Hello… newbie here!

[daddiesgrl]

Mom & Dad both turned 73 in April and have been married for 54 yrs.

Dad was recently diagnosed with MDS. He’s pretty healthy except some heart problems. He has walked most every day since 1978. He has eaten a very healthy diet for at least 25 yrs.

Just beginning research today. Any help and guidence would be appreciated. I know we need to do lots of research and learn all about his condition and this is the first place I found. Well the website, but I thought the message boards would be a big help to my family.

My parents were told that dad’s IPSS score is 2. They said he would start getting sick anywhere from 6 mo. to 2 yrs. from now.

Well, don’t know what else to share right now. I will do some reading and hopefully find some support and helpful information that might help me and my family learn more about this. We want to help improve the quality of his life and learn how to help each other through this difficult time.

Thank you,
daddiesgrl

[bobweinberg]

You should not stop at the website. Call Audrey Hassan at the Foundation’s 800#, and talk to her about options, Centers of Excellence for a second opinion, drug possibilities, etc. The Foundation also has booklets to distribute on MDS. But the most important part is that it provides someone with whom to speak about what is happening in the MDS world.

[daddiesgrl]

Thank you Bob for your reply to my post and suggestion to contact Audrey Hassan. I’m sorry that I didn’t check back sooner, but I was away from home and my computer.

I traveled with parents from Florida to Michigan where "home" is and my brothers are. My parents will remain there now. I had to return to my apartment in Florida, but am working on finding housing in Michigan so I can be near my family during this difficult time.

I’ve got a million things to do… trying to get approved for government housing as I’m on disability. And trying to find out about resources for help with mom and dad’s needs. I haven’t even gotten unpacked from my trip. I’ve got to make some phone calls, pay bills, and try to arrange a sale to sell what I can before the move. Got to contact Greyhound about tickets for my brother and nephew who will be coming to drive the u-haul back to Mich. And got to call about prices on the u-haul and check other company’s for the best price. And got to call about getting some local help with moving expenses if there are even any available. Oh, and I have to get some brake work done on my car and have the oil changed.

I feel like screaming!!! But I’ve just got to do one thing at a time and stay focused and positive. So I’m trying to spend today getting organized so Monday I can begin making phone calls. I always keep a to do list, so I’m jotting things down as I think of them and I’m going to spend some time getting unpacked and getting my apartment in order. I think once I get more organized I won’t feel so anxious about everything.

Sorry about the rambling and whining. I should probably be writing this on another thread or in my journal. So anyway, thanks for taking the time to reply with your suggestions.

I know very little about MDS or any of the information in your signature, but I want to tell you to hang in there and continue to take your journey one day at a time. Stay as positive as you can and always take care of you before anyone else. I wish you the best and hope you beat this thing.

Cindy

[JOI]

Hi Cindy. I am like you in that my mom was just recently dx with MDS (refractory cytopenia, IPSS Int 1). She is 88, so far doing well and no treatment. So far I have seen that it’s not an easy journey, neither for the patient nor for the caretakers. I had never even HEARD of MDS before about 12 week ago; now I feel like an expert in blood! Anyway, continue to use all the resources available to you. I am finding this board and others like it to be helpful in seeing what other families and patients are going through. Take care and stay in touch with us all.

[simplistic007]

Hello newbie, I wish you the best w/ your mom and your family. It is a scary thing. I never heard of MDS up until I had been diagnosed and almost had to live a transplantation last August, 2010. Somehow, my blood levels although weak were not considered weak enough to go through a transplantation. God spare me that one. I have to do a bone marrow biopsy every year and I am due in August, 2011 for mine. I am very nervous because they did say that although I got the "go" card, this can change at any time in my life. Scary thought. I am now diagnoses as having refractory anemia. My levels change all the time, but not enough to get a blood transfusion, but enough for doctors to keep an eye because my bone marrow does come back w/ clusters and some abnormalities. Thanks for sharing your story. Keep in touch. Simplistic007

[lindajo]

Wow I can’t believe you moved everyone from Florida to Michigan. It is possible to live for years without treatment other than wait and watch. I have had 20 years with only transfusions and antibiotics as needed. Florida’s climate to me would make the disease easier to deal with. Slow down and don’t spend every day dreading the day when he will start having major symptoms. It is possible that things won’t be as bad as you are imagining. It is the unknowns that are difficult to deal with. Learn as much as you can and slow down a little. Taking care of yourself is just as important as taking care of your Dad.

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