CJD risk from open heart surgery

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Paleowoman

VR.org Supporter
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Jun 13, 2010
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Surrey, UK
I was a regular blood donor. I decided that I am feeling well enough to donate again so telephoned the blood donation service to ask if I could. No I cannot because I was put on a heart lung machine - as we all are with open heart surgery.

The reason is, it was explained to me by the blood donation nurse, that before a person is put on the heart lung machine the machine has to be primed with some blood or otherwise air would get into the patient. The blood put into the machine is donated blood and there is a very small risk from donated blood of CJD - that's why no one who has ever had a blood transfusion can donate blood, at least that's the rule in the UK.

I am absolutely furious because I was not told this before heart surgery and now I understand why some people here donate some of their own blood before surgery - I thought it was just in case they needed a blood transfusion but now I understand it must have been for priming the heart lung machine because no one wants to risk CJD !

The blood donation nurse explained that there is currently no test for CJD and all the cases of it have come from people who had received donated blood.

Definitely I will be complaining to my cardiologist and cardiac surgeon that I was not told this beforehand so I did not have the opportunity to donate my own blood for the heart lung machine.
 
This is all news to me. You may want to check with your surgical team whether they did in fact use any donated blood. In looking up heart bypass on Wikipedia, it says:
A CPB circuit must be primed with fluid and all air expunged before connection to the patient. The circuit is primed with a crystalloid solution and sometimes blood products are also added. The patient must be fully anticoagulated with an anticoagulant such as heparin to prevent massive clotting of blood in the circuit.
So it is not a given that you received donated blood. Regarding eligibility, here is what the Red Cross website says:
Blood Transfusion

Wait for 12 months after receiving a blood transfusion from another person in the United States.

You may not donate if you received a blood transfusion since 1980 in the United Kingdom or France (The United Kingdom consists of the following countries: England, Wales, Scotland, Northern Ireland, Channel Islands, Isle of Man, Gibraltar or Falkland Islands). This requirement is related to concerns about variant CJD, or 'mad cow' disease. Learn more about variant CJD and blood donation.
 
This is all news to me. You may want to check with your surgical team whether they did in fact use any donated blood. In looking up heart bypass on Wikipedia, it says:

So it is not a given that you received donated blood. Regarding eligibility, here is what the Red Cross website says:

This is news to me as well. I did ask pre-op about an autologous tranfusion in case I needed blood. This was not an option and unfortunately, I did end up requiring transfusions post-op (a number of years ago now).

FYI...My husband and I went to donate at our local Red Cross this past year. I was refused because they said they didn't want to put any extra strain on my heart and it was up to the discretion of the nurse.

This might put your mind at ease, Paleogirl:

http://www.ninds.nih.gov/disorders/cjd/detail_cjd.htm

"Many people are concerned that it may be possible to transmit CJD through blood and related blood products such as plasma. Some animal studies suggest that contaminated blood and related products may transmit the disease, although this has never been shown in humans. If there are infectious agents in these fluids, they are probably in very low concentrations. Scientists do not know how many abnormal prions a person must receive before he or she develops CJD, so they do not know whether these fluids are potentially infectious or not. They do know that, even though millions of people receive blood transfusions each year, there are no reported cases of someone contracting CJD from a transfusion. Even among people with hemophilia, who sometimes receive blood plasma concentrated from thousands of donors, there are no reported cases of CJD."
 
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I'll contact my surgical team next week to find out if blood products were added to the machine for me, but the blood transfusion service nurse seemed to be pretty certain and that's why they are excluding anyone who's been on a heart lung machine from donating :( You would have thought the hospital would have said to me that I would be receiving blood products wouldn't you.

Yes, I read that in the US you can donate blood 12 months after receiving a transfusion. Not so in the UK, no one who's had a transfusion since 1980 can. And apparently 1 in 2000 people may be carrying CJD in the UK ! It's something to do with BSE in the beef food chain in the period 1980 to 1996 so, if that's true, there are all these people walking round carrying it - the UK government is worried about a CJD time bomb. There was me thinking I couldn't get CJD because during the BSE period I was practically a vegetarian (I eat tons of meat now), and now.......now I'm too big a risk for the blood transfusion service to use my blood :( I'm O Negative too, the one they are always crying out for...and I was going to get an award at my next donation :(

Just read this on Wiki which says the FDA restricts Americans who've been in the UK for certain lengths of time in that period 1980-1996 to donate blood:

"On May 28, 2002, the United States Food and Drug Administration instituted a policy that excludes from donation anyone having spent at least six months in certain European countries (or three months in the United Kingdom) from 1980 to 1996. Given the large number of U.S. military personnel and their dependents residing in Europe, it was expected that over 7% of donors would be deferred due to the policy. Later changes to this policy have relaxed the restriction to a cumulative total of five years or more of civilian travel in European countries (six months or more if military)."
 
A quick scan of the literature shows

http://www.bmj.com/content/321/7252/17

Conclusions: Case-control studies do not suggest a risk of developing Creutzfeldt-Jakob disease from blood transfusion. Rather, a trend seems to exist towards a lower frequency of previous blood transfusion in patients with Creutzfeldt-Jakob disease than in controls. However, it is important to be aware of these studies' methodological limitations—primarily the choice of control population and reliability of recall of transfusion status.

Which is a little old, a newer study contradicts their finding.

http://www.ncbi.nlm.nih.gov/pubmed/16445812

Abstract
In the last decade, a new variant of the human prion disease Creutzfeldt-Jakob disease (now known as variant CJD or vCJD) was identified and causally linked to dietary exposure to bovine spongiform encephalopathy (BSE) during the 1980s and early 1990s. Preliminary studies in animal models suggest that prions can be transmitted by blood. Based on two recent reports of iatrogenic vCJD transmission by blood transfusion in humans, a Department of Health-sponsored risk assessment warned that recipients of plasma therapies are now at risk of contracting vCJD from potentially infected donors. It is believed that all the population may be susceptible to vCJD infection, although clinical cases have so far occurred only in methionine homozygotes at codon 129 in the human prion protein gene. A non-invasive blood-based diagnostic assay is urgently needed. Because the incubation period may be upwards of 40 years and there is no reliable screening test, it is currently unknown how many people may be in an asymptomatic phase of vCJD infection in the UK. However, there remains a distinct possibility that some infected patients may never develop clinical symptoms but will remain asymptomatic carriers who can potentially transmit the disease to other individuals. Therefore, screening of infectious individuals will be a critical component for individuals who rely on blood transfusions and/or blood therapies. In the absence of screening tests or effective therapies to treat this disease, a formidable worldwide public health challenge lies ahead to prevent new infections, accurately assess infection rates and treat infected patients.

I've underlined the key points. If you recall the UK was far more effected by mad cow disease.
 
also, for what its worth, evidence is emerging that blood from younger mammals (and probably people too) has something in it which that of older animals doesn't.

This article is interesting:
A protein in blood can repair age-related damage in the brains and muscles of old mice, returning them to a more youthful state.

Last year, the protein, called growth differentiation factor 11 (GDF11), was found to have a restorative effect on mouse hearts. If it does a similar job in humans, it could have huge potential for treating a wide-range of age-related diseases, say the researchers behind the latest work.

The idea that an infusion of young blood could regenerate ageing bodies was explored several years ago when the circulatory systems of old mice were physically connected to those of young animals, as if they were conjoined twins. This rejuvenated the stem cells in the bone marrow of the older mice that replenish their blood, and led to a wave of studies comparing the blood of old and young mice to try and identify the youth-giving substance.

so if this finding shows benefits of younger blood, it may be that older people are only valued for rare blood types and perhaps for making blood products (such as plasma).

Essentially there is much we still do not know in the biochemistry of the body and so a precautionary principle is prudent.

Interestingly studies (including done by the WHO) show that blood donation is becoming increasingly in the realm of the 'aged' portion of the population. With now known factors emerging as to why younger blood is needed it seems prudent to focus on the younger donors. I know that this may upset people who have had long careers in donating blood, but perhaps its time to quietly retire to the bench on that one and let the younger folks take the reins. Of course that is an entirely different problem ...

http://www.ncbi.nlm.nih.gov/pubmed/18005327
CONCLUSION:

The aging patterns of blood donors suggest the need for improved recruitment and retention in the young adult and middle-aged groups. A severe shortage of blood and blood components may be forecast in the foreseeable future unless offset by significant increased supply or reduced usage of blood and blood components.
 
I'll contact my surgical team next week to find out if blood products were added to the machine for me,

And apparently 1 in 2000 people may be carrying CJD in the UK ! [/I]

Do let us know what the answer is.

I am not trying to downplay your concerns, but if one in 2000 people are carrying CJD in the UK, wouldn't that make your chances of contracting it to be 0.05% assuming 100% of the UK population is donating blood including the carriers? I know you would rather have no risk than a very low one, but thought I would hopefully put it in perspective.
Wishing you well.
 
I'll definitely let you know the answer, but the fact remains that the blood transfusion service won't allow me to donate blood now as they consider that having been on the heart lung machine I have received donated blood and therefore are a risk to them ! I'm actually more annoyed than worried - if I had been told in advance I could have used my own donated blood for the machine and then I could now be a blood donor again.

It would seem to be a risk mostly in the UK from what I can gather.

Do let us know what the answer is.

I am not trying to downplay your concerns, but if one in 2000 people are carrying CJD in the UK, wouldn't that make your chances of contracting it to be 0.05% assuming 100% of the UK population is donating blood including the carriers? I know you would rather have no risk than a very low one, but thought I would hopefully put it in perspective.
Wishing you well.
 
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CJD sucks. My Dad passed away from CJD in 2010. I cannot donate blood and none of our family members can donate blood since he had CJD. Even though he had sporadic cjd. I had a lot lot of blood given to me during and after my surgery (34 pints!) and I am not worried about it. I did ask the surgery team if the operating room or any equipment was used for brain surgery and it was not.
 
That is sad news because in America, we can donate our own blood, which is very little, for bypass surgery. UK is behind the times on this. It is safer to use the patients blood, because so little of it is used during surgery. It matters not that the patient is on the heart and lung machine, it can be done for safety reason. I was lucky because I hardly lost any blood, but there are those whose bypasses last a little longer and self donation in America is safer due to the Aids situation, and Hypatitus.(sorry for the poor spelling). But with you there, do it their way.
 
Anne,

Thank you for posting this topic. I emailed my surgeon's office to ask whether I need to bank my blood beforehand. I also spoke to a friend who works in a Los Angeles area operating room, and she said they prime the heart lung machines with saline solution. That particular OR never uses blood to prime the heart lung machine.
 
Some good news. They don't always prime the machine with blood ! I contacted the Perfusionist Society who confirmed that, and, following AZDon's advice, I also contacted my surgeon, and yesterday I received a letter from the Chief Perfusionist, who controlled the heart lung machine during my surgery. In her letter she writes:

"I can confirm theat she did not receive any blood or blood products during her stay. She had 4 units of blood cross-matched, according to our protocol, and all 4 units were returned to the blood bank. I can also confirm that no blood was used during Cardiopulmonary bypass either in the prime or throughout the case, as this would have been one of the pre-cross matched units."

I'll contact the blood transfusion service today and ask who to forward this letter to so I can start donating blood again.
 
I am very new here and anxious to say the least. i am to have valve replacement surgery soon and have only received such negative responses , all i hear is putting my papers in order and i know that the rate of success is 98% but i need to be with friends that can help me be more positive. more later...i just joined . thank you ,i live in Ontario.
 
You'll never guess AZ - I phoned the blood donation service today and the specialist nurse said I still couldn't donate. A doctor came on the line to explain to me that their regulations are that if people have had major heart surgery they won't let them donate because of the risk - the risk to the donator that is :( He said that was EU regulations. And I'm supposedly fitter than before surgery ! I explained all that and that I'd had surgery because of a defect I was born with, that it wasn't due to heart disease….no good, they won't let me donate :( I'm really quite disappointed :(
 
A doctor came on the line to explain to me that their regulations are that if people have had major heart surgery they won't let them donate because of the risk - the risk to the donator that is
Maybe I'm a trouble maker, but if that is the case then I would expect it to be clearly stated in writing. It is not. I looked up the donation criteria on the UK website and for Heart Operation and for Heart Bypass operation it says:
Sorry, but we need to have more information for us to answer your enquiry. To give you an answer we will need to speak to you. Please call our Donor Helpline on 0300 123 23 23, Monday to Friday, 8am to 7pm as we may need to transfer you to the Referral Team who can deal with more complex issues.
If it is simply that you cannot donate due to heart surgery, then why don't they say upfront bypass patients can't donate?
 
Maybe I'm a trouble maker, but if that is the case then I would expect it to be clearly stated in writing. It is not. I looked up the donation criteria on the UK website and for Heart Operation and for Heart Bypass operation it says:
If it is simply that you cannot donate due to heart surgery, then why don't they say upfront bypass patients can't donate?
I agree. It would save a lot of trouble if they stated that in writing up front along with the other exclusion criteria. I wonder if the nurse and the doctor I spoke to made a mistake…but I guess I won't find out.
 

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