Father and daughter's stories
Amy's story, a young person's pituitary journey
It is strange sitting writing this now after having such an eventful, stressful and confusing year. I am now able to drive, I have got much more independence and freedom and I have learnt many life lessons that I would not have done if I had not gone through my illness.
I was diagnosed with Cushing's disease in the spring of 2010 but prior to that I was not the Amy that I used to be. Over a few years I had progressively got more irritable, more stressed out and less active. I used to love dancing, I enjoyed netball, I was good at school and was head girl in my final year.
I went to a college which was quite a distance from my home. The journey took all the life out of me and when I came home at 5:45pm every evening I just did my work, had some dinner and went to bed. I did not communicate with my Mum and found it difficult to speak to my Dad on the phone. My parents have been separated since I was about three so I have been very used to moving from house to house packing bags. However, I no longer had the energy to do this as often. I put it down to exhaustion.
I have always been tall for my age and have had quite a lot of boy attention because I developed early. I remember our summer holiday to Portugal in 2009. I feel that this was probably one of the lowest points that I can remember; my step sister Chloe (she is very tall, a model with long blond hair) was getting chatted up by all of my male friends, all the boys that I fancied were now after my younger sister. It was torment. However much I tried, they were not interested in what I had to say. I was fat! Who would want me? I would come home early from a night out and cry into my pillow until the rest of the family came home and I would cry myself to sleep.
As the months dragged on my hair began to thin. Previously, I had always had comments about how thick and long my brown hair was. I think losing my hair was something that psychologically really unbalanced me. My figure had changed, my face constantly looked bloated, I had stretch marks- everywhere, I was losing my hair, I was bruising for no apparent reason, I had no energy, I could not sleep, and I struggled to concentrate.
I felt really low, depressed and I did not like what I was becoming. I hated myself. Thinking back it seems ridiculous that I had suicidal thoughts. I did not want to live being how I was, what kind of life would I have?
My mum knew I was depressed so she took me to our GP. Unfortunately, like many cases I have heard since, I was misdiagnosed and told that I had Polycystic Ovaries. I, in the mean time, had put myself on a strict diet and was eating just enough so that I did not faint; losing weight was not the problem. But the weight was not going from my face and neither one of my parents could understand why.
I few weeks later I was rushed into hospital with terrible stomach pain. I thought it was my appendix but it eventually turned out to kidney stones. I was moved from Epsom Hospital, to St Helier Hosptal in Carshalton and fianlly to a private hospital in Ashtead. It is still like a distant nightmare that happened to someone else. The doctors and nurses at the first two hospitals did not now what they were doing. One started to prep me for surgery on my appendix before I had even had a scan. Another doctor said I had a kidney infection. Thankfully I have a very protective Dad who told the doctors they were not getting their hands on me till they had decent proof of a diagnosis. My Dad took complete charge and told the nurse that he was taking me to a private hospital with or without her permission. My Step-Mum, had by this time, found me a fabulous surgeon, Mr Gordon, by spending hours on the phone, and also a bed in Ashtead Hospital which in comparison was like heaven.
The ball had now begun to roll, we all knew something was wrong with me and Mr Gordon told us how unusual it was for a girl of my age to get kidney stones so tests were run… Two months later, in a hotel in Paris that I had taken my mum on for her birthday…I got kidney stones again and rushed home on the Eurostar!
Both my Mum and Dad were on a mission to get me better. I have never seen them speak so frequently or get on so well. Thinking back, it was worth being ill just to see them laugh together and communicate. A few weeks later, after having needles after scans after injections after consultations I was finally diagnosed with Cushing's Disease. I had a mixture of emotions. I was terrified, relieved and scared.
I had my AS exams to do; I was still too stubborn to consider retaking the year. I was going to take those exams. My operation was to take place on the 30th June 2010.
Looking back at the pictures that my mother took of me in hospital it is like I am looking at someone else. I am not me. They operate through your nose and my surgeon (Henry Marsh) drained the tumour off my pituitary gland. My nose was very swollen and sore for weeks. I looked immensely unattractive with beak-like bandages on my nose so that the blood did not drip down my face. My mum nicknamed me ‘Beaky!’
I was in hospital for about a week and then allowed home. I could now begin to rebuild my life. It took time. I had to rebuild some relationships too. Some of my friends have been angels; others were too immature to understand what I was going through. It was hard for my Dad too. I did not really see him all that much and I hardly spent any time with his family. It was just all a bit too chaotic for me.
I look back on this period of my life and I do not get upset about it anymore. If it had not have happened then I would not be as strong today as I am now. The pain and suffering that I went through is, perhaps, going to help me in my life, maybe help others and I certainly intend to live my life to the full.
I owe so much to my parents. My Mum became my full time carer; she did not leave me, she would not go out and see her friends, she would do everything for me. She would hold me at night while I cried. She is the most amazing person and I will never be able to repay her. She literally dedicated her year to me and I will always be in debt to her. My Dad, bless him, became my Doctor! He knew he had to learn all about my illness. He knew what test I needed; he knew what symptoms I would have. He found the best hospitals with the best doctors. If it was not for him I would probably still be very ill.
I now have a new life. I look different, I act different. Yes I have got shorter hair and yes I have still got scars and stretch marks but the bigger change is within and that is what is most important. The operations and tests are all part of the course. The ending result is what matters. The biggest piece of advice that I can give is: You are not on your own, keep talking and stay positive, there is an end.
A father's perspective, by Adam Pigott
When I look back at Amy’s illness, I tend to recount the story from diagnosis of Cushing’s. The period before diagnosis is so hard to describe. Something was clearly wrong but we could only focus on each issue.
We ended up treating each symptom as they came and was not aware that there was a more dramatic underlying problem. Instead it was a stealth illness that took about 18 months for the penny to drop; where each symptom arrived at different times. My poor little girl just gradually lost her sparkle, her energy and enthusiasm and it seemed that there was nothing I could do to make her feel better. Amy has described her symptoms in her write-up, so you know how this made her feel. As her Dad, I just wanted her back to how she was but more than anything I wanted her happy.
When it was suggested that Amy might have Cushing’s, prior to locating the tumour and prior to the formal diagnosis from some of the early blood-tests, I read up as much as I could. I was advised not to read too much and indeed a lot of what I read caused me many a sleepless night. I mean that quite literally. I remember many nights when Amy’s Step-Mum and I were still at the computer at some ungodly hour reading article after article. However, very importantly, we read a lot that gave us hope. It is with that in mind that I am writing. If this is being read by anyone who has a child, sibling, parent or friend diagnosed with Cushing’s, please take heart. Each case is different of course, but if the tumour can be removed, the recovery is often dramatic and swift.
Once Amy had diagnosis, I was on a mission to see her cured and for her to have her teenage life back. We were, in a sense, lucky that Amy’s Cushing’s resulted in her having an emergency kidney stone removal. Whilst this is a not a recognized symptom of Cushing’s, it seems to occur more than some Doctors want to accept. The kidney stone caused Amy immense pain and she was rushed into hospital in the early hours as an emergency. Due to her age they could not remove it without causing damage to her Urethra, so she had a stent fitted under general anesthetic. A week later, another general anesthetic, and the stent and stone were removed. To rub salt into the wounds this happened again a few weeks later so poor Amy ended up having four operations for these wretched kidney stones.
However in a way, this was a blessing; as it raised the question as to why did a 16 year old girl get kidney stones? People often suffer for years before getting diagnosed with Cushing’s, whereas Amy’s diagnosis was relatively swift. We managed to find a fabulous Urinologist, Mr Stephen Gordon, who worked out of a couple of local private hospitals and it was he who performed the kidney stone removals and first uttered the name of Cushing’s Syndrome. Mr. Gordon referred Amy to a Dr Andrew Rodin, and endocrinologist who worked out of the same hospitals and also worked with a laboratory in St.Helier Hospital. Dr Rodin put Amy through a barrage of tests and scans. I look back at this period and as a parent this was one of the worst times. Cushing’s had now been explained to me and as such, I did as much research on the illness and the various treatments and tests as I could, but understanding it did not hurry the situation up. I concentrated on managing her illness and chased all the many results, laboratories, PA’s, appointments, Doctors, healthcare insurance and other professionals with the fantastic support of my wife. I made a nuisance of myself but I am confident that the chasing and harassing helped speed it all up. Amy was living with her Mum during this period, accordingly she did all the nursing. So all I, and Amy’s Step-Mum could do was to administer and manage the process from our end. It was good team-work!
Amy had to undergo 4 MRI Scans on top of the various and often lengthy blood-tests to try and locate the tumour and measure the ACTH and Cordisol levels. It was not visible in the first three MRI Scans, so she was sent for a CT Scan to see if they could find this supposed tumour in her adrenal glands or her lungs. This was a result that I dreaded getting. It has been explained to us that a tumour on the Pituitary gland was the “best” option. The CT scan came back negative (this was a good thing), so Amy went for another MRI with an enhancement injection prior to the scan that would help show up the missing tumour. More waiting!
I was involved in a charity Boxing bout in the summer of 2010 (I managed to direct some of the proceeds to The Pituitary Foundation) and I was training in the ring sparring with a guy much bigger than me. When the result came through from Dr Rodin that the tumour had been located in the pituitary gland, I remember crying with joy! I had a break for about 5 minutes, then much to my trainer’s delight I got back into the ring and proceeded to punch the living daylights out of my sparring partner. The point being the tension in me came flooding out and into my own adrenalin! A few other people in the gym must have thought me very odd as I was hugging my trainer, clearly delighted, that they had found a tumour just under my daughter’s brain! Very odd, but it was actually good news!
From then on, I pushed and chased hard. Amy was referred to Mr. Henry Marsh, who is simply an amazing, incredible and wonderfully skilled man. On the 30th June 2010 in the Atkinson Morley Wing of St.Georges hospital in Tooting, South West London, Mr. Marsh successfully removed Amy’s tumour.
What I would say to any parent reading this, who is suffering their child’s Cushing’s as if it was their own, is this: the process from diagnosis to removal or ultimate treatment is a rollercoaster. You will have some very down moments, but keep on top of it all. Chase the doctors, chase the labs, chase it all and leave nothing for granted. For me, Amy’s Mum, her Step-Mum and step-siblings, to see Amy recover as she has done is nothing short of a miracle. Not a single day has passed since the 30th June 2010 that I have not stopped for at least just one moment each day and totally appreciate how lucky we are. Seeing Amy as she is now, knowing what she has been through, makes me the proudest Dad of all! Truly a miracle? I would argue that it was indeed a miracle from above, but also one with a great deal of care and expertise by the medical profession thrown in and a huge amount of strength and determination by Amy. As for Amy’s family…..well, we just nursed, chased up, became a nuisance to the professionals, cried, worried, loved and cared.