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- Many of us in Wyoming have checked that box on our driver's license to become an organ donor.

But what does that really mean?

But maybe more importantly, what conversation should we have with our loved ones about that decision right now?

The life saving decision of organ and tissue donation next on Wyoming Chronicle.

Funding for this program is made possible in part by the Wyoming Humanities Council, helping Wyoming take a closer look at life through the humanities.

Thinkwy.org.

And by the members of the Wyoming PBS Foundation.

Thank you for your support.

And as we begin this important Wyoming Chronicle on organ donation in Wyoming, it's my pleasure to be joined by Ryea O'Neill.

She is the Donor Alliance Wyoming community relations coordinator And we're also pleased to be joined by Anne Bina.

She is an advocate for life with the Donor Alliance.

To both of you.

Welcome to Wyoming Chronicle.

- Thank you very much for having me.

We have a lot to discuss and to cover about organ donation in Wyoming.

I think for a lot of us, and as I said in my open to the show, it's just a matter of, well, yeah, Ill be an organ donor, I'll check that little box on my driver's license application and we'll move, move on with that.

But there's so much involved in not only things that people need to think about if they are an organ donor, if they want to be an organ donor, but discussions that they need to have with their family.

So let me visit with you first, Ryea.

What what are the statistics in Wyoming?

How many people are right now waiting for an organ donor?

-So we have nearly 150 Wyomingites.

So across the state, from border to border, our neighbors, our community members, 150 that are waiting for a solid organ transplant.

But we have hundreds more that are waiting for tissue transplants or may have corneal blindness and need a cornea transplant.

And so when people decide that they want to be an organ donor or if they haven't made that decision, what do you suggest that they think about?

What does that?

What should enter their minds if they maybe want to become an organ donor?

What should they think about?

-Well, we always encourage people to learn about donation to learn the facts about donation, like you mentioned earlier.

We all go get our Wyoming ID or our driver's license.

And so all of us share that bond.

We all get asked that question.

Do we want to be an organ, eye, and tissue donor?

And so we should learn about it, right?

We should know what it means, learn the facts and so they can always go to donatelifewyoming.org and they can learn those facts.

But Donor Alliance also does events in the community.

We do outreach with organizations to try to help educate the public on what that means.

We would love to have people walk into that situation at driver services, knowing about donation and then knowing what they're going to say yes or no before they get there, right?

We don't want them to have that conversation right there.

and while theyre getting their driver's license, that's not the place.

They should do it at home with their family.

And so we encourage them to just learn the facts.

- We're going to talk really a lot more deeply about what it means to be an organ donor in just a minute.

But Anne, this is this is your 22nd anniversary of being a kidney recipient.

- Correct.

- Tell me about your story.

- OK, my story is a little bit different than a lot of people's.

I didn't.

I'm not diabetic.

I didn't have high blood pressure, no cancer.

I was nine years old.

And what you would think was a simple strep throat caused all this.

About two or three months later, I wound up in the hospital with what they called nephritis, which is like an inflammation in my kidneys.

And the doctors told my parents that it could reoccur later in life.

And I think my parents worried a little bit about it when I was in high school, very active in sports.

And then I went on to college, met my husband at the University of Wisconsin.

We got married.

He was in ROTC and away we went around the country for 25 years with his military career.

We were stationed in Missouri at the time and I used to get really bad migraine headaches, so I went to see the doctor.

And you know what they do.

They do your temperature, your blood pressure and your pulse.

And my blood pressure was very high.

So I was in a hurry to go to work.

And so they had me come back the next day.

And the next day it was, of course, just as high.

So they started doing more testing and they discovered that my kidney function was at 50%.

It was kind of ironic because I was just winding up at University of Missouri, getting my master's degree, and I was going to have a career in gerontology.

And so this kind of really set me back.

Just like here, you would probably go to University of Colorado Hospital to have more testing done.

I went to University of Missouri and they did a renal arteriogram, because if there's a blockage, they can surgically correct it.

But that wasn't the case.

So they did a biopsy of my healthier looking, of my two kidneys, and they discovered I had what they call FSGS focal segmental glomerular sclerosis.

It's a mouthful.

Basically meant my kidneys were getting all scarred up inside.

- They were, and to really simplify it, they were dying.

Is that right?

- Correct.

Correct.

So anyway, they told me that it was going to be a slow, progressive disease, that I was going to need dialysis and a transplant to live.

- How old were you at the time?

- I was I think I just turned 40.

- And so did you become where you placed on the list then?

- No, no.

- or did you have to get sicker?

- I had to get sicker.

- Isn't that odd?

- It is odd because they know that's going to be the end result, but they want to wait for the end result.

So anyway, we moved around, some more wound up in California, and that's when my husband in 98 retired from the Air Force and because of he knew I was going to be put on the transplant list soon we moved back to Wisconsin.

And he was able to get a job.

And about two months after moving back to Wisconsin, I had an appointment.

University of Wisconsin Hospital's transplant center and they put me on the transplant list.

- In other words you were getting sicker.

- I was getting much sicker.

I was wanting to sleep practically the whole day.

I was vomiting every day.

I didn't want to eat.

I was getting weaker.

- Were you worried you weren't going to get a kidney?

- Yeah.

- Were you worried you werent going to make it?

- I really was.

- Oh, my goodness.

- But I think I think you put that at the back of your mind because I tend to be a very positive kind of person.

I had both of my daughters were tested for, to be a donor, - A live kidney donor.

- A live kidney donor.

But they were both still in college, not married.

And I would have if it was desperation, you know, the last resort, I probably would have taken one of their kidneys, but.

And it was a three out of a six match.

You get the when they test kidneys, they test tissue and you have three antigens or markers you get from your mother and three from your father.

And they both, of course, were a three match.

- Anne I'm going to interrupt you for just a minute.

We're going to come back to your story, but I have a quick question.

Does it matter what state you're in as to whether you might have a better access to a transplant?

That's a question that's on my mind.

Do either of you know the answer to that question?

- Well, you want to be you're going to want to be near your transplant.

What we see in a lot of the recipients that we talked to is depending on their situation Of course, every situation is unique and different.

You're going to go where the care is.

- What if I live in Worland, and Im as sick as Anne was?

- Yeah, in Wyoming unfortunately, we don't have a transplant center.

We just don't have the population to support it.

And so most of Wyomingites we go across our borders for our health care.

special services and transplant is a special service.

Most Wyomingites would go to one of the transplant centers that we work very closely with.

There's four in the area of Denver Metro.

Some will go to Utah to the University of U transplant centers and some depending on, like I said, what their situation is because each one is different.

They may, if they have a special situation, get sent to a special center down south in Texas or somewhere else in the nation and that does require families to move.

A lot of our families will move close to their transplant center while they're on the waitlist because organs are only viable outside the human body for so long.

And so you want to be close to your transplant center.

So when you get that call, like Anne said, that hope in the back of your mind.

When you get that call, you can make it to your center in time to get your transplant surgery.

- All right, Anne, back to your story.

So you got that call.

- I did get that call.

It was October 15th.

It's my anniversary day.

And of course, it was 2:30 in the morning.

They never call you during the daytime.

- Doesn't matter to you, though.

- No.

No.

They kept telling I always remembered the transplant coordinator coordinator telling me that it was a match.

It was a good match.

It was a kidney for me and it was a four out of a six match, which was incredible for a non relative.

- You're holding a picture.

- Yes, I'm holding a picture.

This is Ryan.

Ryan was my donor was 16 years old.

He was on his way home from school and they were he and his friends were in a car accident.

Everyone else is fine.

But Ryan died in the car accident and his parents donated all of his organs.

- Would you be alive today if they wouldn't have done that?

Do you think?

- Without a doubt in my mind, I would not be here today Things were not going real well for me.

- And you have a second picture youre holding.

- I do.

This for me, was the most fantastic thing I think I have ever done in my life.

I met my donor family.

You know, you want to do it.

I wanted to to tell them, Well, how do you tell them, thank you for saving my life?

But this is something I always wanted to do, and it just never worked out.

When we were still living in Wisconsin and this last summer, we had to go back to Wisconsin for a family, a family luncheon, and I had called her and she called me back and they wanted to meet me and she could not stop hugging me.

She said she knows the whole this whole transplant journey for me, I wanted them to know how much this kidney meant to me.

So every time we took a trip, we traveled to Europe.

We went down to Mexico.

I would always send her a postcard because I wanted her to know I'm doing this because of Ryan's kidney.

I'm able to do this.

They were so gracious.

He is.

This is Anne and Jeff.

He has his own trucking business.

And he actually brought his semi truck home while I was there so he could meet me.

- Ryea when a family is in this situation, incredibly emotional time, awful I mean, I can't I can't imagine what they were experiencing.

Maybe they didn't think about this before.

Perhaps they did.

What happens?

What happens when they have this opportunity to call?

- Only about 1% of the deaths that occur occur in such a way that that person is a candidate for donation.

- And what does that mean?

- Meaning that for organ donation, excuse me.

Meaning that they have to die on ventilated support.

And there has to be oxygen flowing through the organs to keep them viable for transplant.

And we don't all die in that manner.

None of us know when and where we're going to go.

And so situations like this, you know, those shocking moments, tragic moments face families.

And that's why we really encourage them to have that conversation ahead of time Especially those moms, those moms that have those 16 year old sons.

No mother should have to face that situation.

- Does that make it more difficult for those of us in rural Wyoming to actually be an organ donor, because we are farther away from the great care that they tried to maybe provide a young man like him to save his life that allowed him to then be an organ donor?

Does that make it more difficult for Wyomingites to do something like this?

- Well, we do have many of our amazing rural staff in rural hospitals that take care of patients.

By the time someone is at a point where they are a candidate, most of the time, unless they're at one of our major hospitals, for example, like Wyoming Medical Center and or Cheyenne Regional, they've already been sent to a hospital that can support them medically through that, you know, situation, whatever happened that is threatening their life.

And so, for example, like someone in Rock Springs most likely would already be at one of the larger centers.

- They'd be transported to Salt Lake or something.

- Right.

And those centers can support that.

And, you know, unfortunate as it is, we are used to this in Wyoming and going across the state, especially on the borders for for care at a higher level, trauma level.

- He was very young when he gave Anne that incredible gift.

Someone like me too old to be an organ donor?

- Don't rule yourself out.

That's what we always tell people.

We have in May of this year, there was a 72 year old gentleman who was able to be a living donor of a kidney, and he set, he broke the record for the age of a donor.

And so science is always making advancements, especially in the field of transplant.

You mean that's that's what we do.

We're trying to save lives, more lives through organ eye, and tissue donation.

And so I just encourage people, don't rule yourself out I know I'm not an expert.

I'm not a doctor.

I couldn't tell you when I'm going to go and what my health is going to be when I go.

And so I just encourage people we never know.

We don't know when our time is up.

If you believe in it, say yes and let the medical professionals decide at the time of your passing.

- Give me a plan on how I should have a conversation with my family.

Should I just come out and say, Hey, look.

I am an organ donor, and I want you to support that.

Is it that simple to start the conversation?

- It is.

If you're comfortable in that, you know, being that u front in that forward about it.

We actually have some resources on donatelifewyoming.org for families.

A great way is just at dinner, you're talking to your family, rip out your ID.

Show them the heart on your license and say, Hey guys, do you know what this means?

I have a heart on my license.

Do you know what that stands for and what that means?

And that's a great way to start the conversation.

I actually just had a conversation with my son.

He's 15, so we're doing the driving thing, teaching him how to drive, and I took him to a park and let him drive there.

And we sat and I showed him my license and we had a conversation, an open conversation, and we talked about it.

It's not always, it can be difficult because it does involve talking about the potential of death, and we don't like to talk about death, but I really encourage people.

It is so important to share your decision with your loved ones.

- So death happens clinically.

Tell me what the next step is for families, what they should maybe prepare for.

Because there is a next step when it comes to organ donation What happens next?

There's a financial consideration, but it's not really a financial consideration for the family.

What happens next?

- So if someone is pronounced dead and that they are at the same time a candidate, excuse me, for donation at that time, once death has been declared, that's when what we say Donor Alliance takes over that that case, that individual.

We start communicating with the family.

And really, in that moment, we do a lot of education with the family members telling them what the process looks like, what is going to happen, telling them, you know what it what it truly means organ, eye, and tissue donation, what can be donated, how we're going to communicate with them and and really hold their hand and be there as a support system for them through the entire process.

So once we are working that individual's case with their family and the donation is progressing and moving forward, we would then recover organs, eyes, or tissue, whatever is determined to be viable and what we can recover.

And then once the recovery is done of the donated organs eye, or tissue, we then return that deceased donor to the funeral home of the family's choice.

- And that recovery may not be in the same town or city where the person passed.

Yet the family can be part of that entire process.

Is that true?

- Yes.

Yes.

For Donor alliance in our service area, we actually have a an amazing recovery center, and it's located down in Denver by our office in Denver.

And we really have it set up to do just what you said to really comfort that family and guide the family through that process.

If they want to, they don't have to.

But if they want to come with their loved one, we really are there for them as a support and help them understand the process.

So the deceased donor would be transported to our recovery center in Denver.

And then the family, like I said, they can join, and and it really is.

I've heard stories from another advocate, for example, that because of weather, she couldn't make it down there with her husband, who had passed and become a donor.

And so the whole family here wrote letters, letters about their loved ones and our staff read it before the recovery.

- Are there religious concerns that you encounter folks that have concerns about how religion may impact someone's choice to become an organ donor?

And maybe in the case where the organ donor is of a different religion than the next of kin?

Are there issues like that that people need to consider and think about?

- There are questions about religious beliefs, and some people think their religion does not allow them to donate.

And we call that in the in our Donate Life community.

We call it a myth because all the major religions in the United States either support donation as a final act of love and generosity, or they leave it up to the individual to make the decision and they're OK with it either way.

And so what we do with our education is we try to educate the public on that.

We do outreach to churches around the state to try to educate the faith leaders that they are higher up in their, a national organization has indeed said that they will leave it up to the individual and or they openly welcome and support organ donation and encourage it among their followers of that faith.

And so we really just need it's about getting the word out there because like you mentioned earlier, Craig, no one wants to talk about dying.

And so these things about donation, these facts of donation are centered around a conversation about death.

And we, as humans, we don't want to talk about it.

And so we we encourage people.

We give them tips on how to do it.

And one of those conversations is with their faith leaders in that religions do support donation.

- It's a deep topic when you think about it, and it's a topic that has crossed all of our minds, and I think many of us haven't given enough thought to it.

- It's so emotional too.

- It is.

Congratulations on your 22nd anniversary.

- Thank you so much.

- Here's to 22 more.

- Yes.

- Yes.

Well, Anne Bina, thank you for joining us on Wyoming Chronicle.

- Thank you.

- And Ryea ONeill congratulations on your work as well.

- Thanks for having me.

- We're going to move on to another segment.

We're going to visit with Gary Loghry.

He's a regional donation consultant, so please stay with us.

And as we continue this important discussion on organ donation in Wyoming, it's my pleasure to be joined by Gary Loghry.

Gary is the regional donation consultant with Donor Alliance.

Gary, thank you very much for joining us.

- Thanks for having me.

- Your main responsibility is to provide education.

Is that accurate?

- Yes, I think it is.

- Tell me what you do.

- So my role at Donor Alliance, its kind of twofold.

I do the professional education with all of our hospitals and our donation service area in Wyoming.

But on the other side, as a family support coordinator I help educate families about what their loved ones decision to be a donor means, about assessing their understanding of what the care they've received or their loved ones received in a hospital.

So when basically, when hope is lost for saving one's life and the progression moves towards donation, I help families facilitate that donation.

- Tell me what the biggest misunderstanding is that you encounter from families when you have that unbelievably, believably difficult conversation.

What do you encounter?

- Timing?

Maybe duration.

You know, organ donation doesn't happen instantly, especially up here in Wyoming.

Since we don't have a transplant program here, the primary transplant programs we work with are in Colorado.

Sometimes they may be from a different state.

But once they've decided and jope that their loved one becomes a donor it may actually take some time for that to actually come to fruition, if you will.

- And what do you mean by time?

- We are three or four hours from Denver.

Via plane, hour and a half, two hours.

Once we've received a referral from our hospitals, it takes some time.

It just doesn't happen in that same day.

All efforts up to that point have been to save the life of that individual.

Once we've become involved and have a chance to talk with the family and the familys, make that decision or wish to honor the decision of their loved one and we accept that patient as a donor, it does take some time to get the machinery in works to get that ball rolling.

We don't have any organ recovery coordinators in Wyoming.

I may be able to help with the hospital staff in doing some initial modalities.

You know, if that patient needed blood or just starting our care.

Up to that point, it's been saving life.

But once that is no longer a possibility, it turns into how can we best fulfill the wishes and maximize this gift of donation?

So we're looking at all the different organ systems to see what that patient, that donor can actually donate.

- Is it a challenge for some rural medical providers, or is it maybe a lack of education to not understand what needs to happen next?

Do you fulfill that role, then to help them?

- We do, and it's every single time is a, it's continued education.

It's intense education because it may have been some time since they've had their last case.

In some circumstances, they may not have had an organ donation.

So our organ recovery coordinators, myself, we're educating along the way.

- If someone's not certain they're an organ donor, it really is as simple as take a look at your driver's license, isn't it?

- It really is.

It's so easy to join the registry.

As Ryea mentioned earlier, we really need to educate ourselves on what that decision means because it is a decision that is life saving, life enhancing.

It's it's just incredible.

My dad was a skin donor when he passed and he had been a blood donor throughout his life.

He had far surpassed his ten gallon pin.

Very proud of that.

- If people look at their driver's license and don't see that heart, they can make that decision and change that today.

- Certainly go online and make that decision.

You don't have to do it at the driver's license office, but that's where most people do that.

But they can go online to donatelifewyoming.org and join the registry there.

Likewise, you can take yourself off, but we don't always check the driver's license at that time.

We always check the donor registry to see if they're on that because we can take ourselves off.

So we always go by the latest decision that we made.

- You talked about how it how it is really an incredible gift.

Is it a challenge in the heat of the moment when people don't want to listen to you?

I mean, have you have you have you found that to be troublesome at sometimes?

- When we are in that emotional state Research has shown that we're only hearing one or two words out of every ten.

So to the timing of that conversation is important.

- How does that happen?

How when, when do you come into the picture?

What should people maybe plan for to hear from someone like you?

- We rely heavily upon our critical care hospital staff.

We have parameters set so they know when to call us to see if their patient meets the criteria or is eligible to donate.

In some circumstances, they may not even be a candidate.

We ask that we are brought in as part of the end of life care team.

My role.

That we can do a collaborative approach from the timing is right.

This family, this family may have built up trust and rapport with their physicians and the nurses, but they also trust the physician and the nurses to save their loved one's life.

So there needs to be a gentle separation between saving life and then moving into the donation conversation.

We ask that our hospitals allow us to be part of that conversation when the timing is right.

We don't need to be involved when they're being informed that their loved one has died, or that the prognosis is grim.

- Right.

But I think if if there's any message that we wanted to have given out today, it's that let's have these conversations much sooner.

In fact, now.

- Definitely.

In private, in our own homes, that's when to have that conversation.

- With families and with friends Well, congratulations on your work and thank and and thank you for your work.

- Thank you for having me.

- Thank you for joining us on Wyoming Chronicle as well.

- Absolutely.

Thanks.

Funding for this program is made possible in part by the Wyoming Humanities Council, helping Wyoming take a closer look at life through the humanities.

Thinkwy.org.

And by the members of the Wyoming PBS Foundation.

Thank you for your support.