Author Topic: my Hep C story (Read 28592 times)

Elijah · « **on:** August 20, 2013, 01:04:48 pm »

In the 70's I contacted Hep C through drug use.I lived the next few years till the 90's till one of my Doctors started me on blood work every 3 months and ultrasound every 6.My viral load stayed the same for years( never knew what it was ) Then in 2004 my doctor suggested I try the interferon / ribavirin treatment.While on it I was put on SSR drugs for my depression,a side effect of the drugs.After 7 months of living hell medicating myself I was took off them with no reduction of the viral load.Fast forward to Nov 2011,after having my mortgage go from $450 to $1000 I quit paying it.My stress levels started to go up for fear of foreclosure and eviction.I finally got into a short sale with my house in March but my stress levels got worse.I started drinking,not a lot a few beers once in a while but after being clean for 15 + years I had a relapse.I was then put on SSR drugs again and seeing a therapist.After finally closing on the house and getting $120,000 dept wipped clean I quit drinking and the meds. During the 9 months it took to sell my house my viral load started to get worse.Even after the move it kept getting higher.Peaking at 1,000,000 2 weeks ago.BeforeI got to Florida I kept thinking my stress and drinking caused it to get worse.Once I moved I got a new Doc I asked her if that was possible even after being low for so many years.She suggested I get a liver biopsy.I will be contacting University of South Florida to make a apt for it.I also have to find out what my Hep C genotype.I was really getting worried since the last therapy with interferon didn't work.Then I found this support forum...after reading the promising results with sofosbuvir / ledipasvir. It gave me hope that my mistakes wouldn't cost me my life and that their might be a light at the end of the tunnel. Thank you for taking the time to read my Hep C story.

iana5252 · « **Reply #1 on:** August 20, 2013, 02:48:00 pm »

Hi Elijah,

Thank you for sharing your story.

Sounds like you are moving in the right direction. Your treatment options are specific to your genotype so good call there. And you are right that there are several new drugs on the near horizon should you need to go on treatment again.

Please keep us up to date on your progress.

- Ian

Elijah · « **Reply #2 on:** August 20, 2013, 02:56:06 pm »

Thank you for the reply.

jberlin · « **Reply #3 on:** August 20, 2013, 02:59:18 pm »

Welcome to the group! You have had Hep C for a long time, so our stories are similar. I contracted in late 1976 during emergency surgery, in 2004 did the co-therapy, but did see the viral load drop to UD at 24 weeks, continued the full 48 weeks, then the viral load was back in Aug 2005. So I was responsive and you were not. In 2012 I did the Incivek triple therapy, was UD at 4 weeks, and this past May was declared cured. You need to get that biopsy asap, stay off the alcohol, and hopefully be in a position to get cured by some of these new drugs! You said USF, so may I suggest you find a way to get to the LifeLink program at Tampa General as they have some of the most renown Hepatologists in the Southeast, and know Hep C treatments and the clinical trials that are underway. I was treated there, and they were a joy to deal with and unbelievably responsive to questions. Good luck, and don't go this alone! It is not easy or fun. Let us know... -jack

Elijah · « **Reply #4 on:** August 20, 2013, 03:17:50 pm »

Thank you for the reply...I will check out Tampa General.

Elijah · « **Reply #5 on:** August 25, 2013, 01:41:25 pm »

I had my medical files sent to Tampa General.Will be getting apt with one of the Docs in the Hepatology dept soon to see if they feel I need the liver biopsy.Then schedule the test.I am in the process of trying to find out if my insurance will cover the Hep C Geno test.Found out if I have to pay it it will cost $528 !!!!!.I might be able to get some of it covered with my family doc if I have to payout of pocket.

jberlin · « **Reply #6 on:** August 25, 2013, 09:33:40 pm »

Keep us posted... I know it sounds awful, but that money is nothing compared to life saving treatment. The estimated uninsured cost for triple therapy is about $65,000, and insurance companies likely have a negotiated price of around $35,000. So, ask about financial hardship, or find donations, and if they decide you should be treated, don't dare miss even one scheduled pill! Good luck!

lporterrn · « **Reply #7 on:** August 29, 2013, 06:30:02 pm »

Thank you for your story and the reminder of how strong we are. Keep in touch.

Elijah · « **Reply #8 on:** September 06, 2013, 03:57:43 pm »

Thanks everybody......I have insurance so the meds shouldn't be a problem.My cost for the blood work was around $250 so that was good news.I got the results it says my geno type is 1a is that good or bad?

lporterrn · « **Reply #9 on:** September 06, 2013, 04:04:38 pm »

1a tends to be the most resistant, but we are getting better results. I am 1a and I just cleared it. There are many factors that affect results, and perhaps you have other favorable factors to offset this.

Elijah · « **Reply #10 on:** September 06, 2013, 04:32:09 pm »

damn ...I hope I have the results you do.Hate to have one mistake cost more than I can give.

lporterrn · « **Reply #11 on:** September 06, 2013, 06:20:40 pm »

Honestly, it is way too early to think anything but positively. I know it is easier said than done, but there are so many factors that matter more, such as your stage. In the meantime, if you haven't already, try to take control of your future by getting yourself in the fittest condition you can. By the way, viral load goes up and doesn't mean things are getting worse. Keep in touch.

Elijah · « **Reply #12 on:** September 06, 2013, 06:30:09 pm »

Thanks..I work out 6 days a week lifting weights and cardio.I eat healthy no fried foods,fast food ,don't smoke or drink.
I will be seeing a Doc at Tampa General after they receive my test results.Hope fully have a liver biopsy soon to see where I am with my liver.I try to be positive most of the time but every once in a while I slip...like today.I was worried about my viral load cause it has gone up after 10 years of staying low.So I am glad that could not be a negative thing.

lporterrn · « **Reply #13 on:** September 06, 2013, 06:34:26 pm »

You nailed it!!! Your medical team is lucky to have such a motivated person to work with.

Elijah · « **Reply #14 on:** September 06, 2013, 07:39:18 pm »

After abusing my body for a long time I want to spend the rest of my life talking care of it.Been working out since the 80's so it my lifestyle now.

jberlin · « **Reply #15 on:** September 11, 2013, 11:13:06 am »

I am following your progress and pulling for you. Did you see one of the liver docs at LifeLink? That liver team there is the best. A few of them will hopefully remember me.

Elijah · « **Reply #16 on:** September 11, 2013, 12:03:51 pm »

Thanks jberlin...that means a lot.I amgoing to make a apt with the hepatology department at Tampa General.I wanted to make sure they had all the info faxed to them before I made it.

Elijah · « **Reply #17 on:** September 11, 2013, 04:48:35 pm »

I got my apt to see a doc in the hepatology dept for Wens Oct 16th at 1:40 pm.All my past blood work and my blood work for the geno type is there.I wanted to see them sooner.Just getting anxious to get my liver biopsy done.Funny I have tattoo's but don't like needles and having a biopsy is a little scary to me...and the unknown about the results and if the medication ( once it gets approved by the FDA) will help me.I will keep positive cause I know I got a lot more living left to do.

jberlin · « **Reply #18 on:** September 17, 2013, 11:13:33 pm »

The biopsy is easy, I have had several. Let us know what you find out & what will be the next step. Stay positive!

Elijah · « **Reply #19 on:** September 18, 2013, 08:29:24 am »

Thank you and I will keep my updates posted and stay positive.

Elijah · « **Reply #20 on:** October 20, 2013, 03:18:38 pm »

I saw a Doc at Tampa General just this past Wens.He told me after reading my med records,looking at my blood work and ultrasound.That I don't need a biopsy and that he is 99.5% positive that I don't have any liver damage or cirrhosis.That with all the new medications coming up that I will be cured of Hep C.After a exam and our conversation he also said that by looking at me and how my pancreas is functioning that told him that I shouldn't worry and that I don't need any more blood work or ultrasound till I see him in a year.
That is the best news I have heard in such a long time of dealing with my health and Hepatitis.

I wish all of you here to be free of it someday so you can enjoy this precious thing we call life. Thank you for you positive additude it helped me more than you know.

lporterrn · « **Reply #21 on:** October 20, 2013, 03:22:04 pm »

Thank you for this wonderful news, and keep doing what you are doing to stay healthy.
Lucinda

Elijah · « **Reply #22 on:** October 20, 2013, 03:29:39 pm »

....and thank you for the help. : )

jberlin · « **Reply #23 on:** October 22, 2013, 12:58:30 am »

Great news! Let us know what they decide to put you on in a year. Hope it is one of those new 12 week non interferon treatments! -jack

Elijah · « **Reply #24 on:** October 22, 2013, 10:50:33 pm »

I have no idea,just take one day at a time.Thanks because I cant use interferon kicks my butt.

jberlin · « **Reply #25 on:** October 25, 2013, 02:36:32 pm »

Interferon kicks everyone's butt! Thank goodness its reign is nearly over! -jack

Elijah · « **Reply #26 on:** October 27, 2013, 01:50:27 pm »

I agree Jack...had my Doc told me what to expect with the interferon it wouldn't have come close.Those that are showing good results that's excellent.I really didn't enjoy poking myself was very nervous doing it.Funny I did that to get high ....maybe that's why I am here ..... and will sit for hrs getting a tattoo done.Show me one and say I have to do it then its like show me the door.

jberlin · « **Reply #27 on:** October 31, 2013, 11:02:51 pm »

Do come back in a year and let us know what treatment they put you on! Cheers!
-jack

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Author Topic: my Hep C story (Read 28592 times)