Heart to Heart with Anna

Getting to Know Keith Flynn: A Heart Transplant Hopeful!

October 29, 2019 Keith Flynn Season 14 Episode 22
Heart to Heart with Anna
Getting to Know Keith Flynn: A Heart Transplant Hopeful!
Chapters
Heart to Heart with Anna
Getting to Know Keith Flynn: A Heart Transplant Hopeful!
Oct 29, 2019 Season 14 Episode 22
Keith Flynn

Keith Flynn was born in 1975 and shortly after birth, he was diagnosed with Ventricular Septal Defect, Double Inlet Left Ventricle, Pulmonary Atresia, and Hypoplastic Right Ventricle. He had two Blalock-Taussig shunts at age 6 months and 5 years, and a modified Fontan procedure when he was 15. Despite experiencing atrial arrhythmias in early adulthood, Keith received limited cardiac care in his 20s and early 30s. 

In his 30s, Keith started experiencing syncopal (or fainting) episodes, and on one occasion was rescued by his wife after fainting while swimming. As a result of these episodes, Keith received a pacemaker and recording device and was treated with Sotalol, a beta-blocker. However, Keith had also begun to experience fluid retention related to heart failure, and doctors told him that he would need a heart and liver transplant. He is currently undergoing the required testing to be listed for both organs. 

Over the years, Keith worked for a variety of retail and restaurant businesses, before working his way up to managing and owning businesses. He also started doing stand up comedy. Most recently, he has worked in the health and disability rights fields and earned his Bachelor’s degree in Accounting. He met his wife in 2003 and currently lives in Baltimore.

In this episode, Keith will share more about his life -- living with a congenital heart defect -- with Anna. He will also explain how he has come to need to be listed for two different organs. He will also share with Anna what he believes keeps him going, even when the going gets rough.

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Show Notes Transcript

Keith Flynn was born in 1975 and shortly after birth, he was diagnosed with Ventricular Septal Defect, Double Inlet Left Ventricle, Pulmonary Atresia, and Hypoplastic Right Ventricle. He had two Blalock-Taussig shunts at age 6 months and 5 years, and a modified Fontan procedure when he was 15. Despite experiencing atrial arrhythmias in early adulthood, Keith received limited cardiac care in his 20s and early 30s. 

In his 30s, Keith started experiencing syncopal (or fainting) episodes, and on one occasion was rescued by his wife after fainting while swimming. As a result of these episodes, Keith received a pacemaker and recording device and was treated with Sotalol, a beta-blocker. However, Keith had also begun to experience fluid retention related to heart failure, and doctors told him that he would need a heart and liver transplant. He is currently undergoing the required testing to be listed for both organs. 

Over the years, Keith worked for a variety of retail and restaurant businesses, before working his way up to managing and owning businesses. He also started doing stand up comedy. Most recently, he has worked in the health and disability rights fields and earned his Bachelor’s degree in Accounting. He met his wife in 2003 and currently lives in Baltimore.

In this episode, Keith will share more about his life -- living with a congenital heart defect -- with Anna. He will also explain how he has come to need to be listed for two different organs. He will also share with Anna what he believes keeps him going, even when the going gets rough.

Please take a moment to follow us on your preferred social media platforms:

iTunes: https://itunes.apple.com/us/podcast/heart-to-heart-with-anna/id1132261435?mt=2

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YouTube:  https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5Zw

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If you enjoy this program and would like to be a Patron, please check out our Patreon page: https://www.patreon.com/HeartToHeart

Support the show (https://www.patreon.com/HearttoHeart)

Keith Flynn:   0:00
Yeah, and then you start to understand what a transplant actually entails. I really regretted wishing for that. It's in no way a fix to anything, CHD related. It's basically, like one of my cardiologists used to tell me, that you're basically trading one set of circumstances for another set of circumstances, but luckily, this set of issues mixed in your life for some years to come.

Anna Jaworski:   0:36
Welcome to "Heart to Heart with Anna," I am Anna Jaworski and the host of your program. This is the last episode of Season 14. Today's episode is called 'Getting to Know Keith Flynn: A Heart Transplant Hopeful.' Keith Flynn was born in 1975 and shortly after birth he was diagnosed with ventricular septal defect, double inlet, left ventricle, pulmonary atresia, and hypeoplastic right ventricle. He had two Blalock-Taussig shunts at age six months and five years and a modified Fontan procedure when he was 15 years old. Despite experiencing atrial arrhythmias in early adulthood, Keith received limited cardiac care in his twenties and thirties. In his thirties, Keith started experiencing syncopal, or fainting episodes, and on one occasion he was rescued by his wife after fainting while swimming. As a result of these episodes, Keith received a pacemaker and recording device and was treated with sotalol, a beta-blocker. However, Keith had also begun to experience fluid retention related to heart failure, and doctors told him that he would need a heart and liver transplant. He is currently undergoing the required testing to be listed for both organs. Over the years, Keith worked for a variety of retail and restaurant businesses before working his way up to managing an owning businesses. He also started doing stand up comedy. Most recently, he has worked in the Health and Disability Rights fields and earned his bachelor's degree in accounting. He met his wife in 2003 and currently lives in Baltimore. Welcome to Heart to Heart with Anna Keith.

Keith Flynn:   2:17
Hi Anna. Thanks for having me on. I'm excited to be here,

Anna Jaworski:   2:20
I'm excited to not only have you today, but to know that I'm going to be getting to know you better over the next several months.

Keith Flynn:   2:29
Yeah, that sounds great. I'm looking forward to it.

Anna Jaworski:   2:31
Well, let's get right into it. I know you had a single ventricle heart and the Fontan procedure. It sounds like you've had a lot of ablation is to try to get rid of your arrhythmias. Are you currently in heart failure?

Keith Flynn:   2:45
Yes, I am. I guess the realization of heart failure came in 2004 when I passed out while taking the trash out. 

Anna Jaworski:   2:53
oh!

Keith Flynn:   2:53
No one likes taking the trash out, but I don't suggest trying to get out of it that way.

Anna Jaworski:   2:58
I agree with you.

Keith Flynn:   3:00
Yeah. My then-girlfriend, and now wife Suzie demanded that we go to the emergency room. So we were living in Tallahassee, Florida, at the time, and we're both kinda new to the area, So we hadn't had any cardiologists contact. 

Anna Jaworski:   3:15
Mmm. 

Keith Flynn:   3:15
So they had no idea what to do with me when I arrived at the ER, and they couldn't really understand my history. 

Anna Jaworski:   3:21
Oh, 

Keith Flynn:   3:23
I thought the Fontan, at that point, was a fix. So we didn't really know if it was my heart, but they did decide that I had a kind of weird heart rhythm. So they just threw me in the ICU and treated me like I had a heart attack.

Anna Jaworski:   3:36
Yikes! I lived in Panama City Beach for two years where My husband was in graduate school and I did a bunch of research and did not feel like Tallahassee was really able to care for my son, and so we went to Pensacola to get care.

Keith Flynn:   3:54
Yeah, I definitely agree. I don't think Tallahassee would have anything for CHD management there. For sure, or at least not when I was there.

Anna Jaworski:   4:04
Right? And what year were you there?

Keith Flynn:   4:07
I was there in 2003.

Anna Jaworski:   4:09
We were in Panama City Beach in 1998 to 2000, and I just didn't feel like they could handle my kid. So we drove to Pensacola, which was quite a distance. So you're in Tallahassee. You're at a hospital that, you know, it's not the right hospital for you. They're treating you like you're an acquired heart patient and you know you're not. So what happened?

Keith Flynn:   4:33
Well, after several days of being in the ICU we were getting kind of impatient. So I threatened to leave, and finally, a cardiologist did come in to see me. Basically, she came in and said, quote, your ejection fraction is very low, it's around 25% close quote. She turned around and walked out of the room.

Anna Jaworski:   4:52
Oh, my gosh! She walked out after she just dropped that bomb on you?

Keith Flynn:   4:57
Yeah. She didn't give us an explanation of the issue or anything.

Anna Jaworski:   5:00
Oh, my gosh. So what did you do?

Keith Flynn:   5:04
Well, we just kind of looked at each other, my wife and I, we had no idea what we were in for. Finally, we were able to get a referral to Shand's, which is the University of Florida. 

Anna Jaworski:   5:14
Sure. 

Keith Flynn:   5:15
Gainesville.

Anna Jaworski:   5:16
Mmm. Mmm. Mmm.

Keith Flynn:   5:18
And then we saw doctor Arwaseidi

Anna Jaworski:   5:20
I've met her. She is amazing.

Keith Flynn:   5:24
She's wonderful. 

Anna Jaworski:   5:25
Yeah, 

Keith Flynn:   5:26
She is. She really is.

Anna Jaworski:   5:27
Okay now. Did they take you by ambulance or did you... please tell me you didn't drive yourself there?

Keith Flynn:   5:35
No, they actually let me leave the hospital. So they released me, and then it was, I don't remember the exact time period, but it was some time before we got an appointment there, and then we went...

Anna Jaworski:   5:48
Oh, my goodness

Keith Flynn:   5:49
...to Shand's whenever we got an appointment.

Anna Jaworski:   5:50
Oh, my goodness. So they didn't airlift you there? They didn't send you by ambulance? They just let you go home?

Keith Flynn:   5:58
Yeah, Exactly. 

Anna Jaworski:   5:59
Wow. 

Keith Flynn:   6:00
It was a situation where I lost consciousness. It wasn't happening every day. So, I guess they figured we should just take our chances and go to Shand's whenever we got an appointment. So, the weird thing is, the only person who kind of knew what was going on was one of the ICU nurses and she looked at me, she said, "Well, I think you might have to go to U F. and they write you up for a heart transplant." I was...

Anna Jaworski:   6:25
Oh, my gosh! She said that with just the limited information that she had. 

Keith Flynn:   6:31
Yes!

Anna Jaworski:   6:31
Wow, she was intuitive.

Keith Flynn:   6:33
She was, she was. She actually was the only person who was correct in that hospital the whole time.

Anna Jaworski:   6:39
Oh, my gosh. (laughter) Well, you guys are amazing. I'm so glad you had your wife by your side though because imagine how scary that would have been if you would have been there by yourself.

Keith Flynn:   6:53
Oh, yes, she's wonderful.

Anna Jaworski:   6:55
I, I want to meet her already. She sounds amazing. Okay, well, let's backtrack just a bit, and let's talk about your youth. I know you've had multiple heart procedures because you had two Blalock-Taussig shunts, you had your Fontan, you've had ablations so, your poor heart's been touched a lot, but I'm wondering what your health was like as a kid? Were you able to run and play like your peers?

Keith Flynn:   7:18
No, that's the short answer. 

Anna Jaworski:   7:20
Okay, 

Keith Flynn:   7:20
In those days, things were a little different. In schools, if you had a disability or were unable to do what other kids did, you were just kind of excluded from the activities. So, for instance, I never attended a PE class or physical education class in school. 

Anna Jaworski:   7:37
Wow. 

Keith Flynn:   7:39
Yeah. So my doctor who followed me in my childhood and my youth was very cautious of me doing any organized sports. I think my parents kind of took that as a no sports mandate. So what I did do, though I did, you know, kind of hook up with some friends in my neighborhood, I rode my bike a lot with them and played a lot. So the only time I was really unable to keep up with them is when we were doing some extreme physical exertion, like running or racing on our bikes or anything like that. Aside from that, I was able to keep up pretty well.

Anna Jaworski:   8:12
Do you have any sisters or brothers?

Keith Flynn:   8:15
I do. I have an older sister and an older brother.

Anna Jaworski:   8:17
So, were you able to keep up with them?

Keith Flynn:   8:20
We didn't play a lot together I guess you would say. We didn't do a lot of activities together because they were older, so it was mainly my friends.

Anna Jaworski:   8:29
Okay. Okay. Okay. So then we fast forward. You're in your twenties. You're in your thirties. You're thinking you're fixed because that's what people thought back then. How were you feeling at that time?

Keith Flynn:   8:43
So, yes, you're correct. That's the way the doctors framed it back then, was the Fontan procedure was a fix,   

Anna Jaworski:   8:50
Right. 

Keith Flynn:   8:51
Kind of in my twenties and thirties, I didn't realize how lucky I was. I really felt well after the surgery. So, I kind of tried to outwork everyone that I was around.

Anna Jaworski:   9:02
Oh, no.

Keith Flynn:   9:04
Yeah. I thought that was a kind of a way to prove that my heart had no bearing on what I could do.

Anna Jaworski:   9:08
Uh, wow.

Keith Flynn:   9:09
Yeah. Still didn't have that great of an exercise capacity, but I didn't go to cardiologists except for once a year, and that was kind of due to. No health insurance and also kind of due to me, not wanting to be around the cardiologists. But, I did have to go to one who was an adult cardiologist who really had no CHD experience, but I went to him to kind of keep my Lasix and my Ramipril prescriptions up to date.

Anna Jaworski:   9:34
Okay, So did you have any idea that one day you would be needing our heart and liver transplant?

Keith Flynn:   9:42
Well, I honestly thought that if he needed anything in the future, that it would be a valve replacement because I have one valve that's always had a leak in it my whole life. The funny thing is, I used to wish that I would get a heart transplant because I used to think, "Oh, just go in, get the heart changed and you're good to go." 

Anna Jaworski:   9:59
Oh, wow.

Keith Flynn:   10:00
Yeah, and then you start to understand what a transplant actually entails. I really regretted wishing for that. It's in no way of fixed anything CHD related. It's basically like one of my cardiologists used to tell me that you're basically trading one set of circumstances for another set of circumstances. But luckily, the set of issues makes in your life for some years to come.

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Anna Jaworski:   11:38
You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at [email protected] That's [email protected] Now back to Heart to Heart with Anna.

Anna Jaworski:   11:57
Before the break, we were getting to know Keith a little bit better. Keith. In this segment, let's talk about your experiences with arrhythmias. It sounds like once you hit your thirties, you started to have a lot more episodes of fainting or syncope. Can you tell us if there were certain activities that would bring that about?

Keith Flynn:   12:17
I really wish I could tell you there were, Anna, but honestly, I passed out in so many different scenarios. One time it was walking, swimming or sitting down, or watching TV or even lying on the bed. I almost feel like I could write a Dr. Seuss type book about ways to pass out. Each time after the episode, we would check my blood sugar check, my blood pressure, pulse, oxygen saturation. All that seemed pretty much in range, nothing suspicious, and I always thought it was kind of funny because I could feel it coming on when I was about to pass out. I would hear, like a train horn almost right before I would pass out. Yeah, and I was always able to say a little something right before I would lose consciousness. Like, a couple of times, I told my wife things like, "Oh, dial 911," and then I would pass out.

Anna Jaworski:   13:07
Oh, wow!

Keith Flynn:   13:08
"I don't feel so well." and then I would just lose consciousness.

Anna Jaworski:   13:11
That's interesting that you actually have an auditory sensation before you pass out.

Keith Flynn:   13:16
Yeah, it was a little weird, and we went through all kinds of scenarios with doctors. I even went as far as to stop doing my vice, which was drinking diet soda for over a year. Nothing worked that we change diet or anything. So finally, after a couple of ablations, a pacemaker implant, and a lot of ah, lot of medication adjustments, it's been years since an episode, so that apparently they figured out something. Yeah,

Anna Jaworski:   13:41
Right. All right. Well, I was hoping after the pacemaker that the episodes would have stopped.

Keith Flynn:   13:49
It helped. Yeah, I actually had two pacemakers. I had one implanted and then... and it was actually. I think, the addition of the sotalol that actually helped. 

Anna Jaworski:   14:00
Ah. 

Keith Flynn:   14:02
Yeah, Once they got that adjusted correctly, I think that was what we needed.

Anna Jaworski:   14:07
Wow. Because you're you're just complicated, Keith. It's not gonna be an easy fix for you. I mean, and you're not fixed. You know that now. 

Keith Flynn:   14:14
Right, right.

Anna Jaworski:   14:14
But, back then, you didn't know that. Okay, Well, since you had a single ventricle heart, was there any difficulty in inserting the pacemaker?

Keith Flynn:   14:24
Yes, there was. Dr Randall Bryant. He's in Jacksonville, I'm not sure if you know him, he's an electrophysiologist. He performed my ablations and installed my pacemaker. He told me before I went in for the ablation, he said, "Look, if we can't get this stopped with the ablation, I'm gonna wake you up and ask you if I can put a pacemaker in there, and then I'll need your permission to do that," and I'm like, "Yeah, that's fine." So I remember getting shaken awake and him leaning over and explaining to me that I needed a pacemaker, and was that okay? Nodded? Yes. And then seconds later, I was back to sleep and waking up in the recovery room with a pacemaker installed. 

Anna Jaworski:   15:04
Wow, 

Keith Flynn:   15:04
He was only able to install the atrial lead at that time, though. He said that if we ever needed to install the ventricular lead that it would require a very invasive procedure. So, luckily, it hasn't come to that yet.

Anna Jaworski:   15:21
Okay, so they were able to install the pacemaker minimally invasively? They didn't actually have to do an open-heart procedure?

Keith Flynn:   15:30
That's correct. He did it in the cathiterization lab.

Anna Jaworski:   15:32
Oh, wow! That's amazing! I'm pleased to hear that they were able to do it in a cath lab for you, even though only the atria, doesn't sound like they were able to do but the atria and the ventricle. So, do you think that that's why you're also having to have the sotalol as well?

Keith Flynn:   15:50
It could be. Actually, a couple of years ago, they took me off sotalol and switched me to tekasin because the sotalol was no longer working. So that's what I'm on right now.

Anna Jaworski:   16:02
And that seems to be working okay?

Keith Flynn:   16:05
it's working better. I'm still basically paced all the time, about 95% of the time. 

Anna Jaworski:   16:11
Wow. 

Keith Flynn:   16:12
So yeah,

Anna Jaworski:   16:13
Wow. Okay, so it's really, really scary when nothing seems to solve a medical problem, and your arrhythmias couldn't be solved with the ablations, cardioversions, medications, a pacemaker. Nothing seems to really help you from going into heart failure. So, tell us what it's like for you to have one problem after another without having a definitive fix?

Keith Flynn:   16:38
Yeah, that's a great question, Anna. I never really thought about it that way, though. I'm a very positive person. I like to think what I've gone through in my life will somehow contribute to someone else receiving better care down the road. And since I've had issues all my life, if I could go three months without having a visit to the doctor, which hasn't happened in years, it's kind of like a vacation to me. Honestly,

Anna Jaworski:   17:00
I bet it is. Yeah.

Keith Flynn:   17:03
Yeah, so I guess I always had in my mind that the next thing, you know, whatever procedure it is, if it's a transplant, an ablation, whatever it is if it'll give me a better quality of life than I have now, and if that's possible to maintain for years to come, then it's worth it. I'm really secure my faith, and I've realized that my life is not my life. It's to be lived to help others out. Make them laugh when I can, you know?

Anna Jaworski:   17:32
I just love that! That's so awesome.

Keith Flynn:   17:35
Thank you. If God grants me more time to do that. I'm grateful. It's just the way I see it.

Anna Jaworski:   17:40
So you just rolled with the punches?

Keith Flynn:   17:43
I mean, that's all I can't do really. 

Anna Jaworski:   17:44
Right, right. 

Keith Flynn:   17:45
You know, if I kind of bog myself down with "oh, they can't do anything to fix this," then I'm just gonna walk around depressed all the time.

Anna Jaworski:   17:53
Right! But you know, Keith, there are people that that happens to?

Keith Flynn:   17:57
Yeah. I hate to see that. It's very sad.

Anna Jaworski:   18:00
So, you would say that your sense of humor and your faith or where they're helping to carry you on?

Keith Flynn:   18:05
Definitely. Yes.

Anna Jaworski:   18:07
And it sounds like you have a wife who is a great support system for you as well. 

Keith Flynn:   18:12
Absolutely, absolutely. She has always been there for me. We're going on 11 years of marriage this year, and she's just helps me more and more every day.

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Anna Jaworski:   19:30
Before the break, we were talking with Keith about experiencing multiple problems with his heart that have resulted in him having to be listed for a heart and liver transplant. Keith, let's start this segment by having you talk to us about what it's like to have to be listed for a transplant because I know it's quite an involved process. Can you walk us through it?

Keith Flynn:   19:50
Sure, I'll be glad to. I think for each person that's different. So I kind of go through what I've been through. I'm not sure if you're familiar with the TV show The Resident.

Anna Jaworski:   20:00
I'm not,

Keith Flynn:   20:01
Yeah, so sometimes I'll watch that show and I'll see someone come in at the beginning of the episode. They don't know what's wrong with them, and they find out, "Oh, you need a heart transplant." and by the end of that hour, they're walking out of the hospital like nothing ever happened to them.

Anna Jaworski:   20:15
Oh, wow!

Keith Flynn:   20:16
So, if you've ever seen that, it's nothing like that.

Anna Jaworski:   20:19
No, I'm glad I haven't seen that because I would be picking holes in the whole program the whole time. 

Keith Flynn:   20:26
It's a really good program to pick holes in. I'll put it that way.

Anna Jaworski:   20:29
Okay, okay. So, tell us what it's really like Keith, you've got the skinny on this.

Keith Flynn:   20:35
I've actually been through the testing process twice. I did it once in Florida, and then when I moved to Pennsylvania I had to redo it.

Anna Jaworski:   20:42
Oh, wow.

Keith Flynn:   20:43
I've been through it twice, and it always starts out with a huge blood test. For instance, Penn took 22 vials of blood from me at one time. 

Anna Jaworski:   20:53
Oh, my gosh! You felt like a pincushion when you were done.

Keith Flynn:   20:57
Oh, absolutely. We were sitting there counting as they went through. It was wild

Anna Jaworski:   21:01
Oh wow, 22 vials. Wow. Okay,

Keith Flynn:   21:05
Yeah. I think they do every test possible with your blood, and then you're going to have simple procedures like X-rays of the chest. 

Anna Jaworski:   21:12
Mmhmm

Keith Flynn:   21:13
And then there's gonna be heart catheterizations, MRIs with contrast, bone density scans, lung capacity testing, stress test just innumerable doctor's appointments, meetings with specialists and surgeons. And...

Anna Jaworski:   21:29
Did both of the hospitals agree that you needed a heart and a liver because we didn't even talk about that. Why you needed to organs.

Keith Flynn:   21:39
After the Fontan, the pressures increase that the heart puts out. This increases the blood flow into the liver. So, with these increased pressures, it puts extra work on the liver, and your liver can become cirrhotic. When I was at the University of Florida, in around 2008, they did do a liver biopsy. I had fibrosis, but not cirrhosis yet. (Okay), and that is a long process to get cirrhosis. So in Florida they didn't even talk about a possible liver transplant because, as you know, a liver can repair itself if the body's pretty healthy.

Anna Jaworski:   22:22
Right, and I've heard of people who have said that when they get the new heart that the liver does come back, it bounces back.

Keith Flynn:   22:31
Exactly. At Penn. They've prepared me for heart and a liver transplant. So what they'll do is when I'm in the O. R. They'll go ahead and do the heart transplant. They have to visually inspect the liver to see if I need that. Chances are they have a feeling that I absolutely will, but there's always a chance that they could see that it's not that bad, and they'll feel it will repair itself. They say they have the greatest success rate, post-Fontan with the heart and liver transplant.

Anna Jaworski:   23:01
Yeah, and I just read a study where they were able to look at patients who had just the heart and the heart and a liver. It was a very small group, I'm sure you can imagine. Thankfully, there aren't thousands or hundreds of thousands of people having these procedures, so it was very, very small. But, in a small cohort that was looked at, the people who got the heart and the liver did seem to recover faster and better. What is a typical day like for you while you're waiting for a heart?

Keith Flynn:   23:34
So honestly, I try to keep it as normal as I possibly can. The doctor explained to me once that if a person who did not have a CHD was in the heart failure that I was in, that they probably wouldn't be able to get out of bed. But because our bodies adjust so well to different situations that we're able to wait outside of the hospital. So since I don't have to wait in the hospital, I actually still work full time.

Anna Jaworski:   24:01
Wow!

Keith Flynn:   24:01
I work. Yeah, yeah. So I work for a nonprofit organization called Disability Rights Maryland, and they help Maryland residents with disabilities obtain access to needed services. So, basically, anyone with a disability in Maryland who is entitled to services, and is having a difficult time getting them, they can call us, and maybe we can help them out there. All our services are free. 

Anna Jaworski:   24:27
Wow, 

Keith Flynn:   24:28
It's nice to work somewhere that actually makes a noticeable difference in others' lives. 

Anna Jaworski:   24:32
Absolutely.

Keith Flynn:   24:34
Yeah, So after work, it's kind of up in the air because, as you know, with your son, some days we have energy, somedays we really don't. So after work, I could still make it to the gym. Maybe. If not, I may just be laying on the couch watching TV. And quite honestly, some months are different than others, because a couple of months ago I was basically coming home, laying on the couch. I went to see my cardiologist, and my wife's like, "Yeah, he's not doing as much as they used to," and they figured out they needed to give me more diuretics. So they did that and I dropped some weight, and I was good to go.

Anna Jaworski:   25:08
Yeah, yeah, well, that and now that's one of the problems when you're in heart failure is that you can, unbeknownst to yourself, because it happens like you were saying so gradually, but you can put on 10 or 20 pounds of fluid, and it's just in all your cells all over your body, and you don't realize it. But that's like carrying around a baby,

Keith Flynn:   25:30
Right. Exactly. Well, I wouldn't know about that, but...

Anna Jaworski:   25:32
Well, but I mean, in 10 to 20 pounds, that's a baby.

Keith Flynn:   25:36
Somedays I look like I'm carrying around a baby.

Anna Jaworski:   25:41
I rather doubt that, Keith, but I have had friends who go into congestive heart failure. And, yeah, they say their abdomens get quite distended, and that's how they know there's a problem because all of a sudden there's all this fluid in their abdomen that they know shouldn't be there because it's not like they had five Big Macs or anything like that. 

Keith Flynn:   26:01
Exactly

Anna Jaworski:   26:01
It's just the fluid that builds up. Well, It's really scary to know that you could get that fluid buildup and not even know it. It's good that your wife is aware and she's watching you, and she's kind of keeping track of what's going on with you so she could report to your doctor, because I think that things do have been so gradually, to you, to other heart warriors. That you're just... you're just plugging away. You're just trying to make it step by step and you may not realize how much you're slowing down

Keith Flynn:   26:34
Right. A funny story to speak to that is; my wife was actually working in Massachusetts, and I was at our house in Tampa when we lived in Florida, and I got to the point where I was struggling to get out of bed in the morning and I just couldn't understand why. Why couldn't lose weight? And I actually went to the doctor before we made a move, to see my cardiologist and she put me in the hospital. She walks in and she's like, "What is going on with you?" and I had accumulated fluid so gradually I didn't realize it. I just thought I was tired from packing for the moves. 

Anna Jaworski:   27:12
Oh, wow.

Keith Flynn:   27:12
Yeah, it definitely happened that way.

Anna Jaworski:   27:14
Mmmhmmm. Yeah, well, I have friends who tell me that one of the ways that they know that there's a problem is they can't sleep flat on their back, that they have to sleep sitting up, and that's one of the ways that they know that they're accumulating fluid. So there's all these subtle ways like you were saying before, every person presents a little bit differently. So there may be some common signs, but we know that every person is unique and especially you heart warriors who have had different kinds of surgeries and have unique anatomies. And so, even though you may have certain signs that are the same as everybody else, the way presents and you may be a little bit different than in somebody else, 

Keith Flynn:   27:56
Right, right. 

Anna Jaworski:   27:58
Well, I am so impressed with your Facebook page and how open and honest you're being, and you told my producer David Franka, that should be willing to talk with us at intervals to help people understand what it's like to be living in heart failure and what it's like to know that you need a transplant. Why did you decide to go public with this?

Keith Flynn:   28:19
Well, I realized a few years ago when I was working in Florida, I was working with individuals with disabilities. And so I was around a lot of people who understood certain disabilities. But no one seemed to know what CHD was and I was like, how can so many people be affected by this, and most of the people who work in this industry have no idea what it is?

Anna Jaworski:   28:41
Yeah,

Keith Flynn:   28:42
I really noticed that there needs to be some education and some public awareness about it. 

Anna Jaworski:   28:48
Right, 

Keith Flynn:   28:48
Someone with CHD can have what some people refer to as an 'invisible disability.' So they have their shirt on and someone walks by you, they're never going to know that anything is wrong with you.

Anna Jaworski:   28:57
Right,

Keith Flynn:   28:58
We have to speak out to let people know what's going on and how it affects us, affects our families and affects the workplace. That's kind of the reasons behind it. Just kind of making sure that I can do my part to let people know more about CHD and raise awareness for it.

Anna Jaworski:   29:18
I think it's fabulous. Thanks so much for coming on the program today, Keith, and for sharing your experiences with us. I'm looking forward to catching up with you in another month or so.

Keith Flynn:   29:28
Yeah, thanks so much for having me on today. Anna. I had a great time looking forward to doing it again soon.

Anna Jaworski:   29:34
Okay, that sounds good to me. Friends. I can't believe it. This concludes Season 14 of "Heart to Heart with Anna." Thanks for listening today. If you enjoyed listening to this episode, please consider becoming a patron. Just go to www dot p a T r e o n dot com slash heart to heart and pledge a monthly amount to support our program for just a cost of a pizza, you could support us for an entire year, and I hope you all will still tune in in November and December, we'll be having some encore presentations while I take a little break and get some work done on some books that I'm working on. And we'll be back in January of 2020 with a brand new program, we'll find out how Keith is doing. I hope you all have happy holidays and remember, my friends, you are not alone.

Anna Jaworski:   30:25
Thank you again for joining us this week we hope you have been inspired and empowered to become an advocate for the congenital heart defect community. "Heart to heart with Anna," with your host Anna Jaworski can be heard every Tuesday at 12 noon Eastern time.