So, About that Thing… Again

I got some great news last week—freedom from a long-standing heavy issue.

Remember when I wrote about that thing I have? If not, you can go here to see where I was at a few years ago, but I am going to tell you more about it here.

Way, way back in 1986, I received six blood transfusions, five of which weren’t out of any kind of actual need. Mind you, this could be very fuzzy recollecting, but I think it’s close to reality—the hospital where I was going for dialysis had some kind of protocol going on to see if giving pre-transplant patients blood transfusions along with Imuran would help their bodies accept transplanted organs better. Or something like that. How they measured results for this protocol I have no idea. Anyway, I received the sixth transfusion post transplant because when a needle was pulled I didn’t realize I wasn’t holding the gauze correctly and blood was pouring out of my arm onto the floor. Gross but true.

Thankfully, in those days they did know to test the blood supply for AIDS—which was the big new scary disease of the time. They also knew about Hepatitis A and B and tested for that. They were aware of another kind of hepatitis, which they dubbed non-AB Hepatitis, but didn’t really know much about it yet. There was no test for this virus, now known as Hepatitis C, until 1992. Our best guess is that I got this virus from a transfusion since I didn’t participate in other risk factors.

Unfortunately, Hepatitis C can live in your body for a long time without showing itself. It is not uncommon for people to have no idea they have it until it starts rearing its ugly head and the damage has begun—20 to 30 years after they’ve been exposed to it. This fact alone gives me a reason to be thankful for all those blood tests I have to do on a regular basis.

So seven years ago, when my labs began showing elevated liver numbers, my nephrologist became concerned enough by the labs and the fatigue that never seemed to go away to have me see another specialist to find out what was going on.

The day before my birthday I found out I had Hepatitis C. That doctor told me, as if he had a contractual obligation to be as discouraging as possible, all the things that could go wrong including cirrhosis, possible liver transplant, and liver cancer. Oh and by the way we won’t treat you because you’ll lose your transplanted kidneys. Then, after sending me reeling with all these wonderful possibilities, he then essentially said, “Maybe not.”

I’d just like to take a moment to point out that “maybe not” doesn’t really compete well with the possibility of organ failure and cancer.

With all that information swirling around in my head, I asked him what I should be looking out for if I took a turn for the worse. He answered that he wasn’t going to tell me because he didn’t want me running to him every time something went wrong.

He didn’t need to worry, I amazingly don’t even remember his name now.

It was a long 60 minute drive back home.

All I could hear in my head on the drive home was liver failure, transplant, cancer. Listen, I can live without my kidneys—not well mind you, but I’ve done it. It’s possible. I can’t live without my liver. But he made the decision for me. He didn’t give me any options. Dear God, I don’t want to be sick again. Please don’t let me get sick again.

The pile of information that one doctor contributed to anxious thinking took quite some time for me to get out from under. The worry that set in, the wondering, the what ifs were overwhelming at times. It also didn’t help that right after I found out the diagnosis, I had a conversation with a friend I hadn’t talked to in years. He had no idea I had the virus, but during that phone call, he told me his mom had died because of Hepatitis C.

The fear piled on.

My kids were only six and four. Please don’t take me from them. 

I went to a different doctor. He was much more encouraging, but I didn’t think he was knowledgable enough in this area. After whomping up courage and calling the Hep C hotline, I got the name of a doctor in my area who might be more helpful. That doctor then referred me to someone in the same practice who had more experience with transplant work with the added Hep C knowledge.

Since treatment options were limited because of the kidney transplant issue  and the fact that the genotype I had was rare, we waited until more drug trials were completed before deciding what to do. Finally after going to Doctor #4 for a year or so, a drug was approved that he thought would be good to try. We decided to go forward with treatment. It took some time, but I finally got approval from our insurance and I started taking the medicine beginning last June, for a period of 24 weeks.

Six months after finishing the meds, I’m happy to say my blood work still shows that the virus is undetected and I am considered cured. In addition to this fabulous news, all labs for liver function returned to normal right after I started taking the meds and still remain normal. There is no need to believe that damage occurred to my liver after the virus went active.

I am sooooooo relieved.

I can’t even describe the weight that has come off my shoulders knowing I don’t have to think about this anymore. I have no idea why God has been so gracious to lift this load off me and to answer prayers said on my behalf, but I’m so very grateful for it.

Hope deferred makes the heart sick, but a dream fulfilled is a tree of life. Proverbs 13:12

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