Blood Transfusion related Hepatitis C

[sbd5251]

I was wondering how many of the people on here got HCV from a blood transfusion?  In 1989 my daughter received a blood transfusion which resulted in HCV infection.   She died in 2004 and in trying to understand how this could have happened, I discovered that the blood supply in the United States is horrible.  I sued the Red Cross, who wanted to settle with me, which I did not do because I would have had to sign a confidentiality statement. The suit was dismissed because of a statute of limitations issue.  The Red Cross never understood that is was not about money it was about them cleaning up the blood supply.

[James10500]

I had two transfusions in the 60's.  That was my only risk exposure, other than hetro sex and as we all know those chances are low to null.  As my Doc ( Gregory Everson) explained to me there was no screening pre 1992, and the virus can lie dormant for decades as well.  It looks like it's been active for 15-20 years guesstimate based on the damage to my liver.

I am sorry for your lose.

Jim

[James10500]

Loss, not lose.

[sbd5251]

I have made it my mission to get them to clean up the blood supply and have a lawyer that is working pro bono for me.  I am going to send an open letter to my congressional delegation to the Washington Post.  Blood donations are the way the Red Cross makes their money. They send out blood everyday with HIV, HCV,  mad cow disease and anything you can imagine.  They send it out and then recall it but by the time they do, it has already been distributed. It makes me mad that they put children's lives at risk. It would shock you to know how bad it really is.  If you are interested go to http://www.fda.gov/safety/recalls/enforcementreports/default.htm  and scroll down to biologics and just look at what goes out and the reasons.

[meakea]

sbd5251 I am very sorry for your loss.  

In answer to your question, I believe I got HCV from a blood transfusion on December 30, 1954...a very, very long time ago.  It was my only obvious exposure but that's not to say I couldn't have gotten it from botched vaccinations, etc. as a child  I do, however, know that I have had Hep C for a very, very long time because my old medical records show elevated LFTs back into the late 70's...thus, I'm pretty darn sure it was the blood transfusion.  My situation is much different than your daughter's was in that Hep C was not even on the radar for the medical community or the blood banks back then...and, without the blood transfusion I would have been a dead 2 day old baby.

I haven't read your link yet but I will because I am interested in the blood supply news.  I will say that I am always appalled when people tell others who are wondering if they have Hep C to "go donate blood" and you will get a free test for Hep C.  That just makes me shiver.  I also know of a woman who sold her plasma for years and then one year they notified her that she had Hep C.  Turns out she had had Hep C for 20-30 years but none of the previous plasma tests caught it.  How many people did her plasma infect?

[Marcia2202]

I'm very very sorry for your loss. I can only try to imagine how it would be to lose one's child.

As to blood transfusion and blood products prior to 1992. The problem is that Hep C was only identified in 1989 and they were not able to screen blood for it until 1991 - 1992.

If I'm not mistaken, they actually cannot be sued for any hep c infections caused by blood or blood products prior to 1992. Anything after that would be negligence.

[nygirl7]

I agree with Marcia the blood supply is much safer now since 1992 than it was then.  If today a new disease were to be discovered though they could not be held responsible for the years prior...since they couldn't have known or done anything about it.

Of course there is always human error that could be factored as well but for the majority of us older folks I dont think we could prove that we got it via blood transfusion since many people have no idea how they got the disease and have not had any of the obvious ways (IVdu, xfusion, piercings etc) or had multiple ways that they could have gotten it.

I am very sorry for the loss of your child it seems to have happened very, very, very fast usually hepc is a slowly progressing disease that takes decades to do any serious damage.  Most of us have had it from 20 - 30 years and aren't in end stage yet.  I have never heard of anyone contracting it and dying in only five years. That is truly horrible.

[nygirl7]

OOOOops 15 years I guess I"m not as smart as I used to be :(

[sbd5251]

I am sorry to tell all of you but the blood supply today is not any safer than it was in 1989,  when Candace had her transfusion.  Please go to the  FDA website and just look at the blood that was recalled. They send it out and then recall it.   By the time the recall is sent out, the blood has already been been distributed.  The website is

http://www.fda.gov/safety/recalls/enforcementreports/default.htm

Go to any week and scroll down to biologics.  I check every week because I know the blood supply is not as safe as the American Red Cross claims that it is.  They recalled 112 units in January 2010 with HIV.  In the last few weeks, they recalled over 4000 units that donor suitability was not adequately determined.  As far as suing the ARC,  I could sue them and did, but they did not want it to go to trial so they used the statute of limitations to have it thrown out.  I live in  SC where the statute of limitations is 3 years and Candace got the blood in Georgia and Georgia's is 2 years.  

[sunshines76]

The information you give in your posts scares me. I got a blood transfusion as a newborn in 1976. It was in Ukraine, not the U.S., but sure USSR's blood supply was not any safer too... Now, my newborn son had a blood transfusion in 2007. It was offered to us an option, and I was against doing it, but the doc insisted on blood transfusion and claimed that it was as safe as it could be... I wonder what I have to check my son for now...

[wtgb]

I am so sorry for your loss.  I can't even imagine what you are going through.  I am very concerned about the blood supply as my 7 year old just recently received 2 blood transfusions from a well known childrens hospital (not for HEP C).  When my husband asked if he could donate his own blood for our son we were told it would take too long  this particular time (because it was an ER situation).  We learned at this time that it may be reality that he may need more tranfusions in the future. I am very interested in keeping informed about the blood supply.

I have made so many bargains with "the big guy" to please let me take this all on so my children don"t have to .  I am 37 weeks into treatment and hoping for the best!!
Please let me know how i can be an advocate for making sure as best I can that my son doesn't recieve tainted blood and I pray that the blood he already rec'd will not come back to us at any time in his life.  

I am inspired by your dedication to this in honor of your daughter

[sbd5251]

I have been researching this issue for 8 years now and have a wonderful lawyer that is helping me.  He is receiving no payment from me or anybody else because I cannot afford to pay such fees.  My advice to anybody that has had a blood transfusion is to go to your family physician and have their blood tested for everything.  If you went to the FDA website, you saw what concerns me.  I don't want another child to go through what Candace went through.  I have paperwork that I found where the American Red Cross had blood that had AIDS, they knew it had AIDS and falsified records and sent it out to hospitals anyway.  For each unit of blood that is donated,  they run it through a filtration system and get RBC, Platelets, Plasma and 5 or 6 other products from that whole blood.  They then turn around and sell it to people that are in need for $800 to $1200 a unit.  They have been fined by the FDA more than any other organization in the US.  The last time I checked the total was over $37,000.000  for blood policy violations.  

Go have your Doctor run tests for everything.  The vCJD is a form of Mad Cow disease.  Candace had an illness that as yet has not been diagnosed.  She got sick when she was 2 years old and had severe brain damage from the illness.  After a 16 days in Pediatric ICU and another 10 days in a regular room,  I brought home a child that had the mentality of a 2 month old.  She lived to be until January 11, 2004  I am not doing this for sympathy.

If I can help someone out there, I am willing to do anything I can.  If God forbid, anything does come back abnormal, get a lawyer.   I will give my lawyer permission to give you any and all the information that I have accumulated over the past 8 years.  I have a ton of information.  I have committee meeting minutes, newspaper articles and in fact I don't even remember what information I have.  

I WILL NOT GIVE UP ON THIS.   CANDACE IS PUSHING ME AND MY LAWYER ONWARD WITH THIS.  THE AMERICAN RED CROSS WILL CLEAN UP THE BLOOD SUPPLY AND QUIT LYING TO THE AMERICAN PEOPLE.

[sbd5251]

How do I remove best answer from a post.  I dont know how I did it.

[Trinity4]

If you don't mind me asking did your daughter die from liver failure of complications due to the brain damage?

Trinity

[sbd5251]

When she died we had an autopsy performed because we had never had a diagnosis.  The autopsy report said she had a mild case of pneumonia in  her lungs and cirrhosis of the liver due to chronic hepatitis C. Due to her brain damage she had seizures on a daily basis.  Because HCV effects your liver, we could never get her seizures under control.  Her Doctor was ahead of the curve and would tell me something was coming on the market and we tried everything as soon as it was released.   But nothing worked.  I believe that if the Red Cross had notified us when they found the blood had HCV, Candace's  quality of life would have been better.  She was in the hospital 14 times in the last 18 months she was alive.

As far as the autopsy,  my husband and I had decided that we needed to find out if it was hereditary.  We have an older daughter that was going to grow up and get married.   We didnt want her to face what we had.  

We didnt find out anything, but the pathologist asked me about keeping slides and i told her she could keep body parts if she thought we might learn something.  To make a long story short, Candace's illness started with the brain damage.  Her brain is at the Mayo Clinic.  The Pathologist at the Mayo clinic said they would probably study it for the next hundred years.

She could have lived a long time with the brain damage but the HCV was too much for her.  By the time we were notified,   I did not see the point  in putting her through the misery of treatment for the HCV.  Honestly, I think she was ready to go heaven, God was ready for her, and I had seen her suffer for 14 1/2 years and was ready for her to go too.  In fact, on Friday night I told her that if she was ready that I was ready.

I hope that doesnt sound callous or morbid about her brain, but it may help another child someday.

[Trinity4]

Thank you for sharing.  It doesn't sound callous or morbid to me.  I am a parent and it sounds like a loving mother who tried to provide the best quality of life she could for her gravely ill child.  I wish you and your family the best.

Trinity

[Diane12855]

I checked the link you gave us but I couldn't find anything that had to do with the Red Cross putting out bad blood products. I went back to 2008. What are you seeing that makes you think it is bad blood products?

Diane

[sbd5251]

http://www.fda.gov/Safety/Recalls/EnforcementReports/ucm229271.htm



PRODUCT
Red Blood Cells Leukocytes Reduced. Recall # B-2499-10
CODE
Unit: 53GR74118
RECALLING FIRM/MANUFACTURER
American National Red Cross, Greater Chesapeake & Potomac Region, Baltimore, MD, by telephone on December 15, 2005 and by letter on December 16, 2005. Firm initiated recall is complete.
REASON
Blood product, collected from an unsuitable donor based on travel to an area considered endemic for malaria, was distributed.
VOLUME OF PRODUCT IN COMMERCE
1 unit
DISTRIBUTION
MD


http://www.fda.gov/Safety/Recalls/EnforcementReports/ucm196398.htm

[sbd5251]

http://www.fda.gov/Safety/Recalls/EnforcementReports/ucm196398.htm

RECALLS AND FIELD CORRECTIONS: BIOLOGICS - CLASS II
___________________________________
PRODUCT
Red Blood Cells Leukocytes Reduced. Recall # B-0314-10
CODE
Unit: 18FG39903
RECALLING FIRM/MANUFACTURER
American National Red Cross Great Lakes Region, Lansing, MI, by telephone and electronic notification on July 29, 2009. Firm initiated recall is complete.
REASON
Blood product, collected from a donor for whom donor suitability was not adequately determined, was distributed.
VOLUME OF PRODUCT IN COMMERCE
1 unit
DISTRIBUTION
MI
___________________________________
PRODUCT
Red Blood Cells, Leukocytes Reduced, Irradiated. Recall # B-0343-10
CODE
Unit: 003KK63076
RECALLING FIRM/MANUFACTURER
The American National Red Cross - Southern Region, Douglasville, GA, by facsimile and e-mail on November 17, 2008 and by letter dated November 24, 2008. Firm initiated recall is complete.
REASON
Blood product, collected from a donor for whom donor suitability was not adequately determined, was distributed.
VOLUME OF PRODUCT IN COMMERCE
1 unit
DISTRIBUTION
GA
___________________________________
PRODUCT
Red Blood Cells Leukocytes Reduced. Recall # B-0345-10
CODE
Unit: 01GJ16697
RECALLING FIRM/MANUFACTURER
American Red Cross Blood Services, West Henrietta, NY, by facsimile and electronic notification on December 23, 2008.
Manufacturer: American Red Cross Blood Services, Albany, NY. Firm initiated recall is complete.
REASON
Blood product, collected from a donor for whom donor suitability was not adequately determined, was distributed.
VOLUME OF PRODUCT IN COMMERCE
1 unit
DISTRIBUTION
PA
___________________________________
PRODUCT
1) Red Blood Cells. Recall # B-0354-10;
2) Red Blood Cells Leukocytes Reduced. Recall # B-0356-10
CODE
1) Unit: 011KY30467;
2) Units: 011LE36084, 011KV25525, 011KY27758
RECALLING FIRM/MANUFACTURER
American Red Cross Blood Services, Saint Louis, MO, by facsimile on September 26, 2008 and letter dated October 31, 2008. Firm initiated recall is complete.
REASON
Blood products, collected from a donor who was previously deferred for testing positive for the human immunodeficiency virus (HIV), were distributed.
VOLUME OF PRODUCT IN COMMERCE
4 units
DISTRIBUTION
AR, TN, MO
___________________________________
PRODUCT
Red Blood Cells (Apheresis) Leukocytes Reduced. Recall # B-0357-10
CODE
Unit: 01FT28699 (Parts 1 & 2)
RECALLING FIRM/MANUFACTURER
American Red Cross Blood Services, West Henrietta, NY, by telephone on July 24, 2009. Firm initiated recall is complete.
REASON
Blood products, which were labeled as leukoreduced, but were not tested to verify white blood cell count, were distributed.
VOLUME OF PRODUCT IN COMMERCE
2 units
DISTRIBUTION
NY
___________________________________
PRODUCT
1) Plasma Frozen within 24 hours (FP24). Recall # B-0360-10;
2) Red Blood Cells Leukocytes Reduced. Recall # B-0362-10
CODE
1) 20X40824;
2) 20X40824, 20Z22013
RECALLING FIRM/MANUFACTURER
The American National Red Cross, Salt Lake City UT, by e-mail and facsimile on July 16, 2009 and by letter dated July 20, 2009. Firm initiated recall is complete.
REASON
Blood products, collected from a donor for whom donor suitability was not adequately determined, were distributed.
VOLUME OF PRODUCT IN COMMERCE
3 units
DISTRIBUTION
NC, ID

[sbd5251]

I cannot imagine why you did not see any American Red Cross blood recalls.  I personally think that if donor suitability is not adequately determined then they should not be distributing it to the public. I  just dont understand you not seeing even one unit blood that was distributed.

[jwalia]

Madam,

I do feel sorry for your loss.  As a father of a 14 year old thalassemic girl i can well understand the morbid fear of contacting any sort of these deadly infections whether HIV or HCV every time you go for a transfusion.  My daughter had more than 300 transfusions till now.  Last year she underwent bone marrow transplant and after her transplant, i was informed that her hepatitic virus got reactivated.  I don't know if it was reactivation or a new infection from the transfusions she got during the transplant.  Can you imagine the shock we had when we were informed.  It felt like out of frying pan into the fire.  
I belong to a middle class family and the expense which we have undegone for transplant and treatment was done by me without any govt or insurance help.  Now when they talk about interferon treatment i am not sure from where we can arrange the money.  
I am not a religious man, but sometimes it comes to my mind that "a man does not live by the bread he eats, he lives by the will of God himself".  For the past 14 years we have struggled, but she is still alive against all the odds. Every day when i see her, i cherish the movement as she is still alive and with me.

I really feel very sorry for your loss.  May God give you the strength to carry on with the wonderful work you are doing as it will save the life of so many innocent kids.

Love

walia  

[sbd5251]

I am so sorry to hear about your daughter.  I truly do know how you feel.  I am from a middle class family too, but my husband had insurance through his job. I dont know what we would have done without insurance.  I would try the drug companies.  Sometimes they have programs to help people with the expenses of drug therapy.  I am hoping that it will bring attention to the problem World Wide.  The Red Cross is in almost every country in the world.  I would like to add you as a friend and keep track of your daughters progress.   God helped me through the years with Candace.  He always sent me who I needed when I needed them.  Camdace  had a wonderful neurologist, family doctor, and pharmacist.  They all worked with me with her expenses and never refused  to do anything I asked.  They are all very close friends of mine now.    God will help you. too.  You and your family will be in my thoughts and prayers.

[Diane12855]

I don't know why I didn't see them either. I just highlighted the link you provided, right-clicked and selected go to that site. I'll try it again.

Diane

[nygirl7]

Well all I can really say is usually if you need a transfusion - you really need to have the transfusion.  When I was dying a few years ago I gladly took the blood regardless of what it could have had, at the time it was more important to me.  It's not the kind of thing people do just for jolly's. No system is perfect but certainly if you need the blood you need the blood.