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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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Old Tue Apr 26, 2016, 08:33 AM
Greg H Greg H is offline
Join Date: Sep 2010
Location: North Carolina
Posts: 660
The Insanity of "Hospital Policy"

I was admitted to Stanly Regional Medical Center [SRMC] last night, because of fever, and promptly pumped full of fluids, along with a bag of platelets, 2 grams of Vancomycin, 2 grams of Cefepime, and some amount of Zosyn.

I have had only one platelet transfusion, and, in that instance, I was being prepped for surgery and was pumped full of morphine. I wasn't paying close attention.

So, I was surprised when my nurse brought me, a B+ patient, a bag of B- platelets. I went to the mighty Google immediately, and discovered that Rh factor is pretty much not a concern where platelet transfusions are concerned, and the the whole ABO thing is not much of an issue either. I was surprised, but you live and learn.

On to my rant for today. My very bright young nurse this morning, as we discussed my treatment plan for the day, explained that the previous policy at SRMC had been to transfuse below HGB 8.0. But they have merged with a larger hospital network centered in Charlotte, and the new policy is to transfuse at HGB below 7.0.

Now, I love the fact that my little country hospital (They serve grits with breakfast! ) is part of a big, fancy network. When I had acute necrotic pancreatitis in April of last year, after a week here at SMRC, the local surgeon and hospitalist decided to move me down to CMC Main in Charlotte, where I was attended to by one of the top five Hepatopancreaticobiliary surgical teams in the world. All seamlessly, with records instantly accessible through the network. (The ride in a box EMS ambulance in bad need of shocks was less than pleasant, but that is why God made morphine.)

But I do not love the notion that a bunch of folks running the medical policy committee at CMC have decided to drop the transfusion standard by a point. And I do not love the fact that the standard is applied to all patients, whether they are in surgery or just poor unfortunate blokes with bone marrow failure, like me.

Here's the deal, as I see it: It makes no difference in terms of the utilization of scarce and expensive blood products at what HGB level you decide to transfuse a bone marrow failure patient -- because we are going to need the blood anyway!

If the state of my marrow means I need blood every other week, you can transfuse me at 7.0 and I will need two units in two weeks. You can transfuse me at 8.0, and I will need two units of blood in two weeks. You can transfuse me a 12.0, and I will need two units of blood in two weeks.

That's just a fact.

So, when it comes to treating bone marrow failure patients, wouldn't it make sense to transfuse us at a level that makes us comfortable and productive citizens?

I am one of the lucky fools who can get along just fine with HGB in the high sixes. But, back when Danazol was still working for me, I truly enjoyed life in the elevens.

I'm not suggesting that I should be transfused to keep me in the elevens. But I do recall a research nurse at NIH telling me they transfuse older patients (and let's face it, most of us MDS folks aren't Spring chickens) to keep them above 9.0. That would be a blessing, in my estimation.

Okay, rant over, But I am curious: what's the standard transfusion level at your hospital or doctor's office?

And second, maybe we need to band together or get the folks at AAMDS or LLS involved in bringing some rationality to transfusion policies for bone marrow failure patients. I think I'll try to watch that new transfusion webinar over at AAMDS and see whether the presenter addresses the issue. That might be a place to start.
Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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Old Tue Apr 26, 2016, 09:59 AM
bailie bailie is offline
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Greg, good points. In regards to the webinar, I have asked several questions at these webinars and they have answered every one just following the presentation. Get signed up and they will answer.
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Tue Apr 26, 2016, 01:40 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 577

my hospital and oncology team are at odds, so it depends on who is treating. The hospital says 7 unless symptomatic or receiving treatment. the oncology team says 8 is great, but will give you two to three bags if you are below 8. The hospital will only give you one to bring you up.

for the platelets, the science is clear on the RH issues, but in terms of how your body responds - platelets only have about a 10 day life span. when you get platelets, they have a maximum 5 days left, but realistically about 3 because of the average age of a platelet in the donor's system, which is presumably somewhere around an average - 5 days.

Fresh, non-expiring platelets help alot, but the hospital is almost always pawning off the expiring platelets, which I understand from a business perspective. ABO matched, RH matched irradiated platelets can and do make a difference if your body is not holding platelet transfusions well, so if you aren't seeing an immediate bump after transfusion, or they are going away within a day, ask about how old they are- were they expiring - and whether you can get matched platelets next time. It made a difference for me when I needed them for oral surgery.

MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Tue Apr 26, 2016, 06:55 PM
PaulS PaulS is offline
Join Date: Sep 2014
Location: New York
Posts: 247
Interesting - I received transfusions in patient during transplant - and out patient afterwards - Before transplant I received them out patient either locally or at City hospital with major hematology department - The general protocol was no transfusions below 10 -- at the transplant hospital the general protocol was transfusions below 7 - but due to cardiac issues I was transfused below 8. The the out patient infusion centers I'd be transfused anywhere below ten depending on how I felt and the circumstances - Always the doctors made the call to approve the transfusion at whatever level. I'd think if you felt bad below 8 or even higher - you should be able to have you doctor override whatever the hospital protocol is - at the transplant center my cardiologist made the call - before that my hematologist did - If you tell your doctor you feel bad below 8 - shortness of breath, chest discomfort etc - I'd think the doctor would order the transfusion and nobody would argue too much - Risk of malpractice trumps hospital protocol! If you aren't getting what you think you need don't be shy about insisting. My low Hgb led to cardiac problems ( as did frequent transfusions) - so there is a balance - but I think you are correct that as long as you are getting regular transfusions - they should give them when you need them to feel better - so you go from feeling so-so to feeling ok - Not from terrible to bad (as I sometimes did)
Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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Old Thu Apr 28, 2016, 05:02 PM
Ashleigh K. Ashleigh K. is offline
Join Date: Jan 2016
Location: Birmingham UK
Posts: 21
My doctor has said that they will transfuse blood once my HgB runs below 8 and when my platelets run below 10
Luckily no blood transfusions needed so far and only 1 platelet transfusion!
Diagnosed AA in 2009;treated rabbit ATG+Cyclosporin the same year, taken off Cyclosporin in 2011; Relapsed AA in 2015 and had horse ATG as of 08/02/16. I have copy neutral loss of heterozygosity in chromosome 6p, affecting the HLA region.
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Old Fri Apr 29, 2016, 07:30 PM
Sally C Sally C is offline
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 452
Hi Greg,
I was wondering how you're doing. Let us know when you get a chance.
Take good care,
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Old Fri Apr 29, 2016, 10:58 PM
triumphe64 triumphe64 is offline
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 440
Hospitals think everybody is making blood. There needs to be a way to keep them informed for BMF patients.
Dallas, Texas - Age 76 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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