[Marlene]

Glad you both found the article useful.

I think that people with MDS may have less efficient blood cells than those with SAA. I have nothing scientifically to back up that statement though. It's just what we observed in John. We found his own platelets worked better than transfused ones and when his ANC was below 1, and it was for quite long time, he did not contract any colds, the flu or infections. Went through two winters without an issue.

Why they sent a dietitian? I've got a couple of thoughts, a bit sarcastic though...I think sometimes they need to justify their positions at times, or maybe they see a billable opportunity, or they cannot deviate from standard operating procedures and everyone gets treated the same way. Instead of finding out what the patient needs by speaking with them, they do what they want to do. The fact that you've been dealing with this disease and I doubt most of them have ever met anyone in your situation, they should be able to adjust their approach to your level of knowledge and experience. I found most dietitians/nutritionist associated with hospitals have a very narrow view. I don't think they saw anything new in your labs that would prompt them to now initiate a neutropenic diet. Just my opinion of course.

They may also be covering their bases since they did not take the necessary precaution while you were in the hospital. The nurse who noticed, probably brought it the attention of the staff which prompted corrective action to address the situation. Hopefully they learned and will not put you with infected people again.

The one major caution John took was to wear a mask anytime he went to the doctor's or to get blood products. Lots of hand washing too.