Mike gets a new heart

Mike Cohen is a husband, father and entrepreneur. He describes his lifelong lifestyle as "active, active, active". He played rugby for a total of 16 years and amateur provincial 7s rugby for the Golden Lions Rugby Union (GLRU) for four of those years (until 2008). Back then, he would exercise for around 36 hours a week. "I went to gym five days a week without fail too," he says.

Exercise is very good for the heart. However, Mike had no idea that he'd been born without enough blood supply to a small section of his heart. "Had l lived a less active life, I'd probably never have had any issues. The problem manifested because of too much time spent in an anaerobic state. The nature of rugby sevens and all the sprinting that happens is that the exercise is 90% anaerobic. These episodes of long-duration exercise in a hypoxic state meant my heart muscle was being starved of oxygen."

• Anaerobic exercise refers to exercise bouts that are short, fast and at such a high intensity that the cardiovascular system can't deliver oxygen to the muscles fast enough. The muscles then begin to work without oxygen (anaerobically) for a short period. In people with healthy hearts, this type of exercise has all sorts of benefits - from building endurance to stronger bones and muscles.

Mike collapses on the rugby field

In 1999 Mike's heartbeat became irregular for five days. Scans were inconclusive and showed some minor scarring on part of his heart. It was suggested that he might need to consider quitting competitive rugby. He monitored his health more carefully while continuing to play sport. For the next nine years, all seemed well.

Then, in 2008, he collapsed on the rugby field. So began a journey of appointments with multiple doctors and specialists (16 in total) until a prominent cardiologist diagnosed his condition. He had a pacemaker put in later that year.

In 2011 Mike met his wife-to-be, Amy. She is a physiotherapist with an extensive network of healthcare expert contacts within the sporting fraternity who led Mike to the right healthcare providers. A former Springbok triathlete (Olympic distance), Amy also knew how to manage things for a sportsman!

Mike adds: "By 2017, my condition was 'stable' but not improving. We'd hoped that low-intensity activities such as walking would increase oxygenated blood flow to the damaged areas and help with some level of recovery. I was walking around 900 km a year! However, my heart was massively enlarged (this is called cardiomyopathy). It had grown bigger to try to compensate for the lack of muscle flexibility (low ejection fraction) and activity in the dysfunctional areas. This is really dangerous. At the time, my cardiologist told me to 'Live life to the maximum as you never know what will happen'. This freaked me out, but it soon blew over because we thought that the doctor was just being overly cautious and pragmatic at the time."

Mike was advised to continue to exercise with extremely strict restrictions on his heart rate and intensity. He calls this "more civilised exercise".

"I had an idea that this might be on the cards when we got married," says Amy. "I even thought about Mike's heart condition as we said our vows. We would see Mike's doctor for check-ups every six months and each time the cardiologist would reduce his exercise programme. As a physiotherapist, I knew that this was not a good sign."

Warning signs of serious heart problems mount

In November 2018, a small blood clot was found in one of Mike's atria (the two upper chambers through which blood enters the lower ventricles of the heart). It happens when the heart is not functioning correctly and blood starts to pool in areas where the flow is not great.

"I was given medicine to dissolve it," Mike explains. "In December 2018, I noticed that while I was walking, I would get a dull ache in my stomach. I started to decrease the distance to try and stay active but avoid the discomfort. We went to see our sports doctor in January for a check-up and she suggested it could be a stomach ulcer. She prescribed some medication to try for the month and suggested we go on a holiday to relax."

"That was when the cardiologist suggested I consider being put on the transplant list."

"In February 2019, Amy, our daughter Kate (then two years old) and I travelled to Switzerland on holiday. The discomfort in my stomach continued and it felt like I needed to burp all the time. Our daughter picked up a tummy bug on the flight, and I got it from her but just couldn't seem to recover. We returned from holiday and my sports doctor sent us straight to the gastroenterologist for a gastroscopy to rule out a stomach ulcer. The result showed no stomach ulcer, but the scans did show fluid around the liver and gallbladder.

Mike, his wife Amy and daughter Kate on holiday

In April 2019, Mike was admitted for decongestion (removal of the excess fluids around the organs with diuretic medicine to alleviate the pressure on the heart). This was when he was diagnosed with heart failure. He was prescribed new medicine.

"Then in June 2019, I woke up one morning and could feel my heart rhythm was again irregular," says Mike. "This time, and for the first time, my heart rate started climbing! My cardiologist diagnosed me with atrial fibrillation, which made the heart function even more impaired, and he prescribed new medicine. I had a very negative reaction to the medicine prescribed and had to be readmitted for the management of the congestion. I had a procedure to try and correct the atrial fibrillation, which unfortunately only worked for five days. That was when the cardiologist suggested I look at going on to the transplant list. I saw this as him suggesting the idea of a transplant. I really thought it would sort itself out as my other heart issues had over the past 11 years."

In July 2019, Mike went to see an electro-cardio physiologist to see if there was any possibility of stopping the atrial fibrillation. "He said the same thing," says Mike, "that it was a matter of urgency that I went onto the heart transplant list."

"He was so positive and he felt he could overcome it all. But things got very bad"

Mike's legs swelled. He was literally starting to drown inside his own body. "I couldn't do things like pick up my daughter and play with her. I felt very tired and as if I were permanently being strangled, like I had a lump in my throat." His poor heart function meant there was not enough pressure to push blood through his organs. "I could hardly eat because my stomach was full of foam as a result of the fluids building up in my body," he explains.

"To get Mike to accept he needed a transplant was so hard," says Amy. She stopped practicing in November 2019 to allow her to be with Mike, while Mike's business partner made sure that their business kept going throughout his treatment journey. "He was so positive and he felt he could overcome it all. But things got very bad. I would stay awake all night listening to Mike oscillate (alternate) between breathing and not breathing. We had a few close calls where Mike would collapse and become unconscious. Being on high doses of diuretics (to assist the removal of fluid through the kidneys) meant he always had mineral imbalances and he sometimes needed up to 16 potassium tablets a day to correct this. I would set my alarm to go off every three hours to give Mike more tablets. At that stage he couldn't walk more than 10 metres without stopping."

"Mike's kidney and liver function also deteriorated significantly. He began to show signs of multiple organ failure."

"He was also on high doses of medicines that help the heart, but they create a dependency, so the heart becomes weaker without them."

Getting Mike onto the heart transplant list

"Getting onto the transplant list is an extensive process," says Mike. "There are a host of blood tests and inoculations (vaccinations) to do in preparation for a transplant."

Amy adds, "You also have to see the transplant pulmonologist, surgeon, cardiologists, dietitian, physiotherapist and psychologist. You have to make sure that you have support at home so that your recovery after your heart transplant is optimal. You can't get onto the transplant list unless the medical team is confident you will adhere to the protocols and that you have a good support system in place. There is such a huge need for donor organs in the country, so it's essential to make sure that the recipient will do all they can to protect the donated organ and adhere to the post-transplant protocols."

September 2019: Mike is finally officially on the heart transplant waiting list

January 2020: "By then, I was sleeping most of the day, absolutely exhausted. My fluid intake was being strictly monitored and kept to less than one litre a day. My blood pressure was unstable and I couldn't urinate properly. I felt like I was drowning in my own body. I could feel the pressure from the fluid and, for example, couldn't bend to do up my shoelaces as doing so made my face feel like it would explode," says Mike.

"I prayed all day long that each day would be the day a heart would be available," says Amy.

"I said 'That was the call. Should I do it?'"

One Thursday evening at the end of January 2020, a call came through telling Mike to get to Milpark Hospital by 22:30 to start the process to receive his new heart. "Amy and my mom came through and said, 'Who was that?"' says Mike. "I said 'That was the call. Should I do it?' They both burst into tears."

"We'd prepared our daughter for the moment and explained that daddy needed a new heart to be able to play with her, to run around and climb trees. At two and a half years old, Kate knew this needed to happen and understood as much as she could," says Amy. "Mike said goodbye to her, which was so hard, and got ready to go."

Mike adds, "I had a quick shower and shave and went to the hospital. I don't remember much more after that."

"I had a deal with the doctors who did my transplant," says Mike. "I said, 'You guys get me off the operating table and I will do the rest.' They say that a rich man has many wants, but a sick man only has one! My last thoughts were of Amy and Kate. All I wanted, and want, is time with them. Everything else was secondary to this."

Mike with daughter, Kate

Eight weeks in the ICU and a host of complications

The process that followed was not without complications. From questions around the compatibility of the heart right before surgery, to Mike developing a bleed a few hours after the transplant, which required him to be taken back to the operating theatre. The transplant team fought for his life that night and worked together with a passion. They didn't seem to mind that it was 06:00 and that they had been working non-stop. Mike's blood pressure had dropped extremely low and he needed many transfusions. He also had many complications linked to his multiple organ failure before the surgery.

"Mike was ventilated for about three weeks," says Amy. Due to multiple organ failure, his kidneys had been severely injured and he needed continuous dialysis. This was slowly decreased to intermittent dialysis just before he was discharged from the hospital. He had several complications, like infections. They had to find the source of the infection, so Mike went back and forth in and out of theatre. He had fluid build-up in his thoracic region which required intercostal drains and drains around his new heart to remove excess fluid. He also unfortunately had a hospital-acquired infection, which gave another knock to his already very fragile system.

"Despite the complications, he was slowly improving," says Amy. "It's incredible to see how the body responds to a new heart and, of course, a very determined, strong-willed person. After eight weeks in hospital, Mike was finally discharged and he actually walked out of the hospital. Mike still had acute kidney failure when we left the hospital. His discharge coincided with the COVID-19 pandemic reaching South Africa. We had an amazing renal team come to our house for dialysis for three months as, in light of the pandemic, this was safer than visiting a dialysis clinic."

Four months after his transplant, Mike no longer required dialysis and life began to take on a semblance of normality.

Amy adds: "His kidneys were, at that stage, only mildly impaired. Mike watches his diet and, as he is the best cook in the world, he has learned to adapt to life with limited salt, caffeine and alcohol. These are post-transplant guidelines, which are key to adhere to. We also have the support of an excellent dietitian who sees Mike every week."

Mike thanks Discovery Health Medical Scheme for the service they received

In an email to Discovery Group CEO, Adrian Gore, sent in August 2020, Mike writes:

I am writing to thank you and your team for the wonderful service that I have received from Discovery Health Medical Scheme (DHMS). Over the past 18 months I have unfortunately required a lot of medical attention as I developed heart failure last year. I've been in and out of hospital. And, in January this year, I had a heart transplant. I spent approximately two months in ICU fighting battles with systemic failure on top of the heart replacement.

The procedure was performed by the transplant team at Milpark Hospital and the doctors are on top of their game and deserve much recognition! The physiotherapy team and nurses deserve mention too!

I would like to further thank Discovery Health Medical Scheme (DHMS) for the smooth and consistent service that we received. I cannot begin to thank you for returning the faith that I have always had in DHMS, the best medical aid there is!

My six-month biopsy results were as good as could have expected with no rejection of the heart detected. I plan to help educate other people - and rugby players - on heart health. That's my way of giving back!

Again, thank you!

Mike

Mike gets stronger and becomes a father for a second time

By January 2021, Mike described himself as "fat and happy," having regained the 25 kg of muscle mass he lost through his ordeal. "I was back to exercising for an hour every day at a very low intensity, with one day off a week. I could at that stage honestly say I'd improved a hundredfold on every level since my transplant. The best part was being able to pick up my daughter and being able to play with her, something I will never take for granted."

Mike and Amy had hoped for a second pregnancy in early 2019. "When I was diagnosed with heart failure, we had to put those plans on hold until I was better. It was a mental goal for me. So, we were absolutely thrilled when Amy fell pregnant at the start of 2021," says Mike.

Their son, Max was born in London in September 2021 and Mike says: "it's a dream come true. We realised that Kate could have been an only child at one point, so it was a real blessing to be able to give her a sibling for the future". Amy adds: "Max was given to us so kindly. We fell pregnant the first time we tried and everything just went our way."

Mike has been feeling fitter and stronger with each passing day and keeping very busy with his growing business. When he was given the go-ahead to start jogging in February 2022, Mike started immediately. "Jogging is a strong term, I can't manage to run a full 5km route yet, I kind of do a walk-run," he chuckles. "But it's so exciting to be able to exercise! It's only when exercise is taken away from you that you realise what you had before. So even if it's only moderate exercise, I appreciate each session like a gift."

Mike has been feeling fitter and stronger with each passing day and keeping very busy with his growing business. When he was given the go-ahead to start jogging in February 2022, Mike started immediately. "Jogging is a strong term, I can't manage to run a full 5km route yet, I kind of do a walk-run," he chuckles. "But it's so exciting to be able to exercise! It's only when exercise is taken away from you that you realise what you had before. So even if it's only moderate exercise, I appreciate each session like a gift."

- Find out about physical activity after recovery from COVID-19 and more on Vitality's COVID-19 support hub.

Supporting other heart transplant candidates

Now that Mike is doing so much better, he has made it his mission to support other people who need heart transplants before and after their surgeries.

"It's an extremely daunting journey for the patient and their closest support structures. People in this position have so many unnecessary fears because they've seen what happens in movies and on TV shows. My job is to get their heads straight and help them to believe that no matter what, they can make it. I try to take them through what to expect so that they are focused on reality and don't waste their energy being scared of something that's not going to happen."

Mike and Amy are also working together to help these people during their recovery and rehabilitation. They encourage transplant patients to regularly check their skin for lesions, to go for their scheduled blood tests and to continue to take their prescribed medicine. "We also attend Organ Donor Foundation fund-raisers and things like golf days and other events to raise awareness and funds for organ donation and recipients."

Getting the COVID-19 vaccine

Mike's transplant requires him to be on lifelong immunosuppressive medicine. This immune suppression makes Mike more vulnerable to infections, such as COVID-19. It also means that Mike's immune system won't respond as strongly to COVID-19 vaccination as it should, so the level of protection he experiences is somewhat diminished. Mike got the Johnson & Johnson single-dose vaccine in May, and he also received one Pfizer-BioNtech vaccine dose at the start of August as a booster shot. He had no vaccine side-effects and felt good all around. "My team of 11 doctors unanimously agreed that a single Pfizer booster shot would be a good idea for me," adds Mike. "If they're smart enough to do a heart transplant, they're certainly smart enough to guide me on how to be vaccinated for COVID-19."

Interestingly, in early August the United States Food and Drug Administration (FDA) authorised COVID-19 booster shots for solid organ transplant recipients like Mike. The booster shots were approved to assist them to build their ability to fight COVID-19 infection after a first vaccine regimen.

Amy received her two Pfizer COVID-19 vaccine doses at 1 Discovery Place recently too, believing that it was key to her staying healthy at the end stages of her pregnancy.

Mike and Amy raise awareness of the need for organ donation

Mike is very aware of how things could've turned out differently for him. "Unfortunately, some of the people I've met haven't made it because of the lack of available organs. It makes me feel vulnerable. But I have to remind myself that my journey is very different to that of everyone else we've met."

Mike has also started holding a birthday celebration on his heart transplant date. "I celebrate two birthdays every year, with presents!" he jokes. "When I had my first transplant birthday, I tried to change my birth date on Facebook and it kicked me off, because you have to be 18 to be on Facebook. It was very funny."

He uses his "heart birthday" as an opportunity to promote organ and blood donation and to thank those who have registered to be organ and blood donors. "We give thanks to people who give selfless donations. Look what you can give as a gift, simply by signing up as a donor, it's really so easy! With organ donation, you'll never know the difference you can make."

Amy adds: "We both would love to get people to be more aware of the need for organ transplants and raise awareness about signing up to be organ donors. It's the quickest and simplest thing to do to register with the Organ Donor Foundation, and the impact of this decision is massive. We want to highlight the dire need for organs. We were given such an amazing gift and we will do all we can to make people aware of the massive need for organ donation in South Africa. Unfortunately, there are so many false beliefs about putting your name on the organ donation list. I have even heard people say, 'If you have an accident and they find out you are on the transplant list, they will try not to save your life.' I hope our story will help people realise that signing up as an organ donor is not only safe, but can also save many lives."

Would you like to register to become an organ donor?

• At any given time, up to 2 000 South African adults and children are waiting for a life saving solid organ (including heart, lung, liver, pancreas, kidney and corneal transplants). People who choose to be organ donors can save the lives of people who need replacement organs.
• By registering as an organ donor and donating your heart, liver and pancreas, kidneys and lungs, you can help to save seven people's lives with your organs and 50 others with other tissues. Register with the Organ Donor Foundation or by calling 0800 22 66 11. Organ Donor Foundation - Home (odf.org.za)
• Read the Organ Donor Foundation's handy PDF for important information on organ and tissue donation.