Re: The Likely State of our Immune Systems Post-treatment

[andrew j]

I finished Tx. in early June of this year, and was declared cured (SVR 12) in early September.
I am still wary, and careful, about household hygiene and cleanliness etc. ... about contamination in general, I guess.

My Dad has Hep C [also].
He is getting older now and needs more-or-less constant care.
My brother looks after him.
Because of Dad's Hep C status, I have avoided going around there, esp. since finishing treatment.
There have been blood spills - and other things - and neither my father nor my brother seem particularly concerned.
They are nowhere near as meticulous about these things as I am.

My bother has been really good about my sensitivity in reln. to coming around so far, but the constant requirements of caring for Dad are starting to get on top of him.
He needs a break, I think.

I guess my question is:
Are we more likely than other people to get infected, esp. so soon after treatment?
There seems to be a grey area in relation to what sort-of state our immune systems are likely to be in post-treatment?

The other issue, which is probably more psychological in nature, is simply around my aversion to Hep C.
I had Hep C my whole adult life.
I'm reasonably sure contracted it when I was 18, and even before I became full-blown symptomatic (in 1996) - I knew there was something wrong inside.

... That's my WHOLE LIFE! (maybe the subject of another post?!) ...

But for now - I just don't want anything to do with Hep C.
I don't want to have to think about it, I don't want to be in environments where it might be, and I certainly DO NOT WANT CONTACT WITH IT!!

I feel guilty, because - yes - my brother needs a bit of a hand by now.
And yes - it'd be nice to spend more time with my father.
He's not going to be with us for ever.

[Luna7]

Hi Andrew

I totally understand not wanting to be around Hep C after what we've been through! I'm even putting off going to the dentist as you never know if they clean their equipment properly. I don't think my dirty teeth is as serious a consequence as what could happen to you though. Your situation is complicated because, as you say, your father won't be around forever.

Maybe this fear/attitude toward HCV will fade with time do you think? It's perhaps just too soon to be totally balanced about it. I see you cleared about the same time I did.

It might help to remember that it really is hard to transmit this virus, and that if you wear gloves to clean up any spills, and don't visit if you have open sores on your hand, you will be fine.
It would be a shame to miss out on his company because of a baseless fear.

I've got a good quote that I like to go to when I my mission in life is fading due to fear:

  “When I dare to be powerful, to use my strength in the service of my vision, then it becomes less and less important whether I am afraid.”

Audre Lorde,
writer and civil rights activist

Luna

[andrew j]

Lovely, Luna.
Thank you.

... What am I scared of?

Probably, of having a wonky immune system, and developing some sort-of untreatable super-strain of the virus.

... But then, I have read here about some people - (mostly IDUs, and mostly in Europe) - who have got re-infected, and been re-treated, once, or even twice.
(I know things are generally more cautious in the U.S. on that front).

As far as the 'psychological' stuff goes - there is probably something akin to PTSD at play.
I am still really tired a lot.

... And there's a back-story to this - like there is to so many things by the time you're ... 59?!!
(How the f*** did that happen?!!).

[Lynn K]

Really we are no more or less susceptible to having an entirely new hep c infection than anyone else who was never infected but yeah after fighting so hard to get rid of hep c I for one would not want to risk being reinfected so as was suggested just be careful if you have any open wounds (wet or weeping) make sure they are protected.

[andrew j]

That's fantastic news Lynn!!

You're positive about this? (I'm assuming you are) ...

Thanks also for your sensitivity in reln. to this whole situation.

A.

[Lynn K]

Well in all honesty it is only my opinion but I have never run across anything to indicate otherwise. Basically we become newly infected the same ways people become infected in the first place. Risk of transmission in general for everyone is low including us.

We either had a part in our infections or were just not lucky. For those like me well I don't do those things anymore that I did back in the day in 1978 just a couple of times. For those who had an accidental needle stick or a transfusion well the blood supply is safe from hep c now and if you are a health care worker use due diligence. Just make sure your medical persons and dentists are using standard precautions and we should be fine.

The scary thing is those items we see on the news like drug addicted medical staff stealing IV pain meds and contaminating the meds remaining in the process. But we can't go around worrying about every one in a million incident so we just live our lives as best we can knowing the world can be a little scary at times but still getting up in the morning to face every day anew.

[Mugwump]

HCV infected blood on surfaces is not as much of a concern as one would think. As long as we have skin to protect us that is.
Thank heavens for this fact otherwise HCV would be a plague that we could not control.

I work in seniors facilities and have over the years I am sure I have been exposed to C diff and the other really nasty shit. Thank heavens my immune system seems to be up to the task. And now post treatment it seems to actually be too active if anything!
 

One year my boss called me in a panic at 11 at night because the care aids were starting to panic. The facility that I was working at at the time had just been knocked for six with the beginnings of a nasty norwalk outbreak.

I spent days getting the extensive outbreak procedures in place. Sanitized all surfaces and started an enhanced cleaning program.

I worked exposed to this particularly nasty bug for long periods and never caught the thing... touch wood. The hard work that I and others did prevented the deadly re-infect cycle that kills many seniors in care facilities. We cleared the infection cycle in under 4 weeks while many other facilities here went on for over six months because the staff did not respond well to the crisis.

The funny part is I became a cook shortly afterward and wound up sort of being in charge of this kind of situation because I have learned not to panic about infectious diseases and more importantly how to deal with them effectively.

Fortunately re-acquiring HCV after successful treatment is the least of our worries post treatment for most of us.

[andrew j]

Inspiring stuff.

Thank you both.

I am just trying to re-organise my thoughts ...

[andrew j]

I find that analogy of yours particularly helpful, Mugwump.
Thank you.

... Somehow, you manage to highlight most of the issues I'm struggling with:
that weird and spooky feeling of being in an environment where lethal pathogens might be lurking!; the need for better and more comprehensive cleaning and sanitation procedures - and that just having to sort-of carry on and do your best, despite the 'darkness'.

I think it's been made worse by my getting a serious infection about a year ago. (Staph. aureus).
I was in hospital for 7 weeks, on mega doses of antibiotics.
I had to have some operations done (on my neck, and groin) to clean out yuk, and repair some damage the infection had caused.
One of those operations went wrong, and I now have a bad leg.

(... And how did I get this charming infection, I hear you wondering?
Some incorrect decisions, and an accident, caused by our old friend 'brain fog' - that's how!).

So anyway - I think I'm probably a bit hyper about contamination generally, by now.
Almost OCD, I sometimes wonder.
... Household cleanliness; washing hands - caution about what to touch.
That sort of thing.


As it happens, I saw my Dad yesterday.
Kept super-cautious, as usual, and initiated all my decontamination procedures afterwards?!

Sheesh!

[fourlocos]

I feel that if my husband of 36 years never got it and my two sons both born C-section with my blood on them never got it then it's really not as easy to catch as you think it is.  Just my 2 cents.  Even during treatment my husband would drink from my glass or try food from my plate without any concerns and he is fine! 

[andrew j]

Thanks for posting, Fourlocos - and please forgive the delay in getting back to you.
Your post is a real help.
You're good at enhancing feelings of security, aren't you?!

I don't know - I reckon maybe 30% of it is concern because of stories of immune- systems going wrong because of Tx.
Mostly, though - it's just that Hep C has taken so much out of my life.
By now, I just don't want to have to think about it at all.
I don't think that's unreasonable.
By now, it's an emotional thing. You know?

Whatever it is, life is all about facing into things, and doing things we don't want to do.
Eh?

[Mila]

HI~
I finished my treatment beginning of September and have been HepC free consistently. To focus on your concerns about getting reinfected more easily...according to my doctor we do, all the kinds of Hep. I was instructed to get both the A & B vaccinations. Fortunately they make one that is both. So you only have to get the one shot and then another in like 6 months.

You will not get reinfected by being in a house that has HepC blood in it unless you somehow ingest that blood into your blood. So, if you have any open wounds or sores be sure to keep them covered and waterproof, clean them as soon as you get home and just wash your hands regularly. They say to recite the alphabet while washing to get them good and clean. About 15 seconds.

What you should probably not do is stay away from your father because you are scared to be reinfected. Don't handle anything that is or has been bloody without gloves. You will do two things by doing this.
1) Spend time with your father at a time he is so vulnerable and needs his family
2) Conquer your fear of getting reinfected.

I hope it all irons out for you and your family.
Blessings,
~Mila

[andrew j]

Thanks for the thoughtful post, Mila.

I actually decided about a week ago that I had to get more involved.
I was becoming increasingly concerned by what was happening to my brother.
He was becoming overwhelmed and desperate, I think.

It's been OK.
I just have to treat it like a job of work, and approach it that way.
That works for me - because I can 'care' in a more 'conscious' way.
I learnt to do that when my mother was dying (for reasons I won't go into here).
Don't know if that makes sense? ...

I've got my safety strategies and processes.
By attending to issues of safety - I am freed up to actually enjoy my Dad's company.

(I don't think I can bring myself to wear gloves in my family house.
It's just too weird!).

My brother is clearly responding to a bit of support around the place.
He seems to so need it right now.

I wish this wasn't an issue for me - but it is.

It's OK.

[Johnny_Wayne]

I am also hyper-vigilant about reinfection. I contracted hep c around 32 years ago and I just finished my second full course of treatment. (relapsed once already). My roommate was also once infected and cure on sovaldi about two years ago. Until the day I see SVR 24, I buy cheap toothbrushes and razors and dispose of them daily. I sanitise surfaces with clorox wipes or lysol, and have generally turned into a germaphobe. Of course, I am F4 cirrhotic, so one more relapse could be my last. In a nutshell, I feel self conscience about taking all these precautions, but until I see SVR 24 that's going to be the way it is.

[andrew j]

Johnny - Have you reached SVR 12 yet?

[Johnny_Wayne]

Johnny - Have you reached SVR 12 yet?

I am about 14-15 weeks post treatment, and I don't know if I am SVR or not. Last time I relapsed after SVR 12, so I'm weary of putting much faith in that number.

[andrew j]

... So they're not going to run that 12 weeks-post test in your case?

[andrew j]

Am I being dumb?
Forgive me.
As it happens, I'm having a full-blown OCD day!
Agghhh!!

Suffice it to say - I understand where you're coming from!
I'm 8 months or so post-tx.
When I first came here, I was surprised -
There were people who had been clear for two years, who were still anxious about the possibility of the virus returning.

As you say - you just have to go with whatever it is you need to do in order to feel safe.

[sherfire]

I hadn't even considered that kind of annoying anxiety existing post treatment. I just finished my treatment today and while I am concerned about getting the clear from the doc I don't feel like it will be a lingering concern past that. Life is too short to worry about everything. That's how I feel about it, anyway.

I hope you guys can get on with your life. You're disease free. The chance of you contracting this disease is very very small unless you share IV's. You're cured. The fear that you have is pretty irrational. If you can't get comfortable with that idea then probably professional help could guide you past it.

Hopefully you can get relief from those concerns.

[Mugwump]

I hadn't even considered that kind of annoying anxiety existing post treatment. I just finished my treatment today and while I am concerned about getting the clear from the doc I don't feel like it will be a lingering concern past that. Life is too short to worry about everything. That's how I feel about it, anyway.

I hope you guys can get on with your life. You're disease free. The chance of you contracting this disease is very very small unless you share IV's. You're cured. The fear that you have is pretty irrational. If you can't get comfortable with that idea then probably professional help could guide you past it.

Hopefully you can get relief from those concerns.

For many who clear this virus the long term psychological effects of having HCV have left a toll that is very hard to measure. We can look back on the damage now and think that it is minor but in reality it was very real and deeply troubling.

This is especially true when when we reflect upon how some people treated us when we were infected. I know that during the early years after this disease was first isolated it caused even those in the medical profession to treat us as dangerous goods.

A mother of a friend of my daughter heard of my infection because my daughter, who we had educated about my infection, told her friend that I had HCV thinking that other people would know that it is not easily transimitted. The result was that suddenly a group of people in the school that my daughter went to would not allow my daughter to visit or allow their children to visit my daughter. Such was the stigma and fear that this disease caused.

The psychological blows that many of us have experienced because of this disease are deep and we need to be more understanding of why some find it hard to adjust to life after HCV. Kindness to others even when they are less than understanding is a great gift that we all must learn and this disease teaches us this lesson if we open our minds and hearts.

Eric

[sherfire]

I get what you're saying. I think that many of us have probably learned those lessons at some previous point in life. I think that many of us have also had negative experiences as a result of this virus. However, when I look back at my life, HCV was the easy part. It has had a negative impact on my life but not as much as my epilepsy has. Not as much as my severe food allergy has. Not as much as losing my closest friends. Etc...

Adults have to deal with psychological blows. Your dreams didn't come true? You had people hurt your feelings? Well haven't we all regardless of dealing with HCV? I'm not trying to be unsympathetic, I totally understand where you're coming from as I've dealt with this kind of discrimination. But having your life yanked out from you as a child because of medical conditions I guess can teach you those same lessons that someone else may learn later in life. Watching your best friend get shot and killed kind of prepares you for stuff. Having your entire life yanked out from under you because of a disease and never getting to live life because of it is probably much worse. That's my life. At least you had the opportunity to have kids, get married, live life.

Again, I'm not trying to be unsympathetic but a group of people not letting your daughter hang out with their kids isn't really a reason to get your panties in a bunch. I mean, there are people dealing with serious shit and we're complaining about some people who don't like us anymore? Really?

[andrew j]

Sometimes things come a bit unstuck because we don't consider what we want to say enough - or for long enough.

When I said that I was having an 'OCD day' (above) - what I should have said was that I was having a hell of a day - (in reln. to the subject matter of this thread, as it happens).

Thank you, Eric, for your kind and understanding words - and for getting the measure of things.

... Maybe I should talk to someone (Sher).
I've been wondering about that lately.

I'm sorry that you have had such a hard life - and hope things are going OK for you today.

A.