Gayle & Lou, have a wonderful time celebrating your anniversary. H & I celebrated our 35th this year, but it's hard to go back to the scene of the crime since we married on a cruise ship!

Happy Anniversary! have a safe and exciting trip!



hey guys I am going to start a prayer request thread. It won't be just for those with mds or caregivers but can be for anything and anyone. hope you all will join me there!

Congratulations to everyone on their anniversaries.....my husband and I have 53 years in and still counting...Janet

We are up to 23 years....tho the hubby reckons its 85!
:)

Deb

Hubby & I made it to '38' this year and I'm at the point I take each day as a blessing.
I'm in shock about Chris. I'm way behind in reading posts and had to go back several times because I couldn't believe what I was reading. He was such an inspiration - why is it that we realize it so much more after the fact?
As I said, I'm behind. I'm still a 'working stiff', so after a long day at the office looking at a monitor, my eyes are glazed over. I need to make a point of making this part of my daily ritual. It's uplifting to say the least!
My husband has been taking Exjade. 5 pills is the max dose & he was bumped up to 6 about 6 weeks ago. It's not doing the trick; it's supposed to bring his iron levels down, which are now 2200. So we're back to 5, with the doctor pretty much saying there is nothing more he can do. So now we just play the game as to what part of him is going to break down first. He doesn't talk too much about it, but I know he's depressed. I'm as goofy as they come, so I try to keep things light and make him laugh. Heck, I try to make ME laugh! Hearing Chris is gone made me numb; the exact feeling I have about my husband's prognosis. Just can't believe there will be a day where he won't be with me. But he (and Chris) will be - the spirit is strong!! Rest in peace, Chris, and know you are missed.

It's so good to hear from some of our crew who haven't posted in a while. Janet, Deb, & KittyMom, glad to know you're still with us.

Our Christopher was one of a kind, and I miss him every day. I'm glad that he didn't have to linger in a hospital. He would have hated that. He died while doing what he wanted to do--go to Bogota again.

I read up a little on iron overload. I'm sorry to hear that the drug is not doing anything. Doesn't look like there are many alternatives, either.

Kittymom, your hubby has to go thru the stages of grief about his prognosis. Waiting for one or another organ to shut down IS depressing. I'm glad you are goofy. H & I make silliness a way of life as we play the game of who's going first.

Reminds me of the old joke about an older person who asks for advice about going to college. "But," the person says, "I'd be 63 when I graduate in 4 years."

And the advisor replies, "And how old will you be if you DON'T graduate?"

hmmm I think the site don't like me no more! (said in my most childish voice) lol. I had a long posted all typed out and thought I hit post lol

anyway..I just have to share with you all! I am so excited! I am hosting a blood drive at my church in honor of my Dad. He has had a little over 50 units since the end of December so I thought what a better way to give back! I am even making those little red ribbons like the ones they make for breast cancer! can you tell I am excited? hahaha

Much love and peace to my leaky boat family!

I started searching the web for a support group and came across this site. It's amazing, as I read through the posts, how similar everyone's stories/symptoms/roller coaster rides are to my father's.

My name is Julie and my father, Roger, was diagnosed with MDS several years ago. He has gone through the Dacogen and Vidaza treatments. They stopped working so, around Dec 2009 we stopped the chemo treatments. He is transfusion dependent. Currently receives blood every 2-3 weeks and occasionally Neupragen shots to boost his WBC count. His platelet counts hold steady. He does suffer from extreme fatigue and shortness of breath. It is somewhat comforting to read that these are similar symptoms for others as well. His shortness of breath and fatigue has increased recently, regardless of his #s being up or down.
It's tough to go through this experience but, I'm glad to see that there's a support group out there with people that understand the extreme "roller coaster ride" it is to have MDS. We are always so thankful for Dad's good days, like yesterday and today and cherish every moment we have with him.

Julie
(The picture is of my father last summer. He had a gymnasium name after him at the Achievement Center of Tx. (A day care center for children with special needs.) I'm very proud of my dad!)

Hello all,

It is good to hear from everyone. I do read all the posts daily but do not always get to comment as I work as well.

Poshsorty good luck with your blood drive. I hope you get lots of people to donate. Yes, we can tell you are excited. Let us know how it turns out.

My stomach bug turned out to be bacterial in nature so taking antibiotics to get rid of it. I am feeling better but very tired.

Hope all is well with everyone.

LaDawn

LaDawn I hope you are feeling better very soon! I will let you all know how the blood drive goes!

Julie, welcome to the leaky boat crew. Yes, we have many forms of MDS among us, but being tired is common across the board, & shortness of breath is close behind. I can certainly understand why you're so proud of your dad.

Poshshorty, I'm happy to hear about your blood drive. No one wants OUR blood any more!

LaDawn, glad to hear that you are feeling better.

I have a question for the crew. Do any of you suffer from increased calf/foot/toe cramps?

I don't have a clue if it's from MDS or Dacogen but my calfs, mostly my left one, have serious attitude problems :-). I like to describe the left one as in a semi permanent cramp that is just waiting for me to make that right move where it will show me who's in charge. The intensity of the cramp makes my foot bones stand out and the pain is such and last 3 to 5 minutes that I have considered going to the ER because we couldn't get them to go away. I've learned to live with most cramps, charlie horses, etc as I have had them for years with Fibromyalgia but never anything like these dudes. I hope yours aren't that bad.

Have a great day eveyone and smile for someone - especially you.

Mike

Hello everyone. birdmom232 and jymini have invited me to join this discussion group. As I explained in my first post, I was diagnosed low-risk MDS in June. Really not many symptoms, just low platelets (70) and white count. I am a YOUNG 64 and play golf and tennis a lot.

Wouldn't you know that today I tried to play golf and after 9 holes had to quit. I felt tired, shaky, and out of breath. Are these normal problems with MDS or just that I may be coming down with a cold or something?

Since this is all new to me I'm still learning. I look forward to reading your comments.

Welcome to this great group gwgmti. I'm afraid that it sounds like you might have a lower than usual HG and Red Blood count as well. I was diagnosed almost three years ago and while I had the fatigue and shortness of breath it was something I could work with. My red blood cell counts were down some and caused the symptoms you described. I'm now headed, I fear, towards being transfusion dependent. I just had 2 units about 3 1/2 weeks ago and had to stop vacumming the hall today for Mama cause I ran out of breath. It's not constant as long as I don't do anything LOL LOL. I'm still listed in the lower intermediate ratings just can't get the dacogen to wake up the bone marrow stuff.

Anyhow love and enjoy every minute and enjoy all that are in this group. You'll make some very good friends.

Mike