Janet it stinks doesn't it? I watched my mom suffer with pancreatic cancer for 10 months. darn it was hard but this is harder. I lost a granddaughter when she was 13 weeks old. I don't think having to bury a child or grandchild can get any harder! I know how you feel hon.
Thank you for all your support. We are all in this together.

every body has heartaches the thing to do is to just keep doing the best we can Within my family just during the last 5 years between us we have lost a mother 2brothers a brother in law and a nephew. Also my mother broke her hip and is now in care. Our daughters marriage broke up and she got breast cancer. Praise to God she is almost 5 years clear, and now with my husband being diagnosed aml. As I am writing this it sounds like a country song to me, but my point is even though things seem almost impossible to bear the human spirit becomes strong enough to endure almost anything Keep the faith my thoughts are with you and yours

wow Lynet you have sure been thru it! My thoughts and prayers are with you and your family.

ok, can you think of a reasonable explanation for having to wait 1hr and 45 min for a pint of blood to be found for a 9am appt. If this whole process is not maddening enough and knowing that you will have to sit for 6 hrs anyway!!&*%$!! Fortunately, this has never happened before but how can we prevent it from happening in the future?

hon I think when my dad gets his blood it is long in between units. they test him the day before and order it even! I think the nurses are just slow!

just want to update you guys on Dad. he is now platelet dependent. I have no idea how much time we have left with him. He continues with the hip pain which I have recently found out is a sign that the end is nearing. Please keep us in your prayers.

thoughts and prayers are certainly with you, your dad and family. David came very very close to ceasing the transfusions in Sept after 6 pints in one month but is hanging in. Amazingly thing that just occurred is that the platelets had been diving since May from 105 to 19 and have suddenly begun to increase.......28...40...47..go figure.

Mary that is wonderful news! congrats!

Dad has had 3 or 4 plts in the last 3 weeks/ tomorrow he will get 2 more and 2 blood.

We are have to take what is given us, and try to make everything as normal as possible for our family members who are going through such hard times. It does seem to me to be such an up hill battle at times and so very sad to watch as they try so hard to continue with treatment . My domenic is at hospital now having his fortnightly 2 units of blood, thankfully his white cells have improved to 4, so are encouraged about his progress. Thinking of all of you and sendingbest wishes to you and yours. Keep the faith.

Are there any caregivers here who are in their 30's-40's? I know that MDS generally affects people a little older. I am 39 and my husband is 44. He was diagnosed with MDS 2 years ago.
Thanks.

i just wanted to introduce myself. i am the girlfriend of a 48 yr old mds patient. he was diagnosed in october of 2010. i love him very much and it is killing me to see him suffer like this. he is on chemo monthly and awaiting an unrelated donor match. its hard for me because im in college full time ( day and night classes) and i also have two children one 11 (and bipolar) and one is 8 and (adhd). its very hard for me. im just hoping i can be supportive of others and also find support fo rme.

hi and welcome. it sounds like you have your hands full! are you getting any outside support? what is his level? are you living together? it is important that you take time for yourself too hon.

Wow, I have just been going through some old posts and I can't believe it has been 2 years since my Dad got his first infusion. They want him to start Exjade but he has been having other issues and frankly, I think his is scared to death to start taking it. Most believe that with knowledge is power but I'm not sure in his case. The list of side effects is crazy.

Posh, I read your older posts. Sounds like you have been dealing with this for awhile now and your posts are eerily familiar. My Dad has been facing some other issues so he went to a general practitioner. His oxygen level was at 70%. He had just left the oncololgist! I guess he just treats the blood disease. Don't mean to be harsh but it is frustrating.

it is very frustrating hon. been dealing with it almost a year now. Dads battle will end soon I am afraid. His platelet transfusions are not working and the dr told him a few weeks ago that she was trying to keep him alive until his great granddaughter is born. that will happen this friday. he sees the dr a week after that and I think she is going to stop transfusions but not sure. he got plts on friday and by monday his count was 6 again so he had to go get 2 units again. so right now he is getting 2 units 2 times a week plus his blood. hang in there guys. we are in this together.

My D is in a similar situation at the moment.He has been having blood trans. and recently plateletes also.He has been accepted to start a new trial Monday week which involves vidasa and revlimd. We have been waiting what seems forever for this trial to begin so we are very encouraged at the moment. I feel that there is always hope and if you and your family keep being strong there is always hope.Keep the faith Posh