Right now in this country, there are more than 110,000 men, women and children awaiting life-saving organ transplants.

Of these patients, 60% of them are minorities.

And a new person is added to the list every ten minutes.

But sadly, about 8,000 people die each year because the organs they need are not donated in time.

It's possible that you've given consideration to organ donation or have given some thought to your final wishes on this matter.

Here in the state of Pennsylvania, Penda has partnered with the Department of Health to promote organ and tissue donation awareness, which is why you can register at the same time you get your driver's license or state ID.

Welcome to A Su Salud - Cheers To Good Health.

I'm your host, Genesis Ortega.

We're broadcasting from inside the PPL Public Media Center in Bethlehem, Pennsylvania.

Our first guest is Beth Kern-Skraptis, an organ donation advocate from the St Luke's University Health Network.

Thank you, Beth, for joining us today.

- Thank you so much for having me and allowing us to address this pertinent issue.

- Beth, let's jump right in.

Can you talk to us about what is organ donation?

I understand there are a few different types.

Can you walk us through that?

- Sure, there are two types of organs, our processes.

The first one is an organ donation, which is what a lot of people think of when they think about donation.

And that happens at the time that a patient, unfortunately, is on that road to expiring or dying and there's no hope for recovery.

And then there's also tissue donation.

Tissue donation occurs within that same process.

But the patient can actually have expired at that point in time and they're able to salvage some of the tissues that the patient no longer needs.

And then with that donation process, there is that donation after death.

But there's also living donation that can occur for certain types of organs and in certain cases.

- Can you donate any organ on your body or are there certain organs that you can and can't donate?

- There are actually eight different organs that we are in the process at this point in time of using.

Those are heart, kidney, pancreas, lungs, your liver and intestines.

- So let's talk about a living donor, you know, that's an interesting subject.

I mean, I'm wondering, are there any side effects for a living donor to donate any of their organs?

- There are not any side effects associated with it, and there's a very large screening process that goes into it.

So to be a living organ donor, the person has to be physically fit, not have any problems with hypertension or high blood pressure.

They need to have no diabetes or sugar problems.

And they can't have any underlying heart conditions.

Because of that vigorous screening process, there's usually not a side effect on that flip side of surgery after donation.

- Besides organs, are there any other parts of the body that can be donated to a needy recipient?

I mean, I'm thinking blood, but is there anything else?

- So blood is, of course, something that most of us can donate.

But within the donation process, things such as bones and ligaments, some veins and some nerves.

Heart valves, skin and corneas are frequently the tissues that are donated.

- Now, when it comes to a recipient receiving a new organ, are there any side effects when you're receiving that new organ in your body?

- So when you sort of weigh against the disease process that that person who is waiting for donation is experiencing and the side effects are that the issues they're having with their health, when you weigh that against the side effects of transplantation, there's not a lot.

The side effects that are typically seen are more related to the medications that the patient takes, the immunosuppressants, to make sure that that organ is...

It doesn't reject and the patient continues to do well rather than any type of major side effect.

- So let's talk about process here.

If I wanted to become a living organ donor, what do I have to do?

- So there's a couple of ways to do it.

If you're aligned to someone who's actually waiting for an organ, it's reaching out to your transplant coordinator at that time and giving them the idea that, yes, you would be interested to participate in this.

If you are just someone who, out of the goodness of your heart, feels that you might be a match for someone out there that you don't know, the process is to reach out to your local transplant center and talk to them about your desire and go through the screening process.

They would then do a match if you were able and eligible.

- What about after death?

How can one ensure that their final wishes include donating their organs?

- Well, as you mentioned at the start, we have within the state of Pennsylvania, the very lucky ability that each time you go for your driver's license, they will ask if you would like to be a donor, and you can make sure that it's put on your driver's license.

But the really biggest way to do it is to have that discussion with your family, let them know what your wishes are.

And at that point in time, you can always go online to the Gift of Life Donor Program website, and that will direct you on how you can make those additional wishes and get a donor card.

- Now, Beth, as I understand it, you also have a personal experience with organ donation with your son.

Would you mind sharing with us?

- I would be happy to.

My son - who is no longer a young person anymore, he's now 27, I don't know where the time went - was actually born with renal problems.

We were told at the time of his birth that he would probably need to be on dialysis and be transplanted before he hit the age of one.

He actually was ten when he was listed on the list for a kidney and he received the gift a year later.

That was 16 years ago.

So we have actually been through the process.

And I'm just in awe that someone chose to give the gift of life that they gave at the time that they were losing someone that they desperately loved.

- You know, I know sometimes it's better to look forward and look about the positive experiences.

But I do want to ask you, I mean, what would have happened if he did not receive that transplant?

What could have been the possible side effects to that?

- So... At the time that he was listed on the transplant list, I had noticed, as his mom and as a nurse, that he was getting more and more tired and had less and less energy to get through each day.

He pretty much was able to get through school and came home.

We did a little bit of homework and then he was in bed.

If he had not received the gift when he did, we would have been looking at at least three times a week dialysis and additional medications and care needs to support his body that his kidneys weren't able to do.

So dramatically...

Dramatic changes in his lifestyle would have ensued at that point in time.

- Well, I'm glad he received the transplant.

You know, I want to ask you, Beth, as an organ donation advocate, what are some of the things that you tell people who might be on the fence as to whether or not they should donate organs?

It's really the altruistic, or ultimate gift that can be given.

There is no religion that opposes organ donation.

They really do consider it the highest compassion and generosity.

There's no cost to that donor family that's giving it.

And the rewards that are out there are so positive.

We have been so blessed and have actually met his donor family.

So we've had that opportunity to ask them why.

And they just felt that it was the right thing to do.

They were actually living a dual life and that they had a family member who was waiting for a heart transplant at the same time.

And so they understood the challenges that were happening for both sides of the family, or both sets of families.

So to be able to change someone's life like that is something that's undescribable.

So it really is that ultimate gift of giving, that it's not that we're not going to save someone's life because all of a sudden they're an organ donor.

That's not the process.

It's that ability to, in your final time here on Earth, to give back to something that is never able to be fully understood.

- Now, we're running out of time here, Beth, but I do want to touch upon this final point.

The past several months, we have this added complication.

We're living in a pandemic and we're learning to live with Covid-19.

How has that affected organ donation, if at all?

- So we have worked very closely with our transplant groups, our Gift of Life program here in Pennsylvania.

We have seen that, as we've had some additional mortalities, unfortunately, that we just have to do a little bit more screening sometimes.

Covid has sort of put it in a little bit of a kibosh, but it has not stopped donation.

We have had a couple of donors throughout the past couple of months, as we have dealt with our...with the Covid.

And then from a transplant recipient side, we do know that transplant recipients are immunosuppressed.

They are not really at a higher risk of Covid other than the fact that they have underlying disease processes.

So you still want to encourage everybody to mask, to do your social distancing and to go out and get that Covid vaccine as soon as possible.

- Wonderful.

Thank you so much, Beth, for being with us today and sharing your story.

- Thank you so much for having me.

- In the United States, a blood cancer diagnosis occurs every three minutes.

In most cases, the only hope for a cure for these patients is a bone marrow transplant.

Our next guest is a young woman whose personal story with this motivates her activism behind the scenes to bring attention to the Be the Match Registry, which seeks more diverse donors.

Please welcome Sabrina Olivo.

Sabrina, thanks for being with us.

- Hi.

Thank you for having me.

- Let's start here.

What's bone marrow, bone marrow disease?

And would you say that's more simply put leukemia, or is it more than that?

- So more the bone marrow is responsible for your blood cells.

So red cells, white cells, platelets.

So there are a lot of different disorders and cancers and diseases that come with that.

So, for example, I have...

I was diagnosed with aplastic anemia in 2016, and that essentially is bone marrow failure, which means my bone marrow stopped functioning.

So I wasn't making any blood that I needed to function normally.

The side effects are like bleeding a lot, bruising, like black bruises that just don't go away for weeks.

And then it's also very life-threatening because since you don't have enough white cells to support your immune system, any infection can be life-threatening and things like that.

But again, with the bone marrow, a lot of different things come with that.

So leukemia, sickle cell anemia, any anything else that has to do with, you know, those essential blood cells that you need to survive, basically.

- So what's this?

What is the Be The Match Registry?

- So the Be The Match Registry is one of the world's largest, most diverse registries in the world.

It has many...

It gives a lot of people a chance to have a cure.

For example, cure for leukemia, a cure for my disorder, aplastic anemia, a cure for sickle cell anemia.

So it's... Why would you not want to be a part of this registry when essentially you can cure cancer or someone else's life-threatening disease?

For example, with my disorder, aplastic anemia, without treatment, it's very unlikely that I would be here today.

So I was diagnosed in 2016, but I have lived four years with it.

And then in this year, in 2020, I received my bone marrow transplant, which was my saving grace.

It was my cure to this disorder and it helped me to be here, be here today.

So Be The Match, you know, because the way bone marrow works, bone marrow donation, first they search in your family, so your siblings.

But if you don't have siblings, then you have to go to the bone marrow registry, which is where Be The Match comes in, because that's when you need an unrelated donor to help you get this treatment.

And if you don't get a donor in the registry, then they turn to your parents, which was my case.

I did not find a bone marrow donor within the Be The Match registry because of my ethnic background.

My family is from the Dominican Republic.

My parents are both Latino.

And because of that, my chances for finding a donor in the registry were significantly lower.

I had about a 46% chance of finding a donor.

And I did not.

- So let's circle back on that, because I want to talk about your personal story with your bone marrow transplant.

You were diagnosed four years ago and you're just telling me you couldn't find a donor initially on the Be The Match registry.

So what was treatment like initially?

- So my treatment because of my atheistic anemia, i t's very rare.

Only about one in a million people a year in the United States get diagnosed with aplastic anemia.

So the research is also limited.

Treatments are limited.

So my first treatment was immunosuppressive therapy, which is like...it's sort of like chemo, but it's not.

But it's just that you get like a really intense drug infusion for like a course of four days.

And then for the rest of the time, you're on pills that will help your, like, stimulate your bone marrow.

But that's really only a short-term solution.

It's not very long-term.

For example, I was on that treatment for three years and then it stopped working.

So then that's why I had to turn to bone marrow transplant.

- So how would have things been different for you had you found a match initially?

- I would have had my transplant probably the same year I was diagnosed.

Because I've met so many people online that, you know, reach out to me and say, "Oh, I have a similar story to you, "but I found my match "like a month after my diagnosis," because that's the first thing that your doctors will look for when you are diagnosed.

With any bone marrow disorder, disease or cancer, the first thing they will do is check the registry first.

First, they'll check your siblings, then check the registry.

And if you have a full match, there's no doubt in their minds that that is what's going to help you and that's what's going to cure your disease.

So for me, if I would have had a match, I would have had, you know...

I would have... Who knows where I would be right now?

But I would have had treatment way sooner, a lot sooner.

- So there's a lack of diversity clearly within the registry.

I mean, what are the chances - you're Dominican - but what are the chances for someone, for example, who's a black indigenous person of color for finding a match on the registry?

- Yes, so the more ethnically diverse you are, the less your chances are, so for someone who is African-American, it'll be probably around 23%.

And then if you're multiracial, and that's not to say like black and white mixed, that's just multiracial in general, it'll be even less than 19%.

And also with that, like a white person, just to put it into perspective, someone who is Caucasian or white European is above 70%.

- Wow.

So a stark difference there between ethnicities.

So what are you doing to get the word out regarding the need for more diverse donors?

- If you go to bethematch.org website, you can...

There's a tab for advocation volunteering.

And with that, you can fill out a questionnaire and, like, say what you want to do.

Do you want to host a drive?

Because you can help by hosting a drive in your area or in your community or in your company, for example, at your workplace.

So that's one way.

Another way is just share on social media, talk about it with friends and family, talk about it with strangers, just talk... Just talk about it because it's not talked about enough.

And then as well as, you know, there's other ways you can help the registry.

For example, if you can't be a donor, you can donate money like monetary donations, which helps them fund research and it helps them cover costs for the people who are donating or for a patients that are receiving bone marrow transplant through the registry.

- So there are a lot of ways to get involved.

I understand that you have a registration kit to share with us.

So let's talk about that.

- I do.

So this will just to show you how easy it is...

Sorry.

..to register.

So you basically go online and you can use my code, my referral code, which is join.bethematch.org/sabrinasaves .

And you will get one of these pamphlets in the mail.

You just do a quick questionnaire and you fill this out, and then inside you receive a swab kit which comes with two little Q-Tips, essentially, and you just swab the inside of your cheeks and you put that back inside and then mail it back.

They send you a mailer that you can send it back to.

So it's very simple.

It's not invasive.

You don't have to get any needles, like, nothing like that.

You don't have to get blood work done.

It's very simple.

You can do it at home and it's free.

So there's no cost to you to join.

And if you do get to get chosen to be a donor, the Be The Match Registry will actually cover your costs.

So any medical costs outside of your insurance that you need are covered.

That's why these other ways to help, such as monetary donations, is also very useful because it allows the donation to be very accessible.

- Great.

Well, thank you so much, Sabrina, for sharing your story with us.

You are a great example that donating can actually and does save lives.

So I appreciate you being with us today.

- Thank you for having me.

I'm glad that I got to speak on this topic because it is very important and it's not talked about enough, you know, it's not as mainstream as blood donation.

So, yeah, but I will say lastly that if you can donate blood, you definitely should, because people who need bone marrow transplant will most likely need blood transfusions regularly, because if your bone marrow is not working, you're not getting those cells, which means that you need blood, and that's when blood donation really counts.

- Great note to end things on.

Thanks, Sabrina.

- Thank you.

- We've been talking about life-saving transplants and now we're going to discuss life-changing transplants.

Our next guest is a chief operating officer for the world's leading non-profit eye bank and community health organization Sightlife, Jim McCorkle.

Thanks for joining us today.

- Yeah, thank you, Genesis.

Happy to be here.

- Let's start with you, Jim.

You know, you had a personal and life-changing journey.

Tell us about that.

- Yeah, it's an interesting short story I shared when I was interviewing for my position at Sightlife.

I've been there about three years, but I'd spent about 30 years prior to that in a corporate big company sort of environment.

And when I was interviewing, I was able to share the story about a donation scenario that personally touched my life and that of my family.

32-year-old niece that had a brain aneurysm, ended up being end-of-life and completely out of surprise.

You know, at that age, just not expecting something like that.

And the family, many gathered in the waiting room, just dark and depressing sort of situation.

And the moment where they started to talk to the family about donation, everything in the room changed because it brought this hope.

It brought this...it brought something into an otherwise very just meaningless situation.

And it actually brought meaning to that.

It brought some focus for the family.

It brought some hope.

And there were just something about that moment where things went from complete darkness and complete meaningless, hopelessness, into something very hopeful that others could be positively impacted through her gift.

And so there's just something about that that planted something deep into me about how I feel about donation and the impact that donation could have, not just for the recipients, but in my personal experience, a very deep and meaningful impact for the donor families themselves.

- It's great that you say that, because I think hope is the one word that I think this episode just banks off of when you're talking about donation.

But let's start at the beginning for our viewers.

What's an eye bank?

What's a cornea?

What is it all that you do?

- Yeah, so I have learned so much about corneas in the past three years, and I always love to share this with others.

I mean, the eye has many components, but the cornea is the piece that we focus on and are most concerned about.

And the cornea is more or less the covering of the eye.

I think of it...

In layman's terms, I like to describe it as sort of the windshield.

And when you're not able to see through the windshield, then you're not able to see, or you're not able to see clearly.

And that can occur for a number of reasons.

In many cases, it's a result.

It can be compromised by an injury.

A scratch of the cornea that then ultimately becomes infected.

And then ultimately you...

The cornea becomes opaque and you're not able to see through it.

But in many cases, it can also be the result of a congenital, infectious, inflammatory diseases.

And so here in the US, those are really more of the primary causes because we have very good sort of protective processes and eye wear and so forth.

Whereas outside of the US, we have a much higher percentage of the individuals we work with who have their corneal blindness caused as a result of eye injury.

And so if you think about that cornea being very similar...

I think it's about the width of a credit card and maybe about the diameter of a nickel.

So it's a very small piece of tissue.

But the clarity or the clearness of that cornea is what will...allows you to be able to see, or in the case of an injury or illness, it's the thing that prevents you from seeing.

And so through a simple transplant, which is what an eye bank does, is work on work with donor families to ultimately secure authorization for donation, then to actually recover the tissue and then go through a very extensive process of evaluating the tissue, as well as evaluating the donor - medical records, checking for infectious diseases, things that would make the tissue ultimately not useable, safely useable for transplant.

So all of those processes ultimately will determine if we now have a tissue that can be transplanted.

And transplant, which is essentially removing the existing cornea and replacing it with a donor cornea is the thing that will allow a very high percentage of donor cornea recipients to see again.

- When talking about donations, Jim, I mean, who can donate?

What's that process like?

- Yeah, that's a surprising thing to a lot of people because it's not very discriminating, like pretty much any age, race...

In fact, many health conditions.

Many cancer patients, people that die from cancer or die with cancer, can still be cornea donors.

Like it's...

Compared to a lot of other organs and tissues, the criteria for who can be a cornea donor is a lot more open.

And therefore just about anybody can be a donor.

And then the really great part about that is it's not discriminating on the recipient side either, because just about... Once we have a quality cornea that's met all of the standards for transplant, than just about any recipient can receive just about any cornea.

You don't have to go through blood typing like you do with most other transplants.

And again, age or race, none of that really matters in terms of who donated and who ultimately receives.

- And it's important work that you do.

I mean, I'll say that this has been an organization, Sightlife, that has touched my life, at least, personally.

One of my best friend's father donated his cornea, and when she subsequently passed away a few months ago, her cornea was also donated to someone overseas.

So, you know, just leading off of that, can you just speak to the significance of the work that you do through Sightlife?

- Yeah.

Yeah.

So, it...

I'll answer that in two different ways.

We have eye banking in the US.

And this, again, is little known, but 50,000 people a year receive a cornea transplant.

No, that isn't all work through us.

There are a number of eye banks across the US.

But as you said earlier, Sightlife is the world's largest leading eye bank because we do not only a lot of work in the US, but we also do work internationally.

And so on an annual basis, we are impacting about 100,000 people.

And that can include the individuals, the donor families that we work with, because they are an important part of the process to support donation and to help us make donation happen.

The donors themselves, of course.

That's recipients, that's people that we partner with to help with tissue donation, because it's not only eye donation that we support, but we also partner with other organizations in the tissue donation process.

But it's also some of our international programs in terms of how we do prevention programs and clinical training and so forth.

So we're interacting with about 100,000 people a year, all in the service of this really important area of donation.

- I appreciate the work that you're doing, Jim.

Sadly, we've run out of time today.

But for those who are interested watching, where can they find out more information about Sightlife?

- We've got a lot of information on our website www.sightlife.org.

And then in... And you would find many things there that will take you to even additional resources.

In the broader context, donation matters so much.

And so we'd send you to register if you haven't registered.

And that's a super simple process as well.

And that's registerme.org.

And there's a lot of information available there as well.

- Thank you, Jim, for joining us today.

I appreciate your time.

- Yeah, thank you for the opportunity.

- I want to thank our St Luke's University Health Network medical expert Beth Kern-Skraptis and our other guests, Sabrina Olivo and Jim McCorkle, for being with us today.

I'd like to take another opportunity to honor my best friend.

She passed away in September after a battle with cholangiocarcinoma, a cancer in the bile duct.

Organ donation was near and dear to her.

And so it's my honor to dedicate this episode to her.

Thank you for tuning in.

We look forward to seeing you again soon.

If there's a medical subject you'd like for us to cover, send me a message on social media.

You can find me on Facebook and Instagram.

Plus, you can tune in to hear more of my reporting on 91.3 FM, WLVR News, your local NPR news source.

I'm Genesis Ortega and from all of us here at Lehigh Valley Public Media, stay safe, be healthy and cheers to your health.