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Posted 10/10/2012 5:18 PM (GMT 0)
Hi, my name is Al or that is what everyone calls me, this is my first post so please forgive any spelling errors. I am 58, 100%
Disabled Vet had two brain aneurysms, then brain operation, which has left me a few fries shy of a happy meal, but I'm alive
and dealing with it all best I can, in fact thats where I believe I got the Hep C virus from blood during brain operation. I live
alone, have no family alive, no I am not looking for pity. I am on Veterans benefits, have a VA Doctor, I just had a sonagram
and it came back normal, I was scarred to death until I got the results back. No enlarged liver and no scaring.
I have appoint with VA Doctor Oct 4, 2012 . I can barely walk or talk, don't drive so. Oh yea, I don't drink or smoke. The only thing I know is I am Genotype 1a.
OK saw Doctor on Oct 4, he said my ALT scores in blood tests had come down far enough that I did not need the treatment right now, and he would test my blood every 6 months,
These are the Blood tests he took on Jun 12, 2012: I don't know anything about this stuff:
 ALANINE AMINOTRANSFERASE 71 High IU/L 10-40 Details
 ALBUMIN 4.3  GM/DL 3.2-4.4 Details
 ALKALINE PHOSPHATASE 68  IU/L 38-126 Details
 ASPARTATE AMINOTRANSFERASE 62 High IU/L 15-40 Details
 BILIRUBIN 1.0  MG/DL 0.2-1.3 Details
 CALCIUM 9.6  MG/DL 8.6-10.0 Details
 CARBON DIOXIDE 30  MEQ/L 25-31 Details
 CHLORIDE 102  MEQ/L 98-108 Details
 CHOLESTEROL 122  MG/DL 0-200 Details
 CHOLESTEROL.IN HDL 46.5  mg/dl 35-70 Details
 CHOLESTEROL.IN LDL 64.3  mg/dl 0-130 Details
 CREATININE 0.9  MG/DL 0.6-1.3 Details
 GLOMERULAR FILTRATION RATE.PREDICTED 87  SEE EVAL >60 Details
 GLUCOSE 95  MG/DL 70-110 Details
 POTASSIUM 5.0  MEQ/L 3.6-5.1 Details
 PROTEIN 7.4  GM/DL 6.4-8.3 Details
 SODIUM 142  MEQ/L 136-144 Details
 TRIGLYCERIDE 50  mg/dl 0-200 Details
 UREA NITROGEN 13  MG/DL 8-24

These are the new tests taken on 10 Sept 2012:
 ALANINE AMINOTRANSFERASE 54 High IU/L 10-40 Details
 ALBUMIN 4.1  GM/DL 3.2-4.4 Details
 ALKALINE PHOSPHATASE 68  IU/L 38-126 Details
 ASPARTATE AMINOTRANSFERASE 50 High IU/L 15-40 Details
 BILIRUBIN 0.7  MG/DL 0.2-1.3 Details
 CALCIUM 9.2  MG/DL 8.6-10.0 Details
 CARBON DIOXIDE 32 High MEQ/L 25-31 Details
 CHLORIDE 102  MEQ/L 98-108 Details
 CREATINE KINASE 79  U/L 49-397 Details
 CREATININE 1.0  MG/DL 0.6-1.3 Details
 GAMMA GLUTAMYL TRANSFERASE 43  IU/L 7-50 Details
 GLOMERULAR FILTRATION RATE.PREDICTED 77  SEE EVAL >60 Details
 GLUCOSE 96  MG/DL 70-110 Details
 POTASSIUM 4.7  MEQ/L 3.6-5.1 Details
 PROTEIN 7.3  GM/DL 6.4-8.3 Details
 SODIUM 142  MEQ/L 136-144 Details
 UREA NITROGEN 10  MG/DL 8-24 Details

I don't want to nor do I  think I could go through the 3 drug cocktail, I barely get by as it is so all that other stuff, there is just no way I could get by, by myself, so I belive I'm going to have to deal with this without the treatment they have now.

Anyone else trying to get by without the treatment they have now. What should I take instead of aleve, I can't take aspirin as
it thins the blood and I have two metal clips in brain so no aspirin.

What should I eat or not eat, well everything anyone wants to say as I know nothing about any of this, except no iron.
Thanks to all who respond, as I said I know nothing about this mess but I am scared to death about it, Gee, make it through brain operation, please help me make it through this.

Posted 10/10/2012 5:53 PM (GMT 0)

Hi Al and welcome to HealingWell!

I'm glad to see your blood work looks really good :-)    I don't have personal experience with HepC but many on here will be by to help you out.  You can take Tylenol but it's best not to exceed 1000mg a day.  The effects of pain on the body can be worse than taking something for it.  You should discuss pain relief with your doctor though.  Individual doctors have their own preferences.  I was initially told I could take Advil (ibuprofen) over Tylenol.  One of my other meds is contraindicated with ibuprofen so when I need to now, I'll take a little acetaminophen (Tylenol).

It's best to keep a low sodium/salt diet and stay away from red meat.  Other protein sources are fine; fish, chicken, beans, etc...

There are some info resource folders at the top of the topics list to check out.

Posted 10/10/2012 7:08 PM (GMT 0)
Hi, Lobo/Al, and welcome to the forum! Your labs look good. Are you seeing a hepatologist, or at the least a GI doc? Primary care docs don't know much about liver disease, especially hep C.

Hep C is a progressive disease. It is not going to go away on its own. I was diagnosed per biopsy in '93. I tried interferon injections 3 x a week, as that was the only treatment available at that time. My white count went so low that the GI doc took me off treatment. I knew there were trials going on of the "combo," but I thought since interferon was in it there was no point in trying it.

I did well, except for fatigue, for a number of years, although I had to switch to PT hours. Then in '05, on a routine annual ultrasound, a huge liver cancer (HCC) that took up the entire rt. lobe and metastasized into the inferior vena cava (blood vessel) was discovered. The hospital I was going to said there was nothing they could do. I started getting my affairs in order. However, I also sought a second opinion at Mayo. They literally saved my life, by shrinking the tumor and then removing the entire rt. lobe. I did well for 4 years, at which time a tumor of the left lobe was found last year. I was told that I needed a transplant, which I had on Oct. 27th of last year...almost a year ago.

Hep C genotype 1a is the most common and the most difficult to clear. It is also the genotype doing best with the 3-drug treatment. I happen to disagree with your doctor about not getting treatment now. I think it's better to do treatment before you have cirrhosis/scarring, liver cancer, or any of the manifestations of liver disease. I am currently waiting on the okay to start treatment. I had a number of issues following transplant, so they want me to be as healthy as possible before starting the 3-drug treatment.

The most important labs for you to follow are creatinine, INR, bilirubin/bili, BUN, AST, ALT, Alk phos, You also should keep an eye on your sodium and glucose levels. You should ask for a viral load to be drawn, as well as an alpha fetoprotein (cancer marker) level at some point.

Dany has given you good dietary advice.

Hugs,
Connie
Posted 10/10/2012 9:15 PM (GMT 0)
Good Afternoon Al,

I am the partner of a Hep C patient, who, like Connie has had a liver transplant following Hep C and HCC.

Unlike Connie, Mike was a drinking man until he got really ill, where Connie has been sober half her adult life! Mike's liver totally decompensated and bar transplant, he would have died, cancer or no cancer.

He was infected in the late 60's using IV drugs...though, as you know, there are many ways to become infected. Others here got their Hep C from transfusion also.

What is key is that Hep C is a long term disease. Mike had several active bouts with what they called Non A Non B hepatitis in the 80s but still didn't know he had Hep C genotype 1a.

After transplant he stilll has the Hep C, of course, and is looking at a treatment down the line. He has had some set backs the past few months and hasn't started a combo treatment yet. Those who have been transplanted live longer afterwoods if they are virus free before transplant.

Mike was too sick when he got sick enough to seek treatment that he didn't have that chance.

The docs keep their eye on the goal...clearing the virus. they think that the treatments are WORTH it if you clear. But it is a lot to think about as the side effects can be tough on some people. Mike, again like Connie, had trouble keeping his blood counts and platelets high enough. He kept at if for 6 months, but never cleared.

I think it is excellent that you are seriously monitoring your conditon before it is too late to stay as well as possible for as long as possible. The thing Mike SHOULD have done is quite drinking alcohol and he might not have gotten so ill.

His post transplant time is not 100% back to normal. He is disabled in his own way...with limited energy and feels weak most of the time. When he is awake and rested we do things, visit, go to the beach, shopping, cooking, etc. BUT, he needs to space his energy out.

Good luck to you. I hope your numbers stay good for a long long time.

Carol
Posted 10/10/2012 9:40 PM (GMT 0)
My story is somewhat similar to yours. I contracted Hep C in a hospital when I was 14 (1964), found out by chance in 2000. Went through 12 months of interferon/ribavirin in 2004. Three months later had a cerebral hemorrhage, not too bad, a week in the hospital, then rehab another week. Then had a seizure and another bleed 18 days later. The second bleed was bad, almost bled out, then a month in the hospital and 6 weeks in rehab. Received a liver transplant in July 2009, then the Hep C came back strong a year later. Did 15 months of interferon/ribavirin and have now been undetectable for a year.

It sounds as if your Hep C isn't causing much trouble and if you follow the instructions that Dany, Connie and Carol have given you, undergoing the 3 part therapy may never be needed. I do agree that you need to see a hepatologist and have blood work every few months to make sure that things are all right.
Posted 10/10/2012 10:40 PM (GMT 0)
Thanks to all who responded, I quess I'll wait till next blood tests, If they are bad maybe I'll have no choice but the 3 drug cocktail, man that's going to be something else, I'm hoping they come out with new drugs without the side effects.
Posted 10/11/2012 12:47 AM (GMT 0)
Ok, Al.

This is the deal.

Hep C is no less dangerous to your LIFE than cancer!

So the "chemo" equivalent is the Treatment. It sucks, it has side effects, sometimes doesn't work, and sometimes you get well forever.

Would you take a cancer CHEMO for colorectal cancer? Prostate cancer? Lymphoma? Of course you would.

Choice is choice. You'll have the chance to make yours.

Good luck,

Carol
Posted 10/11/2012 1:52 AM (GMT 0)
First, you need to see a hepatologist and find out how bad your liver is. You may need to have a biopsy to be sure. When I first found out I had Hep C and was told there was a treatment to try and eliminate the virus, I jumped at the chance to try it. To be honest, I didn't know how tough it might be, but the thought of having a disease that could be knocked down appealed to me. My belief was that I'd do the treatment no matter what, short of death. I was high stage 1 at the time and had to convince my hepatologist to do the therapy. He wanted to be sure I wouldn't back out, when I began feeling lousy. After a few more visits, he consented to my doing the treatment. If you're not 100% into doing it (if in fact you need to) then don't even try. You have to commit to it wholeheartedly, or you won't get through it. Some people can't get through the treatment for physical reasons. I had to give myself shots to increase my red blood cells a couple of times, towards the end. If you do need to do the treatment, prepare yourself to feel like you have a good case of the flu for however long the treatment lasts. My first time was 48 weeks and I was undetectable for over 6 months, until I had my hemorrhage. The second time it took 15 months and as I said, it's now been undetectable for 12 months.
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