scared and worried scary diagnosis

Discussion in 'Parent Emeritus' started by saving grace, Jun 12, 2011.

  1. saving grace

    saving grace New Member

    difficult child/easy child has been in recovery for over 4 years, yes he still takes suboxone and has had has had slip ups and made bad choices but he doesnt deserve this. he has tested positive for Hepatitis C, the treatement is grueling, similar to chemotherapy I am told, he will have to take interferon injections for 24 weeks a long with a handful of oral medications. Everything i have heard or read online is terrifying. why now?? i have grilled into him that if he just took the right roads in life that the universe will acknowledge him and good things will come. good things are not coming to him. I feel like I have lied and betrayed him. he has never been happy, he has always struggled his recovery has not been what I told him it would be and now this. He may not survive this...he is too fragile as it is
  2. susiestar

    susiestar Roll With It

    Recovery is never over. Some addicts need to be on suboxone for many years. Others can work their way off of it. But each relapse means going back to the beginning, which some don't want to do.

    Hep C is a scary disease. It is NOT because he is clean or because you lied about life in recovery. Life is hard no matter what you do. there are NO guarantees. We are given the right to PURSUE happiness, not to have it. I do know people with Hep C who are very happy. It is a choice, a way of looking at the roadblocks in life. it is not having everything go your way, which is what it sounds like your son expects. The hep c diagnosis came because he had so many years of bad decisions. It is NOT because he is in recovery thath e has it. It is because he is in recovery that they are willing to treat it aggressively. There are those who are active addicts with hep C who do not get aggressive treatment because the docs know they will not stop using so there is no point. This, sadly, is one of the side effects that comes from using drugs and being intimate with those who use drugs. It is not punishment, or the universe's grand plan. It is simply what happens if you make choices to engage in risky behavior.

    I hoep your son can find the strength in himself to fight this. I knwo you are scared and he is too, but you MUST let him know that you have confidence that he can meet this challenge and continue to stay sober and fight his way through it. there are people who beat it into remission or whatever it is called and they go on to live many years. But he has to know that this means that future relapses will have a much higher price tag in terms of his health. It is good to let us know your worries here, but be sure that you always let him know that you have total confidence that he can meet this challenge and continue in his recovery. I am sorry that he has to face this, but better he finds out now than in a few years when it has done more damage to his body.
  3. Nancy

    Nancy Well-Known Member Staff Member

    It is scary but what Susie has said is so true and it has nothing to do with what you told him or his recovery. It is sadly a consequence of his lifestyle at the time. My difficult child has some consequences she will carry around with her for the rest of her life. I tried to keep those from happening but I could not. I have to now resign myself to the fact that her choices have created problems for her that she alone will have to deal with, I can no longer carry that burden or feel responsible. I remind myself that she did not deserve to be born to an addicted mom who passed on the genes she did, but she is responsible for living her life differently now that she knows better.

    I am sorry for your pain. It is so difficult for us to watch our difficult child's make choices that we know will lead to a very difficult life.

  4. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Im so sorry Grace. Hep C is scary but he can get through the treatments. Many people are on interferon for other things besides cancer. Im betting the dose for Hep C is probably a lot lower thats how it is for other diseases and disorders its used for. My oldest son has a form of rheumatoid arthritis and he has taken methotrexate which is also used for cancer but he took a much lower dose.

    I hope your son can keep up with his sobriety during this. Suboxone is supposed to be good. Is it still working for him? Has he been able to taper down? I am interested in how they work that.
  5. HereWeGoAgain

    HereWeGoAgain Grandpa

    Sorry about the diagnosis - no, he doesn't deserve a blow like this; but hopefully he can realize that it's not a result of being in recovery. At least he knows, and hopefully staying in recovery will significantly lessen the impact of the disease. From what I have read the prognosis improves considerably with lifestyle changes, and many persons with the disease have no symptoms and lead nearly normal lives.
  6. saving grace

    saving grace New Member

    thank you Susie, you are right, I was feeling sorry for myself and for him. I would just like to see some positive things happen to him for all the work he has been doing. He is going to start his treatment in October, he hates the heat and it usually makes him feel sick anyway so he will wait till the Fall. The ironic thing about his diagnosis is that when he started his program 4 years ago he tested negative. His doctor actually told him that it could have been from a tainted tatoo needle, he has a few tattoos that he got after his drug use. we will never know and it doesnt matter, it was lifestyle choices that got him here.
    Janet, he has been on suboxone for 4 years, he has not used heroin or any other drug via a needle but he is smoking pot and he has used more of his script of suboxone than he should, he is basically doing very well, his docs feeling on the subs are if you were a diabetic and needed insulin you would take insulin for the rest of your life, there is not time limit on the subs, I do not agree. he has no interest in weaning off at this point, right now he is on the lowest dose possible. he takes 2mgs, he is so afraid of being sick that he wont come off, another reason I am afraid for him on the interferon, he is sooooo afraid of being sick.
    Also his hepatologist says that if he continues with treatment for the 24 weeks he has a 70% chance of retesting with no evidence of disease. right now he has a healthy liver the disease has not advanced at all.
  7. Hound dog

    Hound dog Nana's are Beautiful

    Grace I'm so sorry to hear of difficult child's diagnosis.

    Unfortunately it's the result of some poor choices, not his recovery. Hopefully the diagnosis will be a major motivator to staying sober and rebuilding his life.

    I hope the doctor can convince him to begin treatment now, instead of in the fall. I know the prospect of being sick scares him but honestly if he waits more damage is going to be done which will mean more treatment in the long run. Gives the disease more of a foothold as it were.

    If his liver is healthy now, I'd imagine treatment wouldn't be so bad, nor as extensive.

    I know this has to be so hard for you.

  8. gottaloveem

    gottaloveem Active Member

    Thinking of you during this difficult time.
    Everybody has brought up some great points.
    I believe he can successfully beat the disease. (or into remission or whatever it's called)
    I have a family member who has.

    Sending you and your son strength to get through this.

  9. Steely

    Steely Active Member

    My Ex has this - he has been diagnosed and untreated for around 15 years. He is still doing just fine.
    I know there are varying degrees, but if he can get the treatment than he will for sure be OK.
    Hang in there.
  10. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Thanks for the info on the sub.

    I dont like the heat either. Can he do the treatments while staying someplace that has air conditioning? I would be worried about not getting treatment until the fall. Though I am the great procrastinator myself. LOL
  11. Star*

    Star* call 911


    We have a friend going through Hep C. treatments right now. He's giving himself the injections. He got Hep. C from a bad blood transfusion years ago during surgery, after he was out of the service.

    Do they absolutely stink? Yup. Are they hard on him? Yup - he's 56. Does he have good days? Sure. Does he have more bad right now than good? Yes. Does he hate it and have pretty bad depression? He says it's so-so but his major line of support isn't his home life - (sad to say) it's coming to our house, hanging out and being offered a soda, or a candybar. A subscription to a magazine I knew he'd like and someone talking to him like he's a human. he has days where he can't get out of bed - but that's just part of it. Has he had days where he wanted to give up? Yup. What kept him going? His grandkids.

    So my best advice is for you to find whatever you think will keep difficult child going - put that before him - and tell him to keep reaching - let him know someone loves him - encourage him - and the days when he's just about to have it out with you, God, the universe? Let him - but tell him - there are worse things - just NOT today, and you get that and tht if he can kick DRUG addiciton? He's so much stronger than so many people I know - I'm amazed at his strength.....for someone you consider so fragile.

    Hugs & Love
  12. saving grace

    saving grace New Member

    The doctor said it is ok to wait until the fall. the virus is not "active" right now he is not sick. he wouldnt be able to work and have treatments during the Summer. it is also his very busy time at work, he works as a custodian at Boston College and he is doing Summer cleaning now that all the kids have gone home.
    Star, does your friend work? if not do you think he would be able to work with how he is feeling? how long does he have to do his therapy? and do you know if he is taking any antideprresents?
  13. Star*

    Star* call 911

    Our friend is a retired vet - and got his shots and all through the VA - they are not ---NOT the best place here at VA me. I'm not sure how long he has to continue to take them, I will try to find out without asking it's kind of a touchy subject - so maybe I can get DF to roundabout. As far as antidepressants? Oh yes. He takes those, and pretty heavy duty pain pills and sleeping pills. But like I said - he's in his mid to late 50's. Has bad back surgery, now walks with a cane, and has something else going on too- but wont tell us what. I tought perhaps parkinsons or MS - by his odd gait and shaking, inability to be a mechanic any longer - but he is really closed mouthed about the entire situation. I used to work with him - and he was in a T-bone accident involving a truck - and is trying to say some of this is from that - I don't think so.

    I do know that he can NOT take the heat here - he basically goes from the house AC to the car - AC to our house - AC back to the car AC and to bed. His quality of life is just sad. IF it weren't for the Grands i don't think he'd care. That and his couple days a week with DF.

    My heart goes out to you - it really does - but do try to find the SOMETHING that your son cares about - it could help in the Fall. Talk to a counselor now - and see if you can get some things in place NOW --do not wait till last minute.
  14. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Star...that sounds like much more is going on with your friend that just the Hep C. I feel for him. So glad he has you guys to come visit. I can also relate to the grands being a light to hold on to.
  15. saving grace

    saving grace New Member

    Hey All, I pulled this post back up from 2011 when my son was diagnosis with Hep C, I am pleased to say that he finished the 6 months of treatments, and has also just had his 6 month post treatment blood work and his livers viral load is 0!! so he has basically beat the disease.
    I dont have anything else positive to say about him right now :( he got through the treatment but so many other bad things have been happening with him this last year that it reminds me of where he was 6 years ago, not as bad but might as well be.

    Do they ever grow up?

  16. buddy

    buddy New Member

    Glad he beat it, what a wonderful thing. I know how disheartening it is when everything goes south again .....

    I always wonder if this will be the time things don't get better. Both our neurologist and psychiatrist say after that frontal lobe finally develops...for some late twenties ....things do stabilize for most. We'll see..................(hoping for us both)
  17. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Hi saving grace. Im glad he completed his treatment and his viral load is 0. So sorry he seems to be back sliding though. Hopefully he will manage to grow up eventually.
  18. susiestar

    susiestar Roll With It

    It is wonderful that he has such good test results and has 'beat' the disease. I am sorry about the other stuff though. (((((hugs)))))

    Sometimes all we can do is cling to that one bright light of hope.
  19. rejectedmom

    rejectedmom New Member

    I am so sorry that he and you are dealing with this additional concern. This is not punishment from the universe, it is just a sad consequence of his past lifestyle. I am hoping it will respond well to treatment and he uses this as a motivator to stay on the track to recovery. Hugs to you. -RM