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  #26  
Old Mon Apr 30, 2012, 01:44 PM
JGOLF JGOLF is offline
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Join Date: Feb 2012
Location: USA
Posts: 11
hello everyone,

Sorry I have not posted in a while, I just wanted to give everyone an update on how things are going. As for my health, still no diagnosis but that's okay, my platelets have remained in the 50's for quite some time and I am still on the same meds however they have lowered my prednisone dose to 5mg now(YAY)...one major change is that my liver toxicity level is really high and the doctors are watching it. I have my next doctors appointment this Friday! I wonder what he is going to say... Last time he told me to live my life as normally as possible and that is what I'm trying to do. The weather is beautiful now and I've started to practice more golf, I'm really dedicated to get my game better than what it was so I can compete in the division 1 level once again. On another note, I have got in contact with the Be The Match organization and i really want to be apart of it. I have a meeting with them soon about ways I can help them with my story and help them raise money! I feel very connected to this organization and feel like I need to do what I can to help the ones who are not as fortunate as I am when it comes to finding a donor (my brother is a perfect match for me)... I was thinking about starting a website page where I could sell my artwork and have all the proceeds go directly to Be The Match... I truly feel like everything that has happened is a blessing, my goal in life before was to be an amazing golfer, now my goal in life is to help others any way possible..
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JGOLF, 21year old femaie, not diagnosed yet, currently on cyclosporine and prednizone, and antibiotic.
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  #27  
Old Mon Apr 30, 2012, 03:34 PM
CatherineJ CatherineJ is offline
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Join Date: Jan 2012
Location: London, United Kingdom
Posts: 29
I'm glad your platelets seem stable and you are continuing.

Why isn't there a diagnosis yet? Was the last BMB a bad sample again? Has your hematologist given you some indication what it might be?

I'm planning to run a drive this summer for Be the Match. They are really good at getting back to you when you fill out the form notifying them of your interest in running a drive on the website. They emailed me back and forwarded my info to the local chapter where I live in the US. I'm pretty excited about doing it.

A website raising money and selling your art is a great idea, I know that it costs money to run the genetic testing for bone marrow registry.

So happy you can stay positive. Thanks for updating us.

Catherine
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25F, Dx RCMD MDS 1/2012, on wait and watch for who knows how long
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  #28  
Old Tue May 1, 2012, 06:49 PM
cathybee1 cathybee1 is offline
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Join Date: Aug 2010
Location: Fort Jones, California
Posts: 399
Hi JGolf, good to hear from you. Be the Match needs so much more publicity! Your ideas are wonderful. So glad you're feeling better and your numbers are holding steady. Sorry to hear about your liver numbers...I hope they figure that one out soon. Keep us posted.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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