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Unspeakable

ChemGal

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Unspeakable airs tomorrow, it's about the tainted blood scandal.
Unspeakable creator has inside perspective on Canada's tainted blood scandal | CBC News

I'm interested to watch, but also a bit hesitant as I've had some pretty overwhelming feelings at times regarding how easily I could have made up a '5th H' - the 4 being homosexuals, Haitians, heroin users, and hemophiliacs (some terms not PC).

Now, the blood supply is much safer. Even with unknown diseases the processing of blood products includes things like pasteurization and filtration to reduce risks. Still though, my husband is not allowed to donate blood based on my blood product use.

And for me, I was alive and having attacks during that time. There just weren't blood products being used for HAE that came from a huge number of donors, it was fresh, frozen plasma back then and I of course wasn't anywhere near the timeline of my diagnosis so wasn't receiving any of that anyway.

Not something I think about all the time, but I did have one evening where it all just hit me and felt pretty anxious about it all. Since then I've certainly had uneasy feelings regarding the topic.

It doesn't help either when people like Pamela Wallin use fear mongering for their reasoning regarding banning paid blood donations, when that is not actually part of their decision making process, but rhetoric tactics they use on the public.
 

Pinga

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@ChemGal - do any of your family members have HAE? Have they been impacted byt he blood supply issues.
 

ChemGal

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@ChemGal - do any of your family members have HAE? Have they been impacted byt he blood supply issues.
Nope, I know no one personally who has. I have come across content from those who have been affected though - actually none with HAE. I think even FFP (fresh frozen plasma) wasn't being used to treat people with HAE as much as it should have been at the time.

So the way I feel connected to this isn't a super personal connection, but the feelings still pop up sometimes. I do think I have a much healthier viewpoint now compared to when it first happens, funny how some things just catch us off-guard like that.
 

Luce NDs

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Unspeakable is the ineffable nature of what we don;t know ... and yet authority toute all the time ... without question!

That would be critically negative to their agenda right ...

The literature on such stuff is almost endless ... perhaps goes on and on ... cause we listen poorly!
 

ChemGal

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I did watch it last night, and it did bring up many thoughts and questions for me. No major emotional response compared to what I have been hit with. It did get me into reading more about this. I was well aware of this before my HAE diagnosis, but I was born during the timeline the first episode covered so the information I picked up plus recall is different than what people who were older would have. I don't even really remember the switch of the blood system from the Red Cross to Canadian Blood Services although I knew it was something that happened and surely heard about it at the time, it's not something that stands out in my memory.

@Pinga I did think more to about my feelings in general including the times when I have felt really anxious. I dislike it when people 'interject' themselves into someone else's tragedy, it can come across as very attention seeking and dishonest. I've thought more about that though and I certainly don't think what I have gone through as being similar to what those who were using blood products at the time dealt with, even if they didn't end up contracting anything from it. I haven't taken something current and done that though. I think a fair bit of this has just been completely processing some s**tty things that are associated from managing this illness. So I've concluded that it's not being dramatic or whatever, it's a valid response to stuff I have gone through so no need for the guilt. Not that I felt like you were trying to shame me for it or anything, but that's a thought that has popped up for me before too and your question did bring that up again as well. The connection to hemophilia is also very strong when dealing with HAE, almost all of our systems are based on what was already in place for those with hemophilia. Even funding models. Awareness events bring it up all the time, including some of the things people have done with the Canadian Hemophilia Society

It has been really good to learn more about this. While I knew those with hemophilia were hit pretty hard at the time these numbers really stand out"
Canadian Hemophilia Society said:
More than 1,100 transfused Canadians were infected by HIV, of whom 700 had hemophilia and other bleeding disorders, and 400 were transfusion recipients for other reasons (trauma, surgery, childbirth, cancer…).
When you consider how many people get transfusions in Canada vs. the number of people with hemophilia, that really shows just how much higher the risk was with blood products.
 

Pinga

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Hi @ChemGal - there was no intention to shame at all. I just had never thought of the blood crisis also impacting you, and thought, wow, so many loads to have to carry.

I am glad that it didn't. you have enough.
 

ChemGal

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Hi @ChemGal - there was no intention to shame at all. I just had never thought of the blood crisis also impacting you, and thought, wow, so many loads to have to carry.

I am glad that it didn't. you have enough.
I can't imagine what families would have gone through at that time with a new diagnosis.

I know for some there's still a fear with blood related stuff, whether that's HIV or something else. I didn't really have that hangup, it was well after starting treatment that one day it just hit me that in the 80s HIV was new and unknown, and that possibility is still there with some else, although things are in place to help reduce those new risks too.
 

Carolla

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Interesting to read about your experiences & thoughts ChemGal.

I received multiple units of blood in 1984. Later in the 1980's I asked my GP to test me for HIV - although I was symptom free, it was nevertheless a concern for me. He was a bit reluctant actually, which surprised me, but we talked about it and he did provide an order for testing for me. Fortunately it was a negative result, which put my mind at rest - as a young mother & wife,and healthcare worker, it was something dwelling somewhere in the recesses of my consciousness & creating some anxiety.
 

Pinga

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I get the anxiety.

I heard that an ex-boyfriend died of AIDS. It was a few years after we had dated, but, I too wanted a test, , had one , and was fine.
 

ChemGal

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The testing stigma just seems so odd to me, but I know it's still a problem. It's not something I ever requested in the past, but is part of being on a home blood product program now - a yearly test, along with hepatitis both B and C I think. I've never thought of that as being a big deal, although when I was already at the doctor going over test results she seemed shocked when I brought up wanting to make sure everything was ok, including the HIV test. I just think of it in those terms, as it's only my hematologist who orders the HIV one so I can easily keep track of whether or not I saw that 'set' of tests - he often includes iron and a few other things which do go out of normal range for me.

Any doctor should just be willing to do the test, even if someone's risk is low. It's cheap (maybe not so cheap back then? not so sure) and saves so much trouble in the future in the low percent of times it does come back positive.

Chemguy remembers some of the Red Cross/CBS changeover better as both his mom and grandma were requested to come in for testing because of transfusions in the 80s - no problems for them, be his Mom would have talked about it more than my parents would have.
 

Luce NDs

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Ineffable ... who exactly does silence protect ... blind dogmatism?

If you can't see it will we be considered stoned or justly stunned by human injustice and ass binding activities wahls to de soude ND!

In images of plutarchy there is a cartoon of Justice being scroo 'd ... a cereus offence! Some have the BS that such things should be kept out of the view of the populace ... a delicate manner of dealings? Alas not to be raise in religious forms ... except perhaps in myth!

Be mindful of eM ...
 

paradox3

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Interesting to read about your experiences & thoughts ChemGal.

I received multiple units of blood in 1984. Later in the 1980's I asked my GP to test me for HIV - although I was symptom free, it was nevertheless a concern for me. He was a bit reluctant actually, which surprised me, but we talked about it and he did provide an order for testing for me. Fortunately it was a negative result, which put my mind at rest - as a young mother & wife,and healthcare worker, it was something dwelling somewhere in the recesses of my consciousness & creating some anxiety.
Understandable. When I gave birth in 1986 an order was written for a transfusion. The obstetrician overrode the order and cancelled it because she believed blood products were just too risky for a new mother.
 

Greywolf336

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I was born severely premature in 1989. When I was about 12 (that age could be wrong) my parents received a letter in the mail informing them that due to blood transfusions I received while in the hospital as a newborn, I needed to get blood tests done for Hep and HIV. I was thankfully negative for both but looking back now, I can imagine how scarred my parents were. As an added bit of stress, my parents weren’t informed and didn’t realize I had even had blood transfusions at the time, mom was not impressed to find out that much later.
 

Carolla

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Now that's interesting Greywolf336 - my dtr (born in 1984) was also a premie - I'm not aware of her receiving any blood products although she always had lines running with who knows what during her lengthy NICU stay - but I have to say my own memory for details of that time is most likely pretty sketchy - so overwhelming. Now I'm curious. Medical records would be long gone by now.
 

Luce NDs

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Our oldest daughter was born with a blood disorder in 70 ... had a complete blood transfer and has all kinds of difficulties with her health since then ... inclusive of physical, mental and emotional transients ...

Enough to upset the parents sense of continuation ...
 

ChemGal

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Our oldest daughter was born with a blood disorder in 70 ... had a complete blood transfer and has all kinds of difficulties with her health since then ... inclusive of physical, mental and emotional transients ...

Enough to upset the parents sense of continuation ...
That's concerning. I know with certain components of blood their is a higher risk factor of adverse reactions and they have recognized things like past pregnancies of donors can contribute to this.
Were you ever given an explanation of what happened?
 

Luce NDs

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That's concerning. I know with certain components of blood their is a higher risk factor of adverse reactions and they have recognized things like past pregnancies of donors can contribute to this.
Were you ever given an explanation of what happened?
In short I don;t believe anybody really knew of cared ... as they were too busy! Look after the present mode ...
 

ChemGal

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CBC has timelines on their website for each episode. The level of negligence was so much worse than what I knew about before this. Some of the decision making seems outright abusive to me.
 
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