Hello to all subscribers of this most useful MDS forum. My story reads like many of yours do. Until last December I was a healthy 35 yo male with an active lifestyle, cycling at least 5 times per week, racing 100Km plus at the weekends and eating a healthy balanced diet. In January I moved to London to look for contract work and took up temporary accomodation in Barking. During my second week I caught a severe cold but recovered fairly quickly. I was walking long distances around London, attending job interviews and I started noticing a lack of energy, shortness of breath when climbing stairs in the underground stations etc. I thought this was to do with aclimatising to the cold weather and bravely soldiered on. Two weeks later my lymph glands swelled up badly under my neck and I had a constant sore throat and migraine headache. I suspected glandular fever and stayed in bed a couple of days. At the end of February I felt really dizzy and had severe shortage of breath which included chest pains. I couldn't afford to see a doctor as I still didn't have a job and without a permanent address the NHS weren't really interested either. At this stage all I wanted was to see my GP back in South Africa and get some pills to sort out this virus or whatever minor infection it was
I flew back to South Africa from London Heathrow on Friday night the 2nd of March and visited my GP on the following Monday morning. He immediately commented on my anemic presentation (I was as white as a sheet) and on examination noticed my spleen was severly enlarged. My Hb count turned out to be 4.0 and I was admitted to hospital the same day. At this stage MDS wasn't suspected. I had a full blood workup and all my figures were low (I still haven't worked out what all the various statistics mean etc.). I had a bone marrow biopsy from both hips and was treated with blood transfusions in the first three days to get my heamoglobin level up.
The report back on my initial bone marrow biopsies was inconclusive and so another one was performed with additional tests ordered. On receiving the results of the second bone marrow I was diagnosed with Aplastic Anemia and underwent a 7 day chemotherapy treatment with Cyterabine. Recovery from chemo took another 16 days during which time I was give transfusions of platelets, red blood cells and Neupogen injections. I was told that my blood counts should increase naturally if the chemo was effective in killing the faulty bone marrow. My Hb counts declined so I was given another bone marrow biopsy. This showed excessive blast cells and indicated rapid progression to leukemia - Oops!
My doctors weren't convinced and ordered another bone marrow biopsy a week later. The results of this were more stable and my diagnosis now rests at MDS. I am transfusion dependant and generally visit my clinic every 3 weeks now for a transfusion of 2 units of red cells. This boosts my Hb to around 9.3 and I decline down to about 7.3 by the next visit. I am not taking any other form of treatment as my white cell and platelet count are maintained at an acceptable level. My only sibling, my sister was tested as a likely bone marrow donor but unfortunately was not found to be a match. As I have no medical aid, I cannot afford to search the registry for a compatible donor, nor can I afford drug therapies such as Vidaza.
I do have extremely sensitive gums though and they seem to be receding around the base of my teeth. I have to use Listerine mouth wash as brushing is very uncomfortable. This and a permanently sore spleen are my only real complaints. Sure I'm low on energy but at least I have an excuse to be a couch potato now
Does anyone else have this problem with their gums and spleen? Any advice on dealing with the disease will be most welcome.
Lastly thank you to all my wonderful doctors and nursing staff and an especially BIG thank you to all blood donors out there - without you I wouldn't be alive today. I have had over 30 units of blood since this all began and I value every single drop for it's life giving force.
Be brave everyone and give thanks for every moment we are alive and able to appreciate a new sunrise, a clear blue sky, a clourful flower or a bird singing in a tree. How precious life is and how much we all take it for granted when we are healthy.
Sincerely
Kevin Banks