[Natalie Lugo]

to everyone in this thread, I’m not sure if you will get a notification, but i wanted to update you on my situation since you were all so kind to respond to me during such a difficult time in my life.

This was originally posted in September, dad finally decided to go through with Vidaza. He started his first round in early October. We thought everything was going well until he fell in late October due to weakness. After that fall he remained in the hospital for a month because he was vomiting dark fluid and had a fever. after that month we were given a month left with dad. now in december we took him home for a few days then a hospice hospital were he spent 2 and a half weeks until his call to home on 12/26. seeing how this disease ravaged his body and mind is whats the hardest thing for me. having to witness this man who embodied strength suffer the way he did was rough. his legs were so swollen and dark and he started too have little red dots form on his arms and hands from what i pressumed was the lack of platelets. in any matter i take comfort in knowing he is no longer in pain, but of course I’m selfish because i just miss him so much. while I’m relived the worrying is over, i am now going through the grieving process of having lost my father so soon (I’m in my 20s, never married).

this forum brought me a lot of comfort and did not make me feel alone. thanks to showing your support. I hope your families are doing better then my story. I’m praying for you all.

[Natalie Lugo]

My father had MDS and suffered from a severe mysterious rash all over his body. It left his skin looking red raw and textured like snake skin he scratched so hard and rabid. Doctors were never able to find a cause to it. I’m extremely convinced it has to be attributed to the MDS in someway.

[Natalie Lugo]

Catherine,

I’m scared of the side effects of chemo as well, but I really wish he’d give it a try. I called my doctor today to cancel what would been his start with the first round of Vidaza and the doctor said this is a ticking time bomb. It hurts so much and puts knots in my stomach daily, but he doesn’t want to do it. He’s been receiving blood transfusions every two weeks as well pretty much substaining on that. But he’s also lost so much weight and has had a horrible all over body rash and bruising. I’m just so worried, I’d kill for his health to be good again. I will look into the book you recommended. Thanks so much for your support feels good to know I’m not alone. Best, Natalie

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