Newcomer onboard to HW.cm

Hello, everyone. I recently signed on to this site. I have been reading the posts for the past couple of days. I am having some problems, thought I would post and possibly get some feedback. First, I know people on forum are not doctors, however, I give a lot of credibility to those that have been through the journey. Where to start? Probably at beginning. I was diagnosed for Hep C in 1998. For the most part my liver enzymes have remained normal. After one year of normal ALT and AST, my doctor ran a viral load. It was 10 units or copies. He repeated it the next year, it was 30 units. He stated it was unusual to be this low. Time passed.....I was concerned about my albumin at 4.2 and my platlets at 159,000. Fast forward to October of 2010. I have had problems with heartburn, stomach, etc. Was taking Rantidine. Developed bad pain, went to Emergency Room. They did bloodwork, x-ray and US. Er Dr. told me I had baby gallstones and my gallbladder needed to come out. He did not say a word about my liver enzymes. I recently went to Dr to see about having gallbladder out. He had my records from the ER visit and informed me that my liver enzymes were elevated He immediately did quick bloodwork and they are elevated but not as high as in October. The following are my bloodmarkers from October and Monday of this week.

October 14 May 9 (complete profile was not done)

Na 134 Total Protein 7.7
K 3.0 Albumin 3.8
Calcium 267.2 BILI TOTAL 1.4
Albumin 3.4 AST 62
Total Protein 7.6 ALT 115
CO2 33 ALP 98
MCH 32.4 GGT 97
PLT 133
BILI TOTAL 1.76
AST 71
ALT 257

The only thing that I can think of to cause my enzymes to elevate were being exposed to continious heavy paint fumes for two months prior to October. I didn't drink, no drugs other than ones prescribed(Nexium, Atenelol, HCTZ, Timilol and Prednisolone Eye drops). Recently, I started having one shot of vodka in the evening. I have done that for a total of four months, period. No alcohol previously. Needless to say that came to a screeching halt. I know that you can have a low viral load but have Cirrhosis, or a high viral load with no Cirrhosis. The ultra sound results stated I had normal echotexture to liver. My concern is the low platlets, low albumin. Can anyone speculate on the path I may be on. I had bloodwork done today, Hep C and viral load status. I realize I will not find out until seeing the Gastro dr. Don't know if I should have gallbladder out at this point. Seems to cause more problems. Can you please give feedback. Thanks. And by the way, this forum has a lot of great support.

Hello Mitzi and welcome to HealingWell. Sorry you had the need to find us though.

Before you have your gallbladder removed get the GI to refer you to a Hepatologist. They are a lot more knowledgeable about liver disease.

I am not an expert on the numbers in your blood tests but we have others who are pretty sharp about them. I'm sure that one will pop on soon.

We are glad you found us.........thoughts and prayers.........

Hi, Mitzi, and welcome to the forum. Did you ever have treatment for your hep C? I can almost guarantee you that your elevated liver enymes are from drinking vodka...and also from hep C if you still have it. Do NOT drink anything alcoholic!

I also would advise no gall bladder removal unless you absolutely need it.

Someone else may have more knowledge on your other labs.

Hugs,

Connie

Thanks MamaLama. I appreciate your response. Maybe I wasn't clear with my post. In October when my enzymes elevated, I had nothing to drink at all for probably fifteen years. I have never had a problem with alcohol. Not knowing that they had elevated, in January, I started having a drink before dinner. I assure you, that is the end of a toddy before dinner. I have been unemployed since December of 2010. How long do you have to be unemployed to receive Medicaid? I have no funds for anything, much less doctors. My dilemma is deciding if I need to find out the situation with my liver before having my gallbladder out. The posts I have read indicate that problems arise with your liver having your gallbladder out. Last year my doctor stated I did not need treatment yet because my liver enzymes were not elevated. What can I do to elevate my platelets. I am concerned about the low count. Thanks for your attention. It is appreciated. I am feeling kind of lost out here.

Mitzi,

I would not overly worry about your platelets. My. lab says normal is 150,000 to 450,000. My platelets range from 35,000 to a high of 90, 000 and can fluctuate widely between bimonthly lab tests. My average is 45,000 to 70,000. I am told it is due to my spleen chomping my platelets, and my spleen is enlarged as a result. (called splenomegaly).

Susie
Meld 16
ESLD

Hi Mitzi,
You have to wait 24 months AFTER you qualify at the social security office for Medicade/Medicare - forget the social services office, and go straight to Social Security to apply. You tell them what you are there for, and they will help make sure that you get treatments one way or another. If you have been diagnosed with Hep C then the damage is starting in your liver - it won't stop, and it won't go away on it's own. It will be terminal if you choose to wait long enough, and you can spread it around also if left untreated. Find the Hep C foundation nearest you - they will help you also. Google it. Good Luck!
Jim

Mitzi,
Your eating doesn't have to be dull. I found that the use of herbs, spices and juices (citrus) added to a normal diner or lunch is every bit as tasty as not having salt and sugar added. I used to eat any and everything, as long as it tasted good. Now that I think about my food intake and eat correctly, I feel better and I am better.

Some information posted was not quite correct.

Research Florida Medicaid on the web. It is state funded, not federal.

Social Security and SS Disability and Medicare are Federal and have their own rules. Look them up separately. To get SS Disabilty you need to be unable to work according to their disability rules (very strict), not unemployed.

Medicaid has rules about how much savings, how much you earn, etc. It doesn't go by how sick you are, it goes by your situation. I think you are allowed to have a house and car so long as they fall within their guidelines. Look this up! Apply right away if you think you might qualify. The benefits send you to clinic settings which have more waits, but we have found the care very good.

Our Fl Governor is trying to get all Medicaid participants into HMO's. But until he does, try to get straight Medicaid--no referrals required. The referrals are a pain and the HMO's send you in a circle...denying everything first and then putting your doctor's office in another loop, then they finally agree to do what your doc wanted in the first place. I think they hope a certain number of folks will get bored and not pursue their meds or appointment. NEVER back down. Make them do the right things.

Post any time. Folks will chime in.

Carol aka Mama Lama

Post Edited (MamaLama) : 5/15/2011 1:36:57 AM (GMT-6)

Sandi - I have to disagree with Carol - you can, and do qualify for SSI - which is Federal, and handled by the Social Security office. It covers Medicaid, and Medicare on a FEDERAL level, at no cost to you. Hep C is terminal if left untreated. While being treated you most likely will not be able to work a full time job, and they will help you there as well. They will also help re-train you if needed to help you re-enter the workforce.
Forget the state - they will let you die, and be glad they didn't spend a dollar on you. FL. is a Commonwealth state, you might want to "Google" that up. They only will help you if they get the money back from the federal government. Because of the state budget cuts to balance the state budget - they won't help you. They just won't tell you that, but if you want to spend a couple years trying before you believe it - then go ahead. FL. medicaid was a federally backed state program that has been cut WAY back in order to force the state to balance their own budgets. Forget FL. state medicaid.

Not unless you are listing him as a dependant child.
I think your at a good site for Hep C Mitzi. what is it that you are looking for?

Mitzi, here's a great site.  I found it not long after being diagnosed and it's still going strong:

http://www.hepatitis-central.com/

Medicaid is both state and federally funded.  Is there a Social Security office in Naples?  If not, maybe that's why they referred you to DCF.  If there IS a SS office, go there.  However, I was never able to get it until I got Medicare.  Then they added on Medicaid Medically Needy, which has a high deductible...not that I have to put out the money, but that there have to be huge bills in a month and then they will kick in a little in addition to what Medicare pays.  Medicare pays 60% of charges.  I am on straight Medicare at Mayo as they don't accept HMOs...which all supplements are, unless you have a PPO.  I know--it's all very confusing.  It's learn-as-you-go.

When I was in Shands Jax for 7 weeks after the first hip replacement on me was botched...they tried like crazy to get me on Medicaid.  But the criteria at that time (2003) was that you had to have a minor child, be blind, have HIV/AIDS (you're right about that one) and/or some other things that I didn't qualify for.  But it doesn't hurt to try.

There is a new treatment that has just been approved that adds a protease inhibitor to the current combo of interferon and and ribavirin.  It is having great success in clearing the virus from those with genotypes 1a and 1b.  Do you know what you have?  It is taken for half the time as the combo, in most cases.  So if you get some medical coverage, try it!

As I mentioned, I was diagnosed in '93.  I tried interferon (the only thing available at that time), which consisted of self-injecting 3 x a week.  I did 2 rounds of this, but in both instances was taken off by the GI doc after only 6 weeks.  My white count plummeted really low.  Nowadays, they give medicine for that.  Anyway, I felt okay except for some fatigue, so I pretty much ignored the C.  I had blood taken every 3 mos. and my enzymes were only slightly elevated.  I had sonograms every 6 mos.  Everything was always okay--until it wasn't. 

In '05, a sonogram revealed that I had hepatocellular carcinoma (HCC) that had metastasized into the inferior vena cava...so I wasn't a transplant candidate.  They said there was nothing they could do.  Not accepting that, I made an appt. at Mayo.  Coincidentally, I had just gotten SS Disabilty and Medicare based on hip problems.  It took me 2 yrs. to get it.  I signed up for a supplement, but 2 days later dropped it before it was even activated, when I found that Mayo wouldn't accept it...but they do accept straight Medicare (and their charity program carried me for 3 years and has since then written off balances.)  Mayo killed the cancer along with my rt. lobe, so that was removed.  Now I have a new HCC in a remnant of the rt. lobe (which must have regenerated some), and am being evaluated for transplant starting tomorrow.

This is why I was asking if you'd had treatment.  Because Hep C is such a silent but deadly virus.  I went along for years never dreaming that HCC could happen to me, although I steadily became more fatigued (which became much worse after 8 major surgeries in 7 years.)

You might try going to a large hospital in Naples (if there are any) or call and ask if they have a charity division.  If so, ask for the forms you need to fill out.  It's best to do this after you've had a couple of visits, so you will have outstanding debt.  Maybe in this way you can get treatment.

Best of luck and big hugs,

Connie

Mitzi, DCF is state, but they do get some federal funds.  When you apply for Medicaid, ask them about when you can be seen by a doctor.  I've never heard of that long of a wait time.  Since the state is about broke, it will be even harder than before to get Medicaid.

Check this link out to see if you even qualify for Medicaid:

http://www.dcf.state.fl.us/programs/access/medicaid.shtml

Since the cancer has returned and Mayo feels this will keep happening, they are now evaluating me for transplant, starting tomorrow.

Hugs,

Connie

Sandi, it's more like several weeks...as they have me scheduled for back-to-back tests and meetings 4 days a week, all the way through June 9th.

 

A transplant costs hundreds of thousands.  The post transplant meds are really expensive, too.  I'm hoping that Medicare and my Part D prescription drug plan will cover most of the expenses.

 

The most important thing you can do for your liver is to not drink--nothing alcoholic--at all.  The second thing is NO BEEF.  This is the most difficult protein to digest (even for a healthy person.)  In a liver patient, the liver has to go into overdrive to break it down.  Look to plant sources (such as beans, eggs, soy products) for protein.  Also follow a low-salt diet.  Use lemon juice instead of salt on chicken, etc.

 

Hugs,

Connie