Pulmonary Hypertension is a rare and serious condition which affects the lungs and heart. If the heart works harder over a long period of time, it begins to work less effectively. Left untreated, PH can lead to heart failure, resulting in death. There is no cure.
My mum has lived with this illness everyday for 15 years. I was five years old when she was diagnosed, so it’s all I have ever known. In this series of photographs I want to showcase how we, as a family, have been fundamentally changed by this event.
"I feel lucky to still be alive 15 years after diagnosis. I'm grateful that every time there's been a deterioration in my health there's been another treatment available for me to try. What works for some doesn't work for others. There are people diagnosed after I was who haven't responded to the treatment as well and have sadly died.
Because Pulmonary Hypertension is so rare and patients often look well, most people don't understand it, or what it's like to live with the condition. Awareness is low- it's not like cancer or diabetes or epilepsy. If you say Pulmonary Hypertension people just think you have high blood pressure and dismiss it. I don't like to draw attention to my illness and hate the thought that when I say I can't do something people think I'm lazy. Tiredness seems to exacerbate the side effects but its hard not to over-do things when you don't want to miss out on activities or feel like you're 'giving in' to the PH.
I am not the same person my husband met and married. Our lives have definitely been changed by my having PH, but he has taken it in his stride and made the best of it for all of us. He is a good man. My illness has brought us closer together and made us realise that life is short and there to be lived.
I'm not going to let it beat me"
“Mum’s illness has impacted her ability to be spontaneous. There always needs to be a plan when she goes anywhere or does anything. We, as a family have to take into account the frustrations of having a limiting illness, being aware of not just the physical strain on Mum’s body but her mental health too.
I do not think Pulmonary Hypertension has limited Mum’s happiness or ability to live a full life. I just think these expectations have been adjusted more to what Mum can actually do. PH has made our relationship stronger, especially in the last few years, and I now cherish the moments I have with her.
I am so proud of my Mum and am proud to be her daughter.”
“Cas having Pulmonary Hypertension makes me think about how precious life and good health is, how we should make the most of everyday, every adventure and everyone we love as we do not know what fate may hold for us in the future.
The frustrations of PH had had both positive and negative impact on our relationship over the years since Cas was diagnosed. It can make it difficult to share experiences together. On the other hand I think it has make our bond stronger as you try to let it impact our lives too heavily.
Most importantly PH doesn’t change the person deep down who I fell in love and married 26 years ago.”
“Mum ensures that Pulmonary Hypertension does not not limit her life in anyway. It’s just resulted in some changes that we cope with as a family unit.
Even though it is a big thing I feel as though it has brought us closer in a way. PH is just a normal part of our lives. Although I may not say it to Mum often, I love her very much and if anything her illness has strengthened our relationship."
“My Lovely Daughter.
It must be very difficult to live with this condition and the restraints it puts on daily life. I have been and remain ready to help in any way but Carolyn’s determination to manage her life has meant that requests for help are far and few between.
I am very proud of her and the way she is coping: from the girl who was always squeamish to the woman making her own cassettes. She is remarkable and never fails to amaze me”
"Cas is a very strong resilient woman who has faced her illness head on. She has persevered over the years to try not to let her limitations have an impact on the lives of her family and friends. Yet, PH has obviously had an impact on family life because of the things Cas could not do. But she has doubled her efforts in doing the things she could and as a result, with the help of Adrian , James , and Erin they have developed a strong, loving and loyal family unit.
I like to think that my relationship with my daughter-in-law has always been strong, but taking a lead from Cas herself I have tried not to let her know my worries and have tried to support her as best I could. Living so far apart I haven’t seen the daily issues that occurred and she has never asked for a lot of help but I hope she knows that I would do whatever I could for her. Cas is a very important part of my life and I love her very much."
“Life for Cas and her family in 2018 is vastly richer and more normal than I had thought it was likely to be when she was diagnosed in 2003, which is a statement to her strength of character.
We have known each other since we were eleven, so we’ve seen each other through lots of different phases of our lives. From a practical perspective, adjustments have to be made, but I don’t feel it’s made a difference to the substance of that friendship.”
