Brooke Evans PH Story
Hi, my name is Brooke Evans.
I live in Australia and here is my PH journey thus far.
I was a healthy and very active woman in my early 30’s. My husband and I married, with a bright future ahead of us, life was good. February 2012 we were blessed again and were overjoyed with the birth of our beautiful baby boy.
After our son was born things began to change, I was always fatigued and breathless, a month after he was born we were going to a family birthday party. I was pushing the pram with our son in his baby capsule, which was attached to the pram; all I can remember was walking up a hill and the next minute I was flat on my back, still holding the pram.
Luckily our son was still strapped into the capsule and he was fine. I on the other hand was in total shock and could not get my breath back. I went to my GP ( General Practitioner / Primary Care Doctor) who put me onto a multi vitamin as well as Ventolin for my breathlessness.
This wasn’t helping at all.
I went back to work in July 2013. While working in a smoking area, I almost collapsed and was sent to Werribee Hospital, Victoria, Australia. The doctors found something that should not be on my ECG (Electrocardiograph) and they told me to go back to my GP and demand a referral to a respiratory specialist.
I had to fight my GP to give me the referral as he still was determined these episodes were due to a lack of vitamins and the extra strain of taking care of our son.
After seeing the respiratory specialist and going for a lot of tests such as lung function, ECG, CT scan, Echocardiogram, Xrays, VQ scans (the list goes on), the respiratory specialist wanted me to see a cardiologist to have a stress echocardiogram done as well.
When the cardiologist was assessing me, he started with an echocardiogram on rest, and then told me I was not going onto the treadmill because he thought my heart would not cope with the usual stress echocardiogram. A week later I was in St Vincent’s Hospital in Melbourne having a right heart catheter (RHC) procedure done. It was then they found my pulmonary pressures to be very high.
In September 2013, I was assessed by one of the best professors in Australia, Professor Trevor Williams at The Alfred Hospital.
Professor Williams diagnosed me with Idiopathic Pulmonary Arterial Hypertension (IPAH). He immediately commenced my PAH medication. In January 2014, two more medications were added to my regime. I was able to start to do things I could do before my pregnancy.
However, in September 2015 I started to decline, so I was put onto a 24 hour a day intravenous (IV) medication. This has restricted myself a lot as well as our family outings. I cannot go swimming, cannot do cardio workouts; I cannot do many things I love to do. However, it has saved my life.
The IV medication and 3 oral medications I am taking have now started to fail, I am currently going through evaluation to be listed for a double lung transplant.
I have recently had a three-day stay in hospital to have the tests required and to meet the transplant team. I will be finding out on Thursday 13th July if I am suitable to go on the double lung transplant list.
All I want is to be able to walk around the block with my family without having to stop every couple of steps, go to the zoo, go swimming, dress myself after having a shower and be with my husband to raise our son.
We as a family are all members of Pulmonary Hypertension Association Australia (PHAA): the only patient support organisation in Australia endorsed by and working with the PHSANZ (the PH specialists and PH medical staff scientific group).
It is through PHAA that we have acquired knowledge, resources and support to cope with the diagnosis of Pulmonary Hypertension and live with this disease within our family – and this gives us hope.
“TOGETHER WE ARE STRONGER” is our registered motto for twelve years, and as one of our two founders, Annie Whitaker, always reminds us: “TIME IS HOPE”. This nicely ties in with Team Phenomenal Hope.
I am delighted to have been nominated to be the representative for PHAA as well as Australia and tell my story. We are very isolated down here and I am sure if you find any other athletes willing to be a #LetMeBeYourLungs for us, it would be so appreciated.