Man Who Taught CPR to 65,000 Receives New Heart

Podcast Transcript

Kyle: Welcome to The Comeback, I'm your host Kyle Michael Miller. During this episode we're talking with Gene Shimandle who waited seven years for a heart transplant and his cardiologist Dr. Randall Starling from Cleveland Clinic, but first here's Gene in his own words.

Gene: Gene Shimandle, I'm 61 years old, 62 on this next birthday. I was the professor at Case Western Reserve University Medical School for 19 years where I taught advanced cardiac life support to the third year medical students.  I had awakened four o'clock in the morning and not able to catch my breath. I thought it was upper respiratory infraction. I didn't think that I had heart failure. Initially I was treated with medications and they were right on top of things, I followed the medication regimen. I had a hard time rising up out of a chair to be able to walk to the bathroom I was so fatigued and my shortness of breath was so demanding and there were some decisions as to what was going to be done and the decision for the left ventricular assist device to be implanted, the VAD, was a wonderful quality of life enhancer. That First LVAD clotted and another LVAD was implanted and the pump stayed clear until I received the call in 2017 in May that they had found me a new heart.

Kyle: Gene, Dr. Starling, thank you so much for joining us. You guys are our first guests on the comeback. 

Starling: Wow. Yeah that's great.

Gene: I like that. 

Kyle: Gene, you are a CPR instructor. 

Gene: I was. 

Kyle: You have taught CPR to sixty five thousand people?

Gene: That's correct.

Kyle: So were you completely shocked when you had signs of heart failure?

Gene: Here is the guy that is telling all of his students to make certain that when they recognize the signs of a heart attack not to deny and initially I certainly denied my shortness of breath before I sought medical attention. I had a lecture that morning that I had awakened with very short breath. I had awakened both my wife and I and I decided that taking a shower and heading in to do my lecture was the appropriate treatment modality. When I got to do my lecture one of the students noticed that I was short of breath and made mention that she would be more than happy to take me over to the clinic and I refused, said I'm fine, this is an upper respiratory infection it's not that big a deal and my secretary recognized my shortness of breath and contacted my wife. So when I got home at lunchtime my wife had that little foot tapping thing that she does when she's upset with me and said Dr. Nicholas would like to speak with you and she and handed me the phone and a friend on the phone said shortness of breath? Well yeah, Jeff this is an upper respiratory infection I'm fine he goes I'm taking you over to the urgent care center. He said I'm leaving right now. I said, you don't have to I'll drive myself to the urgent care and I did just that and after that emergency visit the doctor showed me the EKG and the chest x-ray and they flew me into a local Cleveland hospital and from there I was referred to the Cleveland Clinic.

Kyle: Dr. Starling how long have you been treating Gene?

Starling: I think ever since his first presentation. The way I met Gene was interesting, from side bar. So Gene had an appointment to see me, I had never met him, and the day of the appointment I got a phone call that he wasn't going to make it to the appointment and the reason being, literally on the way to the appointment , Gene had a stroke and wound up in our emergency room at the Cleveland Clinic.

Kyle: So not quite the way you thought you were going to meet your, your first patient? 

Starling: It was kind of a surprise landing that day and from there a lot happened meaning that, why did gene have a stroke? Well, Gene had a stroke because he had a blood clot in his heart and he had a blood clot in his heart because his heart was so large and the blood flow was so slow that a clot formed, not common, but something we see in patients with very, very weak hearts.

Kyle: So Gene was diagnosed with cardiomyopathy? Can you just explain what that is and how you ended up treating it? 

Starling: So cardiomyopathy very simply means disease of the heart muscle so the heart is a muscle with blood vessels and valves and many patients that have cardiomyopathy have an enlarged heart and a weak heart and most of the time we never can tell a patient you have a weak heart muscle because of X. In other words they haven't had a heart attack. They don't have a bad valve. We don't know why they got cardiomyopathy. Perhaps one in five patients it's inherited and we certainly look for genetic abnormalities. Some patients we think it was related to a virus but many times we can't say this is the reason. How do we treat it? It's pretty standard. Fortunately for the last 15 years we've had medications that are very, very, very effective for many patients so when I meet a patient with cardiomyopathy for the first time whether they're really sick, or not so sick we usually have good news in that we can tell them that we expect over the next six months that as many as 40 percent of patients with cardiomyopathy will improve and will stabilize and perhaps as many as 20 percent will have remarkable improvement in their heart just with standard medicines that we use. So, in fact, Gene did improve and Gene did stabilize and he continued to do most of the things he wanted to do which he can explain to you better than I but after a while we had kind of a heart-to-heart discussion no pun intended as to what the next phase of his treatment would be.

Kyle: Gene, what was your journey like from the first time you saw Dr. Starling until the heart transplant? How was that seven years or so?

Gene: The stroke that I had had when I met Dr. Starling had left me completely blind and over the course of the next 24 hours I got some of my sight back, so that was a terrifying moment when I first met Dr. Starling and he put me in a neurology department path and so they followed that up in the beginning so that they could correct that, that concern and I got some of my sight back which was wonderful because being blind was terrifying. And I was treated with medications and for a couple of years and I felt better and then a decision to, because the medications they had reached the maximum healing that they could do and the decision to put the LVAD, the left ventricular assist device, in me was made and I'd had subsequent strokes and that's was the decision to go ahead and implant the LVAD.

Kyle: Dr. Starling what is an LVAD and how does it, how does it work in a patient?

Starling: Well that means left ventricular assist device L-V-A-D. So, this is a very common tool that we use about half the patients that receive a heart transplant in the United States have an LVAD put in and basically a surgeon opens the chest, there is a small tube that goes into the lower chamber of the heart, the left ventricle, blood comes out of the heart into the LVAD which has a motor and a rotor.  It's battery operated and that can generate five to 10 liters of blood per minute and basically do the work that someone's heart would do. It's called an assist device though because it works in parallel with the patient's own heart in their chest. LVAD’s save people's lives, it enables people to improve, go home from the hospital and in many cases, like Gene’s, go out and do things, some patients go to work hunting, fishing, riding an airplane, almost everything. We sometimes chuckle that so-and-so was out on the golf course when the phone rang to come in for their heart transplant but literally LVADs can also transform lives and make people very functional again.

Kyle: Was there any point along your journey where you gave up hope? Where you didn't think that you were going to make it through? Or you didn't think a heart would become available? 

Gene: The first LVAD that was implanted, I had a significant increase in my quality of life when the decision to implant the ad came about, I was having a hard time getting up and moving into the bathroom on my own and my daughters had to help me get to the bathroom because I was so short of breath, and tired, and weak. When the decision to implant the VAD happened I was pleased with that decision and a month after the VAD implant I was working with the cardiovascular rehab gals and I felt tremendous, I was doing very quickly. Within two months of that doing 60 minutes of cardiac aerobic exercise, it was awesome. So I knew that the VAD had helped me tremendously. In September of ’15 the VAD clotted off and when that happened I immediately saw Dr. Starling and they said well, it looks like your heart has healed, that the ejection fraction the measurement that they use to make the determination how much of the pump, the blood is getting pumped out of your heart, it was significantly improved and they said we're going to keep an eye on you though because we'll see what happens and within three months my heart had failed again and the decision to put another VAD in me was made and that was installed on New Year's Eve day in 2016.

Kyle: What a way to start the New Year.

Gene: I guess you could say that, yeah. 

Kyle: Dr. Starling what was the heart-to-heart conversation that you had with Gene?

Starling: Gene has been on a very remarkable journey even as I sit here having taken care of probably thousands of patients like him, he's had a very unique journey. So the heart-to-heart discussion was when I said to Gene, who was ambulatory and not in the hospital, I said Gene I think now's the time to push the button, if you will, I'm asking you electively to meet with the surgeon and then have an LVAD put in so Gene had the unfortunate complication of blood clotting forming in the LVAD but the fortunate consequence that is heart recovered. It surprised all of us. After Gene's first LVAD and was deactivated, decommissioned as we refer to it, I told Gene I said you’re gonna get tired of seeing me but every two weeks you're coming in because we're going to watch you very closely. We're going to try to ramp up your medicines and let's see how long this recovery lasts. We were suspicious from other patients that it may have been a honeymoon that was going to be short lived and it turned out that, that unfortunately did happen and the only thing I would disagree with Gene as to what he's said so far is Gene was in extremely critical condition when he went back for his second LVAD and I don't think Gene has told you yet what happened with his second LVAD.

Kyle: What happened?

Gene: The second valve and within months of its implant clotted off and a decision to give a clot busting medication was made but warnings came loud and clear.

Starling: I discouraged it.

Gene: Yes, but the decision to give the TPA, the tissue plasminogen activator, was made and a Dr. Moazami dose was given and it fixed the clot. Unfortunately that was short lived. Two months later, the pump clotted again and the second time that it clotted Dr. Starling was a little more adamant in his disapproval of the clot busting medication and he said we're just going to keep you in the hospital and until a heart shows up and have you on a balloon pump and treat you with the medications and we'll keep you here until a heart shows up. Dr. Moazami came in and chatted with me and he said we're not getting any hearts you have to tell Dr. Starling he's got to get the TPA administered and I said Well Dr. Moazami when a heart is absolutely necessary for me it's going to be here. Well, you don't understand these clots don't just dissolve on their own, I said you don't understand how faithful I am that a heart's going to show up when I absolutely need it and he left to argue with Dr. Starling as to the appropriate treatment to do next and that night the clot dissolved on its own.

Starling: Well, doctors don't have arguments we have discussions and it's very controversial when an LVAD has clotting and the risk that a patient like Gene had to accept was probably greater than a 20 percent risk of stroke from the treatment and about a 20 percent mortality rate. So his best option clearly was to get a heart and shortly before Gene got a heart, he actually made a decision that if his heart stopped and if he needed to be resuscitated he was just going to let nature take its course and I went and Gene and I had a discussion one night in his room in the ICU which I didn't know whether I would see Gene again the next day because he had the courage to make that decision but was holding out hope that a donor heart would become available, which ultimately did.

Kyle: So, Gene, it was May 8^th, 2017 you got a call.

Gene: I did.

Kyle: What was that call like?

Gene: The transplant team member who called me, she said Gene, I think we’ve found you a heart and I said awesome, I said, do you want me to head on in right now? She says well…

Kyle: You were ready for it! 

Gene: Oh yeah and she said we have some testing and you can head on down this evening so, I got my wife to bring me down and I was taken into the intensive care unit preparing for the surgery and within a relatively short period of time they wheeled me into the operating suite and I woke up a few days later and I had a new heart ticking in my chest.

Kyle: After you woke up were you just so grateful?

Gene: Oh I, I wasn't sure absolutely sure that this was ever going to happen. I'm a large man and large me, it's rare to get a heart big enough to be able to function in the big guys so, I was very pleased that I'd gotten that call. No doubt about it. 

Kyle: So, on Thanksgiving Day you decided you were going to run a turkey trot in your hometown and so a couple of days leading up to the Turkey Trot one of our local affiliates, FOX 8, they decided to do a story on you so, they do a story on you and a certain family happened to see that story. Who is that family?

Gene: Cody Stebel’s family had a friend who had contacted them and said, I think that your son's recipient was just interviewed on FOX and they went and contacted FOX and FOX said yeah, absolutely and they gave them the connection on the Internet so that they could see the interview that Dr. Starling and I had and in that interview I mentioned that the reason that I'm still here is because their son, his heart is beating me and when they heard that, they said they thought it was an open invitation for them to come out and cheer me on, on Thanksgiving Day and that's exactly what came to be. I got to meet my donor's family on Thanksgiving morning just before the race kicked off in Aurora.

Kyle: What was that moment like? Describe when you first saw their…

Gene: Gives me goose bumps. There are a lot of tears were shed as I met the mom of, the mom of my donor. [11:45:24] I met the dad, and I met the brother, and I met the maternal grandmother, and as a matter of fact 16 of the Stebel family made it in from Norwalk to cheer me on in the race and at the end of the race the dad came over and hugged me and he whispered that's Cody's First 5K. It was a tremendous moment.

Kyle: What do you know about Cody? 

Gene: I know that he was 20 years old. I know that he was a absolutely wonderful son, drug free, alcohol free, just a wonderful young man had just gotten his driver's license just weeks before the motor vehicle accident that took his life in May. I know that he has a year old daughter that is going to be without a dad and I know that the Stebel family is one of the most caring, wonderful folks that I've ever met.

Kyle: And what does it mean for you to be on the receiving end of such a beautiful gift?

Gene: Having this, this second shot at having my life back. I, it's a gift that I'm never going to be able to repay but I'm going to do my best at making the Stebel family be honored by Cody's heart beating in my chest.

Kyle: What are some of the signs and symptoms that people should look out for who may have heart failure and ignored it like Gene did, not to put you on the spot, but what should people look out for?

Starling: Well I'm glad you mentioned that, what makes it a little bit tricky is very simple things I'll say two words fatigue and shortness of breath are probably the most common symptoms of heart failure. But also could be a common cold and the flu. So it really takes an awareness of the frontline physicians to pick things up but the patient most often is going to have very non-specific symptoms but always a reason to see your doctor to get a checkup.

Kyle: Gene waited, about eight hours or so, would you recommend people come in right away?

Starling: There's a whole spectrum, of course, from somebody that comes in by ambulance, from  somebody that's not felt well for a few weeks. So I think that that just requires some common sense and judgment but certainly anything that lingers it should be checked out and somebody that is not able to walk, they're stumbling,  they're falling down they’re extremely short of breath, that warrants a call to 9-1-1.

Kyle: And for people who were thinking about becoming an organ donor and they're not, they haven't made that decision yet, what would you say to them? How important is organ donation?

Starling: Really can't put it into words as far as how important it is, as I said to a patient about an hour ago, we can only offer transplant to about less than 2 percent of patients in the United States that could benefit from a heart transplant obtain a heart, 2 percent. And what's the main reason? Lack of donors. So, everyone that signs that form for their driver's license and makes a decision, every family, you know they're not helping one person they're helping as many as seven or eight – kidneys, liver, lungs, heart. It not only saves the life, it transforms the entire family situation.

Kyle: We want to finish up by playing a fun game with you, Gene. I want you to go fishing. We have a fish bowl here on set. So what I’m going to ask you to do, is open that fish bowl up  and go fishing for three questions. These are not hard hitting questions so, don’t get nervous so, read the question and then give us, give us your answer to it.

Gene: Alright, I've drawn what activity are you happy to be able to do again? Oh that's an easy one. I am now able to run. I was able to do the turkey trot and not that I was a long distance runner before but I wasn't even able to hurry at all and I can now walk up and down a staircase without being winded. I did the 5K which was just tremendous.

Kyle: Who are you, right? Who is this guy?

Gene: I'm very pleased with being able to move about again so, I think the activity that I'm happiest being able to do is to run.

Kyle: Alright, question two.

Gene: What inspired you throughout my journey? I'd have to say my wife was my biggest inspiration when I got down at al she was there to encourage me to keep going on and so it would have to be Dena.

Kyle: She's put up with a lot.

Gene: She has, she has. There were daily dressing changes with the LVAD and that was our quiet time. My daughters certainly didn't want to be around when dressings were being changed. So, it got to be our intimate time together, and she did, I don't know, 4000 dressing changes or something like that.

Kyle: One more question.

Gene: What song helped you through your journey? As I was writing my donor letter, I was listening to background music and when I finished the letter to my donor Whitney Houston's I Will Always Love You was playing and as a matter of fact I wrote in my letter Whitney Houston's song was playing, I Will Always Love You, does that have any meaning to you? Because it certainly does to me.

Kyle: It's beautiful. Thank you. Yeah. Well, Gene and Dr. Starling thank you so much for chatting with us today.

Gene: My pleasure.

Kyle: And thank you everybody for listening today, you can find additional podcast episodes on our web site clevelandclinic.org/podcasts, on iTunes and Google Play.