I was 32 years old when diagnosed(2 yrs ago). I have 2 children, 11 and 13, and a husband of 15 years. Talk about getting the wind knocked out of you!
This disease has taken over our lives and I struggle with this every day.
{|=My husband and I had just bought our dream home out in the country, the kids were doing great in school. Then "wham". I had been feeling overly tired for a few months, and had bruises on my legs and arms that couldn't be explained. So, off to my long-time family doctor for a check-up. You all know what comes next..the call comes in that you have an appointment to see a blood specialist...mine was set within 2 days with the best hematology department in Ontario..London Health and Sciences Centre here in London.
I met with Dr. X and his team every week over the course of 3 months til they finally had a diagnosis for me. I had blood tests every week, a few transfusions, and 3 bone marrow aspirations and biopsies.
When my husband and I were given the diagnosis in Nov 2007, I'm sure you can all relate to how much our world went upside down. The bonus..I was given only 3-4 months to live as my hmds was nearing the last phase. However, after all this turmoil and fright and screaming into the wind "Why me?", luck was on my side.
Because of my age at the time, 32, and because of the advanced stage of the disease, my only option was a STEM CELL Transplant. Both of my parents are still alive. I have 2 younger biological sisters, 2 step-brothers, and a wonderful step-father. Everyone went and was tested for a match. My sister came back as being as close a match as if she were my twin, which she is not.
The transplant was set for Jan 08.
In the meantime, our family sold our home and moved into the city to be closer to our families. Our children had to change schools and start over. Life had just become more complicated and trying. I had been a very active stay-at-home mother. My children, God bless them, have learnt to "handle" the way life curved on us very well.
Things were very hard the first year...I had to have radical chemo before the transplant (8 months worth of chemo pushed into 8 days). My hospital stay was only 15 days. I went into the hospital a somewhat "healthy-looking", long blonde-haired girl, and came out bald, pale, and a bit bloated, with a contraption sticking out of my chest so that the doctors could get medicines/blood to me easier. My children named it "the octopus".
Like I said, the first year was very difficult. My husband and I were back and forth to London (111kms away) every week. I suffered from acute gvhd, and now chronic gvhd. And the medication list was/is enormous.
But, as I mentioned earlier, I am just about to hit the 2 yr anniversary date of my transplant, Jan 29/10.
This past 2nd year my appointments have relaxed a bit, sometimes every 2 weeks, a couple times once a month.
I had been taking cyclosporine up until Sept 09. But Dr. X found that I had developed gvhd in my lungs, so he switched me up to a very aggressive and potent anti-rejection medication called cellcept. I am still taking prednisone. I went off of it for a whole 5 weeks, but my body didn't like that idea, so here I am 2 years later still on it. I also take septra and fluconazole whose job it is to keep me from getting any infections, and alendronate for the osteoporosis that the prednisone is providing.
I am alive today thanks to the fast and thorough work of my family doctor and the fantastic team of specialists in London, whom I say thank you to every other week when I see them. It's been a long road. But, a road a may not have been here to travel. And for that I am grateful. I am young and still have much to do with this life. To me, every day that I climb out of bed(before looking at my medicine table o:) is a blessing.
I keep hitting bumps in the road, but at least I can say that I'm here to live another day.
I wish you all the best of luck and my thoughts and prayers are with you all and your families.
I would love to hear from you, especially if someone out there has MDS and is close to my age.
If I can help you in any way, answer any questions...please let me know. I have nothing but time on my hands.
Stacy