I wanted to update my MDS family on my mom’s recent progression to AML. I find such love and support from you and know what it is like to have or have a loved one with MDS. I really need some love and support today. I feel like I am going to have a meltdown. Mom took her first dose of Zarnestra last Thursday. 3 hours later, she had seizure like movements and stopped breathing. My fiance moved her on her side, wiggled and talked to her and she started breathing again. I called 911 and she was taken to the hospital. Her heart stopped and started 8 more times in the emergency room. They put an external pacemaker on her and she was moved to ICU. It was decided to put a internal pacemaker in her. Doctors were questioning this since she had been given 6-8 weeks to live without treatment for her AML. She had the pacemaker put in. It only took a couple hours. We were told the Zarnestra unmasked her “weak heart wiring” since she had such bad nasea after taking the Zarnestra. The doctor thought she should continue with the Zarnestra at a reduced dose. Mom decided to give it another try since her white blood count keeps increasing everyday. She took her first dose last night and if everything continues to goes ok she will be discharged from the hospital tommorrow. I am taking her to my house and will take care of her. I will keep everyone posted.
Sheryl
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