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siloamsandy
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 3/7/2010 9:12 AM (GMT -7)   
Back in 1993, I decided to see a doctor about my nonsweating situation. For a few years I was unable to perspire. So, while I had insurance, I decided to get it checked out. They drew blood. Called me in again to draw more blood, because of something showing up. They called me one night at home (about 10p) and told me the news that I had Hep C and that they knew nothing about it. I asked my aunt if she could receive a fax from the CDC about it and what they knew was like a half of a paragraph on the subject.
 
Slept most of the time over the weekend; no energy; no appetitie; fever; and just an overall feeling of....depression. Here I was, just finding out I had a disease that no one knew anything about.
 
Then in 1995 I moved back to OK from CA. In between those times, I had my blood drawn every time I was supposed to.
And in 1997 went on the pegavirin combo shot. Man, I cannot stand to give myself shots. Toward the end of the treatment, my sister was having to give me the shots. I'm a wimp....lol.
 
After my parents passed away in 1998 & 1999, I went back to work (I was taking care of them) and then went to truck driving school in 2003. Drove truck with one of my sisters. We came in one day off the truck and I decided I needed to have blood work drawn again.
That's when I found out I have fibromyalgia & IBS. When the results of the lab came in, the dr sent me to a specialist to see what he had to say about my numbers. He said I had a year left. Goes to show they don't know everything. I'm still here.
 
Then, in 2005, found out I have COPD, Gout, Edema, and a whold slew of things.
 
Now, my teeth are having to be pulled one by one, no matter how well I take care of them. I think my phone is set up on speed dial for the dentist...lol.
 
So, we'll see how things go. My MELD score is 18. Found that out last hospital stay. It's been 18 for a year now.
 
Hope everyone has a wonderful day. I will. God has blessed me with so much.
Sandy

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/7/2010 9:25 AM (GMT -7)   
Are you in a transplant program and if so, why not. My MELD score was 18 one week and the next 24. I received a liver two days later. Don't wait until it's too late. As for the sweating, or nonsweating as the case may be. I've had Hep C since I was 14-15. I wondered why everyone made a big deal about deodorants. I never had a problem. The only time I sweated was playing sports, being in the hot sun for a while, or hard physical labor. Now, 7 months post transplant, there's a little more perspiration. Good luck. **David**

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/7/2010 1:28 PM (GMT -7)   

Sandy, my question is the same as David's.  Are you being seen at a transplant center?  With a MELD of 18, you really should be and probably also on a transplant list.  You have a wonderful sense of humor, but don't be flippant about your disease or disregard the seriousness of it.  It seems that the combo did not work for you or that the hep C returned.  Is this the case?  BTW, I was also diagnosed with hep C in '93.  They had just developed a test for it in '92 and the only treatment available at the time was interferon (no ribavirin.)

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


siloamsandy
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 3/7/2010 4:03 PM (GMT -7)   
Yes, I am on transplant list. Have been since last year. They ran all tests needed in May still having my blood drawn every 3 months for them. I don't mean to sound filippant, but I have always taken life at what it deals me. I get understand the seriousness of my illness and am thankful that I have found this forum to talk about it. My daughter takes care of me but there are some things she can't handle at the moment. She deals with this in her own way. It has hit her husband harder than it did any of us. He is such a wonderful man. I am blessed that he doesn't mind me living with them. And I am blessed that my daughter wants me to. And, of course, there are the three granddaughters. They help keep the mind young and going...lol.

I tood the combo shot in 1997/98. It was fairly new from what my dr said. And, it didn't work. As soon as shots were done, hep c was still there.
I have cirrhosis of liver (biopsy for that in 1998).
What has me baffled is the fact that my ammonia level can get so high, and my MELD is still at 18. I guess the ammonia has nothing to do with that.

This is for David:
When you had your liver transplant, did you have to take insulin shots?
Sandy

Evidently, the nonsweating has nothing to do with the hep c. Just curious. I still don't perspire. But my skin is so dry. I do know that has to do with hep c, meds being taken and few other things wrong with me.

I am not as bad off as my older sister. She may be losing a leg due to her diabetes. She has heart problems, edema, nueropathy, and some other things. So, I'm pretty much blessed. Or that's the way I see it anyway.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/7/2010 4:15 PM (GMT -7)   

I feel better knowing you are under the care of a transplant center.

You might be interested to know that there is a new treatment becoming widely available the beginning of 2011 that adds a 3rd drug, Telaprevir, to the combo.  It only has to be taken for 24 wks.

What genotype are you?

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/7/2010 4:52 PM (GMT -7)   
A couple of months after the transplant, I became diabetic. Pretty mild case. I use a pen injector, 13 units of levemir before bed. It's likely from prograf. They told me up front it might happen. I wouldn't have known I was diabetic, had they not told me. There weren't any signs, other than a little more thirsty than usual. **David**

siloamsandy
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 3/8/2010 9:00 AM (GMT -7)   
My genotype is 2. And, according to my internist, the combo shot that I took should have done the trick. But it didn't.

Will the new treatment help people that have cirrhosis of the liver? Will it cure the cirrhosis or hep c? I have not heard of it before. I figured once it got this far, it may be too late for any treatments to work. As a matter of fact, my doctor told me treatment is not an option for me now.

I hate to think about having to give myself shots because a drug gave diabetes. A junkie I would not make.
Maybe my sister is correct in saying that it could possibly just bring my sugar levels up to normal as I am hypoglycemic.

Just a thought.
Sandy

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/8/2010 11:14 AM (GMT -7)   
Needles for the pen are 1/4 inch long and the width of a hair. You can't feel the stick. Some people take pills for diabetes. As far as not wanting to take the shots, the alternative is worse. It's like taking the anti rejection meds. The possible side effects for prograf are predisposition to a couple types of cancer, high blood pressure and the aforementioned diabetes. All meds have side effects, live with them, or die without them. **David**

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/8/2010 12:03 PM (GMT -7)   

Sandy, the new treatment that is coming out is most effective on genotype 1, which has been the hardest to treat.  There is no cure for cirrhosis.  It is scarring of the liver.  However, you can halt it or slow it down by eliminating stress to the best of your ability, and eating a proper diet high in fresh foods and low in sodium.  Eliminate beef.  And take the meds that are prescribed for you.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


siloamsandy
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 3/8/2010 3:04 PM (GMT -7)   
I guess if I have to take the shots for diabetes, I'll just have to take them...
The transplant coordinator said that I would probably only have to take them for 3 months. As long as I stick to the diet.
I have cut out sodium. Stay away from beef. Eat a lot of chicken, pork, veggies. Salads are pretty good too for a meal.
I am taking lactulose and xifaxan now. But, I can't seem to get any results with my Medicare Part D ins to pay for the xifaxan and my dr's nurse acts like I'm committing a crime when I call her and tell her I need more samples. I understand that there are other people that probably need it too, but it's not my fault that I can't get the companies to work with me.

Oh well, I guess I just get frustrated thinking of it.
Thanks for all input and letting me vent.
Sandy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/8/2010 4:23 PM (GMT -7)   

Sandy, your insurance probably requires pre-approval for the Xifaxan.  Just have your doctor write a letter to the insurance company stating that it is a medically necessary drug for your condition. 

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/8/2010 6:49 PM (GMT -7)   
Hello siloamsandy, another option is to go online,call or write the manufacturer it. Tell them that your insurance will not cover it and you can not afford it. Some manufacturers will work with you as a hardship case. It's worth a try. Good luck........thoughts and prayers........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


siloamsandy
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 3/8/2010 7:07 PM (GMT -7)   
Tried both...dr sending reports to ins co., and contacting manufacturer. Since I have Part D Medicare, manufacturer says no.
Sandy
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