Suzanne Calder’s daughter Sarah was diagnosed with PH on her 25th birthday, and now 48, she continues to inspire her parents. Suzanne wrote to us here at the PHA UK to share her family’s experiences.
Where do I start? Firstly, our daughter was born on the 25th of October 1974, in a small hospital in the town of Lydney, which is situated in the Forest of Dean, Gloucestershire. She was a beautiful baby with fair hair and blue eyes, which later changed to brown. As time went by, I took her for her first checkup with the doctor. He examined her and told me he thought she had a slight heart murmur., so advised us, my husband John and myself, that she should see a heart specialist.
John and I immediately panicked with this news, and the doctor made an appointment for us to take her to see a specialist at Cheltenham Hospital. We took her to her appointment, where they did tests and blood tests, etc.
This went on for a year, going into the hospital for different appointments. They finally told us that it was a heart murmur, and not a hole in the heart as they first thought.
Sarah grew up and when she reached the age of 10 years, we moved to Folkstone in Kent, time went on, and she started a new school, and everything seemed alright.
When she reached the age of 18, we received a letter from the doctor saying that Sarah needed another checkup for her heart murmur. I went with her to see the doctor after she had some more tests done, and he told us that the right side of her heart was enlarged, but that there was nothing to worry about, and for Sarah to carry on as normal.
Looking back now, I often wonder if this should have been looked at more, and what they might have discovered. But of course, in those days, I’m not sure if they even knew much about PH.
Sarah went on with her life, going out to work after she left college and enjoying herself with her friends, where she met Grahaeme who was in the RAF, at the age of 22.
Sarah and Grahaeme moved to Oxford and rented a lovely house, which was very cosy and comfortable. Sarah sorted out a doctor and found a job in Swindon. We kept in touch with them, and I enjoyed the weekly telephone chats that Sarah and I had.
Sarah joined the gym and went every week, but a couple of times she phoned me to say how tired she was getting all the time and felt so unfit. As time went on, we were concerned something was not right, and Graham was concerned as well.
It wasn’t until Sarah caught a cold and an infection in her chest, which did not get better, that she decided to book an appointment with the doctor. Unfortunately, the doctor just thought it was an infection and sent her home. The doctor did check her for asthma, and this came back negative. No further investigations were made.
Another week went by, and Sarah was still not feeling well. She was getting out of breath all the time, where she worked. Her office was upstairs, and she had to climb quite a few stairs every day to reach it.
Sarah rang me and her dad and told us how she was. We were very worried about her, especially with the heart murmur she had. We said she should go back to see the doctor again, but she already had made an appointment to see him.
To get to the doctors she had to walk up a rather steep hill., and as she got there on time, she went straight in to see him. It was not her usual doctor but a different one. He noticed how out of breath she was, and coughing. He asked her to sit down. He examined her straightaway. I’m sure he wondered why such a young girl would be as out of breath as she was. The doctor noticed her lips were blue and he looked at her fingernails and noticed they were also a tinge of blue.
Also, he listened to her heart murmur as well. He immediately told her he would make an appointment for her to go to the Radcliffe Hospital for some tests.
Sarah was in hospital for one week. John and I would travel down from Folkstone to be there for her and Grahaeme would be there also. The last test they did was an angiogram, and the results were heart-rendering. The doctor came out and we all sat around the bed to hear the results.
He said that Sarah had a very rare illness called PH and that it was life threatening and there was no cure. She would have to go on medication for the rest of her life. The doctor also said she should not have children because it will put a strain on her heart as well as the baby.
This was the most devastating news, especially for Sarah at the age of 25. We were all very upset.
Sarah had just turned 25 years of age on the day she was given this awful news. Her whole life ahead of her, to then be told that she may only have another two years without going on medication.
John and I went home but we did not want to leave her in hospital after that devastating news. Grahaeme was with her and so we left them to drive back to Folkstone. I cried all the way home and John was very quiet. That was the worst day of our lives.
We went back to see her once she was home, and the doctors had started her on a medication by tablet, which was okay, but did not really help her.
Not long after, she was referred to Papworth Hospital in Cambridge, and they were brilliant. They knew all about the illness and did more tests on Sarah to find out what sort of medication she would need. She had to use a nebulizer seven times a day, and had to keep the medication in the fridge all the time. This had to be made up every time. They even showed us how to make it up as well.
This was very hard going for Sarah. Having to take this medication seven times a day was very tiring and time-consuming, as well as having to plan every day where she was going and when to take the medication.
She did have her bad days, I know, as anyone would. But she kept going as she knew she had to.
Sarah and Grahaeme eventually moved to Lincolnshire, Stamford, which was near Papworth. She had more tests and discovered that she did have a hole in her heart after all, but in a bizarre way, this was helping her PH, as the doctors decided to trial operations on patients with PH by putting a small hole in their hearts to ease the pressure.
As time went on, Sarah had to give up trying to work, but instead concentrated on her home, Grahaeme and her friends. Some of them didn’t understand her illness, and what she could and could not do.
Sarah had to give up lots of things as she adapted herself to a different life. She found new ideas and things to do. She decided not to let her illness dominate her life. She always has been a sensible person and so she learned new things, like taking up sewing and going to sewing classes.
She bought herself a sewing machine and has made many lovely things for her home and even clothes. She made new friends also at her sewing classes.
Sarah also took up writing sometimes and she loves drawing too. Grahaeme bought her an electric bike so that she can go out cycling with him in the summer. Sometimes when going up hills, she would even pass Grahaeme, if she could make her speed quicker. They always had a laugh about that.
She eventually managed to get a Mobility scheme car and that was a godsend for her, especially for all her hospital appointments.
Sarah has a nice life with Grahaeme and he looks after her on days she is tired by doing the dinner when he gets home from work. Most of the time Sarah does it all herself, although she has had to get help with cleaning the house.
They go on holiday together and she takes a small oxygen machine with her. She has oxygen every night which helps her the next day when they go on holiday, even though Sarah cannot climb hills or walk long distances or go running, which is something Grahaeme loves doing.
She is quite happy to sit around the pool with a nice book. She has never wanted to stop Grahaeme doing the things he loves just because she can’t do the same.
About five years ago, they brought home a little springer spaniel puppy and named her Poppy. She is gorgeous, and has the most beautiful eyes. She’s mostly white and long haired but with black ears and black over her head and has a little tuft on top. She is such a friendly loving dog. Poppy can be a handful for Sarah at times, but when Grahaeme is home, he will take Poppy out.
Sarah does go out with her every day and it is exercise for Sarah as well as Poppy.
Sarah is now 48 years of age and has had PH for many years. John and I are very proud of the way Sarah has dealt with this awful illness.
We worry about her all the time, whether she has a cold or feels unwell. She had COVID twice but recovered well. And of course, the vaccines helped.
Grahaeme looks after her well but never treats her like an invalid. He knows when she is having a bad day, or is feeling very tired and he makes her rest. As John and I live so far away, we cannot always be there that quickly.
We are thankful that Sarah has such a loving husband and very good friends to help her. Sarah has a dog walker now once a week, which helps enormously. As her parents, whenever Grahaeme is away for his work, we go up to see Sarah and stay for a few days to help her with Poppy and other things.
Over the years, John and I have been so proud of Sarah living with this debilitating illness. She never lets it get on top of her but knows what she can do or can’t do.
As a parent, everyone knows that worrying about your children never goes away, whatever age they are, but the best thing we can do is just be there for them at all times. Even if it’s just a phone call for a chat, helping them in any way they need it.
Sarah is very independent, but realises that when she needs help, she is only to ask. She has the attitude that yes, life has dealt her badly, but she has picked herself up and is determined to live her life as well as she can.
Sarah has, over the years, gone on trials for new medications, helped with funding for the PHA, a UK charity, of which we are all members.
She goes usually every year for her checkups at Papworth Hospital and sees the doctors.
To finish my story, I think the best thing any parent can ask for with a child who is diagnosed with pulmonary hypertension is that they grow up with a positive attitude towards it. They may have to change their lifestyle, learn new things, and ask for help whenever they need it.
John and I have learned a lot concerning this devastating illness. And over time we have learned from Sarah to become strong like her and to carry on with life with a positive attitude, always.
One day with the help of funding new trials and medication there will be a cure, I’m sure. But until that day, we will carry on by being loving and caring parents always. We are very proud of our daughter and always will be. Thank you for reading my story.