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Newly diagnosed

Newly DX

  • By smalltowngirl

    Have a Hx of dealing with chronic active hepC thru a parent but never dreamed that this would be my reality……. got positive blood test back early Jan was referred to an Endocrinologist who repeated the test and confirmed I was positive get Hep C. After a bout with the flu and bronchitis I was able to go and have more blood work done along with an ultrasound this past Monday, we’ll Tiesday they called and said that I have to much iron in my blood and the dr wanted me to have more blood work to determine if I also have hemochromatosis so now I’m just awaiting the findings of the lab and ultrasound but the nurse did say the dr said my ultrasound looked ok but I’m just terrified, been reading up on the effects of the iron overload and the success rate of being to for help C which isn’t good. I’m going thru this alone and I’m feeling very overwhelmed and trying to remain positive and Hopeful

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  • By Randy Moderator

    Hi smalltowngirl and welcome to our community!

    I know all this news can be overwhelming but I just wanted to reach out and let you know you’ll be ok and this is not uncommon to those of us with Hep C, although rare it is very treatable. Here’s a little information for you friend-

    Venesection, or phlebotomy, is a regular treatment to remove iron-rich blood from the body. It is like donating blood, but the aim is to reduce iron levels to normal.

    How much blood is taken and how often depends on the patient’s age, overall health, and the severity of the iron overload. Normally, this happens weekly until levels return to normal.

    When iron levels build up again, the patient will need to repeat the treatment.

    Phlebotomy cannot reverse the symptoms of cirrhosis, but it can improve symptoms such as nausea, abdominal pain, and fatigue. It may improve heart function and joint pain.

    The amount of blood that can be taken depends on whether the patient is male or female, and their overall health condition. One unit a week is normally taken. One unit is one pint or around 473 milliliters.

    Medications can include a drug that binds the excess iron before being excreted from the body.

    The patient should have regular blood tests, and treatment normally continues for life.

    Life expectancy is normal if hemochromatosis is diagnosed and treated early, before too much additional iron accumulates.

    So take a deep breath and know we are here. I’m very thankful you appear to have a good physician who will know exactly how to help you! All best and warm wishes for healing going forward my friend! (Randy, Community Moderator)

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  • By smalltowngirl

    Thank you for your reply……. it helped ease my anxiety level! I’m still waiting to hear from my Dr after my repeat/followup blood work from last Wednesday so I’m anticipating a phone call in the next day or so, they (my dr) are pretty prompt which I’m grateful for. Will let you know what I find out. Thanks again!!!!!!

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    • By CaseyH Moderator

      Hi smalltowngirl, I just wanted to echo Randy’s awesome sentiments and let you know that we’re all here for you and have your back! It looks like Randy’s given you some great advice, and I just wanted to send some extra virtual hugs and support your way! Please do not lose your positive and hopeful spirit during this journey. Your warmth and hope are so amazing! Thinking of you! -Casey, HepatitisC.net Team

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  • By smalltowngirl

    Thank you both for the words of encouragement etc…. I found out last week that I’m negative for hemochromatosis and my dr is recommending 12 was of Harvoni. I don’t have any other information than that as in genotype etc due to being at work when I got the phone call from the nurse and didn’t have enough time to think of what to ask. The nurse did tell me that they are sending info to insurance company to see if they will approve the Harvoni and if they won’t sh saidntheynwill switch it to something else, said this process could take 4-6 weeks but once they know what medicine I’m approved for then I’ll go into the office for a teaching and given my meds at that time.

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    • By CaseyH Moderator

      Great to hear from you again, smalltowngirl. Glad to hear things are moving forward with treatment, and I hope your insurance pulls through for you! Please keep us posted, friend! -Casey, HepatitisC.net Team

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  • By smalltowngirl

    Nurse told me it would take 4-6 weeks to hear if insurance would cover Harvoni but it took 2 weeks and they approved it. I Lil be receiving the pills by Tuesday of next week and I will then go in for my teaching and go from there. I was relieved that my insurance is going to pay for it. I just have to pay 25.00 so I feel blessed about that. Wish me luck and success as I start the Journey next week in hopes of having a positive outcome.

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    • By Rick Nash Moderator

      @smalltowngirl

      That’s fantastic that they approved the meds so quickly! I wish you luck and success with your treatment! Keep us updated and posted, a new journey to cure is always amazing to watch. And as always any questions/concerns which may arise during treatment: we’ve weathered rough seas in this community, and we’re always happy to help and point you in the right direction towards that battle. The odds are on your side, and you seem to be arming yourself with all the right tools for success! It’s time to slay that dragon!

      -Rick Nash (Six time treatment Dragon Slayer and Transplant Recipient)

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  • By smalltowngirl

    So I got a couple insurance explanation of benefits in the mail today and according to what I’ve just read I was denied Harvoni but approved for Epclusa so I’m shocked because the nurse did not disclose that on th phone so now I need info on that medicine and it’s side effects and so forth
    Just not having a good day I feel defeated already 😞

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  • By Rick Nash Moderator

    @smalltowngirl

    I understand the feeling, I was slotted for Zepatier and they switched me to Epclusa when it came out. That is odd that the nurse didn’t disclose that, but thankfully the medications aren’t so dissimilar.
    Harvoni is a combination of sofosbuvir and ledipasvir which target the NS5A and B points. (essentially there are five or six different “locks” and five or six different “keys”)
    While Epclusa is a combination of sofosbuvir and velpatasvir which also target the NS5A and B points.

    The major difference is that Epclusa can be tolerated at slightly higher levels of liver damage, is pangenomic (so genotype doesn’t have a huge impact on efficacy,) and it costs a third less in price.

    The major part of the medication hasn’t really changed, so the bulk of what you’ve prepared for is still very relevant.

    I hope this helps alleviate some of that stress, it can be frustrating when it feels like someone else is making the decisions for us.

    -Rick Nash (Six time treatment Dragon Slayer and Transplant Recipient)

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