I cross posted this. I hope you guys don't mind!

..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!)

Julie nice to meet you and welcome to our group! yes it is quite the roller coaster. My dad chose not to do any treatments other than the transfusions. he too is dependent on them weekly to the tune of 2 or 3 units each week. sometimes I feel like I am in the movie "fast and furious" Dad stays pretty weak all the time now. use to he would get a day or 2 of decent energy but not so much anymore. I hope your dad is doing well!

Dad's back in the hospital today. He just received 4 pints of blood last weekend and his counts are already down again. He will receive 2 units and a neuprogen shot to boost his white blood cell count. It's crazy that yesterday he felt good and woke up today feeling really sick and weak. :(

I am sorry to hear your dad is back in the hospital. how long has he been diagnosed hon? I will keep him and your family in my prayers.

He was diagnosed in 2007 but, they think he has had it since 2004. Thank you for praying. I'll definitely be praying for your father as well.

I'm actually at the hospital right now with my parents. He's receiving 2 units of blood & a neuprogen shot. We are hoping he'll be back home tomorrow.

Poshshorty, I'm curious. Why does your dad have only one kidney? I ask because when my dad (who had MDS) was autopsied, he had only one also.

he lost one kidney due to unchecked kidney stones in 2001.

it is normal procedure to autopsy mds patients? just curious on that.

I guess it's not standard procedure, but Dad was autopsied at the hospital's request (VA in Kansas City). I was able to get all his files from them, including the autopsy report, where I learned that he had only one kidney left.

wow! did he lose one in surgery or born that way? I know when they autopsied my granddaughter it was discovered she had only one but it was called a horseshoe kidney. very odd things happen inside our bodies.

Well the report on my husband was very good, all counts are normal except platelet and that was 42 and Dr. says that is livable, the Dr. doesn't understand what is going on....in April all counts were very low, now look....the old rollercoaster ride I guess....take it as it comes and be glad that the counts are up...Janet

is he on chemo? or other treatment?

Janet, that's great news! My family always celebrates when Dad's counts are good. There never seems to be a reason for the ups and downs that go on with the blood. It's crazy! Enjoy the good days!

Every night I pray for a cure and I always make sure to thank God for each day he gives me with my father.

Hope your husband continues to do well.

Julie

Poshshorty, apparently one kidney was shriveled (why, I have no idea), so I'd guess that Dad had two to start with. Good thing we can all function with just one.

birdmom ah I see.

Janet good to hear the good news of some good numbers! whew! what a roller coaster this ride is!