Organ Donation: consider a change of heart

We’ve all been asked whether we want to be an organ donor at the DMV, but very few people know what that entails. Organ donation is the practice of giving your organs to someone else who’s organs are failing. Over 33,000 lives were changed by an organ transplant last year alone. While this usually happens after brain death, it can happen after cardiac death (meaning your heart stops) in rare cases. (Side note- to clarify, brain death and coma are two separate things. There is no medical or legal difference between brain death and cardiac death- they mean the same thing. They won’t procure your organs if there’s even a small chance of recovery.) Let’s talk about organ donation, what happens, and some common myths.

Picture1

As a disclaimer, I spent a month in medical school on the Transplant Surgery team, and  was one of the most meaningful experiences of my career. We were able to turn heart-wrenching tragedies into hopeful opportunities. I would walk out of one room where a family was crying with sadness, into another where they were overcome with joy and gratitude. I hugged the families of donors as they thanked us for helping their loved one live on through others; I prayed with the families of recipients for the peace of the donor; I played our donor’s favorite music in the operating room as we prepared to save 5 other lives. It reaffirmed my personal decision to be a registered organ donor.

Picture2

What happens if you’re an organ donor?

Probably nothing. You go on, live your life, and nothing major happens. On the off-chance that something tragic happens and you die, it’s very possible you may not be able to be an organ donor- there’s a lot of exclusion criteria (including age, infections, cancer, certain medications, etc.). But if you don’t meet any of these and are a registered donor, the procurement process will begin. If you aren’t a registered donor, they will ask your next of kin/power of attorney, who will make that decision (so if you know you don’t want to donate your organs, tell them).

Who gets the organ is decided by the United Network for Organ Sharing, or UNOS. They create a numbered waiting list, that depends on a variety of factors including how sick they are, if they have other medical problems, how far away from the possible donor they are, waiting time, etc. You can’t preference that a specific person gets your organs (unless you’re a living donor, for kidneys or sometimes liver)- so no, you can’t ask that Beyoncé gets your organs if she happens to be needing one. Whoever the possible recipient is would get a call, and they would go into the hospital to prepare for surgery. Yeah, people on the organ recipient list have to kind of just hang out and wait for a phone call that they get a new organ.

Here’s what I would consider the most upsetting part of organ donation for many people (and what causes some to decide against it)- there’s a good chance your family won’t be there when your heart stops. For most procurements, they occur in an operating room, and family can’t be present. Like I mentioned, there are some exceptions where people donate after cardiac death (their heart stops), but this is the minority of donations. When I was on the transplant service, we did everything we could to make the OR a reverent space, but I know that is not what everybody wants.

Who gets my organ?

Someone who has been through a long screening process. First, an organ (or sometimes multiple) have to be failing. To then be considered for organ transplant, you have to be evaluated by a transplant surgeon. Not only do they consider surgical concerns, but how well they would do after the procedure. Being an organ recipient is a big undertaking, and will require a lifetime of medications and doctor’s visits to make sure it keeps working and their body’s not rejecting it. Are they financially stable enough to afford the medications? Are they currently using alcohol or drugs, or have they used them in the last 6 months? Do they have close friends or family they could stay with while they recover from surgery? Do they have other medical problems, like cancer, that will cause them more lifelong health issues and may prevent them from taking transplant meds? If the answer to even just one of these is no, they may decide that the patient is not a good candidate, and stop the process right there.

While this may seem harsh, organs are a limited resource, and many, many people need them. 20 people die waiting for an organ every day. If you give the organ to someone who can’t take their medications, or will continue to drink and ruin their new organ, you’ve just cost someone else that chance at life. You’re also not doing someone any favors by putting them through a major, dangerous surgery, if you don’t think it will end up helping them.

Picture3

Fact vs. fiction

If you’re an organ donor, doctors won’t try as hard to save you.
While this is the most pervasive myth I’ve heard, and is scary, this is completely FALSE. Every effort will be made to save your life. The team taking care of you plays no role in the organ donation process- there is a completely separate organ procurement organization (OPO) that would arrange it. At my institution, the healthcare team isn’t even allowed to discuss the possibility of organ donation with the family, to ensure they don’t feel pressured to make a certain decision. The primary goal of every physician is to save the life of their patient. We don’t see you as a bunch of organs all jumbled together, but as an individual who has dreams and goals, and a family who will be devastated if something bad were to happen. But we also know that death is unavoidable no matter how hard we try, and want to offer the chance to help others in the process if appropriate.

If you’re an organ donor, doctors won’t work as hard to prove you’re dead.
This is also completely false. In fact, organ donors, on average, have more testing done to prove their brain death than non-donors.

If you donate organs, you can’t have an open casket funeral.
If this would be important to you or your family, you can still have an open casket funeral after organ donation. The surgeons will make sure to repair any incisions well, so that your loved ones can have the closure they want.

My religion won’t allow me to donate organs.
This is something that I actually had previously believed, but learned that while there may be isolated religious leaders who don’t support it, this is usually false. There are very few world religions that preach against organ donation. In fact, it is often seen as an act of charity. The only groups I could find with specific concerns about organ donation are Gypsies and Shinto. Even Jehovah’s Witness leaders have said there are no rules against it in their texts, and it should be decided by the individual. Some Orthodox Jewish and Christian groups believe that it should not be performed on someone who’s heart is still beating, even if they are braindead; if you share these concerns, you can make specific directives in your living will about only being an organ donor after cardiac death. If it’s important to you, make sure to discuss your decision with religious advisors.

If you’re old/have hepatitis C/have HIV you can’t be an organ donor.
This may be false… but really depends. Some organ recipients who already have hepatitis C or HIV can choose to expedite the process by saying they would be okay with receiving an organ from someone else who also has the same infection. The age limit varies depending on the organ. Regardless of whether your organs would end up being usable, you shouldn’t let this deter you if you’re otherwise interested. The teams involved will be sure to do a variety of tests and find a comprehensive medical history, and will make the appropriate decision.

Steve Jobs bought his way onto the top of the liver transplant list.
This is (mostly) false. Except for making sure you are financially stable, like I talked about earlier, money plays no factor in the transplant list. You couldn’t even try to bribe a doctor, because once you’re on the list, a computer decides the order using standardized calculations (spoiler alert: income and if you’re famous are not part of it).  What rich people can do is they can move to an area of the country where the list tends to be shorter, which is possibly what he did. The only way to skip the wait entirely would be to have a living donor, which is often not an option, depending on your disease and what organ you need.

My family will have to pay for the organ donation.
This is false. Your family/insurance will have to pay for the costs of procedures/treatments that were in an attempt to save your life, which are sometimes misconstrued as donation costs. But once the decision has been made to proceed with organ donation, the institution or sometimes the recipient pays the costs.

This sounds awesome, how do I sign up?

I’m glad you’re interested! But make sure you make the decision that is right for you and your family. For more information, visit donatelife.net. If you have more questions about the process, you can read about it here. If you decide to become an organ donor, be sure to discuss it with your family- while legally, they cannot prevent you from donating your organs, you want to spare your family the pain of another unexpected twist in an already devastating time. If you have specific organs you wish to not donate, or only want to be a donor after cardiac death, you can specify that in your advanced directives (which you can learn more about here).

For organ donation, you can register either at the DMV or online at https://organdonor.gov/register.html.

Picture4

What if I want to donate an organ before I die?

Great!! While you need most of your organs, there’s some things you can do without. Being a bone marrow donor is the most common; this will largely benefit people who have leukemia (blood cancer) or some sort of immune problem. Go to bethematch.org to learn more.

Picture5

Superhero (AKA living donor) Francia Raisa and singer Selena Gomez, after Gomez needed a kidney transplant due to lupus

The most common solid organ donation is kidney. Almost everybody is born with two, but you really only need one. Some people donate the other one, usually to a loved one, although you can donate to a stranger if you’re feeling really generous. Chances are you’ll live a normal life after that. Thing is, then you’re kind of screwed if something goes wrong with your one kidney, and a lot of common diseases mess with your kidneys (like diabetes and hypertension). If this is something you’re considering, make sure to talk with your doctor. You’ll probably have to go through an extensive screening process to make sure you don’t feel coerced and that you understand completely the possible ramifications.

What’s the point of this ridiculously long post?
My point is, organ transplant is really important. Over 700,000 transplants have occurred in the US since 1988, and while that number is staggering, it’s still not enough. Every ten minutes, someone is added to the transplant waiting list. I understand that thinking about your own death is uncomfortable, but it’s important to consider your own feelings on organ donation, and if you support it, to go through the official process.

I would encourage everyone to consider being a donor, as you can save lives and make others healthy again. But you should never feel pressured to make a certain choice, this is an incredibly personal decision. Just make sure to have all of the facts before you decide. And let’s all applaud the courageous people who decided to save others in their final moments. In closing, here’s a short video about one of those people.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s