What is it like to have a lung transplant?

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1:18Aimee Morrison:Hello, I'm James Reynolds. Welcome to the documentary from the BBC World Service. In BBC Conversations, we bring people together to share their experiences. This time, we hear from patients and doctors with first-hand knowledge of life-saving lung transplants. Norway's royal family has revealed that its crown princess, 52-year-old Meta Marit, has undergone a successful lung transplant. This major surgery was carried out to treat chronic pulmonary fibrosis. That's a progressive lung disease which was first diagnosed in the princess eight years ago. Later, we'll hear from two physicians who work closely with lung transplant patients and their families.

2:02Aimee Morrison:But our first conversation is with women who have experienced the operation for themselves. Natalia Maeva lives in Sofia in Bulgaria. She travelled to Austria in 2016 for a double lung transplant. And Amy Morrison is in Rotherham in the north of England. Her transplant operation took place last year. It was the culmination of a series of life-changing events.

2:28Mette-Marit:It kind of started really, I noticed when I was out with both of my brothers that I was really breathless and they actually needed to kind of carry me back to the train station. Just assumed that I had a winter bug, nothing really serious. Went to the local A &E who diagnosed me with pneumonia and thought really that would be the end of it. before they could do a x-ray on my lungs they did ask me to do a pregnancy test which to my shock came back that I was pregnant I was three weeks pregnant at the time so the emotions were all over the place anyway and then from that point they did do an x-ray and saw the extensive damage that was on my lungs this then meant that we needed specialists involved to understand what was going on and what are the next steps.

3:22Mette-Marit:I was then put onto quite high oxygen. This was enabling me to go home. So the plan was stay on the oxygen until baby was born. And then from that, we'll then be able to do more tests to figure out what was going on. A lot of the tests that they needed to do would be quite harmful to myself and also my baby. So they were really cautious of what they were going to test for before she was born. And as we went through the process, I did start to deteriorate quite quickly. I was moved to a specialist transplant centre, which is in the south of England. This is where my sister was also based. She also had a heart and lung transplant when she was 10.

4:10Mette-Marit:So she had been there as well. But they moved me there to try and help the pregnancy as much as we can. And when I got to 24 weeks pregnant, I went into premature labour. So from that point, the decision was made. The baby was coming today.

4:27Aimee Morrison:That's very early, 24 weeks, isn't it?

4:30Mette-Marit:Yeah. And so not only was I then worried about what's going to happen to me, I then also, you know, had my baby. She went into a different hospital. She had so many complications. each day was just let's get through this day let's get through this day so I spent a lot of the time focusing on my daughter and within a week of having the c-section I had a cardiac arrest in my hospital room luckily there was people stood opposite me as this happened they resuscitated me in my room and from that point I was then put on the emergency transplant list.

5:08Aimee Morrison:When did you get the transplant?

5:10Mette-Marit:It was one week after I got told that there was lungs that were ready for me. Everything was so quick. Everything was so scary. You don't really get an opportunity to think about what's happening. The extent of the surgery that you're going to go through, you know, 10 to 12 hour surgery, unknown results, what's going to happen afterwards. But I had the surgery. it was successful. I did have quite a few complications following that, which possibly might have been related to having a C-section the week before, everything that had been going on. So there was quite a few infections and I needed some help with the lungs and a tracheostomy was fitted in my throat to do my breathing, which really, really helped.

6:00Mette-Marit:It did just mean that for those three to four weeks, I wasn't able to communicate verbally.

6:07Aimee Morrison:When were you reunited with your daughter?

6:10Mette-Marit:So we had to wait for 28 days. We both still were on lots of oxygen. She was still in her incubator. It did take about three hours of logistics in how they can get my daughter over to my room with all of our equipment, the tubes, everything that was needed. but I think that moment for both of us was a real turning point.

6:34Aimee Morrison:How are you both now?

6:36Mette-Marit:We're both doing well. Jessica will be a year old in two weeks. She was born at 700 grams, so very, very tiny. We're now nearly up to a stone, so she's doing really well. She's amazing and a little superstar. The recovery from the transplant physically, it's a lot, especially with a baby as well. Sometimes you're just so tired. We are both still at risk of infections, myself being immune suppressed now, but also my daughter being so premature. So we are just mindful of where we go, who we see. And to be honest, we've got our own little bubble. We're recovering, but it's very much day at a time and kind of going from there, really.

7:25Aimee Morrison:It's amazing. You're both in this together in those different ways, aren't you?

7:30Mette-Marit:Yeah. And following on from all of the events that happened last year, the wider teams wanted to understand why my sister had a heart and lung transplant. She tragically died when she was 21, which was 10 years after her transplant. They've done some genetic testings which have shown that we both had a genetic mutation and mine was triggered from the pneumonia. And now looking further, they've seen that my daughter also has this genetic mutation. But now we know this, we can keep on top of her health. We know that it's something that she might need to deal with in the future.

8:10Aimee Morrison:It is astonishing to hear your and your daughter's story, Amy. Thank you so much. And we'll bring in Natalia from Bulgaria. Natalia, when you yourself needed a lung transplant, you couldn't get that treatment in your own home country. You had to go abroad. Tell us about that.

8:30Mette-Marit:Back in 2009, when I was diagnosed with pulmonary arterial hypertension, this is a rare lung disease that occurs the small vessels in the lung. So at that time, Bulgarian state did not provide any proper therapy about my illness. So my family started to pay for this just to save my life. And I started the procedure here with the Bulgarian authorities. It was a very, very big fight. You can imagine I was extremely ill with oxygen therapy for 16 hours per day. And I should prepare all the documents to fight with different institutions here in Bulgaria. But this time, Bulgaria had the contract with the Austrian clinic in Vienna University Hospital.

9:32Mette-Marit:So I'm one of nine patients who was transplanted in Vienna in the period since 2040 till 2019. And my lucky day was 9th March 2061 when we find it a suitable donor for me. And I want to share a big thank to the whole team in the thoracic surgery clinic in Vienna. Because of them, I will not be able to speak now with you. You know, when you live with oxygen, every word counts. Because sometimes you don't have enough oxygen. And when you don't feel well, you just can say only one word. So this is amazing to fight and go through the double lung transplantation and to have a happy, normal life, 10 years.

10:35Mette-Marit:So for me, it's a miracle. Yes.

10:39Aimee Morrison:How do you reflect on the life of the donor whose lungs gave you this new life?

10:45Mette-Marit:I didn't know nothing about my donor because this is of Austrian legislation. but I was the first Bulgarian patient who received a medical airplane and the plane came here to Sofia to take me when was the donor situation. And when we landed in Vienna airport, I asked one of the pilots from where is there another flight? And he answered me, it's from Slovenia. and probably maybe someone gave me his or her lungs and a big thank to this family who said yes. I think it is very important when you can say, I have two birthdays, one when you came to the world and the second when you reborn. for me and my story there's so many people to thank like I say my sister when she was 10 years old she had a heart and lung transplant so the donor that she had I got 10 amazing years with my sister and then the donor that I had for myself it changed my life I wouldn't be a mum without the donor but also just to say that throughout our process we also both myself and Jessica we required lots of blood transfusions.

12:16Mette-Marit:We also used milk donors as well. So yeah, just, you know, anybody that donates blood, anyone that donates breast milk, all of these things, they do really, really help in recovery as we both wouldn't be here without all of them.

12:34Aimee Morrison:Amy, listening to Natalia there, she said she has two birthdays, the original birthday and the day she feels she came back to life with the transplant. Is that how you see it for yourself?

12:43Mette-Marit:Yeah, I'm really quite fortunate that I get to celebrate my daughter's birthday on the 2nd of July. And then on the 16th of July, we celebrate my transplant day. So July is a big celebration.

12:56Aimee Morrison:Yes, keep the balloons up.

12:58Mette-Marit:Yes. Yeah. So hopefully it's my first year since all the events. So hopefully this year, the celebrations can kind of take away some of those more painful memories. and we can just sit and enjoy being together and actually just enjoy every single day that comes, really. A big hug from Bulgaria. Amy, your story is amazing. Thank you. I'm sure Jessica's now in the stage where she likes and enjoys cake, so I think the house is going to be a mess for that day. But we'll take lots of photos for her to remember.

13:40Aimee Morrison:Natalia and Amy, they're extremely grateful recipients of lung transplants.

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15:21Aimee Morrison:I'm James Reynolds. You're listening to the documentary from the BBC World Service.

15:30Aimee Morrison:The first lung transplant operations took place in the 1960s, but the recipients of those early operations did not live for long. A breakthrough, though, came some 40 years ago in 1983, with a patient surviving for several years after their transplant. And since then, the procedure has become far more routine. One of the main issues now is the lack of enough suitable donor lungs for all the patients who could potentially benefit in the way that Norway's crown princess, Metamarit, has. For our next conversation, we brought together two doctors who specialise in lung transplants. Vicky Gerovasili is a consultant in respiratory and transplant medicine here in the UK.

16:15Aimee Morrison:And Marie Boudev is in Cleveland, Ohio. She's the medical director of one of the largest lung transplant and heart lung transplant programs in the United States.

16:23Mette-Marit:It is an incredible moment when you're able to take a patient through all the testing and to be able to tell them, I think you're eligible for a transplant and you need to go on the waiting list. And it's most incredible when they receive that organ and that transplant. Lung transplantation is still in its infancy compared to other solid organ transplantation. Lungs are very different immunologically than other organs that are transplanted, and that presents a challenge. But it's very, very exciting news that this transplant took place in Scandinavia. This transplant network in Scandinavia is excellent.

17:00Mette-Marit:They've had wonderful outcomes. They're innovative. And this is wonderful that this transplant happened there with success. Like Dr. Budev said, it is a life-transforming, life-changing experience, but it's an uphill road to get there. And it is a lot of work after the surgery itself, not only to recover from it, but to maintain the health of the lungs. The journey starts when a patient with end-stage lung disease or when their lungs are failing because of respiratory condition gets referred to a transplant center. And it's a lot of work to work them up and make sure they are well enough and strong enough to withstand the big assault that the transplant operation is on the body itself.

17:41Mette-Marit:The first great moment of that is when you actually can say to someone you're well enough and you need a transplant, but you are well enough also to go on a transplant waiting list. But lungs don't grow on trees. So for those patients waiting for a lung transplant, it's like being on the waiting room, waiting for an operation every single minute of that waiting time, which can be days, weeks or months. So it's a very stressful time for the patient primarily, but for the whole team looking after them as they are deteriorating, waiting for an organ to become available. And it's the biggest gift that someone can ever give.

18:16Mette-Marit:So allow me to take a minute to encourage everyone who might be listening in to become donors to express their wish because it's such a life-transforming experience for those patients. So when a lung becomes available, that can be any time of the day or night, and then the patient will be called into the hospital, the lungs will be retrieved from the donor hospital, and there are different processes in different countries around the world, certainly different ways it's done in the US and in the UK and slightly different in Europe and other places. But the end result of it is if the lung is suitable, then the transplant surgeon takes over from the physicians and does what can be a very lengthy operation.