Hey there heart of dixie.
Welcome to the group. It's a terrific bunch here that have been through all there is that come with this junk we have. The biggest thing you'll find here is a huge amount of love, support, prayers and help. While we hate the reason your here, we are delighted you decided to join in with us.

God Bless
Mike

welcome heart of dixie

Hi Heart of Dixie....we are all here to support you and each other. I remember how devastated I was when first diagnosed, so if there is anything you need from us, just ask. We are here for you and most of us have come a long way. One piece of advise....stay away from researching this disease on the internet. It will depress you terribly. We are all at different stages with MDS, so I am sure one of us has or is going through the same thing as you. Feel free to seek out from each of us anything that is troubling you or questions you might have. Our hearts go out to you on your diagnosis, but remember there are a lot of options for you to help you through this as far as treatment.

thanks everyone glad to be here I was devestated to when I found out I never would of thought the problems I had would of been cancer I just want to ask whats the life thing with this how long can you live with it?

dixie no one knows how long one will live with mds. I have seen one person say they were diagnosed over 10 yrs ago and still going on pretty well. I think it really depends on your general health and what degree whether it be intermidiate 1 or whatever level. there are many factors really. best thing is talk to your oncologist about it. good luck sweetie.

thank you and good luck to you to

Heartofdixie, welcome to our leaky boat. As you've already seen, our crew is very welcoming and we hang together for whatever kind of support we each need.

The thing about MDS is that it's an umbrella diagnosis covering many different types of the disorder. For myself, I'm fortunate enough to be in the low-risk group & should have a number of years to go. Others progress to the acute leukemia stage, where the fight becomes quite fierce. We lost our captain (Chris) to that, but he died living life to the fullest & was a huge inspiration to all of us.

Many treatments are available, and hundreds of trials are going on for new drugs. Meanwhile, you'll see a small handful of drugs pop up in our discussion, mostly forms of chemo. Mine (Aranesp) is not chemo but a manmade protein to build up my blood. Seems to be working pretty well!

A few of the younger crew will undergo bone marrow transplant some day, but it's not a step to be taken lightly. For older folk like me, that's not an option.

In essence, whatever stage & type you have, MDS will do one thing for you: Make you realize how precious life is.

So dive in and ask questions. One of the crew can probably answer them.

Gayle, please keep us posted about Lou. This is big stuff, but seems to be the choice to make.

Janet, glad to see you posting again.

as you all know we had a huge snow and ice storm here in Ga. Dad normally gets his platelet transfusions on Monday but we were all trapped and could not get him in. Also normally when we get ice dad's house loses power. I had a couple of churchs praying we didn't lose power because of his oxygen. Well Praise God they never lost power. Also we didn't make it to get any transfusions until yesterday! his plts held up to 10k and hemo to 8.9! Praise God! the bad thing is he has a really nasty bladder infection and he is not talking much anymore. Not sure if it is because he doesn't feel well or what it is. I am asking for prayers for him. Hope you all are doing well today!

Welcome heartofdixie to our crew.

Posh, glad to hear you made it thru the snow storm with power. I, too managed to keep power here in stone mountian, ga but was stuck in the house for the first 3 days of the storm. Fortunately, i was prepared for it. Hope all is well with everyone.

Gayle and Lou, I will be keeping Lou in my prayers for his upcoming surgery.

Stay positive and take each day as it comes. Be blessed.

LaDawn

The other messages certainly werent easy however, this is by far the hardest.

Lou passed away Thursday morning at home. One minute we were talking and the next he was gonehe did not suffer at all, it was like he just closed his eyes and moved on to a happier place.

He will miss his friends and especially the bevy of nurses and doctors he has been visiting on a regular basis. He had been given the opportunity to switch to a different medicine but he chose the ones that were given twice weekly, just so he could harass his nurses on a regular basis.

We will all miss himhe kind of gets under your skin in a good way, once you have the opportunity to get to know him.

Im not sure there is much more to say other than, please join us for a Celebration of Lous Life at New Hope Church, 20080 Pinebrook Blvd, Bend, OR on Thursday, January 20, 2011 at 3:00 p.m., with Pastor Randy Meyer officiating.

I look forward to seeing you there!

PS - Leaky Boat Crew...stay strong!

Gayle & Mocha

Ah Gayle, I was absolutely shocked to see your post about Lou's passing. My heart is with you.

I hope this doesn't sound strange, but I'm so happy that he died that way. So few of us have such a peaceful transition. And he skipped the pain and trauma of surgery, bless his heart!

In all the commotion to come, please take care of yourself first. (Well, maybe Mocha first, you second.)

I don't know if you will want to continue posting, but I hope that you will for at least a while. You've been such a vital member of the leaky boat crew!

Oh Gayle I am so sorry to hear this. Like birdmom said thank God he went the way he did. My prayers are with you. I am and will be with you in spirit. My love to you and your family.

Gayle,
Please know how very sorry I am for your losing Lou. I do celebrate your life together, especially recently. We read as the two of you shared, talked, held hands and so very much more that a lot of folks never get the chance to do. We will celebrate all that you let us be a part of and thank you for that. In that instant he left while talking to you and joined in conversation with our Lord. If Lou or anyone had a choice of how to go I'm pretty sure that would be it..

I too hope you continue to chat with us here as you are part of this ole leaky boat crew you know. Like I said once it might be a leaky boat but all of us pulling and rowing together keep it afloat.

Your fully in our prayers and know that we will all be with you in spirit in your days to come.

God Bless freind,

Mike

Gayle
I'm so sorry to hear of Lou's passing. I am here for you, as I am sure are all the Leaky Boat Crew. Do you remember that drawing I did of us all about a year and half ago, with Lou hands blocking a rather large leak in boat? Well I'll always remember Lou as a friend, keeping the Leaky Boat Crew afloat.

My prayers and thoughts are with you and your family.

Your friend
Rachael

Gayle, I'm so sorry, I feel like all of you are family and therefore just lost part of our family....am thinking about you and your family....Janet