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Marrow--making a difference from both sides


Nadia Stock and Ruth Pearson got involved with Marrow, a project that recruits people to the Anthony Nolan Trust's bone marrow register. But they did not realise just how big a part the organisation would play in their lives; Ruth was asked to donate and Nadia discovered that she needed a transplant



DR GOPAL MURTI/SPL

I first heard of the Anthony Nolan Trust when, in the synagogue for the Jewish New Year, I found a leaflet on my seat advertising a bone marrow drive for a student with leukaemia. I recognised the picture instantly; Karen Morris had been my leader on summer camp several times, but only then did I first heard of her illness. At the time, I was too young to join the register, but when I started at Newcastle Medical School in 2000 and heard about Marrow, I knew I wanted to get involved. I joined the register, trained as a counsellor, and in October 2001 helped at my first clinic.

Facing the diagnosis

Roughly 12 months later, I was still trying to juggle my usual 101 extracurricular activities along with my degree, but I was feeling increasingly tired and unable to keep up. I even resorted to taking afternoon naps. When I complained to friends, they tried to convince me that this was perfectly normal behaviour for students, but I had not taken a nap since my second birthday, and I knew something was not right. I put off going to my general practitioner for several weeks--I told myself I was far too busy to be ill. A breathless weekend in Scotland, training with the mountain rescue service, finally pushed me.

My doctor took a blood test, and I telephoned to get the results a week later. I was pancytopenic. In days I had been referred to the haematology unit and had my first bone marrow biopsy taken. I was diagnosed as having idiopathic aplastic anaemia (bone marrow failure).

I got through my end of second year exams two weeks later on a cocktail of blood and platelet transfusions and high doses of caffeine. It was hard to convince myself that I was ill, as apart from the lethargy and bruising I felt healthy. I knew that whatever happened, however, I would be dependent on the haematology service for some time. I decided to intercalate to allow things to stabilise before starting my clinical years. I have timetabled blood and platelet transfusions in between lectures when needed and my progress is monitored weekly.

Worldwide search for tissue match

When I was first diagnosed, my younger brother and sister were tissue typed to see if they could be bone marrow donors, but neither of them proved to be a suitable match. This came as no surprise; I have often doubted that my siblings are of the same species, let alone be compatible with me for human leucocyte antigens.

Option two was immunosuppressive chemotherapy. I had my first course in August 2002 and my second round six months later. Neither course was successful in achieving a remission status, so, next month I will have a matched unrelated donor transplant. Fortunately, although no suitable donors could be found on the British register, several donors were found from Germany and North America. I find it strange enough to think of all the different people who have provided their blood for my transfusions but it is even more peculiar to know that somebody's marrow will be flown halfway round the world to play such a crucial part in my life. The last few days as I prepare to go into hospital have been fairly stressful, as I have been warned that the donor may pull out through personal or medical reasons right up until the last minute. I feel understandably indebted to the donor for going through the bone marrow harvest, but also to all the people who work to put the chain of events together at Marrow and at the Anthony Nolan Trust.

Staying positive

Being a medical student, I probably know more than the average patient about the risks involved with the transplant, but I keep things in perspective and stay as optimistic as possible. I am sure that I am far from the easiest of patients, and I tend to drive my consultant and most of the nurses mad with barrages of questions. I am not looking forward to my time in isolation while I wait for the transplant to engraft, but it will be worth it to get back to a stage where I do not have to schedule my life around hospital visits and blood tests, and I can get back to studying medicine from a student's perspective rather than a patient's.

The future: raising the money

I still often volunteer at Marrow clinics; it helps me feel like I am doing something positive, not only for myself, but for the many other patients that I regularly meet. I have made and also lost many friends on my ward over the past 18 months, and this has been one of the best and one of the hardest parts of my treatment. It keeps me determined to keep on raising money and awareness for Marrow so that many more patients can be helped. This year I hope to run my fourth Great North Run (a half marathon) and I am aiming for a record amount of sponsorship. It takes place just two months after my transplant, so training will be a little harder than usual, although my ward does have a treadmill and an exercise bike which I intend to make full use of.

Throughout my treatment I have been adamant that I do not want pity or to be a sob story. Many positive sentiments have come out of this; I have had letters, emails, and telephone calls from friends whom I had lost touch with, I have become more involved with MedSIN and Marrow, and I have met so many remarkable people. Fundraising for the Great North Run combined with stories I heard at the national Marrow meetings have shown me what a difference the personal angle makes to recruitment.

I have been told many times that I am an inspiration, but I am just getting on with life as best I can. Marrow gives medical students the chance, before they are even qualified, to actually make a difference to people's lives. It has certainly changed my life in more ways than I could have imagined.

What is Marrow?

Marrow is a project that works in conjunction with The Anthony Nolan Bone Marrow Trust to offer all students in the United Kingdom the chance to join the stem cell register. It was set up in Nottingham in 1998 in conjunction with the Medical Students International Network (MedSIN) and has now spread to almost every medical school in the United Kingdom.

Trained volunteers, who are mostly medical students, run Marrow groups. The volunteers coordinate donor recruitment clinics across the country to guide students through the process of joining the stem cell register. Joining requires medical forms to be completed a and a short counselling session where any questions are answered and the process of bone marrow donation is explained. A small blood sample is then taken to be sent away for tissue typing.

More donors are urgently needed, especially men and those from ethnic minorities or mixed race backgrounds. Donors should be 18-40 years old and in good general health.

More information at www.marrow-uk.org

Nadia Stock third year medical student, University of Newcastle
Email: nadia.stock@newcastle.ac.uk





My story began nearly two years ago, when the Marrow group in Leicester was just beginning to run its first few clinics. I was trained as a counsellor at the first training session, but little did I know just how involved in the project I was to become. At the first training session for counsellors, we had an inspirational talk from a guy who had donated bone marrow twice--first from his pelvis and then from his sternum. I remember looking at him in awe thinking that he was such a hero but secretly feeling quite secure, happy in the knowledge, that the chances were slim that I would actually be matched.

Getting the call

Six months after joining the register, I got a letter informing me that I was one of a number of potential matches for a patient, and the letter asked me to provide more blood samples for tests of compatibility of my human leucocyte antigens. I learnt at training that new blood on the register is likely to come up with a few matches, so after one of a friend's first attempts at venepuncture, my samples were sent off and I did not think much more about it. Another three months passed by, and I got a call from the Anthony Nolan Trust. I was the best match for this patient: "How do you feel about donating bone marrow?" Well, what do you say?

At this stage, the go ahead for my donation was dependent on the patient's health, and how they responded to the treatment they were receiving over the next few months. The proposed date came through just three weeks before the donation. The trust wanted me to have a bone marrow harvest. Although usually donors are given a choice between the harvest and stem cell collection, it was thought that this was the most appropriate for my recipient. I was asked to attend the Royal Free Hospital in London for a medical check, in which I had countless blood tests and then donated a unit of blood that would be given back to me after the operation as an autologous unit. The consultation was thoroughly reassuring; it was nice to know I am fit and healthy. At this stage, I was given the details of the patient. She was a woman living in the United Kingdom with follicular lymphoma; I began to form an impression of an actual person in my head. It is strange that someone out there just happens to share the same little proteins on cells as I have and is soon going to develop my entire immune system in her body, yet I could walk past her in the street and still not know her from Adam.

The operation

My next trip to the Royal Free was for the operation itself. Beforehand I was a little anxious but also quite excited. I had never had any kind of operation or general anaesthetic before, and although I have been in an anaesthetic room countless times, this time was rather more daunting (for me and the staff when I kept demanding to know what they were doing). I was going in fit and healthy with no serious medical history, but I knew I would be coming out feeling pretty shitty. But on the positive side, it gave me a warm and altruistic glow. This was such an amazing opportunity to really make a difference to someone's life. Maybe not save it, maybe not even prolong it, but give them hope and help them feel as though everything that could be done was being done. How many medical students actually get to make that kind of difference in their training?


The operation lasted roughly an hour and a half. During that time they took one and a quarter litres of bone marrow through about 90 holes in either side of my posterior pelvis, gave me intravenous fluids, the autologous unit of blood, and of course the all important diamorphine. I awoke feeling disorientated, tired, and achy, and I stayed in hospital for two nights. The analgesia was controlled throughout, and I never felt any severe pain although I was uncomfortable for a couple of weeks and was anaemic so had over two weeks off medical school. But mostly for the next few days I was unbelievably tired and overemotional.

Caught on camera

Embarrassingly, the worst part was that the operation was filmed. Marrow asked me if I would star in a video diary of my experiences before and after the procedure to help train other counsellors with my experience of donating. The consultant spotted the camera on his visit before the operation and offered to take it into theatre. The entire procedure was filmed and hopefully that fantastically attractive view of my behind will be used in Marrow groups as an insider's perspective on the harvest procedure or for comedy entertainment value so that anyone who knows me can have a good laugh.

A success story

Six weeks later, I heard that the bone marrow had successfully engrafted into the patient, and now, one year on, she is still doing really well. This is terrific news, but even if the graft had not been successful, it would still have been a worthwhile thing to do and a great gift to give. Marrow and the Anthony Nolan Trust clearly do a fantastic job of giving this opportunity to both patients and donors, ultimately saving lives. Mine was just one of roughly 250 donations that occurred last year, a number that is increasing every year. So now I've done some talks at other Marrow groups about my experiences, but I really hope that people do not look at me in awe and think I am a bit of a heroine, because I really don't deserve it. Part of our training makes us want to make a difference to people's lives; I was lucky and got an opportunity to do so in a different way. Most of us would do the same but would have more sense than getting their posterior on film.

Ruth Pearson fourth year medical student, University of Leicester
Email: rcp9@leicester.ac.uk

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