Gavin’s Story | Living With Aplastic Anaemia
Gavin Douglas from Buckinghamshire has been living with Aplastic Anaemia (AA) for more than two decades, receiving lifesaving treatment under the care of King’s College Hospital’s haematology team. Here Gavin, aged 55, shares his experience of being diagnosed with Aplastic Anaemia and also living with this blood disorder.
Back in 1992 I was giving blood when a nurse noticed that my blood didn’t sink when it was tested. A further test through my GP revealed that I had AA, and I was told by medical staff that I would need a bone marrow transplant within months. The chance of success of a bone marrow transplant was 50/50 at that point. However, during the following months I stabilised and started long term treatments instead.
I coped well for 20 years, playing sports and working in an office job, not letting it hold me back. I did take time off for medical check-ups, but not many for sickness. I went on to have steroid treatment which helped to keep my bloods stable for some years. But by the age of 49 my blood counts really started to deteriorate. Running and football had to stop, and my cycling slowed down. The support and understanding of my wife and family kept me going through all of this.
I received ATG therapy at St Bartholomew’s Hospital, but due to bone marrow insufficiency it didn’t help my blood counts go up. I learnt that King’s were the specialists in Aplastic Anaemia, and after a particularly bad set of results I got in touch with the haematology department. On meeting Professor Marsh and Simon Slade they alleviated all of my worries and I was then under the care of King’s.
In late 2018 I had red cell and platelet transfusions and went on to have a bone marrow transplant. Since then, I have been back to King’s for any issues relating to the transplant. Patient care is fantastic and the knowledge base across all staff at Kings regarding AA has been exemplary. My time on the ELF and LIBRA Ward was a breath of fresh air. It was spacious, clean, well-staffed and pleasant. It undoubtedly reduced my anxiety levels, which I’m sure helped improve my recovery from infection.
From my experience the LIBRA funded ward enhancements are vital. They make such a difference to patients who have to stay in a small room for many weeks. A better environment will always improve someone’s stay and help to reduce personal anxiety in all situations.
Following treatments at King’s my quality of life has improved. Before the transplant I was overweight, breathless and unhappy with the way I was. Following the transplant exercise gradually increased over time. 4 months later I could ride an electric bike. After 12 months I finally felt ‘normal’ and my counts were pretty good. I started riding a standard bicycle again, it was marvellous. Since that point I have improved what I eat and started exercising. By counting calorific intake and macro nutrients, and also by training with a professional cycling coach I am now fitter than I have ever been. I have also gone on to lose 41kg!
In 2022, three and a half years after the transplant, I competed in the British Transplant Games on behalf of King’s. I entered the Cycling Time Trial, the Cycling Road Race, and the 5km Run. I trained intensively for two months. I got Silver in the Road Race & 5km run, and I was delighted to get Gold in the time trial. I was then selected to represent Team GB at the 2023 World Transplant Games in Perth, Australia. Sadly, I can’t make it, but to be chosen was an honour!
George’s Testimony | Acute Myeloid Leukaemia
George from Gravesend in Kent was thousands of miles apart from his wife Mary when he was diagnosed with acute myeloid leukaemia (AML). His story takes us from Kerala in India and back to the UK where the world-renowned haematology team at King’s College Hospital arranged a lifesaving stem cell transplant. Here George, aged 56, shares his incredible story:
I first realised that I was unwell during a stay in Kerala with my parents when I suddenly blacked out in May 2020 and was taken to hospital where tests revealed my blood count was low. I checked with my family doctor in a speciality hospital in Cochin where further tests confirmed a variation in blood count. The doctor referred me to the Amritha Institute of Medical Sciences where blood and bone marrow tests were conducted and I was diagnosed with Acute Myeloid Leukaemia (AML).
There were no signs or symptoms at all other than that one black out and I was healthy and active. Being diagnosed in India was tough as my wife and daughters were all in the UK. Covid-19 was spreading through India and due to lockdown I was unable to return in March 2020 as planned. It was difficult to share the details with family initially, but my faith kept me strong. My family gave me encouragement, support, and confidence to face the challenge while in India until I landed back in the UK with a smile and positivity.
I was offered treatment in India, but I decided to only have some initial transfusions in the hope I would be able to return to the UK for chemotherapy and more extensive treatments. My wife Mary and our friends were amazing, and they managed to make arrangements for me to travel back to the UK in June. Darenth Valley hospital in Kent admitted me on arrival. Later that month they began treating me with chemo for AML and it wasn’t until November that I was referred to King’s for a bone marrow transplant.
In the mist of Covid-19, my brothers were not able to do the tests sent out for the donor match from Kerala, as all centres were closed. Even though they would have been a match, travel was impossible during lockdown. However, a miracle occurred and a donor was identified with a 9/10 match in the UK and we are so grateful to him/her for their kindness. The stem cell transplant in December 2020 has given me new life to move forward with day-to-day actives.
There are many challenges and I am slow and tired compared to how I used to be and I am currently unable to work, but I am positive and undergoing physio at King’s. Each day is a great blessing for me, and to have Mary, our daughters, friends and family close is priceless. We hold on to this saying ‘and call upon ME in the day of trouble. I WILL deliver you, and you shall glorify ME.’
The level of personal care provided by King’s for my family and I has been amazing. Our special thanks to Dr Victoria Potter who always took time to listen patiently, investigate, advise, and clear doubts and concerns ahead of my bone marrow transplant. I would also like to thank the haematology team and all of the staff who are involved in my care.
I do feel we need to arrange awareness of blood disorders. For instance, in my case there were no symptoms at all. I feel people try to find details online when hearing the words acute myeloid leukaemia or AML and end up with more fear, which in turn makes them lose hope. That is why it is essential to gain expert advice from health care professionals and through charities like LIBRA who are helping to make a positive difference.
Matthew Mortimer | T Cell Lymphoma
Matthew Mortimer from Benenden in Kent receives ongoing treatment for T Cell Lymphoma after a diagnosis seven years ago. Now at 55 years of age Matthew is able to lead an active lifestyle thanks to the treatments available at King’s College Hospital. He recently shared his story with LIBRA:
Matthew was successfully treated for Hodgkins disease in 1987 with a course of radiotherapy and he began to keep a close eye on his overall health and wellbeing. In early 2015 he noticed that his lymph glands were enlarged and he quickly arranged a GP appointment.
During the appointment Matthew was told not to worry, as enlarged lymph nodes were not an unusual symptom to have over the winter months. However, a few months on and his glands had still not settled back to normal. Matthew’s GP then referred him to a local haematologist who arranged a needle biopsy which came back negative.
Despite further reassurance Matthew was still concerned as he felt that something was not right with his health. After a full biopsy that summer he was eventually diagnosed with T Cell Lymphoma. Matthew made his first trip of many to King’s College Hospital and he was taken into the care of the world-renowned haematology team. Initially he underwent some conventional treatments including chemotherapy which was effective for a short time. He went on to receive a life changing allogeneic stem cell transplant in September 2016.
I believe the transplant has made the most difference to me throughout my treatment. My sister Eve was the donor match and I would like to thank her – I am so grateful. During our time at King’s College Hospital we found out about LIBRA and my whole family have been inspired to support the charity. I would like to thank my family for helping to raise funds for LIBRA through bake sales and further activities so new and improved treatments can go on to be created to help patients like me.
Following the transplant Matthew’s disease continued to progress which was anticipated and he was referred by haematology experts at King’s College Hospital for radiotherapy at Guy’s and St Thomas’ Hospital. The disease was stable for some time, enabling him to enjoy a more active lifestyle. In the meantime, specialists were looking for a suitable drug trial for Matthew and an opportunity came up. Matthew went on to take part in two clinical trials at University College London Hospitals. Since then Matthew’s disease has continued to progress, so the team at King’s College Hospital have provided a palliative care plan to include more radiotherapy which provides relief for symptoms. Specialists are also putting Matthew forward for further treatment trials in the hope that they can once again stabilise the disease.
Matthew looks back on his experience and said:
I have always found the transplant and haematology teams at King’s very dedicated and focused. The consultants are on hand to provide support and they do such a great job in a very busy environment. I have stayed on the ELF and LIBRA Ward twice and I have visited the fantastic LIBRA funded Ambulatory Transplant Unit where I received donor lymphocytes following my transplant. It’s a lovely quiet space and makes all the difference when having outpatient treatment.
Looking to the future he added:
My journey is about fighting on and I won’t give up. The consultants support me and continue to put me forward for new clinical trials. Living with such an aggressive illness is tough, but I am still enjoying the simple things in life such as cycling and will continue to do so. It is due to the treatments available and encouragement from LIBRA that I am able to carry on as I am.
David Smallwood | Stem Cell Transplant
David Smallwood survived a very rare and aggressive form of Lymphoma thanks to the treatments available at King’s College Hospital. The 67-year- old from Bromley was diagnosed with Mantle Cell Lymphoma at the Princess Royal University Hospital (PRU) in Farnborough.
Despite six cycles of chemotherapy at the PRU, David was told he may only live for three more years. Consultants at the PRU, in conjunction with those at King’s, decided to try another treatment program. They planned to arrange a reduced-intensity stem cell transplant if a suitable donor could be found. Here, David tells us about his journey:
Luckily for me my older brother Jim was a match. He travelled over from Belfast and donated his stem cells at King’s. The nurses at the unit were fantastic with Jim. He normally avoids hospitals and on this occasion he was even more nervous having been told that they would have trouble finding suitable veins.
As it turned out, the anticipated seven hour ordeal ended up as a mere three-hour painless procedure. It wasn’t that much different from donating blood or receiving a blood transfusion. I went on to have my stem cell transplant, followed by five weeks in isolation.
The care and treatment I received from the staff at King’s, including the consultants, nurses and physiotherapists was professional and exemplary. The aftercare left nothing to chance and I was regularly monitored at both the PRU and King’s. Now almost six years later I have been discharged from King’s Lymphoma Clinic and it feels amazing!
Daisy Turner | Cord Blood Transplant
As a teenager Daisy was diagnosed with myelodysplasia (MDS) with refractory anaemia – a condition which affects the body’s ability to produce red and white blood cells. To tackle the blood disorder Daisy underwent a successful cord blood transplant at King’s College Hospital. This involved the use of blood, rich in stem cells, which had been taken from the umbilical cords of newborn babies and frozen.
When a successful blood match is found, as in Daisy’s case, stored cells are transplanted into the recipient through a drip. Although Daisy’s transplant at King’s took only eight minutes, it was followed by a week of intense chemotherapy to destroy her existing bone marrow. Daisy decide to share her experience in the hope that it will benefit other patients with blood disorders.
King’s College Hospital quickly became my safe house, but it was easy to feel as though I had lost complete control. So every morning, I woke up, showered and put on my makeup. This was my way of holding on to my dignity.
I’ll always be grateful to the donor as well as Professor Ghulam Mufti and the team at King’s. I feel so privileged to have had such a revolutionary new treatment.
I find it amazing to think where I am now, given what I’ve been through. The support I’ve had from my family and friends is incredible, and humbling. I am really excited about the future, and relieved that I can start to plan for what happens next in my life. I hope patients will read my story and feel inspired to keep fighting.
Rizwana Rashid | Bone Marrow Transplant
King’s College Hospital has consolidated its bone marrow transplant services with Guy’s & St Thomas’. This makes the service the largest of its kind in the UK, with specialists at King’s now performing more than 200 transplants every year. Thousands of patients like Rizwana have benefited from their expertise.
Rizwana was referred to King’s following routine blood tests which confirmed that she had a form of leukaemia. This was a huge blow to Rizwana who had lost her sister to a similar condition and she was convinced that she would die within a few years. By the time Rizwana arrived at King’s, she was very unwell.
After a thorough review of her condition, including blood tests, bone marrow biopsies and x-rays, a specialist blood cancer team decided the best course of treatment would be a bone marrow transplant. Nine months later a match was found through the Anthony Nolan charity and Rizwana was able to have a transplant.
I had little energy. It seemed that my mouth was constantly sore due to painful ulcers and my skin had developed open and sore wounds. However, I pulled through and I am now living a happy and healthy life with a positive future ahead of me. I hope that many more patients have my experience as opposed to my sister’s. I found the level of knowledge and understanding at King’s to be in a league of its own. The care and genuine compassion all staff have shown is unique and the haematology team never gave up on finding a long-term solution for me. Thanks to LIBRA I have felt empowered to share my story and I hope it inspires others to help raise funds that are put to such important use.
Harriet Usher | Acute Lymphoblastic Leukaemia
As Harriet struggled to breathe, specialists at her local hospital suspected she was suffering with pneumonia but they soon realised it was not the case. The hospital carried out a bone marrow aspiration and swiftly transferred Harriet to King’s College Hospital for further diagnostic tests.
Experts at King’s diagnosed Acute Lymphoblastic Leukaemia (ALL) which was a huge shock to Harriet and her family. A team of medical experts drained 2.5 litres of fluid from each of Harriet’s lungs and a litre of fluid from around her heart. From then on she had chemotherapy nearly every day for just over 2 years.
The haematology team were amazing and so supportive throughout my treatment. I stayed in hospital for the first 8 week phase of my treatment plan but I was allowed home during the second phase of treatment. It was very intense as I had to travel to King’s every day for chemotherapy but my family kept me going.
We didn’t know whether the treatment would be successful but it saved my life. After my treatment finished I decided to raise funds for LIBRA as the charity is so close to my heart. The haematology team saved my life and by supporting LIBRA I can help others like me.
Trevor Jones | Chemotherapy and Bone Marrow Transplant
For many years Trevor Jones suffered with a rare condition called Hypoplastic MDS (myelodysplastic syndromes), where the bone marrow does not produce sufficient new cells to replenish blood cells. When Trevor’s blood counts were low, he needed transfusions of red blood cells and platelets.
His condition developed into Myeloproliferative Disorder, causing blood cells to grow abnormally in the bone marrow. Doctors discovered that Trevor was suffering with Acute Myeloid Leukaemia and he was swiftly admitted to King’s College Hospital.
He endured a six month treatment plan, including four intensive rounds of chemotherapy and a bone marrow transplant. Trevor still visits the hospital for routine blood tests and is making good progress. He is also a dedicated LIBRA supporter and he has worked tirelessly to raise vital funds.
My family, friends and I spent a year raising funds for LIBRA, totalling around £20,000. We decided to raise funds so that King’s can continue to develop new treatments for other patients with leukaemia and other blood disorders. We have also helped increase awareness about the need for more bone marrow donors in the UK.
King’s were unable to find a suitable donor for Trevor in the UK, but luckily they were able to source a close match in Germany. Without the bone marrow transplant Trevor wouldn’t be here today. It’s so easy for people to join the British Bone Marrow Registry and by doing so they could save a life one day.
Billie | Leukaemia
Inspirational King’s patient, Billie, recently donated £3,000 to LIBRA through her own charity ‘Billie’s Fund’. The 30-year-old, from Beckenham in Kent, was diagnosed with leukaemia in at the Princess Royal University Hospital (PRU) and was quickly transferred for lifesaving treatment at King’s.
I have had five cycles of chemotherapy at King’s, a total body irradiation which took place at Guys, and then I was back at King’s for a stem cell transplant. Due to a weakened immune system, I have also had countless blood and platelet transfusions as well as antibiotics. My progress is now closely monitored through bone marrow biopsies.
I’ve had lots of wonderful doctors, nurses, health care assistants, kitchen staff and cleaners involved in my care. At King’s it’s all the staff that have encouraged me along my way and kept my spirits up.
When I was first admitted to King’s I stayed on the ELF and LIBRA Ward. The nursing staff helped me and my family overcome what was a very daunting experience. Following my transplant, I was admitted to the ward for the third time for more than seven months. The environment is positive and there are so many lovely people on ELF and LIBRA that make staying in hospital for such a long time so much easier.
Donate to Billie’s Fund in aid of LIBRA online at www.billiesfund.org/donate/ and select LIBRA as your beneficiary