[DarlinGin]

Frank,

My husband gets several units of red cells every week and had become known to staff as "Mr Antibody" LOL They even had to use double the blood samples to test for all his antibodies. It’s odd but sometimes they go away as well. Irradiated blood according to his nurses actually helps reduce the likelihood of developing antibodies.

Virginia

[DarlinGin]

ROTFLOL Oh Brigit Only we could laugh about this. They way you described living is what we’ve had to do non stop since last October! Bill’s blood counts never recovered from chemo. I swear I should have bought stock in GermX/Purell because I’m making those companies rich. I’m a fiend about keeping the house germ free…especially since Bill is diabetic as well and 4 times a day must prick his finger and give himself shots. No breaks in the skin or pinpricks would go unnoticed. LOL Bill’s highest platelet count in the past 2 years was 57,000. Tiniest little thing and he bleeds everywhere. Not good in a home with all white carpets!

Weather is weird here in Alaska today…14 inches of snow and its still snowing!

Sandy – I guess that’s the hardest part for me. We and Bill’s doctor’s are not a team…never have been. She likes to just say “this is what we are doing…” and gets annoyed by questions or hesitations about following and does not like to explain anything. That works for Bill because he doesn’t want to know…it does NOT for me. I cope better when I have a grasp of what to expect. We’ve driven each other absolutely bats for seven years. I literally had to lose my temper and scream at her to even get her to allow quality of life issues to be part of the plan. She would NEVER be MY doctor.

[DarlinGin]

Jocelyn,

Check with your doctor for sure, but don’t panic. My husband has been experiencing the same thing and while they did do mammograms (he was not happy with that LOL) they were not concered. We were told it is sometimes a side effect of treatment, the lymph glands just get irritated and swell a bit. Definitely get it checked though!

[DarlinGin]

Fran,

Your husband sounds very much like mine. Until mid-April my husband sometimes slept as much as 18 hours a day. The extremely low blood counts just left him with no energy. I KNOW it’s scary! There were a lot of days I’d keep tip toeing into the bedroom just to reassure myself he was still breathing. His oncologist felt like the sleep was perfectly normal. My best advice is to make the most of small moments. If you can’t get out for your anniversary or birthday plan a romantic little picnic on the bed. Mark the event, and cherish the time. Often I think dealing with MDS is mostly about lerning to treasure the smallest of things. A five minute walk, a conversation, a quiet game of Scrabble, you just begin to live on a different scale.

[DarlinGin]

Fran,

It’s hard not to laugh a little, nosebleeds have become a way of life around our home in the past 18 months. I’m still doing double takes because for the past month the tiny ever present drizzle of blood from my husbands nose is gone! In general you don’t have to worry about nosebleeds. HOWEVER, if it bleeds for more than 15 minutes without stopping go to the ER. Hard to believe its only been 2 months since my husband came downstairs to announce his had been gushing…for TWO HOURS. That was the beginning of a long and terrifying few weeks….but ever since he’s been better than he’s been in years.

I on the otherhand am twitchy and not trusting how good things are for the moment. LOL

[DarlinGin]

Phyllis,

I can’t even imagine how hard this time is for you and your husband. Please know that you are prayed for daily. In the midst of it all I wish you moments of joy, they are there if you keep your eyes open.

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