I am delighted to introduce Lucy and i would like to thank her for being brave enough to share her journey with us. Lucy's story shows us how courage and strength is needed to just do what most people think are normal everyday things and how you have to push yourself so hard to keep up with the world. Lucy does this with sheer guts and determination as well as grace. Lucy also shows us how vulnerable people living with Pulmonary Hypertension really are when it comes to protecting their family from PAH and also how their families are also vulnerable and how their lives are also affected by PAH. Please remember that family members and carers are more than welcome to join our site.
My Journey, By Lucy
I was in my last year of high school when I started taking the pill. I wanted to be a lawyer and didn’t need an unplanned pregnancy getting in my way. About three months after starting to take it I started showing symptoms. I couldn’t climb a flight of stairs – I sat down half way for a chat, trying to hide how short of breath I was. I signed myself out of school whenever I had a phys ed class and did pretty much everything I could to hide how “unfit” I was. Getting off the couch usually saw me falling on my knees and crawling across the floor for a few metres before I could get myself together enough to stand properly. I also became a total bitch, fighting with my boyfriend and even my mum, which had never really happened before. Then I started fainting, sometimes vomiting at the same time. It’s amazing how many people will walk straight past you, assuming that you’re drunk or something.
I went to my GP – the same one who’d prescribed the pill without even checking my blood pressure – and he diagnosed stress and a vitamin B deficiency. Easy treatment. Mum was really concerned because she had had an adverse reaction to the pill when she took it for just three months but that was 20 years earlier so I disregarded her concerns. Nothing improved so I went back to the GP and iron deficiency was added to the list of possibilities. Still no improvement and there was no way I was getting brushed off anymore. I knew something was really wrong. I was given a referral to a physician. He put me through a barrage of tests. I found out that I didn’t have epilepsy, a brain tumour and a plethora of other different complaints. He did, however, find a slight abnormality with my heart and referred me to a cardiologist as a precaution. I don’t think even he was particularly sure that this would find anything.
To cut a long story short, I had the usual echo, lung function, some nuclear thingy and the right heart catheter, and was diagnosed with Idiopathic Primary Pulmonary Hypertension in January 1998, a month before my 18th birthday. I’d shown positive reactions to Nifedipine during the RHC so that, along with Warfarin, was going to be my treatment. I was to stop taking the pill immediately as it had probably brought my symptoms to the fore very quickly and under no circumstances was I to get pregnant, ever. Prognosis wasn’t good and a heart-lung transplant was probably inevitable within a few years. At 17 you pretty much think you’re invincible, even hearing news like that, but when the doc went out and told my parents in the hallway and they came back into the room, their faces said it all. They thought I was going to die and they were totally devastated. I felt so guilty that I’d made them feel this way.
I know they felt so helpless but went into action trying to do anything that they could. Mum totally overhauled her cooking techniques. Her very English cooking – lots of roasts cooked in lard and a fair bit of fried food – became fresher and she started to read labels, cutting down salt, sugar and fat. She made me tuna salads for lunch every day and to this day she still concerns herself with what I’m eating, although nowadays it’s more about whether I’m eating enough. Dad did what he could to try to get me into Law at Uni. Being so unwell had really messed with my performance at school and I’d messed up my TEE (WA equivalent to HSC) and hadn’t got the grades I needed to get in. Despite the uni officials agreeing with letters from the doctors stating that my illness was to blame for my poor grades it was too late for that year’s intake. As it turned out, I changed my mind on studying Law but at least Dad had something productive to do. I’m so grateful to both of them for all they’ve done and all they still do. Especially now I’m a parent myself I can’t imagine how horrible it must be to believe your child is dying.
From the beginning I had the attitude that the illness wasn’t going to get me. I was going to do everything within my power to stay well. Still, death was always there, sitting on my shoulder, and for a long time I lived as though I was in a race to beat it. I’ve lived my life trying to do as much as I can, sometimes opting for quantity instead of quality. I got married when I was just 20 and somehow that lasted for ten years. I finally went to uni when I was 23 and graduated as a teacher when I was 26. I have worked full time but find that four days a week is enough. I was so incredibly lucky to be able to adopt a baby boy when I was 27. (He really is a miracle and it’s a long complicated story. I wouldn’t want to get anyone else’s hopes up but my dream certainly came true.) Sam is 11 now and for 7 years after my marriage ended I was a working single mum. To some extent I still am as my current partner, wonderful as he is, works fly in fly out and is away for four weeks at a time. So much for those doctors who said I’d never be able to be a mum at all. When Sam was 5 I accidentally became pregnant. I knew immediately and, within a few weeks, I felt so incredibly ill and was certain, even from such an early stage, that a pregnancy would kill me. By the time I had the termination I was feeling a bit better but I’d already made my decision. My beautiful boy who was already dependant on me needed me to be alive, no matter how much I wanted to risk my life for my unborn baby. I know I didn’t have much of a choice but whatever way you look at it, I killed my own baby. I suppose Sam saved my life.
It’s been more than 20 years since I was diagnosed and I’m still pretty much the same as I was back then, no better, no worse, still following the same treatment. I guess the longer I hang in there the more treatment options become available. I’m amazed now that I was never offered any counselling, emotional, nutritional or anything. I’ve sought a bit along the way when things have gotten out of hand but mostly I’ve figured things out for myself. I’ve slowed down in the race against death these days. I take more time with the little things. Smelling the roses, if you like. I take care of myself, eating well and exercising. When I feel well I can walk for hours – even up hills! I try to take every opportunity as it comes along. I travel, rather than bother with trying to accumulate wealth (although I have Sam taken care of if my life comes to an abrupt end). I’ve taken Sam snorkelling on the Barrier Reef a couple of times, and the to Gold Coast theme parks. We’ve been to Kakadu and last Christmas we had six weeks in Europe. But we also walk the dog and play Scrabble and ice cup cakes together. And when I don’t feel so good, he brings me cups of tea in bed. I’ve been involved in community theatre and now I’m learning to Belly Dance. I don’t have the skills to coach Sam’s sports but I score or cook the sausages or whatever needs doing. I have a wonderful partner now who comes pretty close to understanding how I feel. He listens and he makes me laugh. He lets me vent my frustration when my body won’t do what my mind wants it to and he understands that sometimes I just can’t get out of bed even though there doesn’t seem to be any apparent reason and I was fine the day before.
I wish that other people were better at not making assumptions. I wish for awareness and early diagnosis for others so that they have the hope for as good a life as I’ve had so far. I wish that parents didn’t have to see their children face this horrible disease. I wish for a cure. I wish and I wish and I wish.