My Story So Far!

[Treasurer]

It was nearly 3 years ago, in September 2006, when I was first diagnosed suffering from MDS.
I had been to my GP for a quarterly check up for my high blood pressure and she suggested just checking my blood counts and kidney functions etc. as they hadn't been looked at for over a year. I then made an appointment to see the practice nurse who took the blood samples. I was told to contact the surgery in another week for the results. Not thinking any more about it, I carried on that day and went to bed, only to be woken by the telephone ringing at 2 am the next morning. At the other end of the line was a locum doctor on night duty who had picked up the results of my blood test which showed that my neutrophil count was 0.6. He wanted to know if I was feeling well? I thought this was some sort of bad joke and questioned who he was! I was alone, as my husband was away on business and this "caring" doctor just told me not to worry, to go back to sleep and to make an appointment to see my GP in the morning.

My first introduction to MDS!

There followed visits to Charing Cross Hospital in Hammersmith, London to see a particular consultant that my GP thought could help, I had lots of tests, including my first experience of a bone marrow biopsy with a local anaesthetic! The consultant at Charing Cross diagnosed MDS (Refactory Anaemia with Neutropenia) and felt that I should be referred to a MDS specialist. My choice was either to go to King's or Hammersmith Hospital. As I live in North West London, it made sense to be under the care of Hammersmith, where I have been ever since. I am very satisfied with the care that I receive from them. In my case, although I know that others have not been so fortunate, the treatment under the NHS has been first class.

When I first saw the consultant at Hammersmith Hospital, he felt that my condition was deteriorating very quickly and was worried that without a bone marrow transplant, I would develop acute myeloid leukaemia. However, a match, to date , has been impossible to fine, even though I have 3 siblings. I am on the Anthony Nolan Register and my wonderful children are always campaigning for everyone to sign up to the Register and have organised at least 20 clinics for potential donors. In the absence of a match from the Register, my consultant located a potential cord blood deposit which has been "reserved" for me , should I need it in the future. This would be necessary if my condition deteriorates. In particular, if the level of "blasts" in my blood went up towards 20% (which is the level used to define AML). Currently , I'm please to say my blasts are normal, at around 5%.

I have regular bone marrow biopsies every 6 months and now insist each time on having sedation to avoid a repeat of my first painful experience. I'm at the Hospital every 5-6 weeks for regular blood tests and my only treatment so far, is to take antibiotics twice daily (Ciprofloxacin). My neutrophil count is now down to 0.2, but remain fairly healthy. To minimise the risk of infection, I avoid crowded places and don't travel on public transport, especially the tube. If I go to the theatre or cinema, you'll find me in the back row in the corner! I don't eat take-away meals and avoid shellfish and try to maintain a healthy lifestyle. I do take some health supplements (who knows whether they help or not!) and am a great fan of Manuka Honey. (I take 1 tsp. of the highest dose 25+ daily). I also take 1 tsp. daily of LifeMel Honey. This is extremely expensive, but is proven to help those with a low immune system, especially for those who have had chemotherapy. Fortunately, I have a wonderful friend who buys it for me in Israel, where it is produced. Friends and others are very understanding. They know I don't shake hands and exchange kisses - I just wave! I do carry around with me a thermometer, as if my temperature is raised for more than one hour, I have to go to hospital and be put on a drip. I also don't go anywhere without hand wash gel.

It's a continuing story. Everyone is different and low blood counts don't have the same effects on everyone. So far I've been lucky and have remained well despite a white blood cell count that is currently at 0.9 . My consultant tells me that this can be boosted with Growth Hormone injections, but I've not needed to resort to this yet. In the meantime, I try to lead a "normal" life as possible.

Sharon