New here

[glory]

Good Evening,

Glad to see there is another site around to help those in need with a loved one with
Hep C.  My husband has Hep C with cirrohsis. We have been battling this horrible
disease for many years now. As strange as it may seem, my husband's brother also
had Hep C and had a transplant 2 years ago, my husband's sister also had it and cleared
the virus, my mother in law who has never drank in her whole life has cirrohsis, too
many in one family.  My husband's father was in the navy/retired, we think the injection
gun might have started the hep c strain in the 3 siblings that have it.   My question
is how bad does the bilirubin and protime have to be before they put you on the
transplant list?  I am praying for a cure for everyone, also praying that God chooses
not to heal my husband of the disease that He will stablize it and slow it down.
God Bless- Glory

[Hank's mom]

A frie  nd who is her 50s' mother died from the disease. (It was not discovered till the autopsy.) She had been an operating room nurse. Two of her three children have it, my friend had remained clear as has her daughter. Naturally, no one knows if the mom gave it to the kids accidently somehow  or if they were given it in birth. My husband's brother died from other things but had HCV which he probably got in Nam. It was never treated either. He and my husband gave each other homemade tattoos, and yet my husband is free and clear. Its so hard to tell and can be such a family heartbreak. I wish you and your husband all the luck and wisdom medical knowledge can offer. As rough as the treatments are, we are fortunate to be alive at a time when there are treatments, new trials and research. That is news that gives hope. Your husband is very lucky to have you standing beside him. Luck and the power of love - momxfive

[robin]

Glory...sorry to hear about your hubby and his family. What you need to do is calculate his MELD score. You can google the word MELD and it will bring up the Mayo End-stage Liver Disease site where it will ask you to enter the bilirubin,protime and I'm thinking the albumin but I may be wrong on the last one...the transplant doc always calculates mine and it will give you a number. Different centers use different numbers so far as when they list a person so you will need to contact the hospital you plan to use and see what their criteria is. His hepatologist should make the referral because it takes a while to do all the work-up, except in critical instances and there is normally a pretty good wait. I've been listed over a year and a half and figure it may be another before they find a match...if they do. Keep your spirits high...robin

P.S...there are some people here who have had transplants who might better be able to help you.

[linda]

hey glory. welcome to our site. i'm glad you found us and i hope we'll be able to help you.  i don't think i've ever heard of so many family members being infected hcv at once.  there is an abundance of info, compassion, and encouragement here. i hope we hear more from you soon.   ~~linda~~ 

[Rainbow]

I have a comment about the "injectiuon gun". ....the jetguns useed to vaccinate the military until 1999.

Veterans have the highest rate of Hepatitis C infection.  1 in every 10 Veterans is infected .....62.7% of Vietnam Veterans have Hep C.....most don't know it.  The second most frequent group is  post-Vietnam at 18.2%, followed by 4.8% Korean conflict, 4.3% post-Korean conflict, 4.2% from WWII, and 2.7% Persian Gulf era veterans.


http://veterans.house.gov/hearings/schedule106/apr00/4-13ben/groselle.htm

 
There is now new evidence showing that jetguns did get contaminated.  The initial impact of the jet on the skin produces some splash and there was blood that backed up into the multi-dose vaccine vials.  Nobody wore gloves to give vaccines,  they didn't clean the skin before injecting, AND THEY DIDN'T  WIPE THE JET GUN BETWEEN RECRUITS AS PER MANUFACTURER INSTRUCTIONS. 

http://www.nature.com/nrd/journal/v5/n7/full/nrd2076.html



Dr Lawrence Deyton MSPH, MD Chief Consultant, Public Health Strategic Health Care Group  for the Veterans Administration, admitted that infection from jet injectors is possible.  Same thing the WHO said. 

http://www.hcvets.com/data/transmission_methods/plan_backfires.htm


Now we just have to get the CDC to admit it and stop blaming their infection on drug use alone.  (Most of their studies look at the same risk factors....IV drugs, transfusions and sex.  I can tell them exactly what they're going to find out without even reading the study protocol.  They don't look at other risk factors like jetgun injections, sharing razors, haircuts, dental procedures with improperly sterilized instruments while in the military, etc.).   It amazes me that they continue to deny it when their own unpublished studies SHOW THAT JETGUNS DID TRANSMIT INFECTION, whether the skin was cleaned or not and that the vaccine vials got contaminated. 

http://www.hhs.gov/nvpo/meetings/dec2003/Contents/ThursdayPM/Weniger.pdf         (Starting on page 29)


Their excuse for continuing to use the jetguns until 1999 when we finally got the FDA to ban their use......

"The benefit of being able to vaccinate large numbers of people outweighed the risk of infection for a few."

Except that 62.7% is not "A FEW".

A recent study on 113,927 Veterans under the care of the Veterans Administration,  showed that from those that tested positive for Hepatitis C, ONLY 11.8% are approved for treatment.  Reasons why patients were not prescribed treatment were:

- Age,  Minority race, Alcohol  or drug  use,  Hepatitis B co-infection, having had a stroke in the past,  MILD depression,  Bipolar disorder, Schizophrenia, Liver cirrhosis,  anemia,  low platelets, and diabetes. 
 
Considering that the Hepatitis C virus causes diabetes,  depression and cirrhosis..... that cirrhosis causes anemia and low platelets, denying treatment for those reasons seems ridiculous at best.  Treatment success rate for Veterans is only 19%.  The VA is still using 2003 treatment guidelines which do NOT allow for the use of Procrit or Neupogen.  Instead, they reduce doses or stop the treatment. 

19% success rate from 11.8% who are approved for treatment.  That means we're letting most of them die.   There is now a Bill from Congress that says that if a Veteran requests to have a Hep C test done at any of the VA clinics, they HAVE TO DO IT.  But they won't offer....the Veteran has to ask....and sometimes Vets are not notified when the test is positive.

Why did I tell you all this?

It seemed the right thing to do on Memorial Day.  Perhaps you can pass the word.

star

[DougV]

I was in the Navy, went to boot in Great Lakes in the mid 70's.  It is really amazing how many people I have ran into that went to boot during that time, injection gun era, and have hep.  Personally I can't say that was how I got it but I do believe that a bunch of people did indeed get it that way. 

Today I understand that gun is no longer in use and maybe in today's world IV drugs is the major vector, but back then certainly the risk of infections from other sources such as injection guns, transfusions, even routine injections using glass syringes, were also major factors.  In Egypt for example infection runs close to 50 percent due to immunization programs using reusable syringes and needles. 

Doug

[Rainbow]

Today we have more creative ways of transmission.....like manicures that cause bleeding.  The solution instruments are soaked in, doe NOT kill the Hepatitis C virus.

The Army has a higher rate of infection compared to other military branches.

star

[missy]

Very interesting - i was in the army '74 - '76, (did the "2 year plan" post high school) and remember the "jet-gun injection very clearly.  i was given a multitude of vaccinations at the time because i was being sent to germany.  hcvRN - thanks for the stats on this, i have mentioned it to many doctors, and it seems like all the focus is on either i.v. drug use or blood transfusions.  definately warrants an investigation.  i will mention it to my nurse on my visit next week. 
thx, w.c. missy

[OZ]

I think the military doesn't want to accept responsibility in the role of jetguns.
Just think about the potential number of service connected disabilities.  With the budget cuts at the VA, they would rather push it under the table.  Just my opinion.

When investigating HCV and potential sources of exposure, if you anwer "yes" to past IV drug use, many docs don't even bother going through the rest of the list.  I even had a PA in my GI office tell me that people without an identified exposure were probably lying about past drug use.  Nice thinking, but I never liked her anyway   

Manicures are probably one of the bigger dangers these days.  Particularly the solar nail places that are in a hurry and are using the same electrical sanding equipment on everyone. They frequently nick the skin and cause bleeding. So they soak it in a germicidal for a couple of minutes.  It's not going to kill much of anything, much less any viruses. 

Donna

[Rainbow]

Missy....those ae the years with higher numbers of people infected from jetguns.  The Veterans site created a database where you can inp;ut your genotype.  They're trying to see if people from the same units haver the same genotype.

[glory]

Great information.  I know that had to be how my husband got his.. My brother in law (husband's brother) also served in the
Air Force did 4 years late 70's and got out.  He is post transplant 3 years this November and doing great, the virus is still there
hopefully and prayerfully he will not run into problems. 

[robin]

Glory...gave you wrong labs for MELD...it's creatinine, bilirubin and INR (calculated from your protime). Most transplant centers use a 15 as the listing number because they way to do the transplant while you are still healthy enough to recover. There are other situations that will influence TP...like if there are two people with the same MELD and both are elgible for the donor liver...if your hubby has had a TIPS...that will bump him higher and he would get it. I had a site where you could put in your TP center and it automatically gave you the number of people who were ahead of you at that center. It can be astounding...the numbers. I've been listed in OKC for over 2 years and there are still over 100 people ahead of me. In Arkansas...I'm #14 in line...last time I checked. Will see if I can find that site and post it for you. Keep your spirits high...robin