Thursday, June 6, 2013

Hepatitis C-Have You Been Tested? (All Boomers should be....)

I rarely get on my soap box on any issue, medical or otherwise. This particular issue hits very close to home, and affects most boomers, as well as others, which is why I have shared the story below.

Long ago, in a land far away (Virginia in 1989) my husband and I lived in a townhouse complex.  This was the kind of place where one parking place was right in front, and the other space was catch as catch can. John worked late hours and often had to park away from the house.  One evening, after I was in bed, he came home and up the stairs-to wake me and tell me that I he thought he needed to go to the hospital.

He was obviously in pain, and when I asked what happened, he said that the left side of his chest was killing him and he could barely breathe. I of course jumped out of bed, barely dressing and rushed him to the hospital ( in retrospect, I should have called 911). My husband explained to me that he had lifted up the hood and slammed it down and the pain had become excruciating.  Every bump on the road to the clinic was pure pain.  

Hours later we had good news-we thought. My husband had not had a heart attack, he had had a spontaneous lung collapse. His lung was inflated and he was sent on his way. The bad news was that this would happen again  multiple times. It got to the point that he would call and say "meet me at the clinic".  Each time, his lung was re inflated and he was sent home.  Some times this would happen after a month, sometimes there would be a longer break.  These collapses were not caused by stress, exercise or other causes.   This condition is endemic to stall skinny type A folks with long lungs.  My husband's lungs did not fit on a single X ray.

While this condition was not life threatening,  it was certainly inconvenient and painful.  There was no accounting for location or timing, to say the least. The end result was that eventually my husband consulted a thoracic surgeon-who told him the choice was ours to make.  We could continue on the same path indefinitely, or John could have a type of thoracotomy-they would open his chest, repair and "rough up" the lung so it would not collapse and sew his chest back up.  Major surgery, but a great long term prognosis.  My husband chose the second option.  For the medically curious, this meant a front to back incision, spreader bars, removing the lung and putting it in liquid to look for pin holes,  roughing up the lung and returning it to his body, and sewing it all back up.  The surgery was successful (and he never had a collapsed lung again).  There were also minor complications that resulted in a longer time in the recovery room (my husband was a recovered addict who became completely whacked out on basic medicine, to the amusement of the entire recovery room staff), He also received two units of whole blood.  He went home, continued onward, and was grateful that meetings at work and dinners out were no longer marred by lung issues.  Life progressed and our son was born.

A few years later, my husband began experiencing what a physician would probably call low grade flu symptoms-fever, achyness, occasional nausea, difficulty sleeping. What was first written off as the flu or exhaustion became more serious- his primary doctor was both concerned and confused. Fortunately, she realized she was confused and out of her area of expertise and after many many months (when her diagnosis wavered from mono to Aids), she sent my husband to a specialist in infectious diseases to rule out some less than obvious as well as obvious possibilities.  After many many months, she gave us a diagnosis. Hepatitis C.  We had absolutely no idea what this was. I had been in the medical field at one time and had to worry about Hepatitis, but not this type. We had no idea how he would have contracted this disease. While we were both actively dating singles who married late, we were cautious. My husband was an alcoholic in recovery for a very long time who had never used any other drugs.  We never, ever considered that blood transfusion years ago-until the Dr informed us that they were sure that was the likely place of "contact".

We were fortunate in many ways. My husband was a healthy man (albeit a smoker) who worked out and recognized that he was not feeling normal. Someone else might have written it off as stress, or someone else may have had no symptoms.  Another doctor might not have referred us to a specialist so quickly.  We lived in Washington DC and as such had access to a variety of treatments, many experimental. My husband took part in a program for years where he took what we now know was interferon but then was simply drug b.  Because he was a tall skinny guy, he did things like have large milkshakes every night before bed to make sure he did not get skinnier (this is the guy who wore the 30-36 pants).  We continued on.

Eventually we moved to Germany. He was followed there by a doctor, and his liver levels were always high. While his immune system was not as it should have been, he kept busy, as I documented recently in another post.  In most ways, had we not had that first brief spell of not feeling well, we would never had known about the hepatitis.  In the summer 2006, after returning from a three week road trip, my husband was experiencing flu like symptoms again, including low grade fevers and diarrhea.  A visit to the doctor showed high liver levels, high enough to go to the hospital-where a large tumor was diagnosed.  Too big and involved to remove, to involved to do effective chemotherapy.  The end result was that my husband died on Veterans day of 2006, one day after he said we were no longer controlling his pain and that he needed to go to the hospital.

Why do I write about this?  Because our experience was not unique, and because the rate of undiagnosed Hepatitis C among baby boomers is extremely high. I'm writing because this is a blood test I believe everyone should have:
  • Almost three million people in the us have Hepatitis C and most were born between 1945 and 1965.
  • Three out of four of the people who have it do not know. That means they cannot be treated.
  • Early detection can prevent liver failure and cancer.  Not only has medicine advanced but the truth is that my husband lived a full life from the time he contracted the disease (1989) to his cancer onset (2006). I have to attribute that to his early treatment, at least in part. These days, Hep C can be removed from the body if there is a diagnosis.
  • Blood was not tested for Hepatitis C until 1992. If you are a boomer and had a transplant or other blood exposure prior to 1992 you could be at risk.
  • If you injected drugs, even once, you could have Hep C and not know (we are children of the sixties and that one experimentation could have long lasting results). Sorry if I offend anyone here but we were all young and stupid once.
  • Hepatitis is a silent disease but it is the leading cause of liver cancer. Most people who get Hep C do not have symptoms. My husband was unusual in that respect.
  • The only way to check for Hepatitis C is to have an antibody test, and then a follow up test. You need two blood tests, not just one.
If you are a boomer, I encourage you to get tested. If not a boomer, and you had blood prior to 1992 or were a drug user or worked in the medical field, you should get tested-now. Honestly, I don't know the cost of this test-but I surely know the pain for you (and your spouse), if you have this disease-undiagnosed. An ounce of prevention as they say.

8 comments:

  1. Thank you for this post. A friend died of Hep C in the late 1980's he was "accused" of many false things because people did not know how much it was in the blood supply. He had a transfusion in the Carrabian a few years before.
    Another friend was tested and went through the cure. It wasn't easy- but he no longer has signs of the disease.
    You are right- all of us should be tested.
    I am sorry for your loss....

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    1. It has taken a long time for people to become aware. There are some exceptions but almost everyone I know who has been exposed was through transfusion. The red cross was so far behind in this issue it's scary. I'm glad your friend was cured.

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  2. Great suggestion, Barb. It's been in the news recently, but I think people need to be reminded. It's interesting because I was just in for my regular examine and the dr. didn't recommend it. People need to be assertive and ask for it. I wish I had.

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  3. I think the medical community is in some instances behind on this one-or else they dont want to offend anyone, I am not sure...

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  4. Thanks for the info, I didn't have any idea!!

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  5. Thanks for the info Barb. I am passing it on to my sister who got a blood transfusion in the early 80's.

    God bless.

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  6. What a good reminder, Barb. We have to all be proactive in our own healthcare. I'm sorry for your loss but appreciate you telling your story.

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  7. I'm sorry that you went through that. Thank you for the warning. To tell the truth, Hepatitis C is not a disease that is exactly a frequent or popular topic for discussion.

    People barely talk about cancer and look how many people die from that every year in countries all across the world. We can never be too careful and most of those diseases that can be transmitted through the blood are fairly easy to test for.

    A few minutes could save a life.

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