Ugh!! This is what I wanted to know but not what I wanted to hear. I guess not everyone is able to stay as active and vibrant as Chris. Happily, I note, that most of you seem to be in the very early stages of MDS. It makes me wonder how long ago this really started. We believed it was simply the aging process. But since David is in the Int 2 to High risk, I am less than thrilled with the upcoming ride. He is presently getting 2 pts of blood approx once a month. Though the extreme fatigue subsides he is not able to enjoy a burst of energy or feeling of well being.

Mary it is a huge roller coaster ride for sure. Not sure if you know this but my dad was diagnosed in early March with this stuff. at the time of his biopsy it was classified as int 1 but by the time 2 weeks later he had progressed to high risk due to his symptoms. I know every case if very different. Dad went from 4 units a month to 11 this past month. he is averaging now 3 per week. it is scarey to me because I just dont know what to expect next. I am glad we have this group so we can share together and have each other to lean on and learn from!

I was with my Dad last night and noticed that he wasn't talking much. I called to check on him and my stepmom said he had just been lying around all day today still not saying much. I know part of the signs of impending death and this seems to be one of them. Just when he started eating regular and seemingly building his strength back up. I am feeling sort of lost right now. Helpless too. I hate this mds crap!

Poshshorty, I'm so sorry to hear that your dad is not doing well right now. I will be saying an extra prayer for him and your family tonight. I have seen my dad really down and sick and was able to bounce back. This crazy disease has so many ups and downs. Has your dad had his blood levels tested recently? When's the last time he had a transfusion?
Julie
And I'm with you on hating this crap too!

Poshshorty,

Sorry to hear about your dad. How frustrating it must be for your dad to have three blood transfusions a week. Hopefully the doctors will find away to get his blood and energy levels back. My prayers are with you, your dad and family.

Rachael

Julie he gets his blood tested weekly and weekly transfusions now 2 or 3 per week. argh!

thank you Rachael. I can't imagine how he feels. I seriously expect him to say no more at any time.

The unknown is far scarier than the known. Is your dad in pain? Is he able to eat or take care of himself? Is he at home or in the hospital? Does he have the transfusions as an outpatient or is he admitted to the hospital.
My thoughts and prayers are with you and your family.
There really is NO ONE but this group that really understands

at times he has some leg and hip pain and upper back. He didn't eat much for a couple of months. maybe a bite or 2. he lost alot of weight very fast. He is eating a bit more now so that seems to be helping some. there are times they admit him for the day if his counts are too low and they feel he can't wait a day for his transfusions. or if he has to get 3 plus plts. most of the time it is done in the infusion room at the hospital.
You are right. no one knows. Even my brothers don't know too much because they just don't come around much. Sad to me though. They are the ones missing out on whatever time he has left.

Dad seems a little more stable. Dr said he could have gotten a round or 2 of not good enough matched blood. I think it is because he started eating again.

on a different note....I had a horrible dream this morning. I dreamed Dad had passed and it was time for his viewing. I just could not go up to the casket at first. Then I finally went and his skin was all dark and his eyes were open. I bent over and kissed him and told him I loved him. He looked at me as always and said "I love you too baby". man it really got to me because he says that to me every day.

sorry if this is too much info. just wish I could get that image out of my head!

That brought a few goose bumps. What we need is rest and recouperation. You wake up after a dream like that exhausted. Enjoy the time you have.

My mother has this and has done fairly well for the past year or so. She has been on revlimid and did good for a year but was then taken off of it. She has recently had two more blood transfusions and currently has very low platelets I think her number was 10 and after another does of platelets it is now 8 actually going down. She is as of today in the hospial. Her Dr. is going to do another bone marrow biopsy on wednesday to see what the change is. She also gets procrit once a week and decogen 3 times a week. Anyone out there experiencing the same thing if yes first off, God Bless you, second what can you tell me about your ups and your downs medically. My mom is 66. Thanks

my Dad is 81 today. He decided against chemo so we wait. he does get transfusions weekly to 12 days. yes hon it is up and down but his plts are holding between 16 and 30. God bless you too hon. I hope your mom gets home soon!

guess it is time to take care of me for a bit. I had a mammo last thursday and have to go back tomorrow for an ultra sound. I think I am beyond scared right now. wish me luck!

Luck, best wishes, peace and serenity........do it one day (maybe one minute) at a time. You have survived mylelodysplasia.....you can do anything!!!!!!!!