Grandmother Breathing Easy after Innovative Lung Procedure

Podcast Transcript

Kyle: Welcome to The Comeback. I'm your host Kyle Michael Miller. During this episode we're talking with Peggy Notman who's now breathing easy thanks to a new therapy to treat a rare lung condition. Peggy's Cleveland Clinic pulmonologist Dr. Gustavo Heresi will join us as well. But first, here's Peggy in her own words.

Peggy: My name is Peggy Notman. I'm 68 years old and I'm from Davie, Florida. I was diagnosed with PH after I had a double hip replacement and I was referred to a doctor met at Cleveland Clinic in Weston, Florida who diagnosed not only the PH but also CTEPH, which is blood clots in the lungs. Therapy for me was three kinds of medication. After a while I was told that there is a procedure now being done in Cleveland Clinic in Ohio and he wanted me to go there. I’ve had 8 procedures so far, another one coming, and now I can breathe room air, I only need oxygen at night, and I also can now play with my grandson and it's wonderful and I am now free.

Kyle: Peggy, Dr. Heresi, thank you so much for being here today.

Peggy: It's my pleasure.

Dr. Heresi: Thank you for having us.

Kyle: Peggy your comeback story started about five years ago. You went through a double hip replacement surgery, which I'm sure was not easy, and shortly after that you had blood clots in your lungs. Tell us about what life was like during that time.

Peggy: Well, only one clot was detected at first and was put on blood thinners and watched, but nothing really was done for anything else. No testing other than a CAT scan which showed the blood clot but after the hip replacement I noticed that I was very short of breath especially when I went back to work. I'd be completely out of breath just running for the telephone. I worked as a paralegal in a family law firm in western Florida and everybody was asking why you so had a breath. By time I pick up the telephone, somebody whether it be a judge or a judicial assistant would say sit down. Why are you so out of breath? And I didn't know. And this persisted for a year and because they said the blood clot had dissolved. But my breathing wasn't right.

Kyle: You knew something wasn't right?

Peggy: I knew. Yes. And the pulmonologist that I was seeing before I got involved with Cleveland Clinic wasn't sure. So he sent me to a cardiologist the cardiologist took the right heart cath that is required to detect and diagnose PH, pulmonary hypertension, and it came out that I did have pulmonary hypertension, PH, but nothing was said about blood clots.

Kyle: How did PH impact your life?

Peggy: Terribly, it impacted me both at home and in my career. I had to eventually start working only part time. I was very lucky the attorneys that I was working for at that time for 12 years went along for like two years for me working part time. I couldn't really go out shopping, I couldn't join friends, and I when I did go grocery shopping, I passed out. I couldn't get the groceries out of the car, into the house, and it was getting steadily and steadily worse.

Kyle: Did you ever fear that you may have to live your life that way?

Peggy: Yes, very much so. I was really concerned about that. And during that time my son and daughter-in-law announced they were expecting their first child. And that's when I realized I have got to do something. I cannot go on like this. I want to see my grandson and any other grandchildren that come along.

Kyle: So, you were treated at Cleveland Clinic in Florida and eventually you came up here to main campus in Cleveland and you met this guy right here. Great doctor, Dr. Heresi. Can you tell us a little bit about what pulmonary hypertension is, and what the impact is on a patient who has it?

Dr. Heresi: Pulmonary hypertension, or PH, simply means high blood pressure in the lungs. But as opposed to high blood pressure that's detected in people's arms, which is the most common form of hypertension. High blood pressure in the lungs usually has a reason behind it. So, pulmonary hypertension in and of itself is not a disease, it's just a term that says you have high blood pressure in your lungs. The next step is to find out why. And, I think, to Peggy’s point she was told she had pulmonary hypertension but she wasn't told why you may have it, right? Because there are many reasons why you may have high blood pressure in the lungs and the treatments will be very different according to the reasons behind it.

One of the major reasons that you may have high blood pressure in the lungs is blood clots. I'm sure we will talk more about that but there are other reasons as well. You can have other lung problems such as emphysema, sleep apnea those commonly lead to pulmonary hypertension. There are people who have problems with the heart itself, leaky valves, weak left hearts that can lead to hypertension, that are more rare conditions that are associated with it. And then there's a large group of people that may have pulmonary hypertension with no good reason and that's something that we call idiopathic or formerly known as primary pulmonary hypertension. And so the treatments for all of these different types are very different.

Kyle: So, what kind of PH does Peggy have?

Dr. Heresi: So, Peggy has what we call chronic thromboembolic pulmonary hypertension  which means high blood pressure in the lungs due to blood clots that have been there for a long time. So when somebody develops a blood clot like Peggy did around the time, or after, the hip operation luckily with our own sort of mechanism and with the help of blood thinners most people are able to clear those blood clots. However in a small minority and that usually is around 2 to 3 percent of the time this blood clots don't go away. They remain stuck inside people's lungs and they become like scars, like scar tissue inside.

Kyle: I know there's a standard of treatment for treating PH but around 30 to 40 percent of patients aren't candidates for that type of treatment. How did you treat Peggy's case because she was one of those patients who you couldn't do surgery for?

Dr. Heresi: Correct. And that's a very important point. So once you reach the conclusion that pulmonary hypertension is due to blood clots. The first question that you need to answer is can we remove those clots with an operation called pulmonary thrombectomy or also so-called Pulmonary endarterectomy direct to me this is a big operation. It's done through what we call me the  median sternotomy, which is basically cracking the breast bone open and then cutting up the pulmonary arteries and just removing all those scarred clots and that is the first question that you have to answer because there remains the treatment of choice and, when appropriate, is actually curative to a large majority of patients. However there is also a large proportion of patients and roughly when you look at centers across the world this is around at least one third of cases with CTEPH where you cannot do this operation and there may be various reasons behind that. And until recently actually there were no other therapies. And so we now live in an exciting era of CTEPH because there's a lot of things that we can do. One thing that you can do is medication but the other important procedure that we're doing now, and this is how we treated Peggy, is this procedure called Balloon Pulmonary Angioplasty, or BPA.

Kyle: Peggy did you know anything about this treatment before you came here?

Peggy: Before I came here, yes. The only thing I knew was the doctor that I was seeing in western Florida at Cleveland Clinic Dr. Jinesh Mehta. He knew about the procedure and at one of my support group meetings he came and he spoke to the group. Then he pulled me aside and he said there's a brand new procedure and I want to send all of your records to Dr. Heresi up in Ohio. I said Okay. And I heard from Dr. Heresi and I spoke to him in length and he told me about the whole procedure and I said yes I be definitely willing to do that. What did I have to lose? You know I gained everything. I gained a life. So I went along with whatever they wanted me to do. Came up here to Cleveland, lived up here essentially for four and a half months because I couldn't fly. I can fly now. And it really is opened up, again, the world to me. So I came up here and I started having the procedures in January.

Kyle:  Dr. Heresi, Can you walk us through the procedures? How does it work? 

Dr. Heresi: Yes, so many angioplasty as opposed to surgery it's just a different way of dealing with the mechanical problem of the disease. So think about it, it is like a highway that is occupied by a huge traffic jam. And surgery would be equivalent to coming in with a huge you know mechanical instrument and just getting all those cars out of the way out of the highway, okay? You dump them in the ocean. That's what surgery does. Balloon pulmonary angioplasty doesn't do that but it pushes the cars away into the emergency lanes. Either way you would just restart the traffic in the highway. So make sense? So that's kind of what balloon angioplasty does.  Surgery cuts the pulmonary arteries, pulls those clots out. Balloon Pulmonary Angioplasty we go usually through the groin, into one of veins there, usually with a needle first and then we thread some catheters into the artery. Through those catheters we thread instruments, wires and other instruments, and then we engage the clots, then we thread a catheter with a balloon and the balloon is inflated inside the pulmonary artery right where those clots are. By inflating the balloon, you, again, push those clots out of the way and then you'll restore blood flow.

Kyle: You make it sound so easy.

Dr. Heresi: Well, that's how the procedure gets done. And, again, the credit here goes to Dr. Ihab Haddadin, who's the interventional radiologist who does this procedure. But again the key here is to identify who is best treated by these different techniques, right? So, in Peggy’s case specifically the reason why Balloon Pulmonary Angioplasty was chosen over surgery was because the clots were located in really small arteries in these sort of outskirts of the lungs. They are really beyond the reach of the surgical instruments and also, as Peggy was saying for example, she was not allowed to fly. And the reason was that her pulmonary pressures were sky high. And so the combination of really smaller or smallish clots located in the periphery of the lungs in a really tiny arteries. And the severely elevated pulmonary pressures made Peggy not a good candidate for surgery and so Balloon Pulmonary Angioplasty when done appropriately in the right situation can be can be highly effective.

Kyle: Peggy, I know the first time after the procedure was done you didn't notice any change but you didn't lose hope. How come?

Peggy: Well, like I said, I wanted to have a life and live long enough for my grandchildren to know me not just by pictures, really know me. And Doctor Haddadin would call constantly, do we feel anything? Do you feel anything? And I'm not a liar. I'm a very honest person. And I said I'd like to tell you yes but I don't. So I said please, please do not give up on me. And he answered back, don't worry I am not giving up on you. Let's keep going forward. And by the second procedure, not only did it open up the first one that did not remain open, he went further and opened more and I felt a difference immediately. It was life changing. I wasn't huffing and puffing. People would hear me coming down the corridor of a hallway because I'm huffing and puffing even on oxygen. So I felt the difference. I went for walks on oxygen like I was told. Went for walks and as I saw that I was walking past the house that I couldn't even walk towards, I went past that house and I went past another house and I went past five houses and then walked back and I didn't feel like I had to lay down and immediately take a nap. It was just unbelievable.

Kyle: I mean, you have your life back.

Peggy: Yes. And the funny thing is Dr. Haddadin said, I know what I am going to accomplish but what do you want me to accomplish for you? And I said I wanted to be able to walk around a shopping center. So he looked my husband said she likes to shop? No, I said I want to be able to walk around a shopping center. I hadn't been able to do that and I've been afraid to do that because I passed out in the shopping center. So I wanted to be able to do it again and not pass out and I'm doing it.

Kyle: What's something that you that you couldn't do before that you love to do now?

Peggy: Oh wow. Go to a gathering of friends and actually get to the end. Before I would always have to leave maybe half-an-hour to an hour in, and my husband and I just went to a party Saturday night and I stay the entire time and everybody made note that that. Oh my God you're still here. Yes, I can go to places now and I don't feel I'm overextending myself where I'm on oxygen at all times. I'm not. I only am on oxygen when I go to sleep because that's what I'm required to do, and if I'm very, very active. I always have it with me because I practice promised Dr. Mehta that I would always have oxygen with me, just in case, but I don't always use it.

Kyle: Doctor, is this a typical outcome for patients who have BPA?

Dr. Heresi: Yeah, I mean, we are seeing really good results with BPA. Of course it is impossible to say that everybody gets the same great results and, you know, we are still a bit early on the sort of learning curve of balloon pulmonary angioplasty. This procedure really started being done sort of on a routine basis here in the Cleveland Clinic in early 2016. So, it's a fairly recent procedure in the U.S., I think people started doing it pretty late 2015. And so I think we're still learning a lot about who are good candidates. How many patients really respond. But in general we have been really encouraged. Peggy certainly has had a tremendous response and we have many other people who have that occasionally. We do the exact same procedure and we would go through the same process and sometimes the results are not that great. So I think we're still learning a lot of factors that may determine that. One key thing to consider, of course, and that’s been alluded to and this is a testament to Peggy's resilience. Actually one key difference between balloon pulmonary angioplasty and surgery is that balloon pulmonary angioplasty requires many sessions. And I think Peggy is going for the world record.

Peggy: But, it's working.

Dr. Heresi: Surgery is one time and done. It's a big operation obviously and there's a significant amount of downtime afterwards but it's one procedure and one time, balloon angioplasty requires several sessions because you really cannot treat with this balloon, all the areas of the lungs that require a treatment. And so people on average if you look at you know sort of our series and others four to five procedures but Peggy has required more and you have more coming in actually. And the reason for that is that, and it is one of the things that our team discusses frequently amongst ourselves, and with our patients, what is the endpoint? What are we trying to accomplish? And certainly we would like to get people back to their lives, enjoy what they want to do. You know, Peggy's grandchildren etc. etc. but also from our perspective sort of the technical policies, we want to normalize the pressures, we want a normalize function of the right side of the heart and to accomplish that, the many sessions, many procedures are required.

Kyle: You also must like us here, right? You keep coming back.

Peggy: I don’t like the weather, but I like you guys.

Kyle: Peggy, we're going to play a quick game called ‘Go Fish’. I'm sure you've played it before, maybe your grandson is probably too young to have played.

Peggy: 13 months, no I don't think so.

Kyle: So we have a fishbowl here in studio. Go ahead and take the lid off and you can pull out one question at a time. Read it to us and then give us your answer. And the fish don't bite. So don't worry about that.

Peggy: What was worse the weather in Cleveland in January or the procedure? Absolutely the weather.

Kyle: You're from Florida.

Peggy: I was raised in Florida. I don't know any weather but Florida. And it was it was brutal. There were times I wouldn't leave the house except if I was going to see Dr. Haddadin or Dr. Heresi. I wouldn't leave but the procedures, are rather, they keep you comfortable. They explain everything that they're going to do, even when they're going to start numbing the area. Unfortunately I wasn't able to be put under because the pressures were too high. It was too much of a risk to put me under. So, I was awake, felt nothing. Even when he would say are you going to feel a little pressure. I really felt nothing. And the people in the in the surgical suite when you're having it keep you comfortable, if you need more oxygen, they'll up the oxygen, if you need a little more sedation, they will give you a little more sedation. They go by what you need. So yes it was the Weather in January.

Kyle: Yeah it’s the worst.

Peggy: Next one?

Kyle: Yeah go for it.

Dr. Heresi: This is fun.

Peggy: Where are your questions?

Peggy: What's the best part of being healthy again? Wow. Well, I used to work eight to 10 hours a day as a paralegal in doing, working in family law, which I loved doing, and I had to unfortunately retire early. I planned to work until I was 70, my bosses knew that, it was a husband and wife team. I had to stop working. I had to retire. Now that I'm feeling as well as I am, I also used to teach an adult education class which is solid talking for two hours. I had to stop doing that. I'm now considering going back if there’s still students that want to learn paralegal studies and how to be a legal assistant and work with the court system. I'm considering going back to that.

Kyle: Good for you.

Peggy: Oh, one more.

Kyle: Why do you keep going fishing? Pull another one out.

Peggy: What advice do you have for others? Well, very simple. If you're having difficulty breathing go to PH specialist. Don't tell take your regular doctor's word for it that you have asthma, you have COPD, you have anything else that affects the lungs. Get it checked out. Because being short of breath is not normal. And passing out is not normal. I mean, I didn't know what, I never passed out before in my life and here I had three episodes where I passed out or I was about to but pumped up the oxygen or whatever I had to do. Get it checked out, get the right heart cath, get the VQ scan that will show the blood clots, the right heart cath will show the PH and get on treatment immediately. And if you do have CTEPH, I can't pronounce it so I will call it CTEPH, and you're not a candidate for the surgery. Like I wasn't I a candidate either for lung transplants so, come to Cleveland Clinic, get this surgery. It's a miracle. It really truly is a miracle and that's what my friends have been calling me miracle woman. I call Dr. Heresi and Dr. Haddadin miracle men but it's been a miracle for me.

Kyle: Mr. Miracle Man, do you have any final thoughts for us?

Dr. Heresi: Yeah, I couldn't put it any better than what Peggy just did. I think it's pulmonary hypertension, it remains a rare disease, so it's really not as common to as asthma, or obstructive lung disease, emphysema and others, but it’s certainly under recognized. And so I would emphasize what Peggy said, if you have shortness of breath and you go to your doctor and they do some other routine testing and they don't find an answer then you need to start thinking about pulmonary hypertension. The way to screen for that is with an echocardiogram, a heart ultrasound, that would give us an idea of all the pulmonary pressures if those are high speed. You said the right heart catheterization would document the pulmonary pressures and the ventilation perfusion scan, the VQ scan, will be the first clue to think about blood clots as the reason for pulmonary hypertension. If that is the suspicion then yes go to an expert center, a center with experience and expertise in pulmonary hypertension and CTEPH. These are complex specialized treatment options. They are not sort of widely available and they can be life changing as Peggy exemplifies here.

Kyle: We're so glad you're making a great comeback too.

Peggy: Oh, thank you!

Kyle: Yeah you look good, big smile on your face today.

Peggy: Now that I've had the surgery I can travel. Last month my husband said to me after one of the last procedures where in the world do you want to go on vacation. And I have to think about that because now everything is open to me. Used to be before, well, we’ll drive to Atlanta, we’ll drive here. Now I can fly before I couldn't. And if I hadn't come to Cleveland Clinic and Dr. Heresi and I'd still be in the same situation and may not even be here talking to you.

Kyle: So, where are you going to go on vacation?

Peggy: I don't know yet.

Kyle: Come on, you have to pick someplace good.

Peggy: Oh, I know I wanted to go to the Grecian Isles so we can now fly and catch cruise. That's what I'd like to do. And since my husband is probably listening to this. That's what I'd like to do.

Kyle: That sounds good. Thank you both so much for being here today and taking the time to talk to us. And thank you everybody for listening. You can find additional podcast episodes on our website clevelandclinic.org/podcasts, on iTunes, SoundCloud, Stitcher and Google Play.