- Will you consider this?

If you were getting winded, short of breath or your heart seemed to be palpitating or causing you some concern, what kind of help would you seek?

Probably someone with years of experience.

(upbeat music) So you're ticker, thump, thump, thump is comforting to feel, it seems to be going along, doing everything right for the untrained person, but believe it or not, heart problems can surprise you at any age.

I'm Christine Zak Edmonds.

And joining me is Dr. Barry Clemson, a cardiologist specializing in heart failure and transplantation who has come through the OSF Francis at St. Francis rather heart transplant program in both its initial run and now in its present incarnation.

So you've been at this a long time, Dr. Barry Clemson.

Welcome.

- Thank you.

Thanks, it's great to be here.

- You came the heart transplant program here in town started in what, 1987 something like that?

- Yes, yes 1987.

- And the first transplant was performed... - In April of 1987.

And that patient is still alive and doing well.

- Isn't that amazing with the very first heart, the only heart that she's had?

- That's correct.

The only heart.

So, but so tell me, so sometimes that's a good heart and then is there a rejection or what happens there?

- Can be sometimes rejection can be very mild.

We just treat with medication.

Other times it can be much more severe, hard to control, and unfortunately some people will die because the rejection so severe, but that's really, really uncommon nowadays, but she did great.

I don't recall her ever having any rejection.

- Really?

- So she just had a really good match and it has gone on to serve her well for 34 years.

- That's amazing, and she might be in the Guinness Book, you have a few things you still have to figure it out.

- Yeah.

We've tried to search worldwide different databases.

And as far as we can tell, she's the longest survivor on a single heart.

So 34 years, I think she's the oldest too because she's 90 now.

- Right, wow!

- So we just have to make sure that that's all indeed correct.

And then if so, then we need to figure out how do we help her and her family go forward with that type of process to get into the Guinness Book.

- That's incredible.

Well, that just shows how wonderful the program is at OSF.

Now you came here from Pennsylvania, little guy from Pennsylvania, Philadelphia.

You grew up in Pennsylvania.

- That's right, that's right.

- And went to school there.

- Yes I did.

- All of your schooling?

- Everything was done in Pennsylvania.

- All right.

- Yes.

- And then you were in Hershey, Pennsylvania.

- Correct.

- As a heart failure specialist?

- Yes, I started in Hershey as I graduated in Med school in 1983 and I did all of my postgraduate training there.

So internal medicine for three years, cardiology for three years.

And then I did subspecialty fellowships and interventional cardiology, which basically means working in the cath lab, doing angioplasty and stents, and also at the same time, a sub-specialty fellowship in heart failure and transplant.

And then I stayed on the faculty there for four more years and was running the transplant program.

- Is this something that you always wanted to do?

I mean heart or is there anything that you wanted to do when you grew up?

- It was an evolution.

I knew I wanted to be a physician from about age 10, so fifth grade, and that I knew it just somehow, maybe God talking to me.

- And you were listening.

- Divine intervention and I was listening, but I knew all along, I never had a different path.

I never changed my mind and it was just focused and driven to get there.

And that back then, it was not easy to get into Med school times were changing.

So it was a struggle but got accepted and did well.

And then when I graduated, I went to Hershey.

So I did those training there and then stayed on the faculty, as I said a few minutes ago.

But cardiology, wasn't always it.

When I was a little boy, I had family that lived around Pittsburgh and out in the country.

And I thought, you know what, man, it'd just be a family doctor and just go in some small little town and get out of the big city, but your ideas and things change as you're exposed to different things in medicine.

And along the way, when I was an intern, I had a mentor that was probably one of the best physicians I've ever known and worked with.

And he really kind of took the lead and guided me and said, "You know what?

I really think you should do this."

And I followed that path and here we are.

- So he recognized that that was one of your gifts.

- Correct.

- Was to focus in on the heart?

- That is correct.

What's the most difficult part of... well let me back up a little bit here.

So now in OSF, St. Francis also now has reinstated its heart transplant program.

So it was in effect from when to when, and then there was a hiatus.

- From April of 1987 with the first transplant.

And obviously it took a few years to get all that organized and get the program started.

And then we continued to do transplant until 2007.

And at that point, the program was just too small and we didn't have enough volume to really keep going.

So we had to stop.

And then OSF decided in the early 20 teens that they wanted to try revive those programs, the mechanical support program, the help the transplant program, I unfortunately had left for a while.

So I was back in Pennsylvania, again.

- Back in Hershey.

- Back in Hershey.

Where I had trained and back to the transplant program that I had run before and doing well there, close to family again.

So mum, dad, and others, and my wife as well, she was from Philadelphia.

So we were there very content.

And then I started to get phone calls to come back.

And the idea was to see if we could redo and reignite the program.

So it took five years, 'cause we didn't really get started with clinical work until December of 2019.

We put in our first left ventricular assist device then, and then the first transplant another year went by.

So the first transplant February of this year.

- So we had COVID in there as well.

- So a lot of work, a lot of me building on COVID really took a toll on us because they shut the OFS down for four months.

We couldn't put a ELVAD in a patient that needed one, until things started to open up, but despite all of those challenges, I think 15 left ventricular assist devices and two transplants in that timeframe is pretty amazing.

- Right.

How many patients do you have waiting for a heart transplant?

And then tell me what you have to do in order to analyze and make sure that this is the proper candidate for a procedure?

- The waiting list for the transplant is kind of fluid because people go on and then they get transplanted and so on and so forth.

So I think as of right now, there's probably five on the list 'cause if you just got recently added and once you're there, then the criteria for transplant is how sick are you?

And so that whole system was revamped in October of 2018.

It's become much more complicated.

There was now seven different categories instead of three.

And so the time that a patient will have to wait, depends on their severity of illness.

So what category are they in one, two or four or five, they're gonna wait longer in four or five, typically.

- And so you have to check all the boxes?

- Check all the boxes and then it's a matter of, okay, well, how long are you on the list?

So if you have two people that are equally ill and one's been on four weeks and one's been on three weeks, four weeks trying to go first, if there's a match and then obviously the organs have to match.

So you can't just take any heart and put it in someone, it has to match up in a number of ways so that they don't have rejection or minimal risk of rejection.

And so the waiting time can vary tremendously.

And it also varies by blood type because Group O for example is much, much, much more common.

So the number of people that are group O on the waiting list is much, much bigger.

So it takes more time to go through their criteria and make those matches and have them get a up for their transplant.

So there's a lots of factors that determine the time that they're gonna wait.

- But you have a committee that helps you make these decisions or who is on this committee?

- So it's our kind of selection review committee.

And there is the cardiologists didn't manage the patients with advanced heart failures, that's myself and my two younger colleagues, Dr. Bhardwaj and Dr. Sparrow and the surgeon Dr. Amaraj and then our coordinators that help us, keep track of everything , and help with monitoring the patients they're there.

And then multi discipline from multiple different areas, pharmacy, social service, palliative care, financial to make sure they have the appropriate coverage for the transplant, for insurance purposes, psychology, and as well as represented.

I think it might be one more, but the it's a pretty complex committee, and we're looking at everything from every angle to make sure that when we decide to transplant someone, we have the absolute best chance of giving them a really long-term good outcome.

- Mmh.

- And the same for the pumps as well.

We do the same process for the pumps.

The criteria are a little looser.

You can be older and get an LVAD than a transplant.

It's some other various criteria like that, but the same process is followed.

- But interestingly, people of any age can have heart problems.

- Oh, for sure.

- What's the youngest patient that you've had?

Well, you do some children, but mostly young adults.

- I would say in Peoria, we've never really done young young children, maybe teens.

- Right.

- I think the youngest two that I was ever involved with was back in Hershey in my early days.

And it was a 12 year old girl and about a 13 or 14 year old boy.

Are these congenital defects or what?

- Sometimes they are, but they tend to come later in life.

These younger ones tend to have cardiomyopathy.

So they get garden variety, heart failure, and it just gets worse and worse until the heart can't support them anymore.

And then they need a transplant.

The congenital patients are different in that, the surgeries now for repairing congenital heart disease are so amazing that these, especially the infants, they get treated.

- In numeral.

- And they can go for years after these surgeries.

Some of them don't need surgery the heart just kind of goes, and they they're compensated.

So they're doing okay, but then the heart fails later.

So that group is typically in their twenties to forties, roughly.

And we probably will do it again.

When this new program is matured a bit, but in the original program, we probably did somewhere in the range of 20 or 30 young adults that had congenital heart disease that we transplanted.

And interestingly enough, those patients have a little higher risk of the surgery because it's very complicated.

The anatomy is all different inside.

So you need a really good skilled surgeon that knows how to handle those variations in the anatomy to get a transplant and done.

So they have a little bit more risk upfront in the early post-operative time.

So first few months, but after they survive that time, they actually live longer than most transplants.

- Interesting.

- So we have at least a dozen of these young adults who are now middle-aged because they were transplanted when their twenties and thirties that are still alive and well.

- In this area.

- In this area.

- Yes.

- Now you don't actually perform the surgery.

You are, you kind of make the decisions beforehand and then postop you're right there.

- So we're the medical arm and the surgeon is the surgery corn.

So the surgeon does the surgery and puts the heart in.

And we typically have the patients prior to that and we're monitoring them and following them.

And at some point they are sick enough, they need a transplant or an LVAD.

And then we go through the selection committee that we just talked about, and then they have their surgery, whichever one it's going to be.

And then we help with the immediate postoperative care of the patient.

But then the long-term care is all done by us.

So it's all the medical arm that then continues to follow at long term.

- And you follow them long-term like forever?

- Forever.

- Okay.

- Yeah, so I see the patient, we talked about.

- Right.

- Number one from the first era.

I still see her in the office twice a year, and we just monitor all the various labs for medications or other things that may or may not be going on and so forth.

- Well with age, thanks for going on anyway.

- Absolutely.

- But that heart is still pumping.

- Like that heart is like the day we put it in.

That's amazing.

- So who's... how old was the heart that she received, you remember?

- That I don't remember, but I will say back in those days, we typically had a much lower cutoff for the donor age.

- Okay.

- Nowadays we've escalated it up because there was a huge donor shorter for a long time.

There still is, but it's not quite as bad as it was.

And so we noted a transplant patients waiting.

The necessity was we had to increase the donor age, screened them very, very carefully.

So we didn't use a heartbeat.

We shouldn't use for example, but the age for the donors had to go up.

But back then in the eighties and nineties, the donor age would have been probably not more than 40 or 45.

- Well, from time that there's a heart available in all the information that you've gathered, how, what kind of a window do you have?

Because you know that this needs to happen.

Then how long of a window is it before they get the heart to the hospital and they scrub and get ready for the surgery.

- So, traditionally the hearts, once they're ex planted from the donor, they were chilled with solution that would arrest the heart.

So it wouldn't be beating, right?

And then it was packed in cold ice and fluid and put in an igloo container just like you would take to a picnic.

- For lunch.

- And it was brought back to Peoria and depending on where they were, that was either an ambulance ride, if it was not too far away, it might be a helicopter.

It might be a jet if you're going four or 500 miles away, because the time is of the essence.

And typically we want, from the time the heart is actually ex planted to begin the transportation until they come back and their hearts in place and pumping.

We want that to be foot less than four hours.

There's a window between four and six that you might get away with.

But the risk of having complications goes up in that four to six hours window and beyond six hours for a heart, you just can't do it.

- So the heart is still pretty much frozen when the transplant is taking place?

- Not quite frozen, but definitely cold, pretty cold.

Now, interestingly, again, technology's changing things are happening.

So there is now a device that's available and it's being used in Europe, Australia, probably some other countries.

It's being used here in the United States.

And it actually will temperature control the heart, but in a setting where they don't have to pack it in ice, in an igloo container, it can actually be beating.

And so you can transport that heart.

Now, what that's gonna do is that's gonna take that time window and lengthen it quite a bit.

And so that four hour window is going to extend out.

- Right.

- And I think they're still trying to decide, what is the maximum limit of that time?

But it's definitely going to be well above four hours.

- Right, and then how do you test that?

You don't wanna waste that heart.

- It's actually been tested around the world in different studies and it's very, very promising.

And it's being used at more a lot of, probably like 25 or 26 of the biggest transplant centers in the country are actually using it today.

- Actually in my own, like in my old stuff, yeah.

- But for us to have you've had Hershey.

- Yes.

- So how was it?

I mean, I went to Hershey, Pennsylvania, one time that smell of chocolate really is overwhelming, but I guess you just get numb to that.

Right?

- You get used to it plus it's wind dependent.

So you gotta be downwind from the factory, but if you're up when you won't smell it, but it's a very pleasant smell in the air, for sure.

- Yeah, yeah.

You probably have a favorite, but we won't go into that.

So this patient who just recently had his heart transplant is 27 years old?

- He's 23.

- 23, okay.

- our new number one.

- Yeah, and he just, he said he was slowing down.

He just, he couldn't make it up a set of stairs.

And for 23 years old, that just doesn't seem real.

- So he had some type of cardiomyopathy.

We definitely had evidence that he had inflammation of his heart.

He came at the very beginning of COVID very, very sick.

So we thought he had COVID and we know that COVID can induce myocarditis.

So inflammation of the heart and the heart can fail, so we really thought he had that, but we tested him four or five times and he clearly did not have COVID, but he had some other inflammatory process, most likely a virus, although we can never identify a specific one.

And then again, he was really ill.

He was on multiple machines.

We eventually had to put in the left ventricular assist device in him.

And then he went home and he was improving and improving and improving from that time until late in the year of this year.

And so at that point, we had to bring them back in the hospital, and we needed to support him again.

And then he got his heart transplant in, that's February 25th or 27th, one of those, and he went home in 11 days, - Which is also amazing.

- Which is amazing for as ill as he was and what we had to do over this year prior to keep him going for him to get out of the hospital in 11 days was really phenomenal.

- And he's doing well.

- But he's a young man.

So they have lots of reserve and resilience.

He is, he actually ran four miles about two months after his transplant, because he was a runner when he was in high school and things.

- And missed it and so now.

- Yeah, so it was about two months out and he went for a four mile run.

- And so he reports back to you and says, it's all good.

- Yes, yep.

- All right.

Well, one of the reasons, well you left because the transplant program here had kind of, like you said, the volume wasn't good.

You went back to Hershey, replaced yourself.

- Correct.

- Then when you came back, part of the reason was your son was here with your grandson.

- That's true.

- And so that was kind of enticing.

- Yes, that was clearly part of the decision.

We knew they were going to have a child.

And that was right at the time when we were making the decisions and deciding what to do.

So we came back and then my grandson was born in August of that same year.

- All right.

- So that was definitely a pull.

- And that's Landon.

- That's correct.

And you're teaching him to golf?

- We're teaching him to golf.

- All right.

Well, so in your spare time, I mean, you're probably on call a lot, correct?

- Every third week for the entire week.

- All right.

But even if you have your spare time, you might get a call and have to go and evaluate someone or?

- That's true, yes.

- But you have younger partners that could do that too.

- I do and that's why we don't do continuous.

We each take a turn.

So every week, one of us is covering the hospital and taking care of all these things.

And the other two are taking care of office work and doing other things.

And we just keep rotating.

- Now I know that for children's heart surgeries, jump education, simulation center has been used.

And do you use that too?

- We don't, and I don't know of any centers they're doing that for the purpose of transplant, because you're gonna take the heart out.

- Mmh.

- You already know it doesn't work.

So there's not much that we would get from what they do, 'cause they do very sophisticated imaging of the chest, CT scan, potentially MRI.

And then they have computer models where they basically can create a digital model of the heart and then they can rotate it this way, that way change it in position.

And they can, that allows the surgeon, who's planning some very complicated restructuring of a--- (indistinct) Congenital heart.

That he knows before he even goes into the operating room, what he's gonna do, 'cause he knows exactly where all the connections are and what he has to change, what he has to fix because these models are so sophisticated.

- Right.

- So for them it's a game changer.

- What's the best part of your job?

Obviously the success stories, but what do you look forward to most on any given day, every third week?

- Every third week.

(chuckles) That's sort of a complicated question because that week is so busy with so many different kinds of situations and kinds of activities and types of patients that you have to care for.

And not all of them are going to be in any way, be a candidate for a transplant or an LVAD for any number of reasons.

But I still think the most exciting and most impactful thing for me is every single time there's a transplant.

So I've probably been involved in well over 400 transplants over my lifetime.

And every single time, it still is fascinating and amazing and makes you feel good.

The very first one back in 1989 that I was directly involved in.

- Mmh.

- And when I had a chance to tell this young man on a Saturday night, while I'm at home on the phone with him and he's in his room that he's getting a heart, that was the most emotional and amazing thing that I'd done in awhile.

- Right, right.

Well, that makes what you're doing so worth it, especially the emotion and the family emotion too.

- Right, 'cause you take essentially, it takes somebody who, without this intervention, they're gonna not live another few months, maybe a year, if you're just doing everything medically possible, but they're gonna die and you know it, they know it, there family knows it.

To take that situation and turn it into an entirely new opportunity for life.

A rebirth kind of, if you will, a new birthday and then see that person go 10, 15, 20, 25 years out, living their life on that heart, whether they're 30 when they get it and now they can have children of their own and they get married or whether they're 50 and now they can watch their grandchildren, it doesn't really matter.

- Right.

- But to see that go from death, - From zero.

- To to total life, is just an amazing feed.

And I've been in there a lot of times I don't do it in every time.

But to again, look at the recipient, that's there, they're waiting for the donor heart to come in.

You look down and there's no heart.

There's just a hole in the chest.

And there's nothing there.

The lungs are there, but there's no heart.

And then sometime later the hearts here, they put it in, it starts beating.

And now you look down and there's this little tiny heart beating on its own.

- When there was a heart, three times the size of it that they took out.

And there's a big hole sitting there.

- Wow!

- I mean that again, that's just amazing that that can happen.

- Right.

That you can do that to a heart and it just goes, (indistinct) and you don't have to do much, you just warm it up.

- So, but what we need to do, don't have a whole lot of time, but we just need to keep our hearts healthy.

- Absolutely.

- Okay.

- Yeah.

- Well, thank you for joining us and for enlightening us on what you do and what's going on at OSF.

And it is pretty fascinating.

Yeah, modern medicine.

- It is amazing thing.

And the only thing I would end on is without donors and the gracious gift they give in a time of crisis.

There's no transplants, - Right.

- Until we figure out how to build them on a shelf and then put them in and that's coming.

That's not good in my career.

I'm an old guy now, but that's coming, the young folks, they're gonna see this.

There's no question about the engineering's there.

They're already doing it and working on it to try to perfect it, so it's coming, that'll change things obviously.

But in the meantime, if you don't have a donor and you don't have a heart, then there's no transplant.

- That's not gonna happen, right.

- And then these people who could have a life will die because there's no heart for them.

Same for a kidney, a liver, a lung.

It doesn't matter what organ it is, it's all the same.

So to be organ donors.

- Put it on your-- - You can't take it with you once you're passed.

- Right.

- But whatever tragedy occurs.

So you might as well let seven or eight more people live and donate your organs 'cause you can't take them with you, so.

- Perfect, all right.

Well, thank you.

All right, you heard from the doctor.

- Thank you.

- All right, well, you enjoy stay safe and healthy.

Thanks for joining us.

(upbeat music)