more and more

So now I have been told that despite her CMV negative on admission status, she’s been given CMV untested products 4 times.  Then I was told that the Dr. yesterday was wrong and it’s not an antibody transfer risk, it’s an actual viral infection risk.  Which in Ruby’s case would be life threatening right now.

Then I was told the policy is across Canada that neutropenic patients (those who are immune compromised to the n’th degree) don’t receive CMV negative products unless they are awaiting a transplant from another person.  Then I read three province policies from 2014 that are actually completely in opposition to this “new” policy here in BC.  Which negates the Canada wide theory, also it questions the validity of that decision.  Then I read a bunch of articles on how CMV is a really big mortality risk in patients such as Ruby and also for patients receiving their own stem cells.  Then I was told that CMV negative products are held for transplant patients only (greater good evaluation) which I think is great and then I was told she was given CMV negative just because her’s need to be washed and with the luck of the draw they gave her older platelets that just happened to be CMV negative because no one has been needing the CMV negative platelets.  (Greater good not required as often as thought?).

I requested a retest of Ruby as of now to gain her current CMV status.

Then I respectfully requested CMV negative products until that is established.

I had to correct the delivery of the information this morning to a more respectful tone towards me.  And then I was asked why Ruby was receiving a certain volume of fluids in her line.  Which I replied to in a very respectful way.  I am not the one who sets the volume of fluids nor am I the one with the ability to assess the volume requirement.  That would be a decision made by the doctor, therefore, if you feel she does not require that amount of fluid, perhaps you should reduce that?  Yes.  Don’t question, don’t ask, don’t educate yourself but you as a parent are 100% responsible for accepting and signing off on any drugs/treatments/blood products given…..without education on risks or current policies, without information and without questioning.  What a fantastic situation.

Please forgive my current disillusionment.  Please forgive my current disbelief.  I just think that blind acceptance is not applicable nor is it proving to be safe.


3 thoughts on “more and more

  1. This brings me back to the knowledge I gained when a friend was a transplant patient, many eons ago. It can be an antibody transfer issue if you are a transplant patient receiving a non-CMV organ, because you will reject the organ. It was my understanding that the best situation is non-carrier to non-carrier and carrier to carrier. However, if someone has a bleed-out and needs blood NOW then they just go with what they have on hand because you will die without enough blood, regardless of what type it is. If you are immune-compromised and non-CMV you certainly want non-CMV blood product. When the person and the blood product (or organ) are not matched it can trigger the virus. I can’t say how the blood dept. manages their supplies, because this has changed since the time I learned about this. My guess is the doctor has to request specifically each and every time because the blood dept. may not know if it is a dire bleed out or if they have time to screen for the CMV.
    I guess the best I can say to help you is that you are certainly correct in insisting that the blood product match Ruby entirely. It really, truly does matter. This I do know without question. Know that these doctors are trying to remember every detail, but they are not multi-tasking mothers watching over their offspring and growling at any danger.
    Love to you, (HBD to Holling), and special healing thoughts to Ruby.

    • Well it turns out that even if Ruby is CMV negative, she is not entitled to CMV negative blood as per a new policy here at BC Childrens. No matter how compromised her immune system is. No matter how this is documented in numerous articles and med journals as a huge risk to survival in post chemo patients. So…..ya. Let’s just all hope she doesn’t require any further blood products. It’s not a matter of them remembering the details. It’s the fact that they don’t actually treat non-CMV patients appropriately…by policy. Whether this is logical or not seems quite irrelevant.

      • Realize, that at least Ruby is not in danger of rejecting an organ . As her counts increase again and she can slowly heal and remove herself from the immune-compromised group, she will become strong enough to deal with the virus. Her body has powerful healing energy and she is working towards health. With Love.

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