Suzanne and John Calder’s daughter Sarah was diagnosed with pulmonary hypertension at the age of 25. Here, Suzanne tells us about the family’s difficult journey…

“I don’t think we took it in straight away.  It was a very big shock, especially to Sarah, and to be told this on her 25th birthday as well.  The doctor told us about the medication they would put her on and then, the cruellest blow, that it would not be wise for Sarah to have children because of the risk involved. I can’t explain the feeling that you have at the time.  We felt worried, angry that this has happened to our daughter, but we tried to be strong for Sarah and her husband Grahame. This is our family’s story.”

Shortly after Sarah was born in 1974 the doctor discovered a problem with her heart, and advised us to take her to a specialist at Cheltenham hospital.   My husband John and I immediately panicked but after a year of tests they finally concluded that it was a heart murmur.

Sarah grew up a normal healthy child and when she reached 18 she needed another check-up on her heart murmur.   We were told that the right side of her heart was enlarged but that there was nothing to worry about. Looking back now, I often wonder if this had been checked further would the doctors have found more, but of course in those days I do not think they had even heard of PH.

Suzanne Calder with daughter Sarah and husband John

Sarah went on with her life, going out to work and socialising.  She met Grahaeme and they moved to Oxfordshire where she started going to the gym every week.  But a couple of times she rang me to say how tired she was getting all the time.  When Sarah caught an infection, which she could not shake off, she went to see her doctor who told her it was just a cold.

The place where she worked had stairs which she was finding it difficult to climb.  She decided to see another doctor and on that day she was late and had to hurry up a hill to get to the surgery.  He could see how out of breath she was and did a quick examination, listening to her heart and checking her nails (which were tinged blue) and her lips which were also blue.  Following two weeks of tests at the John Radcliffe Hospital in Oxford, we were all in the room when the doctor told us about this very rare and serious illness called Pulmonary Hypertension (PH).  What shocked us the most was the doctor saying it was an incurable illness.

Sarah was put on medication in a tablet form, and later sent to Papworth Hospital for more tests which revealed that she did have a hole in the heart after all, however this was actually helping her PH.   She was put on another medication, Iloprost, which had to be injected into a nebuliser and inhaled seven times a day.   Learning how to mix the medication made us all feel we were helping in some way.

As this illness is progressive Sarah has had to give up a lot of things that she used to do, like going to the gym, dancing and cycling but she did not let her illness dominate her life.  She decided to give up working full time and started to take on courses like sewing and writing. 

Sarah was put on Bosentan about ten years ago, which she was very happy about, especially as it helped her through her wedding day.  She has been on one drug trial and done a few things for PHA UK trying to raise awareness and funds.  She now goes cycling as she and Grahaeme bought an electric bike which is great for her especially going up hills.  She also does Pilates and tries to walk as often as she can.

Sarah has had this illness for 15 years.  She is now 40 years old and has learnt to live with it very well. She has oxygen every night and uses a mobile oxygen machine, which she can take away with her at weekends and on holiday. I believe that the best thing any parent can do with a child who has PH is to hope that they grow up with a positive attitude, change their life style if necessary and make changes to help their illness.   Above all it’s important for them to have loving family and friends around them whenever they need them.  John and I have learnt a lot about this illness from going to PHA conferences and keeping in touch with the PHA UK, but above all we have learnt from Sarah to stay strong and be positive.  One day there will be a cure, but until such time we carry on with our lives and will always be there for our lovely daughter, of whom we are very proud.”