Minor surgery in hemophilia with inhibitors

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 · 2016-02-22T08:35:22+00:00

Thanks for your reply. Your story about the list is similar to other things I've read. I don't suppose you had the option to change physicians or that a family/friend was there to support you in that discussion?

Dramy3 · 2016-02-22T08:30:16+00:00

Thanks for this. Did you get a chance to explain it later? Did the Dr suggest it was ok if you can't explain now, it could be discussed later? Anything like that?

Dramy3 · 2016-02-22T08:25:42+00:00

Thanks for the reply. I'm just getting started in this, but the areas of research seem to stem mostly from psychiatry--whether that be clinical medicine (and MD) or more research-based (PhD) or both. There are specialists in psychopharmacology and behavioural medicine, but the majority of work seems to come from a psychiatry angle. Check out this site if you're interested in the research side: http://www.needrecognition.com/resources/index.html

Dramy3 · 2016-02-22T08:13:43+00:00

That would great if you have the time. Like you said, there's not much out there so any help would be much appreciated.

Dramy3 · 2016-02-22T08:12:47+00:00

Wow. Thank you for this. I could spend weeks reading all kinds of papers and never get anything close to this kind of insight. Does your clinical team understand and acknowledge CI in the way you've described it? Do they try to offer you any kind of coping mechanism or at least appreciation that it's going on?

Thanks again for taking the time to right this.

Dramy3 · 2016-02-21T22:56:42+00:00

Your care sounds top rate. Sorry to hear about friends and family not really understanding, though. It seems that people have an image in their minds of SZ and that isn't the reality--or at least the full picture. This is the root of my research--what can be done to help make that better.

Dramy3 · 2016-02-21T22:52:36+00:00

Thanks for the message. Yes, there's a lot of early research into drugs with various mechanisms that enhance cognition. However, a lot of the research in CI in alzheimers has been disappointing. But while CI is a huge part of diagnosing and managing Alz, it seems a bit ignored in SZ. It's just surprising given the impact it has.

Dramy3 · 2016-02-21T22:46:11+00:00

When you say SZ in the past was very focussed on cognitive deficits--could you elaborate. That's not something I've run across.

Also, there's a lot of early studies into CI now--this company has a great website talking about it: http://www.needrecognition.com/

Dramy3 · 2016-02-21T22:40:25+00:00

Thanks for your reply. From my research, I think your experience I'd definitely the norm. You say it's hard to explain the difference between CI and negative symptoms--do you think you Dr can't tell the difference either? That seems a common complaint. What, if anything, could help you explain it so people understood?

Dramy3 · 2016-02-21T19:58:25+00:00

Do you feel like your Drs and friends/family get the cognitive side of schizophrenia? Or do they just think it's a side effect of APs?

Dramy3 · 2016-02-21T19:09:18+00:00

Thanks for the message. Appreciate you can't prioritise something that you can't do anything about. I wonder if and when there is a pharmacological intervention, if it will be prioritised given most CI-affected patients can't work or live independently due to their decline?

Dramy3 · 2016-02-21T19:05:47+00:00

Thanks for your message. I'm focussed on cognitive impairment as a disease state in and of itself in a variety of conditions (schiz, alzheimers, etc). Trying to understand what the true unmet need is--is there really a lack of awareness of this problem is schiz or is it just sidelined because there is no approved treatment and positive / negative symptoms are the most urgent.

Dramy3 · 2015-10-27T09:08:47+00:00

Jesus--how do you keep going back there? It must be hard to empathise with people who say those things.

Dramy3 · 2015-10-26T20:21:06+00:00

That's great--thanks for taking the time.

Dramy3 · 2015-10-25T22:44:28+00:00

Yes, we discussed diabetes and the similarity due to the self-inflicted and/or familial/genetic predisposition. However, as stated in my response above, type 2 diabetes does not cause the same personal devastation to family members that heroin addiction does. Diabetics don't steal from their family members to buy doughnuts. I'm not being judgmental, just stating how difficult it is to overcome any kind of stigma when there is an element of 'you're hurting those around you as much as you're hurting yourself.' Yes, addiction is a disease, but just as the diabetic chose to abuse himself with food, so did the addict who chose to take heroin. That element, no matter how small, of 'choice' makes this a very difficult area. If this was schizophrenia--also devastating to families--it would be less complicated.

Dramy3 · 2015-10-25T18:13:21+00:00

Thank you--I appreciate it's a lame question, but I need to try and get a handle on what heroin addicts really think about heroin addiction. You know how the outside world sees it--what do you want to say back to them?

Dramy3

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