My diagnosis

In March 2018 I was 23 years old and loving working as an occupational therapist. I had a busy social life, had met my wonderful partner and was enjoying holidays. Everything seemed perfect. I developed a ‘rash’ on my legs which spread to my face. I booked a doctor’s appointment, however the doctor informed me this was viral so I continued as normal. The rash continued to get much worse, so I requested to see a different GP who advised me to have bloods taken urgently. I went back to work after the blood test and 4 hours later I received a life-changing phone call. He advised me that there was a hospital bed waiting for me and that my platelets were 3, my haemoglobin 150 and I was neutropenic. This meant absolutely nothing to me and because I thought this was a huge overreaction, I requested to continue at work. The doctor then informed me that I potentially had Leukaemia and I urgently required blood and platelet transfusions. Later that day I had my first bone marrow biopsy which confirmed there was something seriously wrong with my bone marrow. It took 2 weeks to diagnose Aplastic Anaemia after ruling out other possibilities. I then had my PICC line inserted which was my best friend as I hated needles!

ATG

After approximately 4 weeks of receiving blood and platelets 3 times a week, the decision was made for ATG. I had no siblings so this was the advised treatment plan. For me ATG went quite smoothly (despite an allergic reaction!) and it was the build up to it that I found the most difficult!

The wait

For 5 months I waited to see if the ATG had any impact. During this time, I remained neutropenic and was dependent on blood and platelets. I ended up having over 100 transfusions. To stay positive, I booked many weekends away to have something to aim for, which I would strongly advise! My partner also bought me a dog to keep me company.

Although my friends were enjoying festivals, going out and it was what felt like the hottest summer ever, I focused on the positives, set myself small goals and took each day at a time.

During this time, I developed neutropenic sepsis 3 times which felt like a huge step back, but luckily they managed to get it under control and I returned back home after a couple of weeks.

Transplant

In October I was given an appointment to discuss the option of a bone marrow transplant. During that appointment it quickly became apparent that this was the best option and I required it urgently. My consultant put me on the urgent list and within a week they found 2 10/10 matches. I felt like the luckiest person in the entire world! I was quickly given a transplant date and all the preparations began! Unfortunately, my date was postponed and during this time I developed sepsis... AGAIN, but a date was quickly rearranged and off I went for my Hickman line!

I started chemotherapy on 24th November 2018, the week before my transplant date. The anxiety of the week leading up to the transplant was so intense that I almost felt excited which was the strangest feeling. I struggled to comprehend that someone I didn’t know was giving me the chance to get married, potentially start a family and make many more memories with my family and friends. I was fully prepared to lose my hair and every day I gave my hair a tug to see if today was the day I braved the shave, but thankfully that day didn’t come. I luckily didn’t have too many side effects from chemotherapy, and I actually ate so much that I was 2 stone heavier by the end!

The 30th November 2018 was a life changing day for me. It was my transplant day. The build up was bigger than the transplant itself. I was asked if I wanted to wait for my family to come before receiving the transplant, but I just wanted those stem cells in me ASAP! After 12 days waiting for engraftment the day finally came, and hearing that my neutrophils were 0.02 instead of 0.01 was the best feeling! Throughout the transplant process I maintained a positive outlook as I had hope. Every day I focused on the fact it was another day closer to feeling well and returning back to a life which I valued so much! I felt incredibly lucky to be having a transplant, for the NHS and having a match.

Recovery

Recovery since my transplant hasn’t been easy, which is expected, but when you know a stranger has given you the gift of life then what is there to complain about? My views, my outlook, my opinions have changed since this life changing event, which I am grateful for.

2019 couldn’t have been more different than 2018 for me. I have completed the Aplastic Anaemia Trust walk, which last year I had to wait out in the pub because I was so unwell and wave my family and friends off. I returned to work 3 months post-transplant which I couldn’t have predicted. Coincidentally my wedding day will be exactly 1 year since my transplant which I’m sure will be emotional!

Through this whole process I have been incredibly lucky to overcome all the hurdles that I have faced, that my side effects were managed, that my consultants and nurses were amazing and that I had a matched donor. My partner, my family and my friends have been amazing through everything and maintained a positive outlook during the most difficult times. I am incredibly grateful for the friends that sat with me though hours of transfusions, camped out on my floor and kept me in high spirits with meaningless gossip! I am so lucky to have family that made the journey to the hospital every day and advocated for me at times I couldn’t. My partner has supported us all through this and although this was the scariest time of my life, he enabled me to feel content and at peace with the process. I wish I could thank the people that donated their blood and platelets which enabled me to fight this illness. I have had the chance to write to my donor, but I felt that no words could ever explain how grateful I am to her for saving my life.

The staff at Salford Royal and Manchester Royal Infirmary have helped me through this difficult time and the care they give is incredible. My plans for the future are to continue to be open and honest about my journey and encourage as many people as I can to donate blood and stem cells.

I will continue to raise awareness of the impact it has on young adults mentally as I am still dealing with the impact of this illness. I will continue to share my story so others that are in this position do not feel alone, and that although the journey is extremely difficult that life afterwards can be wonderful.

Blog by Beth, Aplastic Anaemia Survivor