Intro: Welcome to Extraordinary People, a podcast series from UK HealthCare. The stories you'll hear are from patients who overcome the most challenging moments of their lives and our providers who've helped thousands of patients navigate those moments.

Raymond Cloud: It's one of the scariest things. Have you had nightmares that you can't wake up from? You know, something's going to get you and you're waiting there and you're just so afraid. And I had bounced off where I could not catch my breath, and I just knew it was over. It was one of the scariest things I have ever experienced.

Host: Raymond Cloud had taken great care of himself. The former high school and college athlete was able to run 15 to 20 miles a week. He'd been working with a personal trainer who helped him gain about 30 pounds of muscle. He was about as strong and athletic as a 58-year-old man can be. Things were good professionally too. After two decades working in corporate communications for Kentucky Utilities, Raymond was thriving in a second career centered around hotel and event management. Then in June 2014, his life quickly started to change.

Raymond Cloud: I can remember the first incident I had with my lungs, so to speak, is that I was working on the house on a property down in the western part of state and down around Fort Knox in Breckenridge County. And I was going to the driveway, we're doing some renovation, and I just ran out of breath. I just couldn't walk anymore.

Host: After an initial diagnosis of sarcoidosis, an inflammatory disease for which the black population is at increased risk, further testing determined that Raymond was suffering from idiopathic pulmonary fibrosis, which causes scarring of the lungs, making it difficult to breathe. The damage is irreversible and over time only worsens. At the start of that summer, Raymond thought he was living his best life. By the end of it, his primary care doctor was encouraging him to live the remainder of it to the fullest.

Raymond Cloud: You know, that year I'm thinking, "Man, you lose your health. You know, I couldn't work anymore." I said, "I'll lose my son." I went, "Oh, okay. God, what's up here? You know, what are you trying to tell me?" You know, I've been around on, I say, the spiritual side of things and I understand that, you know, God has a plan. And I kept thinking, I said, "Well, I know it's really none of my business." But at the same time too, it really stressed me out. But at the same time too, I almost took a flip side of that. Since I have sort of have a death sentence, it's time for me to see the world and do some stuff, you know? So, I basically sold my house, you know, took a trip across country with a friend of mine and spent about 10 days driving five, six days one way and hanging out and coming back doing something and we just had a great time. And eventually, I moved to Florida for a couple years. I continued having my lungs looked at. And to be honest with you is that I just sort of not even thought about getting treated for it. I mean, what are they going to do, you know? And I had never considered a lung transplant. I never considered that.

Host: In 2019, after several years breathing in the Florida sunshine, Raymond returned to Bell County, Kentucky where he grew up. By then, Raymond needed to use an in-home oxygen concentrator to support his breathing. He wanted to be closer to family as he prepared for what he believed would be his final years. Months later, the COVID-19 pandemic halted society and, for Raymond, what remaining social life he'd been able to maintain in his altered condition.

Raymond Cloud: It was devastating. You know, I just never imagined getting old. I imagined getting old, I imagined getting old a little healthier. You know, you could have never told me that I would have trouble breathing, that I wouldn't do that. So, everything about me just sort of changed. I mean, even my outward appearance outside of not being able to breathe, you know, I didn't want to take care of myself. I didn't care about haircuts or anything like that. I said, "Hell, you're going to die anyway." But eventually, eventually, there was a small thing that sort of happened.

Host: Raymond and his wife, who had been living independently, took guardianship of three adolescent grandchildren in 2020. Raymond moved from Pineville back to Lexington to help look after them. And as a result, started making more visits to a pulmonologist he'd been seeing occasionally at UK HealthCare.

Raymond Cloud: And he finally just said something to me. He said, "Raymond, what about a transplant?" I looked at him, I said, "Well, hell, I don't know. I was waiting for you to say something." So, he said, "Do you want me to put you on the transplant list or meet our transplant team?" I said, "Well, that would be fantastic." At this part particular time, I sort of came out of dark place. And I kept thinking, "You know, you got these grandkids and you've got to stay around a little bit longer to the best of your ability." So, we went through the year of testing, making sure that I was physically strong enough to withstand the surgery.

Host: Raymond's prospects as a transplant recipient were significantly heightened by his prior activity level and his gung ho attitude toward the services provided by the UK HealthCare Pulmonary Rehabilitation Clinic. In addition to offering exercises geared toward improving lung capacity and monitoring patient's vitals, the clinic works with a multidisciplinary team to cater activities as much as possible to each individual treated there. Angela Still, a therapist who worked with Raymond, has been with UK HealthCare for more than 30 years and helped launch the program.

Angela Still: Raymond is such an amazing individual. I remember laughing because you never encounter Raymond without laughing. Even though he was so ill and had such difficulty breathing, and I'm sure he saw his future as uncertain, he still had that ability to make people laugh around him and to really work hard. I was excited the first time that I saw him because I knew he had good potential and I was a little scared because I was just hoping that he would be able to get a transplant before it was too late.

Raymond Cloud: They did not offer pulmonary rehab down in the mountains where I sat for two years. So, I had to either try to get here and then COVID scared me. You know, of course, there was referrals, the pulmonary rehab, I had no idea. I'm a little cocky, just a little bit. And I was determined that-- "Did they have set goals for you?" You know, you test here this particular day, you see where you are and they set goals for you. And all those things that they had me doing, I enjoyed them anyway. Now, I did hate that six-minute walk. So, you know, going in there with them and evaluating me overall, blood pressure was monitored constantly, oxygen levels were monitored constantly, heart rate constantly. They took care of me like a newborn baby almost.

Intro: By the time he was officially placed on the transplant list in December of 2021, Raymond, with the help of the experts at the pulmonary rehabilitation clinic, had increased his lung capacity to 43%, a full five points higher than had been. Raymond expected to wait a while for a transplant. During his time in rehab, he observed others on the transplant list he thought were in more pressing need than himself. Raymond also started to believe that he was working hard for something that would never come to pass.

Raymond Cloud: I kept thinking they're not going to want the old black man like me with this. I'm not worthy of the lungs. I mean, I am old school and I kept thinking, "Look, Raymond, you're old, it won't work for you. It's not going to happen for you."

Dr. Sravanthi Nandavaram: Usually, whenever I look at a lung, I don't take any lung. I have certain criteria. They have to go through that criteria. And if I like it, then only I'll take it.

Host: This is Dr. Sravanthi Nandavaram, Medical Director of the Lung Transplantation Program at UK HealthCare. She is a specialist in lung transplant, critical care medicine and ECMO, an external life support system that keeps the respiratory system functioning. It is often used to support patients prior to lung transplantation.

Raymond Cloud: I was out going outside to get in my car, lugging that machine, you know, I'm thinking, "Man, if you could just make it to the car." I was getting to the point now where getting to the car was a chore and throwing that machine in there, you know, the oxygen tubes and all that good stuff and I get this telephone call and I'm coming out there thinking that, "Well, this is--" It was a one of those, you know, UK numbers. And I kept thinking, "Well, this is an appointment reminder or something like that." And she said, "Raymond?" I said, "Yes?" She said, "This is Dr. Nandavaram." Now, I was stunned, because I've only talked to her once, you know, only talked to her once. And I said, "Okay. Hello." And she said, "Well, we need to talk to you about your lungs." I said, "Well, okay. I'll come there." I think she says, "No, we found some." I said, "You did what?" It was a stutter like that. I said, "You found some lungs." And I said, "Well, where are they?" She said, "Well, we need to talk about that." She said, "We think that, well, these are great lungs for you."

Dr. Sravanthi Nandavaram: One of the questions that I asked myself is, "Will I take this to my family member?" It's a straightforward answer. Because if I have a question about it, I wouldn't take it. And that's how I tell patients, so that they don't have any doubts or they won't be concerned. So, like I have declined many lungs, which I didn't like them because of the quality, the same thing. So when Mr. Cloud got the offer, one of the things is that he had a high risk donor. And that's the reason I had to call him. And I had to go over, I need to explain to him, and he needs to give me the verbal consent that he will accept the donor. And that's the reason I called him. And he asked me, "Hey, what would you do?" Or like, "Should I take it or not? What would you suggest?" And that's when I said, "Yes. If this is my father, I would definitely take the lung."

Raymond Cloud: I mean, I was real hesitant. Again, I didn't think. Part of my mind was telling me," You're not worthy. It can't happen this fast for you." And she said, "If my father,"-- it aged me a little bit-- "were in your position, is that I would highly recommend he would take these lungs." And again, I kept thinking, "Well look, I need to call my wife and do this." And she said, "Well, Raymond, we need to know as soon as possible." And I said, "Okay, I'll do it." I mean, just like that.

Host: Within an hour, Raymond was at UK Albert B. Chandler Hospital. Mentally, he prepared himself for a dry run, which is when transplant patients receive a call like he did, but don't end up having surgery. But this was no empty trip. Raymond went under anesthesia on March 18th. When he gained full consciousness two days later, it took him a moment to realize he was still alive.

Raymond Cloud: It wasn't pleasant. And of course, I couldn't get out of the bed for several days. So, all the basic stuff you would normally do, you know, that you do on your own, I couldn't do that. But at the same time too, I could breathe. I mean, I could breathe. And they'd walk in and my wife would go, "Wow." She said, "I can't believe this." I said, "What do you mean?" She said, "Everything's changed about you in four days. Your skin color. Everything, Raymond." I said, "Well, hell, when you're deprived of oxygen..." I said, "I've never seen anybody really die. But to be honest with you, I've seen one or two get choked out before and, yeah, they do change colors. So, I think I was on that verge about to get choked out. And, you know, all the occupational, physical therapy, all that stuff started coming in working with me. I was stubborn. I was defiant. I was all those things that most transplant people, double lung, I have talked with and went through were. So, I wasn't different.

Host: While he was admittedly stubborn out of the gate, it didn't take long for Raymond to regain the can-do spirit that helped make him a good candidate for lung transplantation in the first place. It helped to have some familiar, friendly faces pushing him through his rehab.

Raymond Cloud: And that's what I kept in my mind. I said, "Okay, one step, just one at a time." So eventually, I start getting to the clinic. And you know, when I'm there, I started going to pulmonary rehab, where those girls there, they were just wonderful. When I think about this, it's just, "Whoa." I'm thinking, "Man, who does this?" I mean, I get emotional every time I think about it, because where I was versus-- it's just amazing. And even though I have some rough days and rough times, but pulmonary therapy, I would go at least two to three times a week, and they were very professional, very familiar with the process and they took me with the baby steps. But I was also determined and had done a lot of work prior to that. And those girls put me in shape, at least to the point where I felt comfortable. But well, we cooked while we were there, we played music, we did everything. And they made me feel like I look forward to going there. That was one of the few places that when I knew I had to go, I made sure I got there on time. And if I was ever late, I don't remember it. As a matter of fact, they told me, they said, "We don't worry about you because you're always here at least 10 or 15 minutes early." I said, "Let's do this." And part of it was too, you know, I want to get better. With these grandkids, let's put this way, there's much more of a purpose in my life, so to speak. Because for a couple years there, I don't think I had one. And those women were great.

Angela Still: And as a therapist, to me, that's one of the greatest compliments I could receive, because I know my skills, I know how to progress ambulation if someone can't walk, to get them to where they can and different assisted devices and that kind of thing. But what really sets a program apart or a therapist from another therapist apart is that ability to affect the patient's life. I think in my experience, in my personal opinion, you know, showing you how to safely use a walker and having you be able to want to walk more and then feel better and then be able to go back to your grandson's tee-ball games or whatever, get back involved in your family and in your life is so much more than just being able to use a walker and the walker sitting in your bedroom, you know, with your pajamas hanging over it or something. You know what I'm saying? So, I really appreciate that. But that's one of our goals by all means, is not only to affect their physical function, their functional capacity, their strength, their ability to do activities in their home, but to also impact that quality of life and that use of what we teach them and to change their life for the better.

Dr. Sravanthi Nandavaram: And whatever he did before he got the lung disease, I think that kept him moving because I think that's the thing for him now, "I need to get back to what I was before." And to be honest, he is one of the very few patients who wants to go to the rehab. Not many of my patients do that. Like, he's motivated and he's looking forward to do that. So, yeah, his perspective toward the transplant is like amazing. Like he took it very well. And as I said, he did have some like hiccups. He had some issues in between. He got hospitalized once or twice. He took it very well with a nice smile on his face, doing whatever we ask him to do, and then he got out of the hospital and he got back to his life. So, I think having that attitude rather than getting depressed with one hospitalization, it helps patients tremendously. It does help, yeah. And I think whatever the way he lived before, I think that kind of helped him. and I think his goal is to get back to how he was before, especially with this new lungs, which are working great for him.

Host: More than a year after his surgery, Raymond is feeling the best he's felt in some time. He's had complications, among them a couple of hospital stays due to kidney failure, an unfortunate byproduct of the number of daily anti-rejection medicines he must take. But Raymond has also gotten to experience moments that he wasn't sure he'd get to, like watching his grandson star for Middlesboro High School on the football field, cheering and cussing at his beloved Kentucky Wildcats during another March Madness run and busting a move to Beyoncé's latest album.

Raymond Cloud: Look, I haven't gone out yet. But this house, if the walls could talk, especially with the new Beyoncé Renaissance album, shoot. You know, me and TikTok and these new dance moves, they don't have nothing on me. Now, I will wear myself out a little bit at home doing that stuff, but I know it's exercise for me. But I tell you what, it's just a matter of time for my body and mind meet each other, it's going to be on.

Host: Some days are better than others, but Raymond is certain that more good ones than bad are in front of him. He's grateful to his donor and their family for the second chance they've given him. Raymond's excited to start living his best life again.

Raymond Cloud: My daughter and I are talking about going to concerts here soon. And I'm getting strong enough. I feel safe enough to do that. So, this surgery and that belief and the faith that I kept thinking that whatever it is that's going on in my life and whoever it is is not through with me apparently. It's, "Look, you're going to get some of these things back." So, the patience that I've had to practice, you know, and some acceptance that I've had to practice, because this has been a process. I mean, from 2014 up until now, when my breathing decreased, the worse to the point of where, you know, you resolve to the fact that you're just going to die, you know. And then, there's the point to where now, "Look at me," you know, I go, "Wow." The people around me go, "Wow." Lately, I've been out three or four different social events in the last week and people I have not seen in years say, "Wow. Look at you." Because they remember, you know, the before the transplant and my inability to do certain things. So yeah, you know, one thing is when you have such doubt in your mind, it affects you physically too. And it took some time for me to get back and have some faith that, "Look, man, it's going be okay. It's going to be okay."

Outro: This episode of Extraordinary People was brought to you by the UK HealthCare Brand Strategy Team. If you were a patient at UK HealthCare and would like to share your story, please visit ukhealthcare.com/stories. We would love to help you tell it. Thank you for listening.