OUR JOURNEYS

Patient story

Joan Godber — President PHA Australia

"I had been very gradually getting short of breath for years but had always put it down to the asthma that had been diagnosed in 1990. Doctors had just changed my medication when I complained it wasn’t working like it used to. Boy was I wrong!"

In November 2004 I decided it was time to speak to my general practitioner (GP) about the fact that I was getting short of breath when I did anything and the trouble I was having losing weight which I felt was the cause of the shortness of breath. I had been very gradually getting short of breath for years but had always put it down to the asthma that had been diagnosed in 1990. Doctors had just changed my medication when I complained it wasn’t working like it used to. Boy was I wrong! Luckily my GP decided he wanted to check my heart before working on the weight loss.

Joan GodberA simple echocardiogram started it all on December 18, 2004 when abnormalities were picked up and my oxygen saturation read 72 at rest. I was hospitalized in NE Victoria immediately and after several preliminary tests was admitted to the hospital for stabilization. It was sheer luck that the young doctor on ward duty that day had just taken up residency and had come from being a registrar in our major PH Clinic at the Alfred Hospital in Melbourne. He recognized my disease, contacted my PH specialist immediately for advice and was able to arrange an appointment in eight days time. He started me on oxygen therapy and calcium channel blockers medication and I was stabilized before being discharged five days later.

On December 24, 2004 at the Alfred Hospital Melbourne I was diagnosed with idiopathic pulmonary arterial hypertension (IPAH). Great Christmas present!!! I was told to go and enjoy Christmas and New Year and be back at the hospital on January 4. Terrific when the family was flying to America on the 6th. Ten days rest and a barrage of tests confirmed moderate to severe IPAH.

"In hindsight we are sure that I have had this beast for at least ten years prior to being diagnosed. What initially was diagnosed as asthma probably wasn't, particularly around the time I started telling doctors my asthma medications weren't working. We can all be wiser with hindsight and do not need to dwell on the past but look to the brighter future."

After further tests and a right heart catheterization in March I was started on Bosentan. What a difference one little tablet made. I had energy and felt better than I had for ages after only eight days. I was also diagnosed with sleep apnea and prescribed a CPAP machine for use at night. Sadly I was one of the few that develop liver problems with Bosentan and had to stop it in 2007 after 2 years. Sildenafil replaced it and, whilst I was stabilized, I didn't have the energy levels I did with Bosentan.

In 2009 my pulmonary hypertension progressed and I was offered Ambrisentan (Letairis in some countries, Volibris in others) and was fully informed of the possible liver concerns. I decided to give it a go as it would be one way for the specialists (and drug company) to see if someone who had liver problems with one drug would have the same problems with a new drug – so far everything is fine. Unfortunately in Australia we don’t get more than one medication subsidized so not many of us are on more than one PH medication due to cost.

One thing I have proved possible in 2008 is that with planning, good surgical and back up staff it is possible to have surgery with PH. I had two major operations in that year with no problems thanks to the expertise of medical staff at the Alfred Hospital in Melbourne just shows that it is achievable.

In hindsight we are sure that I have had this beast for at least ten years prior to being diagnosed. What initially was diagnosed as asthma probably wasn't, particularly around the time I started telling doctors my asthma medications weren't working. We can all be wiser with hindsight and do not need to dwell on the past but look to the brighter future.

In 2006 I joined PHA Australia and in 2010 became President. We are small by international standards, but because of our vast country we rely on the internet for communication with our members but we still have a lot of work to do to reach those diagnosed with PH, a task that I take very seriously as I lead a fantastic group of patients and caregivers that promote PH awareness in our country.

As we say here “Together We Are Stronger”

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.