in lung transplantation.  If they were not, you could eliminate about 50-60 percent of the lung transplant surgeries since there would be less lungs available.   All those measure are meant to increase the pool of potential organ donors.

Why become an organ donor?

Because it is the right thing to do.

Once you die you do not need those organs anymore.  If they are still good  to be used, have someone else enjoy them.  Who knows, you may be the one that needs an organ transplant later on in life and wish that more people had signed their card.  Did you know that your family could do a direct donation on your behalf if they happen to know someone that needs an organ transplant?  Even if the recipient is not on top on the list, you can direct the organ to that one person.  Be cool, be an organ donor.

Tax Credit for Organ Donation

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The state of Pennsylvania voted a law for tax credit for employers who allow workers become organ donor. This is very interesting that states are getting involved at that level to promote organ donation. The only problem is only 3 companies used the credit last year. Not sure if it is by ignoranceor there was just very few living donor. Let’s hope it is well publicized and more people will enjoy that benefits.