Carolyn’s long road to Trikafta

By Carolyn Boyd

I was born in 1967 and diagnosed with cystic fibrosis in 1971. 

During my childhood, I was relatively well.  I had a stroke when I was 16 and I was paralysed down my left side. 

It was very difficult to get over the paralysis from the stroke. It took a lot of physical therapy and acceptance.  I later ended up with pleurisy and pneumonia, unfortunately, things got worse from there.

When I was 22, I was admitted to Sir Charles Gairdner Hospital for a tune-up. As was normal back then, I would go to work from hospital. I was sitting at my desk when I felt a sharp pain, like someone had stabbed me in the back.  The pain was horrendous, and I realised that I was getting extremely short of breath. It became obvious I needed to go to hospital. I called the Dr and asked him what a pneumothorax (collapsed lung) felt like.  He ordered me to get to the hospital ASAP.  

I drove myself to hospital where one of the nurses met me with a wheelchair.  I was rushed to my room, where a tetracycline pleurodesis was performed.  A tube was inserted into my lung. Tetracycline was pushed through a tube.  This caused irritation and inflammation, producing scar tissue that makes the lung adhere to the chest wall. 

The procedure itself was very, very painful.  I lost a lot of lung function after the pneumothorax and was constantly in and out of hospital. It was a difficult time.  I was referred to the Sydney team for a lung transplant.  The team said to me, “If you don’t have a lung transplant, you will be dead in 2 years,” it was an absolute shock. 

In October 1993, I flew to Sydney. I underwent testing, I was placed on the lung transplant list and given a pager.  At this time, I had Haemoptysis, so I was very unwell.  On 20th November 1993, the pager went off and I was admitted to Prince Alfred Hospital to wait for the transplant.  I was later transferred to St Vincent’s Hospital and the transplant occurred on the 21st of November 1993.  The anaesthetist involved did not think the surgery would be successful, as carbon dioxide levels in my blood were so dangerously high.  He informed the team prior to surgery, that it would be a ‘waste of organs,” if the surgery were to go ahead.  

The transplant was successful, and I recovered quickly.  I remember being really surprised when I had my first shower, that inhaling the steam, didn’t make me cough. This was a new phenomenon to me, as was the ability to walk and talk at the same time.  I was in ICU for 5 days and 12 days on the ward.  I remember waking up and not having to cough.  My world had changed, and I was able to live normally.  My life was completely different, compared to everything I had been used to for 27 years.

Life is great post-transplant, however, there have been a few complications along the way.  I have sustained a broken hip and numerous fractured ribs and toes.  I’ve had pneumococcal pneumonia and chronic sinusitis. Due to the sinusitis, I had to endure intravenous antibiotics every 3x months and I had sinus surgery 3x times a year.   This was due to chronic infections and postnasal drip which would then infect my lungs. The medical staff did whatever they could, to protect the lungs.

Sinusitis is horrendous.  You can’t think, you can’t do anything and its extremely painful.  I was prescribed Symdeko (modulator), and there was no improvement.  When Trikafta became available, there was a lot of information stating Trikafta could improve my sinus issues.  I advocated to medical staff for six months, to be allowed to trial Trikafta.  

I hadn’t had a sense of smell for many years. After the first week, my sense of smell returned when I was at the mulch section at Bunnings.  Within two weeks, I had no nasal discharge, no pain and I didn’t have to take Panadiene Forte anymore.  I also had no admissions to hospital.  I now take two Trikafta tablets twice a week, enzymes, and anti-rejection medication.

I returned to the Trikafta clinic after my initial trial with Trikafta.  I saw the ENT surgeon and he could not believe how clear my nasal passage was.  

Life is fantastic since I started Trikafta, I don’t have any side effects. The worst thing that I am dealing with is old age, which is a privilege.  This year I am celebrating 30 years since my transplant.  Every year I celebrate the anniversary of my transplant.  I have celebrated my 20th and 25th anniversary, by having a big party in Bali.  My 30th will be no exception!

If you are considering Trikafta, my advice is to give it a go, you have nothing to lose.  If you are struggling to access Trikafta, don’t give up. Just because you have had a transplant and have healthy lungs, CF still affects other parts of your body – for example, sinus and pancreatic insufficiency. Don’t give up, anything is possible. Your whole body is valuable, not just your lungs.