[Greg H]

Hey Sunshine!

It's so great to hear that you were able to spend some quality time with your Dad -- and that you also got to accompany him to the doc. My wife goes to all my appointments, and we really find that it helps to have four ears listening to the doc.

I'm sad to hear that your Dad is in so much pain from breathing trouble. I can only speak for myself, but low Hgb tends to make me short of breath as it gets lower. For me, that translates into moving really slow, instead of pain. But, near as i can tell, everyone reacts to slow Hgb differently. Some folks (like me) don't have too much trouble until the level gets down to 7.5 or so; others can have an 11 and not be able to pull themselves out of bed.

I'm also not smart about the implications of extremely high platelets in terms of pain. But I think it's good the Doc is looking at other possibilities; I don't recall too many folks complaining of pain around here.

How is your Dad's white cell count -- or neutrophils and lymphocytes? Getting low on those can make you more susceptible to infection. I had a nasty little two-day bout of pneumonia and pleurisy a few months ago. It was short-lived, but that was good, because the pain was as bad as a kidney stone! That weight loss is also pretty dramatic and is not something I hear about on a regular basis from folks with MDS. I lost a bunch of weight after being diagnosed, but mostly because I quit drinking beer, and started eating right and exercising. It sounds like something else is going on with your Dad.

I was notified of your post because I subscribed to this thread -- It's something you can choose when you reply to a post. The Board will send you an email whenever someone posts to a thread you are interested in. There's also a way to send forum members private messages and emails through the marrowforums system.

If the docs can get your Dad's pain down, it may be that he will be able to come to terms with having MDS. It's always hard and depressing and maddening to find out you have a disease that's trying to kill you. But so many folks are able to live a long time with MDS -- not everyone, but enough to give us hope once we get over being angry and depressed about having this crappy disease.

I hope you and your Dad have many, many more quality weekends together!

Take care!

Greg