What can we do to help spread awareness of Hep C?

[nan535]

My question is sparked by the thread on, of all things, urine.  You see my husband had a deep orange colored urine for about a year before he was diagnosed with Stage 4 Cirrhosis caused by Hep C he contracted in 1979 from blood transfusions.  He had been under a doctor's care for about 10 years for high blood pressure.  Though periodic blood work was done, indications of possible liver issues were never picked up.  His Hep C and Cirrhosis were only picked up after I took him to the ER when his liver disease progressed to a really serious complication (hepatic encephalopathy).

We are hearing reports that millions of people have this virus and don't know it.  I don't think enough is being done to inform people and I find this very troubling given what happened to my husband.  He contracted this virus because of blood transfusions over 30 years ago.  There is no way he could have known this would happen to him.  Thankfully he now has a new liver due to the generosity of an anonymous donor and his/her family.

Do you think enough is being done to get the word out to others who have this virus and don't know it?

[nan535]

Michael
Thank you for your concern. I was tested after we found out about my husband's Hep C and was negative. We have been in a monogamous relationship for 40 years so the likelihood of my getting it was very low.
That said, I would agree that it would be a good idea for anyone in an intimate relationship with someone who has Hep C be tested just in case.

BoceprevirGal
My husband needed 9 transfusions back in 1979 due to bleeding ulcers so there is little doubt he contracted the virus then.  Sorry to hear about your husband.  I hope he is doing well.

Nan

[BoceprevirGal]

  Well, I think it is outrageous that blood transusion recipients (prior to 92) arent instructed to have a Hep C test~  I believe the statistic is: a 10% chance of contracting Hep C from a blood transfusion, prior to 1992. So, many times, ater a bad accident, patients have multiple traansfusions. In other-words, i you have had over 10 transusions, then you are quite likely to have Hep C. That is how my husband contracted it, after his motorcycle accident.

[micheall]

Hi Nan;I was tested for HCV by my new healthcare provider as a new patient back in 1996.All dr's should test all patients,if not then the new patients.I would not have known if it wasn't for this dr.I have read in past discussions that many things have been started by the past members with little success.I guess there was not enough participation.I also thought it would of fallen on deaf ears,but you have to try.For some psycho to be infecting people in hospitals gets the media attention and not us.I hope your husband gets the best treatment and also get yourself tested.

[nan535]

Thanks for those links, OH.  The first website  looks particularly helpful in things we can do to get the word out.  

Every week my husband and I go to the transplant center for post transplant  followup blood work and what I have observed is that the majority of patients in the waiting room are older baby boomers.  Many of these patients are just like my husband - unaware of their Hep C infection until they had advanced liver disease requiring a liver transplant.

Though there wouldn't have been much my husband could have done medically had he known sooner, he certainly could have taken steps to minimize the toll the virus was secretly taking on his liver (i.e. no alcohol at all, a healthier diet, etc.)  Now that there is a treatment that can actually
cure the virus,  I think it is terrible  that a Hep C blood test isn't done automatically for anyone who had blood transfusions prior to 1992.  Doctors should ask the question as part of their patients' annual wellness examination.

There definitely is more that can and should be done. This is a ticking time bomb that will cost lives.

[orphanedhawk]

No! One big problem is hep C is not routinely tested for. It should be, especailly for those in the baby boomer generation. Although the CDC has recommended all boomers be tested, unless you ask your doc to test for it, they don't.

I've been thinking what we need to do is contact celebrities about hep C.
Send them arm bands, or the cool sun glasses I helped hand out on Saturday ( look at my profile for photos). Maybe if we got someone on the Colbert Report and other shows talking about the epidemic, we can shine a light on hep C and stop the silence about this virus.

Please look at the social side of the forum, about what some members here are doing.
You can also check out these web sites:
http://www.hepcchallenge.org/
http://www.healthyhepper.com/events.htm

[Dee1956]

Hello, I am sorry for you and your husband, unfortunately if a person is not tested for Hep C there is no way to know.  My liver enzymes were only slightly elevated so it was thought I had time to wait, until the biopsy showed I was transitioning into cirrhosis
I am glad he has a good doctor now though I would have thought the dar urine would have come up at some point
A few people on here are working on Hep C awareness, they are distributing bands, I have pictures on my site as well as Jon, Rog and Lady Fox.  you can find them by looking up people, Jon is tiredofhepc and I have post for people to sign a petition to get all oral meds approved.
Anything you can do to help raise awareness is great.  I have read that 75% of the people that have it do not know
Best to you and your husband