Life-Saving Options for Congestive Heart Failure Patients Webcast June 26, 2012 Georg Wieselthaler, M.D. Director & Surgical Chief, Cardiac Transplantation and Mechanical Circulatory Support, Division of Adult Cardiothoracic Surgery, UCSF Medical Center Chris Wade Please remember the opinions expressed on Patient Power are not necessarily the views of UCSF Medical Center, their staff, or Patient Power sponsors, Patient Power partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion with your own doctor, that s how you ll get care that s most appropriate for you. Chris Story One of the most serious heart health issues is congestive heart failure, but there are new devices that are helping give people a higher quality of life and the chance to live a long life--these devices coupled with transplant. We re going hear all about it next on Patient Power. Hello and welcome to Patient Power sponsored by UCSF Medical Center. I m Andrew Schorr. Well, it can happen in a number of ways, but unfortunately there are literally millions of people in the U.S., over 5 million, who develop congestive heart failure. Their heart just cannot pump efficiently. They can develop all sorts of fluid around their heart, can t walk up a flight of stairs, can t really lead a high quality of life at all. What can be done about it? Are there devices that can help their own heart pump? Where does heart transplant come in? And can the devices help a patient whose heart has been failing, maybe where they re even near death, to have more time and quality of life and get healthier if and when a donor heart can become available? Well, let s start with the story of someone who has lived that experience. That s 46-year-old Chris Wade. Chris used to have his own bakery there in Oakland in the East Bay, and he faced all this. Chris, let s go back to where all this started, where you were in 2003, just really tired, right? You couldn t go up a flight of stairs, could you? Yeah, I wasn t able to go up a flight of stairs, wasn t able to lay down flat and wasn t able to breathe. Oh, my goodness. So you finally go to the hospital, and my understanding is it turns out it was pneumonia and a virus that had eventually spread to your heart, and you had fluid around your heart. So if you were going to say on a scale of one to 10 --10 being the most amount of fluid, what did they tell you it was? 1
A 10. Oh, my goodness. So you were a sick guy, immediately in the hospital. They get the fluid out of there, and you end up on medicines. Did the medicines work for a while? Oh, yeah. I started to go on diuretics which got all the extra water off of me, and I was able to live a little bit of a better life and be able to breathe and be able to continue on with my daily activities, but just not at 100 percent, though. Right. But then there was another shoe that dropped, right? Arrhythmia. What was happening to the rhythm of your heart? I was having arrhythmia, irregular heartbeats, where it would fire maybe eight or nine beats in a row, maybe sometimes 15, so what happened was it would cause me to have a faint feeling inside of me and took all my energy away, and eventually I would be implanted with a defibrillator. Oh, my. And after a while that defibrillator was shocking you sometimes, wasn t it? Yeah. I had a few shocks here and there to shock it back into the rhythm that it was supposed to be in. Now, this is going on over a few years, six years or so, and I know with heart failure they measure your ejection fraction to calculate how well your heart is pumping. As it got to its low point what was your ejection fraction? Seven. Oh, my goodness. Is where it got down to We re talking about seven percent, I guess? 2
Seven percent. Yes. Oh, my. So you see your cardiologist and she gives you the bad news that you are in an end stage, right? Right. That was in June of 2010. Wow. So just a decline over several years. They put you in an ambulance for the critical care nurse and bring you over to UCSF Medical Center, and you re in bed there and the doctor walks in. What does she tell you? Dr. DeMarco said that I would need to get a new heart. And--if you didn t? Then as far as possible other options there were some, but besides that, you know, there was no hope. Oh, my. Now, you re a man with four kids, three daughters now in college, a son in high school. You had a lot on your mind with this happening to you. Absolutely. Absolutely. Oh, my. All right. But then they talk about one of the options, a left ventricular assist device, a device to allow your heart to gain a little strength for you to get some strength back while you re waiting for a transplant, right. They explain to you that after a while you d be in training, for you and your mother Clara as caregiver, to go home, right? That must have sounded like a reprieve, if you will. Absolutely. It was almost just a relief to know that there was something out there that could actually bring me to transplant one day hopefully and to give me the quality of life back that I was having, you know, a little bit more of a quality of life than when I was on the medications alone. So, Chris, within just a few days of being in that bed at UCSF you had this LVAD 3
implanted with the portable pump that you d carry around. How did you feel afterwards? After I got over the surgery, after about a week or so, I started to feel a lot better, 100 percent better, actually. Wow. I was able to breathe. I was able to walk. It gave me the hope, you know, and it gave me the confidence to be able to every day feel better and better and better and know that this was going to be the answer to me, hopefully making it one day to transplant. Right. And so you did have a decent quality of life, right? I mean, you had your son, I understand you were walking three miles a day with this portable pump. You were playing basketball with your son, Adam, pitching and doing batting practice. So, I mean, you were living. Absolutely. It impacted my quality of life. It gave me the gift of time, time to share with my son, my kids, and most of all being able to watch my four children grow and to actually be a little more active in their lives, you know, do activities with them and to be a father. Yeah, what a blessing. Now, one more key part of the story is the phone rings, 7 p.m. April of 2012, and they say, Chris, come over to UCSF. We have a donor heart for you. Quite a big day for you. Oh, yeah. Very emotional at first. Finally, when I got myself together and started over, I can t really even explain in words how it felt. Wow. So you had the transplant the next morning. We re going to meet your transplant surgeon in just a second. But here we are months later. The defibrillator came out. The LVAD came out. The transplant went in. How do you feel today? I feel great. I got used to the medications now, and I m back to where I was when I was 20 years old. 4
Wow. That s incredible. I walk a mile and a half a day. I am able to be a father again and to do everything I was before I came down with the cardiomyopathy, and it s just a 100 percent turnaround. It s amazing. Do you feel you re living the miracle of modern medicine? Absolutely. LVAD Pump Well, we re going to hear more from you in a second, but let s meet the man who helped with your heart transplant, really led the team, Dr. Georg Wieselthaler. Dr. Wieselthaler is the director and surgical chief for cardiac transplantation and mechanical circulatory support at the UCSF Heart and Vascular Center. And when we talk about mechanical circulatory support we re talking about that LVAD pump, right, doctor? And these have been perfected to a great degree. I know research goes on, but these have been miracle devices, haven t they? Yes. Actually, they give us the opportunity nowadays to salvage patients who are in urgent need for a support of their failing heart at the time we do not have an organ available for the patient. It gives us the opportunity to bridge the time period, you know, to the necessary transplantation. And in Chris s case, I mean, he was near death. So there was no heart for him, and we have a shortage of donor organs anyway, but there was no heart at that time and he really wouldn t have been able to survive without a device like this. That is absolutely correct. At the time Chris Wade received his pump he was in an urgent need of support of his circulatory system due to the fact, you know, that he was in what we call terminal end-stage heart failure. That means there is no reversible action at this point and patient is more or less terminally ill. Now, the second part of it is that not only did he get a pump but he got a pump that was portable that he and his mom, Clara, as caregiver were educated on so that he can look forward to playing basketball with his kid or pitching batting practice. I mean, people can have a pretty good quality of life while they re on that list hoping, hoping for a transplanted heart. That s quite something. 5
Yeah. Well, actually we are happy that we were able to make developments over the last two to three decades with these mechanical circulatory support systems. About some 40 years ago when they started to develop these systems people actually were bedridden. They were not allowed to get out of the bed. They were not allowed to leave the hospital. Nowadays with the devices we have at hand, patients, you know, can nearly live a normal life. They have really few restrictions in a way that they cannot go for a swim at this time and have restrictions in a way that they have to reload the batteries, that run these systems. But otherwise they are completely back to normal. They can nearly go back to a normal life, can go back to work, can also live a normal social life with their families, and with their caregivers. And I think that s a big advancement, you know, in this field. Right. So just to be clear, and you re a heart surgeon, so it s a surgery to implant the pump, implant the device. There s part of it that s portable that they take with them, so that s surgery number one. Right. And then when there is a heart available, and hopefully there will be a match, then your part of the surgery is first take out the ventricular assist device, or the mechanical device, and then you re implanting the heart. So it s sort of a two-step process, right? That is absolutely correct, although the two steps are combined with each other. Right. You cannot take out the pump first and leave the heart in and then take the heart out. You just do it in a combined procedure. This is quite normal. I think it s important to say that the pump is placed inside the body so you don t see it from the outside. There is a tiny cable that leaves the body in the upper abdominal region and it s connected to the control unit, which is the size of a little bag, which is connected to the batteries. So the pump sits inside the body. You cannot see it, you cannot hear it, and it s just the control unit, the tiny and small control unit that sits outside the body that actually runs the pump. Wow. Chris, so you got used to all that. I mean, you were able to just deal with that in your daily life. 6
Oh, yeah. It was easy to get used to once, you know, it became second nature. Cardiac Transplantation So, Doctor, let me ask you about this. So we have this mechanical advance that fits into people s chest (and in their lives for Chris so he could go about being a father and live his life while he s waiting). But then there s a question of transplant. Now, that s been around for years. We ve come a long way there, too, as far as the life expectancy and the quality of life someone like Chris could have post-transplant. Tell us about where we are now. Well, actually, patients who undergo cardiac transplantation nowadays have an extraordinary good life expectancy. We talk about the range of 10, 15, 20, 25 years, you know. These patients can definitely have excellent quality of life during this life span. There are a few restrictions they need to take their medicine on a regular basis. And this medicine, more or less they have to take it lifelong because it s the medicine that prevents patients from having a rejection of the transplanted organ. But nevertheless besides that they have excellent quality of life. And due to the fact that there s new methods, the development in order to produce some kind of tolerance, as we would call it, from the human body to the transplanted organ, there is a good chance that maybe in five or even 10 years, we can completely abolish all the kind of medications, you know. And this would mean that all the side effects any medication can have can be also diminished. Doctor, so the listeners to our program may be people who are where Chris was, or a family member, you know, lying in bed, told they have end-stage disease. Hopefully there will be a transplant but maybe these pumps can help, and people are learning about them. Would you say that there s a great deal of hope for these patients now with the technology and of course the skill that your team has as well? Absolutely. I think we have developed methods and also have the kind of technology at hand that definitely can salvage patients with this end-stage disease. But I think it s more important, not only to go for prevention of any of these diseases but whenever you come close to the final stage, that you are not able to walk anymore, you have to be bedridden although you cannot lie flat due to the congestion, I think you have to see your doctor, you have to see a specialist that can actually transfer you to a specialized center, where they have the kind of technologies like this at hand. 7
Right, absolutely. And, Chris, I bet you just thank your lucky stars every day that you got to a center, in this case UCSF. They saved your life, didn t they? Oh, absolutely. It s a miracle. Closing Thoughts What would you say then to someone listening who is really, they are just depressed and think life may be over, whether they re a younger man as you ve been or they re an older person. What hope would you give them? I would tell them that if they are given the opportunity to get an LVAD it would give you the quality of life that you could never imagine, back to where you were before you had congestive heart failure. I think that without my LVAD I would not be at transplant today, and I would say that you would be able to do things beyond your imagination. It s just a miracle. Hmm. Wow. Okay. Doctor, it must make you feel great, first of all to have Chris on this program with us and to hear how positive he is. Yeah, you know, we are always grateful to have patients like Chris because these patients really deserve it. They have gone through such a bad period of their life. They had a lot of restrictions also on different levels, personal level, professional level, you know, I think these patients really do fine afterwards, and they definitely deserve it. And it s no matter of age, you know. It s not only that younger patients deserve it. I think if we are able to help older patients, and this is to me over the age of 70, 75, even 80. If a patient is in good shape and it is only the failing heart, I think, we can fix that, and we can give them back good quality of life. Wow. Dr. Georg Wieselthaler, thank you so much for all you do with the cardiac transplantation team and also the Mechanical Circulatory Support program at UCSF. Thank you for all you do, doctor, and your continued work on the improvement of these devices and the surgical techniques so people can live a long, high quality of life. Thank you, sir. You re welcome. And, Chris, all we can say to you is I hope you dance at weddings of your daughters 8
and your son and you just have a full life and keep baking. I ll have to connect with you and get one of those delicious things you bake, okay? Yeah. Thank you very much. All right, Chris. Thank you very much. Well, this is what we do on Patient Power is really connect you with inspiring people like Chris Wade and the devoted doctors who have helped them, and the technology and skill have come together, and, let s face it, an organ donor, to really have Chris be with us and leading a full life. Thank you for joining us. I m Andrew Schorr. Remember, knowledge can be the best medicine of all. Please remember the opinions expressed on Patient Power are not necessarily the views of UCSF Medical Center, their staff, or Patient Power sponsors, Patient Power partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion with your own doctor, that s how you ll get care that s most appropriate for you. 9