What does being free from HCV change in our daily lives?

[Mugwump]

It is hard to understand at first the level of damage done to our lives by this infection. And it turns out that the little things in life that you do every day are effected the most by this disease.

For me over the years cutting myself while cooking or having an open wound while administering first aid to my wife and daughter sent me into a panic at times if I had to back off. Surgical gloves are not the best answer sometimes. You touch them when you put them on and if you have an open wound chances are you will contaminate them as you handle them.

Then there are the little things like toe nail clippers, utensils, that scare the crap out of you if you bleed on them. I became obsessed with sanitizing and like those who are exposed daily in the medical profession, practised excessive use of extreme antiviral/biotic sanitizing solutions like bleach and strong hydrogen peroxide.

My wife at first was obsessed with using spray Lysol on everything which became ridiculously expensive!

These habits of trying to kill every bug on the planet are not sound sanitization practice! In fact the sanitization of every little bug in our way daily is dangerous. It has been documented to cause mutated strains of bacteria to spring into existence that are resistant to drying out and over time require stronger and stronger levels of oxidization agents to be controlled.

Then the constant daily exposure to chlorine fumes is not a healthy thing to say the least. The over use of an oxidizing anti viral agent like hydrogen peroxide will dry the natural oils of your skin and cause sensitivity to dirt. I frequently developed contact dermatitis by using too much oxidizing sanitization chemicals.

Now that I am free from HCV it is hard to go back to sensible sanitization practices. Out of habit I use too much anti viral hand sanitizer and have to remind myself that if I scrub too much of the natural protective layer off my skin then I will start to blister with dermatitis again.

Yes sanitization is important but thank Heavens now all I really need to do is be sensible with the practice.

Just one more radical effect of being free from HCV and how this horrible disease effects all of us, including the ones we love.

Eric

[waitingforrain]

Congrats on clearing the virus.  The eradication of this bug is in the horizon I hope.

I'm 12 week SVR, but instead of feeling relief I'm kinda mildly paranoid of reinfection and that keeps me from being happy about SVR.  Case in point, I was running in one of those races with the obstacles and whatnot and the trail was clear for the most part. However, there were stray stems of what were thorny plants and I felt a thorn scrape my shin while running once. There were around a thousand people in that course that day.  I worried over that for days.

Also I compete sometimes in Judo on occasion and I just recently read the article from 2002 that found intact HCV virus excreted via sweat.  I know it's controversial, but I worry about that now. Sometimes we get little dabs of blood on our gi from a cuticle scrape, buts it's rare. Shew, it's hell in my head sometimes.

I wish we both could get over the hump and not feel so scared about the very remote possibilities of reinfection
 

[Lynn K]

For me not much has changed except not having to worry if I get cut at work having to turn away from a friend offering assistance as opposed to what most people would to is to turn toward that friend and let them apply a bandage.

I work in a machine shop and we get cuts sometimes bad ones from time to time. But now I don't have to feel like I am a walking contagion.

The only other change is the hope I may live more than a few more years and that my cirrhosis may improve with time instead of continuing to get worse because of hep c.

My only fear is HCC

[shootingforzero]

Not to be crude, but: Period sex.
Also, just not worrying about infecting other people in general is a huge weight off my back.
I started training Muay Thai about a year ago. Recently I've gotten to the point where I participate in sparring. The other day I got hit in the face and sprung a nosebleed, it was such a relief not to go into a panic about anyone coming into contact with my blood.

[Philadelphia]

Exactly what Lynn said. Same.

[gnatcatcher]

By the time my HCV was diagnosed, I'd had it for over three decades. During that time of blissful ignorance, I'd shared nail clippers (I occasionally nick myself) with family, yet I was the only one with HCV. So, although post-diagnosis I was careful about nail clippers and toothbrushes, the only time I really worried was the first summer I photographed in a place where the mosquitoes weren't even deterred by Deep Woods Off. I asked my PCP if a mosquito that had sawed into my skin and imbibed my blood could infect the next person whose skin she sawed into; he said no, which laid that worry to rest. After reading these forums, though, with all the accounts of vaccination guns infecting people, I wonder if my PCP is correct.

So now I can safely feed the mosquitoes (a hazard of doing wildlife photography, since the critters are most active precisely when the mosquitoes are). Exit Hep C Virus, enter West Nile Virus?

As for HCC, I accepted that risk during the years when there wasn't a safe treatment for me. If something else didn't get me first, then that would be it. With cancers on my mother's side and heart disease on my father's, I'm amazed I'm still here.

Gnatty

[Lynn K]

I agree with your doctor mosquitos do not transmit hep c.

For illnesses that can be transmitted by mosquito that is part of the life cycle of the virus it has to spend time inside a mosquito in order to complete that part of its lifecycle.

http://www.cdc.gov/hepatitis/hcv/cfaq.htm#cFAQ31

Can a person get Hepatitis C from a mosquito or other insect bite?
Hepatitis C virus has not been shown to be transmitted by mosquitoes or other insects.

Good thing too or there would be a whole lot of hep c as well as other blood borne virus infected people out there.

[Mugwump]

Lynn I don't know about the Canadian mosquitos especially in Manitoba and up in the territories around the tundra. Here in Canada there are places where I swear they sound like apache attack helicopters coming in and are indistinguishable from having a million military nurses all giving you a shot at once!

Some have a proboscis that look like it could have come from the movie Alien. But as Gnatty has stated the big worry now is West Nile which can be transmitted. The vector is the raven and crow unfortunately for that wonderful species. Here is hoping that some strain of HCV never jumps species the way other virus can.

But this is not going to keep me from fishing. 

That was why I started this thread, I am finding it very important to explore how this virus has effected our critical thinking and what difference being free from the horror is making in our lives, especially in the way we perceive things in general. I am not a psychologist but am very interested in the way we see our future now that there has been a sudden radical change take place.

Gnatty as an aside perhaps you can enlighten me:

I saw something absolutely wonderful a few years back relaxing in camp waiting for the afternoon bite to come on.
A gray jay landed on a specific branch on an old tree and instead of looking around the camp or scolding me for not giving it a tid bit of the sandwich I was eating just sat there silently! I was astounded because all the "camp robbers" I knew around this particular lake were accustomed to getting handouts or picking the bugs off our trucks wind-shields. You know their normal behaviour.
As the bird sat there staring at me it opened up a wing and an extremely small bush tit flew up and started to preen areas of the underside of the jays wings.

I didn't have my camera at the ready it was in my boat!

I have never seen a behaviour like this before and it was an obvious symbiotic behaviour akin to ocean species of cleaner fish! The "bush tit" as it is commonly called was the smallest I have ever seen it was no bigger than our Rufus humming bird! It looked like some small species of Gnatt catcher and was coloured very similar and had a beak that was the same shape but shorter.

I have tried to see this interaction every year but have not managed to see it happen again. I have spent a very good portion of my life in the Canadian north and am completely baffled as to why no one has ever reported the possibility of there being cleaner bird behaviour in the boreal forests.
So before I send documentation to the University of Northern BC, I would like to know if anyone else has seen this behaviour first hand. Others that I have spoken to have not and much like "the sounds of the Northern lights" would be considered a myth by academia so documentation might help convince the academic crowd. Scepticism is healthy but it can be a royal PITA especially when dealing with desk jockys that like to call the shots LOL

Thanks


Here is another point regarding how being free from HCV can effect our critical thinking. Having HCV has prevented me from having a good sense of self worth and the sensibility to explore the world and interact in a way we all need to, which in turn gives our lives meaning.

All the best as we all heal from this disease

Eric

[KimInTheForest]

Eric, your report of the bushtit preening the grey jay caught my attention, as I am a serious birder, and also in Canada like you. Interspecific allopreening (as it is called) between bird species is so rare, that this one documented occurrence of a black vulture preening a crested caracara is cited multiple times: http://ibc.lynxeds.com/news/rare-case-inter-specific-allopreening

I have certainly not heard of it among any of our more northerly species. You were very fortunate to have witnessed this rare occurrence.

Once a few winters ago, I had the opportunity to watch a song sparrow submerging itself in an icy river in search food, just like the dipper beside it was doing! That is a customary way for dippers to eat. They actually walk on river bottoms, often of very fast-flowing rivers (which is asounding given how small they are). But this is not something sparrows ever do. Yet there had been snow on the ground for weeks, and in a part of Canada where this is unusual, so the resident song sparrow population did not know how to deal with it. And this one song sparrow was in the river, on a stone, going in and coming out with stuff in its mouth. I was amazed!

kim

[gnatcatcher]

Lynn, thanks for seconding my PCP, even tho the CDC's "Hepatitis C virus has not been shown to be transmitted by mosquitoes or other insects" seems to leave a little wiggle room in case future evidence appears.

Speaking of evidence, Mugwump, I wish I had some for you, but I don't live where gray jays and bushtits do. It definitely sounds like mutualism (a.k.a. symbiotic behavior); the bird example that comes to mind is the oxpecker which eats ticks and other parasites off of the skin of rhinos and zebras. What I see around here are birds of the same species (such as a pair of Wood Ducks) allopreening (preening each other), which not only strengthens the pair bond but provides edible protein. While it would have been ideal if you'd been able to photograph what you saw, I would hope that there would be an open-minded scientist at the U of NBC, since he or she is probably familiar with allopreening and oxpecker behavior.

Kim, I see you've added some interesting information. Both you and Eric seem to have been witnessing evolution in action!

Back to the theme of your thread: when I got diagnosed and realized it was surgery that had infected me, I was angry that the medical profession (innocently) hadn't been able to live up to "do no harm" and as a consequence I was stuck with the mess and financial drain. Part of that anger was knowing that there was no way of proving that I hadn't done anything to bring HCV on myself, even though that was the case. So, that's how I felt stigmatized. I'm still not free of the financial costs, since there are copays for twice-yearly ultrasounds, f/u visits, etc.

If I do reach SVR12, one thing I will be delighted to be free of is all sorts of doctors (hospitalists, colonoscopists, etc.) telling me with great urgency that I have GOT to see Dr. _ (the hepatologist) pronto. Given today's super-short doctor visits, I hated wasting time explaining that I'd seen Dr. _ twice, but there wasn't a safe treatment for me (prior to Harvoni), and that I was keeping up with developments and would see him once there was something I could take.

Now on to psychology: it was very important to me to spend as much time as I could LIVING, which meant spending minimal time being a patient. Bless my PCP -- he has handled everything he possibly could, so that I didn't have to be trotting off to umpteen specialists, each of whom would need to be quickly educated about the intricacies of my many diagnoses so s/he wouldn't do further harm. I'll probably still feel as though I'm walking across a minefield full of unexploded ordnance every time I have to see a new doctor about something.

Since I was already putting the emphasis on living, that hasn't changed post-Tx. There have been so many diagnoses in my life so far, there will probably be more -- I just don't know what or when. Therefore, my attitude has long been that I'll deal with whatever whenever, but meanwhile, my day-to-day life is quite joyful.

Wishing you-all joy, too.

Gnatty

[sapphire101]

As I have recently posted in another thread, the biggest change in my day-to-day life post HCV is that I no longer sweat the small stuff.

Routine problems and even some bigger problems really don't mean much when I compare them to my pre-SVR monster problem of living with a chronic infectious likely deadly disease that had no cure.

I am free to be a happier more balanced person and in a crazy back hand way this is a blessing.

[Sheltonmj]

Totally change in my life.
 I unfortunately had all the symptoms and had over the years been to the doctor pleading for help and my girlfriends and those close to me, wich are many since I worked in a very large factory for thirty years, had often seen me staying as still as possible. Doing as little as I could to get by, both in my work and personal life.
 I always said I felt as if I was slowly die ing. 
 There did not seem as if it made any sense to do much and I wondered how so many walked and talked as if it were nothing.
 I no longer ask my love ones if I am dieing anymore. My brain is coming back.
 I am stronger everyday.
 I am 5 weeks Eot
 Virus is undetectable.
 All labs are normal.
My doctor says she and her other doctors have not had one relapse.
 So I'm good. 

[Mugwump]

Totally change in my life.
 I unfortunately had all the symptoms and had over the years been to the doctor pleading for help and my girlfriends and those close to me, wich are many since I worked in a very large factory for thirty years, had often seen me staying as still as possible. Doing as little as I could to get by, both in my work and personal life.
 I always said I felt as if I was slowly die ing. 
 There did not seem as if it made any sense to do much and I wondered how so many walked and talked as if it were nothing.
 I no longer ask my love ones if I am dieing anymore. My brain is coming back.
 I am stronger everyday.
 I am 5 weeks Eot
 Virus is undetectable.
 All labs are normal.
My doctor says she and her other doctors have not had one relapse.
 So I'm good.

It does take time to clear the mind from the damage that this disease does to us. When I was first diagnosed I almost took my own life, I was quite ill at the time and lost in the spirit and mind. I stopped looking after myself, mopped and fretted about every little thing that seemed to be happening to me.

It seems that for some of us clearing the virus is uplifting but does have a down afterwards that must be dealt with. Survivors remorse is common I know I am feeling it, the strange inexplicable regrets of losing someone you know to this disease but you wind up feeling you have been cursed with survival even if you consciously know that this is not so.

You are on the right track and you will find new inner strength as your body heals so will your mind. Relaxing is hard and winding down after HCV is not at all easy! Our minds need calm exercise as much as the body does. I have found that doing something that I have not done in years but love to do to is the very best remedy for the HCV blues, which seems to be what many are going through. You are not alone by any stretch!

Whatever you love to do, do, don't you be blue to!

A fellow ex-hepper
Eric

[chino1969]

Eric,
Very well said.  I've had the same feelings since beating this disease.

[Mugwump]

Not to be crude, but: Period sex.
Also, just not worrying about infecting other people in general is a huge weight off my back.
I started training Muay Thai about a year ago. Recently I've gotten to the point where I participate in sparring. The other day I got hit in the face and sprung a nosebleed, it was such a relief not to go into a panic about anyone coming into contact with my blood.

Can't comment on that.  But going through male menopause is no fun and is something that I can relate to. The other day I ordered a "tall blond" in starbucks and realized that I was getting to old to handle one!

[jakas]

Besides the feelings and emotions how are you all doing healthwise ??

[Mugwump]

Besides the feelings and emotions how are you all doing healthwise ??

Better than I have been in over 6 years. My strength is good enough to hold my back straight, my thryroid functions have normalized and I didn't have to increase my daily dose of thyroid replacement hormone: what usually happens as you age and your system deteriorates. I can play my classical guitar and study for longer periods of time than in 10 years without going into back spasms. My liver functions are all normal. My prescription for glasses only marginally changed and I can still use my 12 year old glasses for driving no problems. My night vision is actually getting better.

So I have no more excuses for not getting a better job than a short temp night job cleaning banks, which turns out to be the only bummer about being cured of HCV in my case!  So my recovery is amazing but it did take at least 4 months to get over some aspects of fatigue brought on by my liver getting a kick in the butt to get it going again,

I hope many others with cirrhosis make out as well as I have. My latest ultrasound showed no increase in the size of my liver and no abnormalities or signs of ascites. So we will see next year if my cirrhosis has reversed and another fibroscan shows under 13. At start of treatment my scan was a confirmed 26 and my enzymes were all over the map alt in the 150 range.

I hope this encourages those who are having a hard time and have cirrhosis to stick with it and see it through without fear.

Kind thoughts to all
Eric

[jakas]

Thank you, this is very encouraging for me.

[Scoutdoy]

Hey Eric, glad to know that you are feeling better. I have had this nasty disease for 30 years but have only known about It  about half as long. I can remember the day I found out ....just as I remember the day Ronald Reagan was shot or the Challenger blew up.  My life was completely turned upside down and it was devastating . The one thing I can say about living with this disease is how I felt like a prisoner and alone. I was scared to death that I could infect someone every single day. My life revolved around this disease.  The physical pain and the mental anguish could only be understood by someone else who has this disease.  My  marriage broke up,  my husband just could not understand what was happening. He could not understand the pain and the fatigue that was a daily factor of my life. There are no doctors, there are no therapists, that can truly understand what it's like to have this ....unless they had it.  I felt  for so many years that I was a pariah or a leper around my family members, my coworkers, and my friends.  The first test result that showed I was undetected changed my life and lifted a burden I have been carrying for a very very long time. My life took a dramatic turn the day I saw that paperwork. It had about the same effect as it did the day I found out I was infected with this disease.  I am no longer a pariah or a leper and I feel damn good. My bones don't hurt the fatigue is gone the brain fog is gone and I am loving life. When I finished treatment  I actually said to myself what do I do now ?  No more hiding the razors and toothbrushes no more having a self-conscious elephant on my shoulders every single place I go.  In three weeks ...God willing ...i can yell to the world I AM FREE!


Scout

[Else]

Scout, what a wonderful post!!!  Yes, what a journey it has been.  My only real "pariah" experience came rather recently.  Especially when I remember that I was diagnosed over 20 years ago.
I had a cousin move to my state with her husband and young son.  For the first two years, I saw quite a bit of them.  I told her about my HCV status a day or two after beginning treatment on Harvoni.  Needless to say, I hadn't been talking to her about it before then.  Not secretive.  I just don't talk about my medical issues to pass the time of day.
So really?  I was sharing what I thought was really good news.  Then something odd happened.  A handful of "get-togethers" were cancelled.  Then she finally came over with her son for lunch.  She'd brought his food in a little special container.  Okay, so maybe he's just particular.  Or maybe she is?  No.  When I handed him a spoon she grabbed it from him like I'd handed him a steak knife.    "Oh, he has his own utensils."  That's when it hit me.  She was terrified to have him eat anything at my house.   
I had a brief shot of embarrassment, then a brief shot of irritation, then just felt bad for her for being such a nitwit.  On one hand, the woman has a phd and the ability to google.  On the other hand, I well remember the paranoia of early motherhood.
So my take-away was this: if I'd been in my 30's I think I would have been mortified and angry.  But I'm not in my 30's.  I'm in my 50's.  So I'm neither of those things.  I'm just relieved I'm off the short-list for babysitting a 3 year old! 

[Scoutdoy]

Else, that's one way of getting out of babysitting! Only 3 people even knew I had this disease for years.  Unfortunately I knew how ignorant people were and decided not to discuss it with anyone. Unfortunately I believe that people who have hepatitis live a very lonely secluded life, I did anyway. This  forum allowed me to have conversations with people who really understood what I was going through I wish I would have gotten on this forum a long time ago. Thank goodness there is a cure out there and so many people are getting cured.  Hopefully from now on people will not have to go through what we have in the past .


Scout

[Else]

I agree, Scout.  I'm pretty yappy about HCV these days.  Frankly, to anyone who will listen.  I figure, whoever "they" are, they might have a sibling, friend or neighbor who needs to know about the new treatments.
Also, I'm weary of the perceived "face of HCV".  There really isn't one.  But the notion is still there.  I look like a republican and a church lady (I'm neither) and I like the look on people's faces when I talk bluntly about having HCV.     I may get a tee-shirt yet. 

[Philadelphia]

Agreed Else. As a 56 year old primary (elementary) school principal who as been known to rock a string of pearls on occasion, I appreciate the opportunity to subvert expectations. Speaking of school, two more days until our 6 week summer holiday. I'm heading to Canada, the US very briefly, then Cuba. Yay for holidays!

[jakas]

Someone wrote that the first 2 weeks is the hardest. Is that the norm ?

[Philadelphia]

I found weeks 2 and 3 were tough

[Scoutdoy]

I found the first week and the last week hardest for me. The first week I simply didn't drink enough water and the last week I think was because of a weird bit anxiety and not wanting to stop taking them


Scout

[Else]

Good to hear it, Philly!  Wow, when you Aussies travel, you really get up and go! 

[Philadelphia]

Everything (except Bali and New Zealand)  is so far away that we tend to go for it. I'll be on the road for 6 weeks. I actually feel like I'm not going as hard this trip. Last time I landed in Vancouver, went to Vancouver Island (Comox), travelled to see friends in Buffalo, NYC, went to DC, then up to Montreal, Quebec City, Halifax,  Newfoundland, back to Vancouver, then on the snow train to Jasper. Then back to Vancouver and home.

This time I think it's Vancouver (my daughter lives there), Vancouver Island (Tofino), then Buffalo again, Wellington FL, Maybe NYC, Boston, Toronto, Cuba, Vancouver.

I guess that's a bit.

[Lynn K]

Wave at us in Seattle as you are passing through safe travels

[drummerman]

Agreed Else. As a 56 year old primary (elementary) school principal who as been known to rock a string of pearls on occasion, I appreciate the opportunity to subvert expectations. Speaking of school, two more days until our 6 week summer holiday. I'm heading to Canada, the US very briefly, then Cuba. Yay for holidays!

"Rock a string of pearls"??
Thats new one.  Does it mean to party??  I assume so.  Is this a common phrase??

Jealous of you going to Cuba!!! Some of the best drummers in the world!  Have fun!

dm

[Scoutdoy]

Dm....I have heard several variations of that phrase...but not partying...hahaha


Scout

[Scoutdoy]

I bet it depends on what era you have lived


Scout

[Philadelphia]

I hate to be really literal, but it just means "to wear with attitude". So I wear a pearl necklace to work sometime.

[drummerman]

I hate to be really literal, but it just means "to wear with attitude". So I wear a pearl necklace to work sometime.

Ohhhhhh!

dm

[BillT]

I'm sorry but I cannot,will not,and refuse to go through my life worrying about everything.I'm not built like that.Yes this has been a blessing,and I'll do what I can to avoid getting reinfected,but I'm not going to do that to myself.It's time for me to live and get on with things.

[kimharvest]

A wonderful convoluted conversation! Though I may never be able to wear a string of pearls comfortably again!  Oh the gap btw the generations! This is why one should study the past! It great to be a hep cat but you also have to be able to understand others. Yes, dropping the stigma of hepc after decades is a welcome step! Like walking out of a nightmare. Before, my first response in life has been to withdraw and hide. Feelings of inadequacies, pariah syndrome, self loathing, blaming, and just not having the energy to fight these thoughts. Feelings of abandonment, secrecy, feeling set apart, extreme aloneness, sadness and horror at losing ones abilities.  But there is one other experience we all share; rebirth! How many people experience that? Even if it is a slow surge, the reemergence of energy and winning the fight against this disease and the rebirth of our minds.  It is NOT over! We all are getting a second chance to live our lives and to make some kind of difference!  Post treatment has been rough for me.  I have had some war going on with the immune system trying to right itself. I don't know what tomorrow might bring but I will be here! Thought I was gone but I am Back! With God's blessings! I have the strength to keep fighting the battle! Remember to help yourself: drink pure water, eat wholesome foods and don't trust anything!

[Scoutdoy]

Kim....are you undetected even though you stopped short of the duration? I certainly hope so, but I didn't see a viral count on your profile


Scout