Celebrating a decade with transplanted lungs

Fawn Kruger is a seemingly typical 35-year-old woman living in Johannesburg. She is married, has 4 pets, owns her own business and socialises frequently with her friends.

What makes Fawn different is that 10 years ago both her lungs were removed and replaced with a stranger’s lungs in an effort to save her life.

Fawn was born with a genetic disease called Cystic Fibrosis (CF). This degenerative illness is a lifelong burden that requires non-stop invasive treatment. The disease affects various organs but the most life threatening is the lungs, which are filled with a thick sticky mucus that slowly kills off the lungs until the patient cannot breathe anymore. 

“It’s like having a constant bronchitis infection every day of your life – it’s exhausting and painful,” Fawn says.

The F508del Cystic Fibrosis mutation affects 86.4% and the G542X affects 4.6% of all mutations. Most patients have 2 F508del genes but Fawn has 1 of the F508del and 1 G542X gene which is a far more severe mutation to treat. 

Fawn was born in Zimbabwe and was diagnosed with CF when she was only one year old. Her daily treatments were a combination of digestive enzymes with every meal and nebulising twice a day with chest physio. By the time she was 13 years old, she was spending two weeks in hospital every three months receiving intravenous antibiotics.

This was hugely disruptive to her life and her lungs were only getting worse. Fawn spent over 700 days in hospital prior to her transplant. 

“I couldn’t plan anything with my friends because I never knew how I would be feeling by the time the date would come around. I missed so many special occasions because I was either in hospital or just not well enough to attend.” 

Eventually her lungs deteriorated to a point where she could no longer breathe without being connected to an oxygen machine 24 hours a day.

“I’d take the oxygen tubing off to wash my face and my lips would immediately start going blue and I felt light headed.” 

She had an oxygen tube in her nose, a feeding tube surgically inserted into her stomach, an insulin machine attached to her and her portacath in her neck to allow for vein access for medication. At this point she was listed for a double lung transplant. 

What is a lung transplant?

It’s a (long) surgical procedure to replace a diseased or failing lung with a healthy lung, usually from a deceased donor. A lung transplant is reserved for people who have tried medications or other treatments, but their conditions haven’t sufficiently improved. Depending on your medical condition, a lung transplant may involve replacing one of your lungs or both of them.

Who can get a lung transplant?

A lung transplant isn’t the right treatment for everyone. Certain factors may mean you’re not a good candidate for a lung transplant. A full evaluation is done beforehand and essentially you need to be ‘healthy’ enough to survive the surgery. With lung transplants you are only considered when the transplant team estimates you have less than two years to live. This is rather scary considering some patients wait four or more years for lungs.

How long do transplanted lungs last?

The survival rate for one year is 79.5%, up to five years is  50.6% and 10 years is 30.4%. 

Why do lung transplants fail?

Risk of rejection: Your immune system defends your body against foreign substances. Even with the best possible match between you and the donor, your immune system will try to attack and reject your new lungs. The drug regimen after transplant includes medications to suppress your immune system (immunosuppressant medications) in an effort to prevent rejection. These drugs need to be taken (on time) for the rest of your life and unfortunately hold a host of side effects. 

Risk of infection: Anti-rejection drugs suppress your immune system, making your body more susceptible to infections, particularly in your lungs. These infections can be life threatening and they can also cause rejection. 

In March 2013, Fawn was told they had found a match for her and she could finally have the surgery to replace her lungs. The eight-hour procedure left her in hospital for three months recovering from a number of complications.

Once she was discharged from hospital it took Fawn about a year to build up the mental and physical strength she had lost over the years. From there it was up and up as she enjoyed doing things she could never do with her ‘original’ lungs.

“I’ve had so many firsts over the last 10 years and I’m so grateful to my donor for giving me a chance to truly experience life for the first time”.

Fawn is one of only 22 patients in South Africa who have survived a lung transplant for 10 or more years.

Every year Fawn celebrates her ‘Lungaversary’ and this year is no different. She plans to invite all her friends, family and some of her medical team to join her as she commemorates the occasion. 

Fawn co-founded TELL, a non-profit organisation, as a way to increase the number of transplants that take place in SA. 

“One of the hardest parts of this disease is losing friends who didn’t get a transplant in time,” she says.

She has asked all her guests to make a donation to TELL in lieu of gifts at her 10 year Lungaversary party. Her goal is to raise R10 000 to assist TELL in their continued efforts to educate both the public and medical professionals about organ donation, as well as to provide patients with support. 

If you would like to make a donation then please use the following Backabuddy link: https://www.backabuddy.co.za/champion/project/fawns-10-year-lungaversary

Or make a donation to the banking detail below: 

Name: TELL NPO

Bank: First National Bank (FNB)

Account type: Cheque

Account no: 62818725775

Branch code: 250655

Reference: 10YOURNAME

Swift code: FIRNZAJJ