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Louise’s Story

Louise's StoryIn 1992 at the age of ten and a half, I was having problems walking and kept getting pain in my left leg. Not thinking too much of it to start with I carried on running around and racing around on my bike. However the pain in my left knee and leg continued to get worse. After an accidental bump whilst out playing my left knee started to swell severely. Mom and Dad had a manic drive to the A&E department to see why after only a little bump my leg was swelling up so much. After a night of x-rays, examinations and poking and prodding Mom and Dad were told that an appointment had been made for me at the Royal Orthopedic Hospital in Birmingham – a Cancer specialist hospital.

It wasn’t until the following Monday that Mom and Dad were called into a private room where the doctors told them that I had Osteosarcoma in my leg and knee; in other words I had Cancer. That night Mom and Dad sat me and my younger sister down and explained why I had been having a lot of pain in my leg and knee. They told me I had a nasty disease called Cancer and would have to be very brave and start fighting it so I could get better and get back to running around.

At the young age of ten and a half I was having to make some important decisions about Chemotherapy, amputations and the possibility of secondary Cancer. I had never even heard of chemotherapy but instantly knew I wasn’t going to like it. The summer of 1992 was the start of three months of chemotherapy at Royal Orthopedic Hospital it was also the start of constant sickness and as with everyone else the daunting prospect of losing all of my hair. September came around and that was when the doctors removed the Cancerous Tibia in my left leg and replaced it with a metal bone….I had become bionic! Then three more months of Chemotherapy followed just to be on the safe side. The 7th December 1992 was the final day of Chemotherapy just four days before my 11th Birthday – what a present! No more being sick, finally I could get up out of bed and finally get rid of my awful wig which I’d been wearing to hide my bald head. I was now officially in ‘remission’ getting my life back to normal. It was difficult adjusting to my new life. Learning to walk again with my new metal leg was very strange but a challenge I was going to master. I had Christmas to look forward to and learnt that I was being taken to America in the New Year with MASCOTS (a charity that made a sick child’s dreams come true) so had all the motivation needed to get back on my feet. However in March 1993 things weren’t as they should be. I was having breathing problems and was taken back to hospital to get checked out.

It was at Birmingham Children’s Hospital this time where I was admitted for X-rays, ECG’s and tests to find out why I couldn’t breathe properly. It was here that we discovered I had ‘dilated cardiomyopathy’ which basically meant an enlarged heart and was a result of all the chemotherapy I had had for the cancer: my dream of going to America was over. I was admitted to Birmingham Children’s Hospital and started on a cocktail of tablets to help prevent my heart getting worse. Not only was I trying to recover from the Cancer but to learn of this new setback knocked me for six. From now on it meant I needed to take tablets to help with my heart condition and I was a regular visitor to both Royal Orthopedic Hospital and Birmingham’s Children’s Hospital.

Summer came and went and I finally got some good news: my dream of going to America wasn’t over. I was lucky enough to be selected to go to Disney World, California in October 1993. Two glorious weeks were spent with 20 other individuals who were going through illnesses including those who had been through Cancer. It was great to know it wasn’t just me who was battling with their health and gave me a massive moral boost knowing that there were other children just like me. I got to go on a tour of Universal Studios, Disney World and loads of other places with the doctors and nurses who all looked after me whilst I was sick – they were like my extended family! It was nice, however, to get back to my mom, dad and sister and let them know all about my latest adventure – this one being a happy one!

It was now back to school for me and to get used to being at High School. It wasn’t always easy as I did stand out and bullies saw this but my closet friends were always at hand to look after and support me through the tough times. Whilst out swimming with my sister and friends I felt my left leg give way underneath me in the pool. Mom and Dad rushed to the pool to find that it had started to swell quite severely so rushed me to the hospital. It was here again where bad news was given; I had bent the metal bone in my leg. A transfer back to the Royal Orthopedic in Birmingham where I was to wait for a new metal bone to be made which would replace the one I had bent! I couldn’t believe it was possible to bend a metal bone however if somebody was going to do it, it would be me! It was back to square one after the operation: physio, getting confident on my feet again and hospital appointments to make sure everything was OK. However I was determined not to let this set back get in my way I was all ready to take my GCSE’s at school and nothing was going to me stop from finishing them. In 1998 I left school and went on to do an apprenticeship in office administration. However things were not meant to work out as in the November of 1998 my left knee was suffering and needed to be operated on… another setback. I put my apprenticeship on hold to return in the New Year. I loved working at the office and met lots of new people and made new friends. One girl in particular became a very good friend and introduced me to a mate of hers called Wayne. Instantly on meeting Wayne I knew we would be more than just friends. We started dating in February 1999 and our relationship grew and grew.

I told Wayne of my health and the problems I had had and was still having. He was always supportive and patient, something other boyfriends never seemed to be. In 2002 Wayne and I took the plunge and moved in together. We were so happy in our new flat. Wayne worked shifts and I was finishing off my apprenticeship training; things couldn’t be better.

It was October 2002 and Wayne had just got home from work that night something strange happened to me and before I knew it an ambulance was taking me to the Manor Hospital. My speech was slurred and I couldn’t feel my right side. I had no idea what was happening until the doctor told me that I had suffered a stroke. Luckily there wasn’t a blood clot on my brain but there was one by my heart which had moved into my chest. This meant another spell in hospital where I had to regain the use of my right side and get use to walking again. All I wanted to do was to go home to Wayne and carry on where we had left off. It took me a long time to get back on my feet but I was determined to not let this get in my way of being with Wayne and look forward to my up-coming 21st birthday. We celebrated my birthday in style, being completely spoilt by Wayne and my family and finally things settled back down. However 2003 had other ideas and I suffered 3 more strokes between January and May. I was back into recovery mode to get over them. Things were tough but Wayne was my rock throughout. The support and love he gave me cannot be described and it was the thought of him that kept me going.

The summer of 2003 was looking positive. I was over the worst of the strokes, and Wayne and I were happier than ever, were engaged and I had found myself a job. I was working for a catering company traveling around different businesses working in their kitchens. Things looked great until one fateful afternoon. Whilst at work I slipped on a wet floor and instantly knew that trouble was ahead. Another trip in an ambulance this time to Birmingham Heartlands Hospital where I was told I had fractured my Femur in my left leg again. I could not believe what was happening why couldn’t I just get on with my life? I found myself back at my second home the Royal Orthopedic Hospital who told me that not only had I broken my femur but I had yet again damaged the metal bone in my left leg. The only thing to do was to have a completely new bone made for my entire left leg. I couldn’t believe what was happening; when things should have been going well for Wayne and I, I was back in hospital only being able to see him and my family during visiting hours. What made things worse was we were due to move into our new home together, and while we should have been celebrating, Wayne was having to cope with the move on his own and still find time to go to work and visit me. I still do not know how he did it all but he took everything in his stride and never once complained. I was so relieved to be out of hospital with a new bionic leg and to be able to settle into our new home and to start planning the wedding we had had to put on hold.

April 2006 saw this day come true, something I never believed would actually happen. Wayne and I tied the knot and set sail on a glorious cruise for our honeymoon. Just as things were going so well I suffered a fifth stroke in July 2006. It was back to square one yet again of recovering and getting the use of my right side back. My speech was quite badly affected after this stroke and it took me a long time and rehabilitation to get things back to normal – or as normal as possible for me! All the time I focused on getting back home to my new husband who, yet again, was my rock and support. My health continued to deteriorate with me having to keep going in and out of hospitals. I was having big problems with my breathing and knew something major was wrong. I carried on as best as I could to make the most of life with my wonderful husband and kept up to date with friends and family, however October 2009 presented the biggest battle for me yet.

I found myself in a new hospital, the Queen Elizabeth Hospital in Birmingham. A consultant here explained to me that I would undergo some tests to see if I was eligible to go on the heart transplant list. Should I not go the list he didn’t expect me to live for more than two years. I could not comprehend any of this: how on earth could I be that sick particularly after everything I had already been through. After many emotional talks with my family and Wayne we decided that I had to undergo the tests to see if I could have a transplant to save my life.

It was in November 2009 that I received the news that would save my life. I was eligible to go on the transplant list; it was now a waiting game. My hospital bag was ready by the door and my phone was constantly on waiting for ‘The Call’. I cannot even begin to describe the feelings and emotions that went on in our house; one minute Wayne and I would be talking about the future and the things we hoped to do together once I was better and then we would remember that I was very sick and might not make it to Christmas.

On 30th December 2009 the fateful call arrived. Wayne, myself and Mom made a mad dash to the Queen Elizabeth hospital meeting my sister there to await the arrival of what could be my brand new heart. I was admitted and given a room where we could all wait and prepare for what could be the biggest operation I have ever had. However by early evening one of the transplant nurses came to see me and explained that unfortunately today would not be my time as the donor heart was diseased. It was such a major blow; I was ready for the operation but had to return home sick. I had said my goodbyes to Wayne and my family not knowing how the operation would go and knew that I would have to do this again should another donor heart come available. It was hard going home and having to wait again for ‘The Call’. I carried on doing as much as possible but found the most trivial of day to day occurrences a massive task. Fortunately I didn’t have to wait long as 20th January 2010 the phone rang again; it was the Queen Elizabeth Hospital with the message of get here now we have a heart! A mad dash in rush hour traffic across Birmingham – something not to be undertaken lightly – was made. I was admitted again and awaited a visit from the transplant team to see if today was going to be the day I got a new heart. I was prepped ready for surgery and spent the morning with Wayne and my family still not knowing for definite if I had a heart or not. It was 5pm now the whole day had passed in a blur of tears, hope, anxiety and fear. When the transplant nurse came in and told me that I indeed had a new donor heart ready and waiting I don’t think I quite heard him: it was all systems go.

At 6pm I had to do the hardest thing I’d ever done in my life and that was to say what possibly could have been good-bye to my beloved husband, my dearest mom and family. I was determined to survive this operation but wasn’t naive and knew that what was about to happen to me was major surgery and there was a big risk to my life. I heard someone calling my name, but didn’t recognize the voice. I could hear machines whirring and beeping but didn’t recognise what they were. My body ached but I couldn’t figure out why until the voice that was calling my name told me that the operation had gone well and I was the proud owner of a healthy working heart. I came round from the anesthetic and reality kicked in – I had had a heart transplant! All I wanted now was to see Wayne and my family to make it seem real. I couldn’t believe what was happening as I recovered in intensive care.

With every day I got stronger and was more and more determined to get back on my feet and out of hospital. After three weeks at the Queen Elizabeth hospital I was allowed home. My new life meant regular trips to the QE to monitor how I was doing and to make sure everything was how it should be. This was great as it meant I got to see all of the staff who had been a massive support to me, Wayne and my family. I have been able to meet other transplant patients making some very dear friends along the way.

As I sit here now finishing off what my life story so far I cannot help but spare a thought for the individual that gave their life in order for me to continue mine. There is not a day that goes by when I do not think of this un-sung hero; this person who has had their life taken from them yet I have been able to live mine today. Without them I cannot even begin to think of where I would be today. I have been given more than a second chance in life and will continue to battle with everything that fate has in store for me not just for myself, for my beloved husband and family but also for my guardian angel that has made today possible for me.

The battle started, the fight was fought and I stand here victorious.

You can help win the battle by registering with Organ Donation.

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