Author Topic: Diagnosed, with no ins and terrified PLEASE HELP!!!! (Read 20434 times)

jeffandjulie · « **on:** August 26, 2014, 10:01:42 am »

Hi....OK deep breath. So my husband has recently been diagnosed with hep c, and we are uninsured. I have been on the phone now for going on 2 months and frankly Im terrified that he's gonna die before I can even find out what the heck is happening. I'm gonna be honest, I have no clue what I'm doing, or what this jabberwocky is that's trying to eat my husband. Can someone please help me before I loose my mind? Is he gonna die? How long do we have before he gets too sick to work? And what the heck is this genotype thing I keep reading about and how do I know what his is? Oh! And what are the odds that I have it too?
PLEASE HELP!!!!!!

rainbowray · « **Reply #1 on:** August 26, 2014, 12:39:30 pm »

Hi Julie,
I'm Ray, I was diagnosed when I first got Hepc 43+ years ago. I took good care of myself most of the time. A good diet and some supplements does wonders. I lasted the 43 years without permanent damage, and the worst symptom was fatigue, and the nagging "golf ball" under the rib liver pains. If your husband has symptoms like these, a fibroscan which would have cost me $200 is worth getting to see where his liver condition is. They will want a viral load test which is expensive, but not essential really unless treatment is started and it is used to gauge progress. A high or low viral load does not really play into how much damage is done. A liver panel costs about $60 if you go to a lab, and it shows good info on liver process's that can indicate if damage may be occurring. This disease is something that a person
that has it needs to get the facts and self educate. If he just got the hepc recently you have lots of time, but if he has been infected a long time ago and just recently found out, you need to get the info so treatment options and decisions can be made. There are fantastic treatments out now, and better ones coming in future months.
I now have stage 3 fibrosis, which is not permanent damage. I decided to get treatment and started 8 weeks ago. The virus was at 3 million count, and is now at
0. The treatment is tolerable now. I have 16 weeks to go. I am on sovaldi/ribavirin
but I would rather have done sovaldi/olysio but it is working and I am grateful.
My wife of over 35 years does not have hepc, we tested twice. The chances are low of getting infected. don't use his nail clippers or razors which is common practice.
Hope I helped, others will give input.

rainbowray · « **Reply #2 on:** August 26, 2014, 12:51:25 pm »

Oh,
Sorry, I missed a few of your questions. The genotype is needed to determine treatment. Some are easier to treat. Genotype 1 is the hardest to rid, but is being cured at high rates now. There are resources on the web for financial assistance.
Gilead is the company that has Sovaldi and is helping with lots of costs. 855-769-7284 if you need details from them.

jberlin · « **Reply #3 on:** August 26, 2014, 01:37:15 pm »

Julie, as Ray said... breathe in, breathe out... The thing to find out is the shape of your husband's liver. Biopsy would be best. In most cases Hep C is a very slow progressing disease. Any idea how long he has had it?

Odds are you do not have Hep C. I contracted in 1976, my wife and I have been together 30 years, and she does not have Hep C.

Once you know the shape of his liver, urgency can be established. But, again treatment is over 90% effective now, and very much more tolerable than just a few years' ago.

Good luck,
jack

jeffandjulie · « **Reply #4 on:** August 26, 2014, 05:01:56 pm »

Thanks guys. Couple of questions. Does the live panel thingy you mentioned invole the liver enzymes number we got recently? I have the result of 2 of those tests, the first was much higher than the other. We found out on Memorial Day that he had it. I took him to the e.r. for a gall bladder attack. (Something else we didn't know he has because he's a truck driver and refuses to go to the dr unless he thinks he's dying. He woke me up at 3 a.m. thinking he was having a heart attack.) A few weeks later he was back in the e.r. with yet another g.b. attack and they said the enzyme levels were much lower. I immediately put him on liver support teas as soon as I learned that hep affects this the most often.
Im not sure when he got this monster. He's been an I.V. meth user for 20+ years, (now clean and sober for 9 months)How do I find out how long he's had it? Or how long we have to find treatment beofre it's "too late" not sure if it makes a difference at all, but he's 53 years old, and not really in the greatest shape. I'm working on changing his diet to something more healthy for the gall bladder thing, since we have no ins. they keep turning us away in the e.r. basically saying to come back when it ruptures.

jeffandjulie · « **Reply #5 on:** August 26, 2014, 05:03:16 pm »

Oh! and could soomeone pleas give me some links or something to get started researching? And if anyone knows some info on how to get treatment when you're uninsured and living in a camper in GA that would be most appreciated.

jberlin · « **Reply #6 on:** August 26, 2014, 05:27:22 pm »

Julie,

There is plenty you can read online, but the information you need will require real medical tests. You have to find out what shape the liver is in. If the enzymes were in a normal range, that's good, but not definitive. What about bilirubin? Georgia is a tough place to be as they have not excepted federal medicaid funds. You need to find a clinic that can get your husband a fibroscan as Ray mentioned. Some MDs still think biopsy is better, but this is non-invasive and much lower cost. Until you know liver health and genotype, it is harder to know the next best step. In the meantime google Hepatitis C clinical trials as an option. This is all I saw in the south, but you have the CDC and Emory there, plus Grady is a huge public hospital. http://www.clinicalconnection.com/PatientViewStudy15309.aspx I got treated at 49 & again at 57. Good luck!
jack

Bucky · « **Reply #7 on:** August 26, 2014, 05:37:16 pm »

J&J Here are the links to the companies that produce Sovaldi & Olysio:

link to Sovaldi https://www.sovaldi.com/coupons
link to Olysio https://www.janssen.com/us/patient-resources/patient-assistance
They have assistance programs for people without insurance.
I know this information is premature since you don't have a a Hep C doctor.
Bucky

rainbowray · « **Reply #8 on:** August 26, 2014, 06:55:57 pm »

Yes, change the diet. Lots of diet info here. http://www.sandracabot.com/
Also good books, but cheaper on Amazon.com
If he has been doing drugs, ask him the first time he injected, and that is when he got this. I did the same, 43 years ago so the important thing is to get well now.
Stay away from alcohol. It is the worse thing for the liver,
Stay away from fried foods, bad for the Gall Bladder.
On the liver blood tests, everyone looks at the ALT and AST enzymes, and other items. Just type the name of the test, example: ALT in Google and you can get info on just about anything. Takes a little time and effort, but you can do it, ok.

Mike · « **Reply #9 on:** August 26, 2014, 09:01:00 pm »

Hi J&J,

Hep-C is a slow progressing disease and over 80% with it, do just fine. Of the remaining 20%, some show mild to moderate signs of progression. Of these, 5% may develop cirrhosis (which is serious) and 1% of those may progress to liver failure.

When the gallbladder is not functioning well (due to gall stones, etc.) , toxins can back up in to the liver, causing elevating liver enzymes. It seems these were checked in the ER and have since decreased. Please note that a gallbladder attack and Hep-C infection are not related.

However, a smart ER physician ordered a Hep-C test, as your husband is in the age group of those most commonly infected with the virus (Hep-C can also cause elevated liver enzymes).

That test was positive for the Hep-C antibody. This means your husband was previously exposed to the virus; but may or may not have developed a chronic Hep-C infection. That is why the next step is to check the viral load. If the virus is present an active infection is diagnosed. The next step is to determine the genotype, as treatment is specifically tailored to the genotype.

Geneotype 1 is the most common in the US, and accounts for 70% of infections.

Now lets talk treatment. 10 years ago, the treatment was horrific and lasted 48-70 weeks with a 50/50 chance of a cure.

Fast forward 10 years, and the treatment has evolved to a cure rate of 90%+. Instead of the grueling 48 weeks of treatment, it has been reduced to 12 weeks for most (and is very tolerable)

Say this with me: Treatment is very effective, very tolerable and very short. Hep-C is not a death sentence. Hep-C is not a death sentence. Say it again.

You and your husband have found a great site to ask questions and get information.
Lastly, The United Way provides a referral service called First Call for Help. The number is 211 anywhere in the US. Call this number and an operator will answer, and ask what the issue is.

In your case it is that your husband doesn't have health insurance and needs to some lab work and to see a doctor. They will provide you with a list of providers and clinics in your area.

First Call for Help is completely confidential and will only ask for your zip code, which allows them to identify providers in your area.

Hang in there and take a deep breath. Hep-C is very curable now. This is truly the golden age for treatment.

Let us know if you have additional questions.

Best wishes, Mike

jeffandjulie · « **Reply #10 on:** August 31, 2014, 03:47:50 pm »

Oh wow guys thank you all so so very very much. He was just offered a great job, home everynight (which is HUGE for a trucker of 30+ years) That offer full health benifits. Hopefully this means we will be getting all the testing etc that he needs. And thanks to all of you, I feel like I can at least take a breath and perhaps not stay up all night watching him breath for fear he's not gonna wake up or something. (a little over dramatic perhaps, but I have been scared outta my mind!)
So the fibroscan....a viral load test, the alt enzymes (which I have the results of not just once but twice. The second was still way outta the range of normal, but much lower than the first from about 6 wks earlier) Anything else I need to put on my checklist? And also what kind of specialist is the one he needs? We were refered to a gastro interologist but they said they didn't know why we refered to him cause he "didn't do hep" as he put it. And said we should see an internist, who also told us they "didin't specialize in that area"....gotta love the run-around.
As far as the chronic, hep thing the second trip to the e.r. (We went to Grady the second time) they told us that it was "full blown" what-ever that's supposed to mean.

Bucky · « **Reply #11 on:** August 31, 2014, 05:11:21 pm »

Quote from: jeffandjulie on August 31, 2014, 03:47:50 pm

Oh wow guys thank you all so so very very much. He was just offered a great job, home everynight (which is HUGE for a trucker of 30+ years) That offer full health benifits. Hopefully this means we will be getting all the testing etc that he needs. And thanks to all of you, I feel like I can at least take a breath and perhaps not stay up all night watching him breath for fear he's not gonna wake up or something. (a little over dramatic perhaps, but I have been scared outta my mind!)
So the fibroscan....a viral load test, the alt enzymes (which I have the results of not just once but twice. The second was still way outta the range of normal, but much lower than the first from about 6 wks earlier) Anything else I need to put on my checklist? And also what kind of specialist is the one he needs? We were refered to a gastro interologist but they said they didn't know why we refered to him cause he "didn't do hep" as he put it. And said we should see an internist, who also told us they "didin't specialize in that area"....gotta love the run-around.
As far as the chronic, hep thing the second trip to the e.r. (We went to Grady the second time) they told us that it was "full blown" what-ever that's supposed to mean.

Jeffandjulie, I see an Infectious Disease Specialist for my Hep C and a Hepatologist for all things liver related. The two work together regarding my care but the majority of my visits have been with the IDS since my liver is not failing. If it all goes wrong later down the road, the Hepatologist will be the one handling the majority of my care.
I am sure that other members of our club must use other types of doctors for their care but this is the protocol that Wake Forest Baptist Hospital follows.
I am a little concerned that someone on staff at Grady would even use the term "Full Blown" as that is a reference to people fighting the HIV battle. I think that they should have said "chronic". Since your husband now has insurance you need to go to Emory if you can. I used to live in Atlanta and Grady is not on top of the list of hospitals that I would go to.
Bucky

rainbowray · « **Reply #12 on:** August 31, 2014, 07:36:41 pm »

hi J & J,
Hope I can give you some decent input now that you are getting insurance.
A hepatologist which is a liver specialist is able to treat hepc. I am seeing one now and getting treatment.
I received a fibosure blood draw to get my condition of the liver which turned out stage 3 fibosis. I did not have to get a biopsy. This then lead to me deciding to get treatment as I don't want stage 4, that is permanent damage. Getting rid of the virus will stop further damage, and at stage 3 the liver can heal itself after the virus is killed. Getting the liver damage accessed now is very important to determine treatment schedule and type. The genotype also determines the treatment type and the Hepatogist should order that too with a comprehensive blood panel, and metabolic panel. These will tell the Dr alot about what is currently going on. The doctors that stated he has full blown hepc without explaining what they mean must not be experienced. If if were me I would stay away from them.
I have learned to be picky about who treats me, with insurance you need to learn what YOU need and ask the Dr. for it.
I am currently on sovaldi/ribivirin on my 8th week, the virus is now undetected.
I need 16 more weeks of this treatment to make sure the virus cannot return.
My chance of total cure is 93% or better since the virus was undetected before the 4th week of treatment. The treatment is not a cakewalk, but I can go to work and do most normal things, I just get fatigued at times. Keep in mind I was diagnosed 43 years ago, and survived without permanent liver damage so stay away from panic behavior, but do go get all the tests to find out where your husbands condition really is. There is also the fibroscan test that is noninvasive that can show the liver condition very accurate.
There are very good treatment options now with good chances of cure, and better ones only months away.
Thanks, Ray

Bucky · « **Reply #13 on:** September 01, 2014, 01:03:19 pm »

I guess it depends on the hospital or clinic but hepatologist at my hospital don't handle the Hepc treatment/cure at all. I believe that the reason I received S&O instead of one of the older while still good treatments was the fact that she is an IDS and knew the latest information on treatments. She ordered all the diagnostic tests needed to assess my liver health.
Bucky

willie g · « **Reply #14 on:** September 01, 2014, 03:04:38 pm »

Hey Julie, ON THE GOOD Side maybe this is the wake up call to stay clean. Meth will tear you up quick as you know, I use to take meth but it was back in the day when it was just like glass,not this real poison stuff today.id stay up for days which I'm sure he has. But it's all poison anyway as you also know. It's great to here he has nine months clean. That in itself is a miracle. It's so hard when your truckin all over the country. I use to too, I use to have a hundred dollar a day habit. Heroin and that was in early 70 I am a Vietnam vet so the places I was at were the real deal. Ya I don't have to think to hard about where I got my hep c geno 1 from but now I am 6 weeks into treatment and I went the other day and it was not detected. I'm not out of the woods yet but at least I'm chopping away.i am so fortunate. He'll I thought I would have been dead years ago but here I am with three grand kids which gave me a real need to stick around. The folks gave you some great advice. Keep coming back . This is a great site and keep away from People places and things. You know what I'm saying. I will be praying to the CREATOR right after I post this. It's time Julie, you tell your hubby GATOR said its time. Time to start living. Wilie g

Pelham123 · « **Reply #15 on:** September 01, 2014, 10:24:26 pm »

Hi Julie, here's a link to hospitals that have fibroscans.

http://www.fibroscan502touch.com/find-a-facility

jeffandjulie · « **Reply #16 on:** September 02, 2014, 10:19:01 am »

Thanks Pelham, I will check these out and get him an apt as soon as his insurance kicks in. It's still gonna be another couple months but thanks to all of you I can see the light at the end of the tunnel.

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Author Topic: Diagnosed, with no ins and terrified PLEASE HELP!!!! (Read 20434 times)