New MDS patient

[Jill2008]

I was just diagnosed with MDS at the age of 47 after 7 months of searching and countless tests. My local Hemotologist referred me to a specialist 4 hours from where I live but now I'm so glad he did. At least I know what I'm up against. My IPSS is intermediate-2 with cytopenias and complex chromosome abnormalities. Because of my young age, it is recommended that I have a bone marrow transplant in hope of a total cure. Has anyone been in this same situation? I have two grown daughters (one married and one single) and one teenage daughter still at home. It's really scary to think that I may never see my youngest daughter graduate from high school or hold my first grandchild. This has been very difficult for my husband too. He is very concerned about my health and wants me to stop working.

[Neil Cuadra]

Hello Jill. I'm sorry to hear of your diagnosis. Have they done a donor search yet?

Transplants can indeed cure MDS. I suggest that you read the profile of my wife Ruth on the main Member Profiles page, for one case history.

I also suggest that you contact the AA&MDS Foundation and ask for their MDS information packet.

[Jill2008]

Neil,

Thank you for responding. I did read your wife's profile and it makes me feel that there is hope. I have requested information from the Aplastic Anemia & MDS International Foundation among other organizations listed in "100 Questions & Answers About Myelodysplastic Syndromes".

My Hemotologist at Stanford gave me this book when I was diagnosed and I highly recommend it. Many of my family members have ordered their own copy from Barnes and Noble.

I have an appointment in a few weeks to discuss the process of searching for a bone marrow donor and expectations regarding the treatment itself. Even though I am sometimes overwhelmed with negative thoughts, I am very confident in my Hemotologists decision and feel I am in good hands.

Jill

[Donna E]

Dear Jill,

Welcome to this forum. Here you will find love and support. I am 47 and the daughter of a father with MDS. I started late in life and have two small children 5 & 6. I know it is hard getting a diagnosis like this but thank God in some ways it is coming when you are still young and can have a transplant. I have a friend who survived leukemia with one and since my Dad has been diagnosed, I am a firm believer in cord blood banking (please visit my site at cordofhope.com). I see what my Dad has gone through and we have all got to find a cure for this disease. My Dad was diagnosed in the 90s and I was so afraid he would not walk me down the isle or see my grandkids. He did all of that so please hold onto HOPE. He walked me down the isle and held each one of my children. Today they went to visit him and they amaze me because they are so good and loving with him, knowing he is sick . . .
I will pray you find a donor and that you find love here in this forum and most of all support. You keep thinking good thoughts and focus on those things you don't want to miss and fight, fight, fight. We are all here for you Jill so whenever you need to talk, get on this forum. We will stand with you in this fight . . .

Much love and if I was there I would give you a big hug . . .

God Bless,
Donna

[Jill2008]

God bless you Donna and thank you for your love and support. It is so comforting to know I can talk to others who are dealing with the same disease. I will include you and your father in my prayers.

Jill