Hep C Discussion Forum

Harvoninme · Senior Member

RE: HOW WE GOT HERE; MY THOUGHTS ON HEP-C: THE GUILT AND THE IRONY

Matt Chris · Guru

RudiRoo wrote:
The more we suffer, the more we learn to give, from our kindness, and to reach out, in our own need. The giving and receiving form the balance of love.

This is a great post Roo, and its something I personally had to learn. The words to me are "Compassion" and "Empathy" the showing of empathy for the human condition sometimes has to be experienced before we really understand how important it is, and how we must show it.

When we are young, strong and invincible stupid some of us show no compassion for the sick ones unless they are children or disabled. As we age and realize our own mortality we think differently or at least most of us do. Which is a lesson that we all need, overlooking the faults of others is a merciful thing we learn, but learning not to assign blame is just as important because looking back and judging and digging up old bones does no good for anyones future.

Its what we are doing now that counts, and what we learned from our past helps to shape our future. Keeping it positive and looking for the best in each person and each circumstance will return to us personally 10 fold in countless ways.

matt

Tig · Admin

Hey Roo,

I liked that, a lot! +1

Tig

justvlm · Veteran Member

Thank you Roo. It is rare that I am at a loss for words.

Gator Man · Senior Member

What a great post RudiRoo. Everyone on this forum who may be seeking support and information, but gives something of themselves in return has earned our respect. How we got HCV just doesn't matter.

RudiRoo · Senior Member

Hi Pauliep,

What a jumpy nerve you've struck! It's one that lies close to my heart.

My mom died of lung cancer last spring. A long time smoker she blamed herself for her suffering and could not give her poor self a bit of credit for having quit 15 years earlier, or all the healthy changes she had made since.

Some of the medical folk couldn't find it in their hearts to be kind to some one with a "self inflicted" disease. As though they had never eaten a jelly donut on a day their jeans were far too tight. Or had another glass of wine, when two or five should've been the limit. As though blame could somehow cancel pain.
It cannot.

That job belongs to kindness. Kindness to ourselves and to others is the most potent healer I've ever encountered. When I frantically begged the respiratory therapist to help my mom breathe, she showed me her powerful kindness. She worked tirelessly, with a feverish attention to my mom's every breath. Although her own mom was sick in a nursing home, and she had to go to help her after working at the hospital, she stayed and gave. And gave. Her work did ease my mom's suffering, but my mom was so weak, all she could do was show her gratitude in her eyes. They were like a brown-eyed puppies, filled with relief.
It was enough.

We suffer, and rightly look for relief. Sometimes that comfort comes at a price we later learn is too high. For some, it's at the end of a needle, for others, the beginning of a bag of Snicker's. The consequences are different. The learning is the same.

The more we suffer, the more we learn to give, from our kindness, and to reach out, in our own need.

The giving and receiving form the balance of love.

Everybeing, mouse, frog, kitty, gator, angel and roo, too, needs and deserves that love.

Yep, even the people who are raking in the big money, selling the drugs that will heal us. For all we know, that money may well be the pointy end of their needle.

As for everybeing, I am sick with the side effects from my treatment, a fact that has not gone unnoticed by my Kitties, Max and Sam who have forsaken their usual gecko hunt to snuggle up to me and place the occasional reassuring paw on my arm. It never matters to them why I am sick, they love me just the same.

(they still can't work the can opener) : ) Roo

-- Edited by RudiRoo on Friday 21st of November 2014 06:55:47 PM

Angel67 · Senior Member

Miss B wrote:
Angel,
I hear you! One of the great things about this forum is that we can vent & everyone here understands what you are going through. I think we have all had those feelings about how having HCV weighs heavily on our lives. If I dwell on those thoughts, they seem to gain momentum & grow larger. Sometimes, just going for a walk & making a mental list of the things that are pretty great in my life can stop that. Try to keep in mind that there is a cure & you WILL get it eventually. Hang in there.

-- Edited by Miss B on Friday 21st of November 2014 02:37:41 PM

Your positive words are much appreciated.

Miss B · Senior Member

Angel,

I hear you! One of the great things about this forum is that we can vent & everyone here understands what you are going through. I think we have all had those feelings about how having HCV weighs heavily on our lives. If I dwell on those thoughts, they seem to gain momentum & grow larger. Sometimes, just going for a walk & making a mental list of the things that are pretty great in my life can stop that. Try to keep in mind that there is a cure & you WILL get it eventually. Hang in there.

-- Edited by Miss B on Friday 21st of November 2014 02:37:41 PM

Angel67 · Senior Member

It's easier to be 100% honest on here as there are there are zero consequences for telling the truth or having a little rant! Everyday a stranger asks me (shop assistants and the like) "How are you"? Of course we can't tell them the truth so we smile and pretend to be okay, whatever the situation. When I think back at all the times I have had to do this and the horrible things that have been going on, it makes me wonder about all the other people out there having terrible times, yet painting on a smile, but really being in utter despair. I have come to the conclusion that life is not for the faint hearted! So much crap gets chucked at us...it's a never ending cycle that seems to get worse as we age. How we deal with it all is another matter altogether, and in my day to day life you would never guess anything was wrong with me. So maybe the odd vent of anguish, an tinge of the pity party and a splash of morbidity is okay from time to time...it's easier to reveal those things on here than at the local supermarket or at most of my relatives homes. Maybe this can even serve as a safety valve...let a little steam off before one's head explodes....publicly! Personally I have always been too honest for my own good...I can be honest here, but in everyday life I now have to censor myself, as I know most people wouldn't be so understanding about the virus HCV.

Josh Haynie · Senior Member

:) edited diatribe

-- Edited by Josh Haynie on Friday 21st of November 2014 05:43:22 AM

Cinnamon Girl · Guru

Hi Vanessa, I`m pleased you`re feeling more optimistic now even with the stresses you`re going through.

Having Hep C isn`t an easy thing for any of us to live with or come to terms with and it`s quite normal to go through feelings of depression and negativity with any chronic illness. In fact I think it would be rather strange if we didn`t feel like that at times! Being able to talk about it here helps to put things into perspective and makes us realise we`re not alone with this, and that alone can lift your mood.

I hope the meeting with your new doctor goes well tomorrow, and I expect that once that`s over you`ll feel that you`re moving forwards at last.

Best of luck! smile

Ps- I love your little frog!

justvlm · Veteran Member

Thanks Jill,

I was feeling bad about seeming so negative about this HCV I been dragging around for so long. It wasn't my intention. In truth I took about 5 years off because I became so obsessive about HCV that I didn't see any joy or hope.

I have returned to fight this disease and feeling more positive. I am just a little stressed over job changing issues and meeting the new hept doctor tomorrow and that has my mood swinging from near to far.

Cinnamon Girl · Guru

Thanks for sharing your thoughts and concerns with us, Paul and also Angel, these are not easy issues to talk about and I`m glad that you both feel free to talk about your stories and feelings here.

Having this disease can feel quite socially isolating at times and often people with Hep C don`t feel able to talk about it with family and friends, partly because of the stigma and misunderstandings that surround it, and also because of worries about our future health and concerns about the risk of passing it on, for example. A forum like this provides a safe place where we should be able to discuss these things with others who understand and who are not going to be judgemental.

I had to go through a similar process as regards coming to terms with mistakes I made in my youth and getting myself into a situation where I became infected, but even though for some of us it was `self inflicted`, to endlessly carry a burden of guilt doesn`t serve any purpose. We`re all human and sometimes people do stupid things, and in the end you have to learn to let it go and focus on the whole picture.

I`m sorry you suffer from OCD, Angel, that must be very difficult for you in so many ways, and the current situation with tx options over here is very frustrating for so many. But I agree with Isiscat that it`s a lot healthier for you, for us all, to focus on the positive things in our lives and the small joys that living brings us every day. Try to keep your chin up, but if you want to have a rant every now and then, well do feel free...it can be very therapeutic! smile

Groupergetter · Guru

Angel67 don't be so hard on yourself. If we live in the past if affects the present. Many, if not most here have experienced at least some of your fears and frustrations. Every day is new, and presents new opportunities. Be well.

Angel67 · Senior Member

Isis,it is out of proportion...I have OCD and when things get in my head they just go around and around till I get dizzy...it's so boring! I think also I see reminders of this condition everywhere I look ,whereas they went unnoticed before. You're damned right about cirrhosis...I am witnessing this in my sisters boyfriend . He is a drunk, doesn't have HCV, but has been having problems for sometime. The hospital he was at were utterly useless and they insisted he had nothing wrong with him. I was told of his symptoms( spider angioma, swollen abdomen yet skinny everywhere else, unstoppable bleeding and confused states), when I heard all this I urged him to change his hospital and go to my unit. This he did and as soon as the doctor saw him he said " I can tell you have cirrhosis". They did a Fibroscan test on him and the result was horrifying...69.3! It doesn't go much higher than that and I think he will be looking at a transplant. When I see him I feel quite lucky I am nowhere near that stage of damage, but I do worry about the chance that this is what lays ahead...it's not a nice thought. I appreciate the small talk you gave to me...positive,positive,positive....feeling better already!

Isiscat2011 · Guru

Angel67 wrote:
What difference has it made to me knowing? Well I am living in fear, I don't think I'm going to get old and I'm scared to cook for people and paranoid about shaving etc. I wake up thinking about this, go to sleep thinking about this and dream about dying...I wish I didn't know. The only treatment on offer over here is ****( though it does have a 65% strike rate in type 3's like me). I can't see all these wonder drugs being made available any time soon...NHS will want you to have liver failure before giving you the good stuff( then you can wait on the transplant list)! 28 years or so I have had this and not known about it...okay, I feel fatigue the whole time, but can live with that, but now, all of a sudden I'm ill and potentially dying, when I wasn't two months ago! I have learned much from this site, but I often come away feeling really negative...it's like there is so much misery and fear underneath our masks of humour...I joke about my condition ,but underneath the laughing is fear. I read so much about Gilead and their wonder drugs, and I do wish people the best of luck when they get the drugs and get cured....but it's like being penniless and reading about lottery winners, again and again...and most of us ain't going to be winning that lottery.

I am truly sorry to hear that you are living with so much fear. I hope you won't take this the wrong way but perhaps your fear level is a bit out of proportion to your actual risk given your specific circumstances--otherwise good health with moderate liver damage--you are far from dying of HCV in reality. You are right that reading about the troubles of others here can be difficult but I disagree that there is so much misery and fear beneath everyone's facades of good will and humor. I believe that people can have serious problems and still feel gratitude and joy much of the time. We all have our moments of despair as well as happiness. That's just life, right?

Most patients who are being treated now in the US are in the sickest HCV population but I can assure you that having cirrhosis is not at all like winning the lottery; it is more like losing the lottery of HCV. Try to be thankful that you are not among the sickest and if you take good care of yourself there is every likelihood you never will be. Kind of a glass half-full or half empty situation and we can choose how we want to view it. Be well. Things may turn out better than you ever imagined.

Angel67 · Senior Member

The stigma only helps our tight fisted governments, as there is little public support for HCV sufferers plight. Unfortunately most of the famous people that have been open about their own battle with the illness have been narcotics abusers....I can hear people saying "it serves them right". Personally,taking ownership of my past bad behaviour has been a valuable thing in curing myself of addiction...admitting to it, taking responsibility for things I did has been....character forming! Breaking myself down, then putting myself back together and being a man instead of a boy has been a difficult part of this process. In a way I feel many people are too polite to say,"well you did it to yourself"! Rather like when a morbidly obese person enters the room and we avoid the subject of food! But ultimately I acted like a fool and did bring this virus to myself & as usual, it's the people around me that are suffering...because of me. To be fair on myself, my bad ways were mended a lifetime ago...I couldn't believe I had this virus...I didn't want to be tested and actually wish I hadn't been. These ****ing doctors insist upon this stuff, finding out and then leave you in limbo. What difference has it made to me knowing? Well I am living in fear, I don't think I'm going to get old and I'm scared to cook for people and paranoid about shaving etc. I wake up thinking about this, go to sleep thinking about this and dream about dying...I wish I didn't know. The only treatment on offer over here is ****( though it does have a 65% strike rate in type 3's like me). I can't see all these wonder drugs being made available any time soon...NHS will want you to have liver failure before giving you the good stuff( then you can wait on the transplant list)! 28 years or so I have had this and not known about it...okay, I feel fatigue the whole time, but can live with that, but now, all of a sudden I'm ill and potentially dying, when I wasn't two months ago! I have learned much from this site, but I often come away feeling really negative...it's like there is so much misery and fear underneath our masks of humour...I joke about my condition ,but underneath the laughing is fear. I read so much about Gilead and their wonder drugs, and I do wish people the best of luck when they get the drugs and get cured....but it's like being penniless and reading about lottery winners, again and again...and most of us ain't going to be winning that lottery.

Isiscat2011 · Guru

IMO, we need to recognize that HCV tx is not simply about us as individuals. HCV and its tx are highly controversial and political topics world wide. HCV carries the same type of stigma as HIV. This stigma will continue to create social, political, legal, and treatment barriers as it did, and in many cases continues to do, in the HIV infected population.

HCV patients represent the face of HCV here or anywhere else we speak in public about it. I can assure you that taking the position that "I deserve what I got" will not help HCV patients get the tx they need before they become cirrhotic. Again, JMO.

justvlm · Veteran Member

I can't express how I felt almost exactly 7 years ago when my PCP called with this news. He actually didn't give me much information, but it didn't take long for me to become quite depressed. In retrospect I most likely got this from air injection vac. in the Air Force in 1980. It was the stigma of drug use, etc that made this an unspoken anguish in my life. I am sure there are advocates out there, but I am not that personality and I know how my admission would have been seen by work and family.

I can hardly wait to be rid of this chain around my neck and disease out of my body. It has been a long time coming with lots of nightmares for folks I've kept up with on other forums and what they went through sometimes because they were out of time. I,hopefully, have been spared with some time. I will know more starting Friday when I begin this journey again with a new hepatologist.

pauliep · Member

I do respect your point of view, and I thank you for respecting mine. I agree 100% that big pharma is in it for the huge profit potential; my point was that 25 years ago there was significantly less incentive. With all of the hep-C carriers out there today, 170,000,000, maybe more who don't yet know, there is tremendous incentive and competition to find cures. That is just the reality of capitalism. There are real cures now whereas 15 years ago there was nothing but interferon and ribavirin. And to be fair, some people were treated successfully with them. I guess I am still in the dark myself with regard to how people get hep-C. I only know personally a handful of hep-C sufferers, 5 to be exact; 4 were drug users and 1 got it from a blood transfusion during childbirth. I shared my story only in the hope that others might do the same. It makes no difference to me how people get the diseases that they have. I have just as much compassion for a lung cancer patient who smoked as for one that didn't. Unfortunately, insurance companies may not be as compassionate. I am curious as to how people get this disease now that I have proven my own ignorance. I apologize to anyone who is offended by my lack of knowledge on that subject.

Angel67 · Senior Member

This site has educated me about people and HCV. I got bastard virus this by sharing a "cooking spoon"....I didn't think a risk existed at all( HCV wasn't even named back then either). But what has surprised me is the amount of "innocent" victims...I learned of their existence from this site. So many of you have been given this illness via the medical profession( tainted blood etc), that same organisation that denies you decent treatment. Although nearly everyone has been kind on this site( about IV drug users and moral responsibility) I still think you people who didn't bring it upon yourself are more deserving than me. I did this to myself and if it wasn't HCV it couldn't have been HIV or HBV....or even an OD! I am responsible and many of you are victims of getting a blood transfusion.

Fireman Rob · Senior Member

Hi Paul,

How we got here is definitely an interesting topic and I belive this experience is different for alot of us. For myself, the last thing on my mind 10 years ago when getting a commercial tattoo was Hep C. I didn't even know what Hep C was when I was 22 or that I could get it from a tattoo. I consider myself to be very lucky in the fact I was diagnosed by the Red Cross in March and have been able to treat with Sovaldi/Olysio a few short weeks ago, hopefully increasing my chances of SVR after carrying the disease for 10 years.

However, HCV has changed my life forever. I'm one of those people that has never even had a speeding ticket and have no associations to drug abuse. I've been a perfectionist in nature my whole life and career so this disease has been a nightmare for me and my family. Like you, the fear of infecting my wife and two little girls is frightening! Furthermore, HCV has placed a great deal of uncertainty on my career. As a First Responder, I find myself faced with challenges that never, ever crossed my mind before diagnosis and I fear my career is at risk if I relapse.

Healthwise, I have had symptoms of HCV (just didn't know what was causing them) and I'm hoping to move past that by achieving SVR soon. I really appreciate your perspective and think others can learn from our experiences. My point is basically, none of us deserve this disease and you are correct when you indicate that now is the time for a cure. The critical mass of HCV infected patients in the US has brought some wonderful medications to our door step but unfortunately there are some hurdles to obtain them. All we can do is hope that we do in fact have time on our side to get those little gold pills in our hands, and that they will free us all from this never ending nightmare. My hat goes off to those of you that have carried this dark passenger for so many years and decades in some instances. I always think about you guys that are cirrhotic and are awaiting tx.

It breaks my heart to know there are so many others going through the same challenges I'm currently going through and in many cases have for a much longer time. Thanks for sharing your perspective, Paul.

Hang in there friends,

-Rob

-- Edited by Fireman Rob on Wednesday 19th of November 2014 06:41:17 PM

Isiscat2011 · Guru

pauliep wrote:
....big pharma took huge risks in developing drugs for the treatment of a couple of hundred thousand mostly former drug users.

With all due respect big pharma took calculated risks that they would make billions of dollars in profits by selling HCV tx not to "a couple hundred thousand" but to 170 million HCV infected patients. This was entirely a financial decision and they don't care who the patients are as long as they can extract huge sums from payers.

I am truly glad that you are healthy and asymptomatic but that is not the case for many HCV patients. I am also happy you have come to terms with your guilt but please do not assume that most HCV patients contracted this disease from drug use or by having close contact with drug users AND that they are now paying for those choices.

That assumption is one of the reasons tx is now so difficult for many to get. It has been perpetuated by the media so it has come to be accepted as fact that most HCV patients contracted the virus via drug use. I'm not at all certain that is even accurate but it sure makes it easier to treat people badly when they are somehow responsible for their own suffering.

I couldn't care less where people got this virus but this type of self loathing/self purging isn't doing HCV patients any good, IMO.

This virus has devastated my family as both my brother and I have it. Neither of us were ever IV drug users, btw. It is difficult for me to watch people make repeated assumptions about how HVC was contracted, whether they deserve what they got, and how all of that should impact treatment. Thanks for listening to my point of view.

Tig · Admin

Thanks for sharing your views Paul! Your post is semi auto biographic in nature and I always enjoy reading someone else's view and position on this disease and how it has affected their life. Some will find several similarities, others not so much. But it's good in my opinion to get your own story and impression out there. It helps a lot to demystify the disease and helps others understand the stigma that has followed it for years. The future does indeed look much brighter than it ever has and it's good to share a positive outlook. Good luck with your own treatment and the improvements sure to follow!

Tig

pauliep · Member

We are all the products of choices made. I assume that most of us contracted hep-C through various methods related to drug use or by close contact with drug users. I used to hide this fact, but have come to terms with it, most particularly with my children and family. I did what I did, and paid the price for that behavior with my own health. What were feelings of guilt; that I could pass this disease on to my wife and kids and put their health in jeopardy and that my own life and health was at risk adding to their burden, have evolved into acceptance and even elation that I survived the indiscretions of my youth at all. At 17 I picked up hepatitis B via intravenous drug use, and after treatment and a positive antigen for the B virus, I was never really concerned about this "non-A, non-B" thing that I still had. At 37 years old I was doing contract work and found myself needing to buy health insurance for myself and my family. A routine blood test and EKG were required as part of the application process. Lo and behold; I had hep-C, and was denied insurance coverage. My very supportive (and quite naïve) internist wrote a letter to the insurance company explaining that I was in all around good health and asymptomatic and that they should ignore this little problem. That didn't work. I continued coverage through COBRA and eventually got coverage through a new employer. That was 1989. I have been fortunate to have excellent health insurance up until now and have been through a variety of doctors who have "monitored" my hep-C. I participated in an early clinical trial of Interferon Ribaviron which had to be terminated early due to numerous negative side effects, and have had a viral load of around 6,000,000 for the duration. I cannot say that I have any symptoms of hep-C, but on the other hand, I have been carrying this disease now for 45 years and don't really know what it is like to be virus free. I am in my second week of treatment with Harvoni, and will have bloodwork done first week in December. Putting this all into perspective, Harvoni, Sovaldi, Olysio, and the variety of other treatments out there right now are curing hep-C sufferers. That's CURING, with very high success rates so far. Yes, these drugs are wickedly expensive; obscenely so. Most of us could not pay out of pocket, so we are at the mercy of insurance companies. But, also, and this is the real point that I want to make; we have reached an important critical mass. It is now economically feasible to put research dollars into treating this disease; all genotypes and from all angles. This was not always so, and big pharma took huge risks in developing drugs for the treatment of a couple of hundred thousand mostly former drug users. That is the incredible irony in my view; our numbers have grown and through the internet and social media our numbers are known and are huge, and so Pfizer, and Merck, and Gilead, and Johnson and Johnson and all of the other big players are now in tremendous competition for our dollars. Our critical mass as a community will force prices for these miracle drugs down over time as new drugs get FDA approval. We have always had (for most of us) time on our sides as this disease is a slow mover. My current gastroenterologist has been telling me for the past 3-4 years to hang in there; numerous very promising treatments are in the pipeline. If you are a new hep-C sufferer don't despair. If you have been denied coverage for treatment, don't despair. If there is currently no treatment for your genotype, don't despair. The future is here. Be gentle to your liver; eat right, minimize alcohol use (better yet, cut it out completely), use aspirin for pain instead of acetominofen, and just stay as all around healthy as you can. Most of all, stay positive. Do your research, and stay informed, but vet any new information with others on this site. There is a wealth of experience with this disease and surely someone here has experienced your particular problem. My wife calls me the worlds biggest pessimist, but I am very optimistic that hep-C is on the wane. So, please, just hang in there! Thanks for listening.

Paul

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