Hear a Patient Power interview with Dr. Lorriana Leard, a pulmonologist, and patient Jerry MacKay, who underwent a lung transplant at age 72 at UCSF Medical Center.
Lung transplants are the most advanced treatment for patients with severe diseases of the lung and usually a last resort treatment option, but it can be a good option. Coming up, a leading pulmonologist and a transplant recipient will discuss the procedure and recovery. It's all next on Patient Power.
Hello and welcome to Patient Power sponsored by UCSF Medical Center. I'm Andrew Schorr. We always introduce you to leading experts from UCSF and inspiring patients. Let's talk about a really serious situation when your lungs are affected by disease. There are a variety of them, and it's getting tough to breathe. You may be on oxygen. There are different treatment options along the way, but since 1991 at UCSF, they are doing lung transplants, and they're perfecting it. It's giving life back to people who undergo that procedure.
I want you to meet someone who has benefitted from that, and that is 74-year-old Jerry MacKay. Jerry lives in San Carlos, just south of San Francisco. He's a retired Navy pilot and rear admiral. Going back about 20 years ago or so, Jerry, you were having a dry cough. What did people think that constant cough was?
Well, I went to multiple doctors including my general practitioner and tried all sorts of cough drops and other things, and it was a dry cough, nonproductive. Everybody blamed it on everything from allergies to the heat in my house was too dry to whatever, whatever, but it didn't go away, and it continued to get worse until about 2001, 2002.
At that point, I know you were helping run an electronics company in the Bay Area. I understand it got difficult to just get through a sentence, run a meeting.
That's correct. I was the president of the company, and I would have staff meetings. It got to the point that my staff would bring in lozenges and candies and things for me to suck on to try and get through a sentence. It was very difficult and I knew I couldn't continue in that job for too much longer.
So in 2002 you finally have a biopsy in your lungs and it shows you have an illness, idiopathic pulmonary fibrosis, a scarring that was progressive in your lungs. Breathing was getting more difficult, and you've said, I need to look into going into a support group. You learned that maybe an option could be lung transplant. You decided you were going to seek out whether that was an option for you, correct?
I did, and I collected all my records and all of my blood tests and all my PFTs, pulmonary function tests, and sent them out to about five different institutions, Stanford, UCLA, UCSF, Chicago, Mayo Clinic in Jacksonville. I even considered going to Thailand.
I think most places would say, well, you should be no older than 65. You were 72, getting to be that, even though you were in good shape throughout your whole life. So you connect with UCSF and they have a conversation with you. In the meantime, you were, I think, even with your breathing difficulty going to the gym most every day?
I went to the gym even when I was forced onto oxygen. I exercised at least five days a week at a gym, primarily treadmill, lifting weights and some upper body machines.
Now, you had the transplant. You were on the list for many months, right?
Eight and a half months.
And on oxygen, and there were some, I don't want to say false alarms, but dry runs where you were called potentially to have the transplant. For whatever reason, it didn't happen. Finally in mid-December 2008, you have the transplant. One lung transplant, 10-hour surgery. Obviously, there's a recovery, and we'll talk about that. How are you doing today? Did this in effect, Jerry, give you your life back?
Absolutely. No question about it. The term I use, I'm in great shape for the shape I'm in. I don't move around as fast as I did before. I get a little more winded. I'm not sure that that's not because I'm 74 years old.
But no oxygen, right?
No oxygen. I walked out of the hospital after the operation in 2008, day after Christmas, without oxygen and I've never used any since.
All right. Let's introduce our UCSF Medical expert. She's a pulmonologist on the whole transplant team there at the UCSF Medical Center, and that's Dr. Lorriana Leard. Dr. Leard, first of all, you hear Jerry's story, you've given somebody their life back, not just you but the whole team there, and I know it's quite a large comprehensive team, and it must make you feel great.
Oh, it's a really rewarding profession to be in.
Dr. Leard, Jerry just said IPF. What does that mean?
IPF, or idiopathic pulmonary fibrosis, is a type of scarring of the lung that really we do not have any treatment for it. The diseases that we consider for patients to undergo lung transplantation, they're all diseases where they're advanced diseases and we usually don't have any additional medical treatment or any other type of treatment for these patients. People can be in a pretty hopeless state and the options can often be worse than cancer in that there's really no chance of cure. Lung transplantation may be their only option.
And this is one of the illnesses that you do transplant for.
We consider lung transplantation for many illnesses, some like emphysema that people have heard of; others things like cystic fibrosis, which more people have heard of; and then other interstitial lung diseases such as IPF, idiopathic pulmonary fibrosis; and other diseases that people may have not heard of, something like lymphangioleiomyomatosis, as well as pulmonary hypertension. Sometimes we do heart-lung transplantations for diseases that have affected both the heart and the lungs.
Now, we talk about lung transplant, and I said you've been doing it just since 1991, and you've been learning along the way. Jerry was in his 70s. UCSF has a way of looking at it — somebody is fit, a former Navy pilot, still going to the gym, even with oxygen. His physiological age was younger and could fit the criteria, right?
We really believe that one of the best predictors of outcome is the condition somebody is in physically, in terms of rehabilitation is what we call it. Being able to go to the gym, being able to exercise not only has benefit for the lungs in terms of current quality of life, but outcome after lung transplantation really depends on how physically fit people can remain despite the fact that they're on oxygen and feel like they're barely able to walk.
We look at the entire patient, not just any one particular part. Not just an age is going to make somebody not a candidate. So physiologic age, whether other medical problems are taken into account, but how well physically fit they really still are despite, regardless of age.
Let's understand who's on the team. So you're sort of one of the quarterbacks as a pulmonologist and evaluating someone before and after surgery. Obviously, there's a thoracic surgery team. There are specialized nurses, but there are also social workers. Help us understand kind of the full package, if you will.
Usually, they either refer themselves or are often referred by physicians in the community to come to see us. We like to have all their records in advance so we can kind of look them over. The first visit, the first stop per se, is usually one of us pulmonologists, and we do a complete medical evaluation, look at what other underlying medical conditions a patient may have, what medications they're on, and really the medical details of their current condition to determine if this is an advanced lung disease that would benefit from lung transplantation or to see if we would prefer other medical therapy, if that's possible.
This is something that we'd select for patients who have no other options. This is something that now has become an option for them. So from a medical standpoint it's the pulmonologists who evaluate the medical diseases and to determine if there are any problems.
Their next visit usually is with one of our social workers who performs more of a psychosocial evaluation. Undergoing a lung transplantation is a very major step in one's life to undergo. It's more than just surgery. It's changing your whole lifestyle in a lot of ways. Once you undergo a lung transplantation you need to make sure you're not around people who are sick as much as possible. You take a whole new set of medications that you need to take for the rest of your life, and it requires both mental fortitude, mental capacity. You need to be in the right mental frame with the right amount of support to be able to do it. You also need support from your family and friends. We really rely on our social workers as part of the team to do the evaluation.
When we've done that, we have wonderful pretransplant nursing coordinators who help coordinate all the records, help us with all of the testing that a patient needs to undergo. To really be completely evaluated, there's a big long list of tests that need to be done, tests to make sure that they're in perfect shape for a transplant. Our nursing coordinators help with the education of the patient and their families about the processes of undergoing evaluation and the process of listing.
Once it seems like the patient has all of this evaluation, they meet the surgeon who will evaluate and make sure there's no surgical reason that the patient is not a candidate, something technically that would make a patient not a great candidate for a surgery.
Along the way, if there are other things discovered, other specialists may get involved. We strongly encourage all of our patients to participate in pulmonary rehabilitation. If they're in the hospital, we have a physical therapist who works with them. But it really is a team effort. We have the financial endeavor as well. There are financial counselors that are part of our team.
It's a major undertaking. Jerry, so how did this process work for you? Do you feel it was handled well?
Oh, absolutely. There are two coordinators, pretransplant coordinator, the lady's name in my case was Carrie, and she walks you through absolutely every test so you know what is going on. And the doctor just mentioned multiple tests. They check absolutely everything to make sure that you don't get a lung and you have a cancer starting or something like that. They check your dental records. They absolutely check everything, and the pretransplant coordinator takes that until the day of the transplant and then a posttransplant coordinator takes it, and she from that day walks you through until you're out of the hospital.
Now, Jerry, we mentioned medicines, antirejection medicines and others. You take a whole bunch of pills every morning, right?
I take about 17 pills, 16 or 17 every morning, and that changes slightly. I go in for a test once a month and they read my blood and they'll say, okay, go up a little bit on this or down a little bit on that, so they monitor you very, very closely. I take about 13 pills in the evening, and I take about four pills midday.
Now, Jerry, for years you were flying on and off aircraft carriers which takes a lot of precision. You're someone who going by the numbers is a little easier. But with the support programs, and I know there's been a support group at UCSF for many years that has helped you and you're helping others. Can people be helped through this even if they were never a Navy pilot?
Absolutely. And let me correct the record. I was a patrol plane antisubmarine warfare pilot most of my life, although I have landed on a carrier.
Well, any of that pilot stuff I'm sure requires precision.
They walk you through it. All you have to be able to do is keep records and your spouse or whoever is going to be your support network has to be there to help you through it at least for the first number of weeks. After that, it's just follow the directions.
The support group, it was really a help to you, wasn't it?
Absolutely. I have to tell you, I was scared to death, particularly because of the three dry runs. You don't know what's coming and then there's the disappointment of going home. This lung isn't good for you. What convinced me to do it is I went to a support network which was made up of people who had been transplanted, and people who were trying to decide whether to get on the list and trying to get a transplant.
They convinced me when I sat in this room and looked across and saw a person not quite my age who has had a double lung transplant. Somebody else has had a single. Somebody else has had a heart and double lung. It convinced me clearly that there is life after IPF.
You're an example of that. Now, Dr. Leard, none of this could happen without donors, and I know with my driver's license I said I'll be a donor. You must have great gratitude and hope of course that for people like Jerry, there will be lungs available.
That's absolutely true. Without the generosity of people in our community and their family members, many of our patients wouldn't be alive today. Without the generosity of people who give life essentially to other people who otherwise have no other treatment options, we wouldn't be able to provide the services that we provide.
Let me interrupt if I might, from my standpoint, if we don't have organs, people aren't going to be transplanted and a lot more people are going to die. I can't thank my donor enough.
Well, you don't know who it is, whoever out there helped, and the family. You're very grateful.
Now, Dr. Leard, this is a fairly new field in transplant. Kidneys have been transplanted and hearts transplanted for a long time. Is it evolving and evolving at UCSF?
It is definitely an evolving field. It's an exciting time to be involved in this growing field where we're learning more and more about it. There's still a lot of research that needs to go on to better understand the types of problems that we encounter with transplantation, but it's a growing field. We are providing lung transplantation to patients who are now older. A lot of research has gone into looking at donors and donor availability.
Especially here at UCSF, there was a lot of time spent looking into who could potentially be a donor. It used to be that once a donor was older, the lungs wouldn't be good lungs to transplant. A lot of work went in to study them very closely and found that just because a lung is older doesn't mean that it's not a good potential donor lung.
You can help even a patient who is waiting for a transplant where they're so sick that they are on a ventilator waiting?
Well, I would like to mention that the way we list patients for a lung transplantation has changed over the years. We now give patients scores. The sicker a patient is often the higher the score or the higher the likelihood that we'll find a donor that will match. They're higher up on the wait list.
We at UCSF have found that it's okay to have people who are very sick, even patients who are on ventilators that can be listed as candidates for transplantation. That's even expanding to an additional forum. In addition to mechanical ventilation supporting somebody on a ventilator, we now are able to support people on an entire circuit that's called extracorporeal membrane oxygenation or extracorporeal life support.
That allows us to keep people alive to support both their heart and lungs, and people have been able to get a transplant from this type of support.
I guess the bottom line is, and we may have families listening who are pretty desperate, is they should check with the UCSF Lung Transplant Pogram or their doctor to see if they qualify somewhere. With the research that you've done, there might be hope.
Yes, our team is interested in hearing from patients, even patients who are hospitalized who think they have no other options. We're willing to consider those patients, often transfer them here for consideration, with advanced supportive care if necessary to support them up to and through a transplant.
Okay. Well, I want to congratulate you on the work you do.
Jerry, is there anything you want to say publicly to a representative of the transplant team that, as you say, gave you your life back?
How much time do we have? If I were to talk to somebody today, I would say look for absolutely every opportunity. There is life after IPF. There is life after a transplant. I would underline for people that they have to advocate for themselves. Don't take no for an answer. Look for alternatives, look for other places. You have to be the cheerleader for your own transplant. You have to get behind it.
Pulmonary rehab, the doctor mentioned it. It's absolutely essential before you go through the transplant and it's equally essential afterwards. Teaches you how to breathe, teaches you how to use your new lung, etc., etc.
I joke that I went into training for a transplant. I really did. I spent almost a year in the gym doing as much as I possibly could.
I was on the treadmill the day I was transplanted. Ten liters of oxygen, but I was on it. I came home from the gym that morning and got a call about ten o'clock.
And you continue to go to the gym now, but no oxygen.
That's exactly right. The day I left the hospital the surgeon came up to me and I had oxygen on. In the strongest of terms he said, get that out of your nose, and I never want to see you on oxygen again, and I haven't been on.
What a great story. Wouldn't you agree, Dr. Leard?
I want to thank you both for visiting with us and giving hope to people with serious lung conditions and help them consider whether lung transplant may be an option for them and an achievable one today. Dr. Lorriana Leard, pulmonologist at UCSF, thanks for being with us on Patient Power.
And, Jerry MacKay, you're my new best friend. I just admire you so much. Thank you so much for being with us and giving inspiration to so many of our listeners.
Well, I thank you and the medical staff.
I'm Andrew Schorr. Thank you for listening to Patient Power sponsored by UCSF Medical Center. 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, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
Recorded June 2010
Reviewed by health care specialists at UCSF Medical Center.
This information is for educational purposes only and is not intended to replace the advice of your doctor or health care provider. We encourage you to discuss with your doctor any questions or concerns you may have.
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