Wednesday, January 30, 2013

Looking Back / Looking Forward..

Looking Back:

My husband Don contracted Hepatitis C over 30 years ago when he and all of his army buddies got thier first leave after boot camp.  Each member chose proudly to get the US Army logo tattooed onto their shoulders, and each member contracted Hepatits C that day.

Little was known back then about blood born diseases and the importance of transmitting blood to blood diseases.  Honestly, most doctors were just discovering that there were several different types of Hepatitis.

This is a slow progressing disease, but what makes it so very dangerous is that it does not show up in a normal blood test until it has attacked the liver to such a degree, that it's function is impaired.

This is what happened to Don.  Combine that with the fact that as most men are, Don avoided going to the doctor at almost all costs, delaying valuable time that could have been used to destroy this virus.  Don had not had a physical in almost 20 years!  His liver function was only one of the issues that had to be addressed.  He had an infection, high blood pressure and a heart arethemia. 

He had to go in for additional blood tests and then a biopsy was done of his liver.  He was already suffering from cirrhosis and had the worst genotype.  The news was hard to swallow.. but Don is a fighter. 

Right after the holidays he started a 1 year term of 2 meds, a cancer drug injection called Interferon and a pill called Riboviren.  Don continued to work full time even though he was terribly ill at times.  The Hepatitis virus did not clear his system until he had been taking the meds for over 4 months. 

4 months after the treatment was complete, we found out he had relapsed.

We signed up for every trial drug and were turned down.  Each time we were told it was because of the cirrhosis that he was turned away.  It was not for another year that the FDA approved a new drug to be added to the Interferon/Ribiviron cocktail. This new drug was called Incevic and was to be taken the first 3 months of the next years treatment.  It had horrid side effects, but 2 weeks after the drug was approved, Don was starting the treatment with hope in his heart.

It was a nightmare.  The side effects left him unable to work.  He had terrible blood counts that caused nose bleeds and bruising, fatigue and flu like symptoms on a daily basis.  At one point, he had bulging blood vessels in his throat that had to be dealt with .. so he had surgery every 2 weeks.  Trust me when I tell you this is the very short version of what he went through...

On the upside though - only a few weeks after starting the treatment, his blood tests were showing a zero Hepatitis C count.  We felt sure this treatment was a total success.

 Looking Forward:

Don seems to have built up a resistence to the drug, which is why he relapsed.  Although Don was very ill with side effects from the meds during this last year, it did give his liver a rest and believe it or not - his liver is actually functioning better now than it was a year ago.  The Hepatologist said that he could remain just as he is now for 5 years and it that time another type of drug could be approved and he would be placed on it immediately.  We also signed up again for any drug trials coming down the line. 

Mean while, we will continue on ... go to the doctor ever 6-8 weeks, getting cat scans done every 6 months and pray.....Pray.....PRAY!!!

I know this is not about sidesaddle riding ... but thought I would post it since I have had several questions about it.

37 comments:

RiderWriter said...

Thank you very much for the explanation. I haven't known anyone with any kind of Hepatitis. In fact, my only experience with the disease was when I had to go get a shot with hundreds of other people, when a restaurant where we'd all eaten was discovered to be contaminated with Hep A (I never became ill). You have truly been through a nightmare with Don. I hope he is still feeling "okay" and you can keep on truckin' until they come up with another treatment. We will all be thinking of you guys!

sidesaddle rider said...

Strange I was just thinking of you and Don so I stopped in and here is your note about Don. My thoughts are with both you and Don.

sidesaddle rider said...
This comment has been removed by the author.
Justaplainsam said...

Thank you for explaining what Don is going though. It must be so difficult for both of you and your family.

My thoughts are with you.

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