Hallo Everyone. I am so glad I found Marrowforums!
My name is Rita and next month I will be 57 years old. This is my first time to post, although I have been lingering here in the past, not knowing yet precisely what my diagnosis was.
Although I am a South African, we have been staying in the Netherlands for the past five years - and loving it!
Two weeks ago, after numerous blood tests and two bone marrow biopsies (since the beginning of February 2013), my diagnosis has been confirmed as 'Hypoplastic MDS'. Until now, I have been receiving supportive care - regular blood tests and doctor appointments, and transfusions whenever necessary.
My blood counts this past Tuesday were: hemoglobin 5.6 mmo1/L (range 7.5-10.0), thrombo's 6 x10e9/L (range 150-400), leuco's 2.3 x10e9/L (range 4-10), and neutro's 0.48 x10e9/L (range 1.50-7.50). I had a platelets transfusion again, the same day - and I will receive 3 units of red blood cells tomorrow. The haemotologist urged me to start with Immune Suppressive Therapy as soon as possible - in the form of 'Cyclosporine' tablets, together with 2 kinds of antibiotics as my white blood cells are so low.
I have read up on Cyclosporine before, and I am very scared of all the possible side effects. I have always been a believer in my body's own ability to heal itself, if given the correct internal and external environment if possible. Fortunately, up until last year, my health was fine. During last year, though, I fell ill with upper respiratory infections more often; became more and more tired; and bruised easily. I never thought all three problems could be related, and presented with only the infection, whenever I went to see my GP.
It was during a routine medical examination and blood test, in the beginning of the year, that we discovered all 3 my blood counts were low - and then the process I have described above, followed.
I am sorry for this long post, but wanted to share my story. I really am so confused and scared about what to do. I do believe in medicine and have a lot of respect for the medical profession, it's just that I am so afraid that this medication might cause other (worse) problems in the future.
My sister and I have also both been tested, and she is not a match - that means we will have to look for an unrelated donor if a stem cell transplant is needed. And I know, that I will then also need to take the Cyclosporine to prevent my body from rejecting the donor cells.
I know that this decision is only my own to make, but does anyone have any advice for me? I don't want to be selfish and only think of my own concerns - I want to do what is best for my family and loved ones who are also affected by me having this disease and by my treatment. And also, very important to me, I want to make a decision that will honor my faith in God.
Regards,
Rita