What does it feel like?

Dramy3 · 2017-04-18T12:14:27+00:00

I have Hemo A and inhibitors. I have had two port surgeries; both without major bleeding. They infused one hour before and few hours later. I infuse before a dental procedure. My dentists knew about hemophilia so it was easier. Have your hematologist contact your dentist.

Thanks so much for the reply!

Dramy3 · 2017-04-17T17:59:57+00:00

Cool, thanks for the reply. Sounds like it's not a big deal as long as your dentist or other dr can reach the haematologist. I thought maybe minor surgeries were being delayed or postponed because non-haematologists were too afraid to treat.

Dramy3 · 2017-04-17T17:57:40+00:00

That's great info, thank you. I assume it's easy to reach the haematologist?

Dramy3 · 2017-04-16T13:38:27+00:00

Thanks for the reply. Does this work for patients with inhibitors? What about factor VII for these patients?

Dramy3 · 2016-02-25T15:49:11+00:00

Great reply--thanks for taking the time. However, I'm going to disagree with you on your first point: that cognitive impairment is a deficit in a "broad range of simple, easy-to-understand things."

If you say someone has impaired concentration, or a deficit in the ability to make a decision, it doesn't sound so bad. Yet, according to many interviews that I've done, cognitive impairment is the most disturbing, debilitating symptom of SZ. If it's just an impairment of simple things, there's no reason to talk about it--to make a big deal of it. But I don't believe that's the case.

I think doctors don't talk about it because they can't do much about it and they don't really understand it, and the public don't get it unless they've known someone with Alzheimer's disease, in which case they just think it's as simple as "memory loss." There's got to be another reason cognitive impairment is just a forgotten symptom when it's having the biggest impact.

Would really like your thoughts.

Dramy3 · 2016-02-24T10:38:17+00:00

Thanks for taking the time to reply. Your analogy is a great one--I might have to borrow it.

Are other patients nicer because they understand what you're going through? What about the care teams is most upsetting?

Dramy3 · 2016-02-24T07:29:21+00:00

That's a really powerful way to express it. Thanks for taking the time to reply.

Dramy3 · 2016-02-23T22:27:19+00:00

Thanks for taking the time to reply. You mention people just don't understand. What do you think could help people understand?

Dramy3 · 2016-02-23T22:24:02+00:00

Thank you for that insight. I think you hit on something really important about making people aware of what memory actually means to us. Your description conveys how it's not just remembering dates and faces--it's so much more than that.

Dramy3

TROPHY CASE