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Old Sun Apr 16, 2017, 09:34 AM
KatailS KatailS is offline
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Join Date: Apr 2016
Location: Avon, CT
Posts: 41
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Quote:
Originally Posted by shellybean View Post
I had my appointment yesterday and it has been confirmed that I do not have aplastic anemia. They are still unsure but are considering MDS. My bone marrow cells are ragged and they do not develop properly. They also found that the telomeres on my chromosomes are too short for my age, so they are doing further tests to determine if I was born with a faulty gene or not. The types of tests they are using have only been developed within the last 5-10 years so I'm lucky that they're available to me. These genetic tests are going to take a while so my next appointment isn't for 3 months. I may not get a diagnosis so if I don't I will join the 100,000 genomes project. My blood levels are low but not severe enough to require treatment, so that's good news. I'll be monitored every 3 months to see if my blood remain stable or to see if it changes. All in all it was a relief to know I am okay for the time being and won't need any treatment. Again it was frustrating not to get an answer, but this is obviously a bit more complicated than I first thought.
Hi shellybean.... our stories sound so similar.... been riding this bus since November 2014 and in a holding pattern of bloodwork every three months. My cellularity was 20% (I am twice your age so this number should be closer to 47%) at my last BMB and all my levels (WBC, RBC, platelets) are low, but holding (I call them my new normal). My telomeres are normal on one subset, low on two and very low on two.... not enough cells to determine the sixth subset. I have the soft diagnosis of moderate aplastic anemia with a small PNH clone (which I understand often happens). Going back up to Dana Farber in May to discuss the findings of the short telomeres and to discuss more targeted genetic testing. Generally speaking, I am in good health and I was in the best shape of my life when they found my numbers dropping. It has been a mental drain for the past couple years, but this forum has really helped stabilize me, knowing that there are others who are like me and others who are dealing with worse yet are so strong and fighting. I hope you find comfort in the support here.... and please do keep sharing. Don't forget to Live, Laugh and Love every day! Keeping you and everyone here in my positive thoughts and prayers.
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Kathie - 54 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone (now increasing), monitor bloodwork every three months
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