Personal Reflections on My Hepatitis C - (use for other posts, please, too)

[TnHepGuy]

I have been reflecting on the ways in which hepatitis C has been important in my life. Over time I have come to see it as a blessing for me. It has been a path for me back to God. Having hepatitis C has helped in showing me what humility means - I now step back and reflect on how I am not the most important thing in my own world or in existence in general. Among all of my self-directed life and behavior, there was always a small ‘voice’ inside me calling, asking and leading me back to church and to God. I refused to listen and actively turned away from that voice – until I was quiet and still enough in my heart to listen. Hepatitis C has been the biggest part of that ‘listening’ for me. No longer do I view it as an evil foisted upon me. Instead, I see it as a gift from God - one put in my life to bring me to Him. There to show me the value of humility, repentance and selflessness – things that had meant so little to me before. Every day I struggle with the physical and emotional aspects of having hepatitis C. I struggle with humility, repentance, selflessness, understanding and God every day, too. But these are important struggles and ones whose value is beyond my knowing. Blessings come in ways that I may not ask for, want or am even able to see. Hopefully when I do recognize them I will be humble enough to accept and be thankful for them. While I most certainly do continue to complain, cry, moan, and truly hurt from having hepatitis, I do try and keep the ’bigger picture’ in focus – that hepatitis C has been a gift to me from God. A blesssing meant to lead me to Him.

[CARUU]

This was beautifully put. I feel much the same way.  Hepc has caused me to slow down and really reflect on the lessons of the universe.  Isn't it awesome that we can turn a difficult time in our lives into something positive.  Thanks for sharing your perspective and words of encouragement.

[Tallblonde]

What a powerful testimony!  Thank you for sharing it with all of us.    I, too, have felt that a wonderful blessing lurks beneath this unexpected predicament I find myself in. My spiritual/religious life was important to me prior to my diagnosis, but it certainly has deepened since then.  The hard part of Christianity is the surrendering of one's will ("thine will -- not mine -- be done").  I think HCV helps some of us more stubborn folks figure out what it really means to surrender your will.

I recently came across another interesting personal statement related to HCV.  It's not as good as yours, but it's poignant, nonetheless:

"When opportunity knocks on your door, it is not always a friendly or welcome sound.  Sometimes the opportunity is hidden in the sound (in the very concerning and frightening sound) of a doctor telling you that you have a serious, perhaps life-threatening illness.  There is a positive outcome and there are ways to make these words a positive life experience."

Susan

[DonL]

I have not been able to see my Hep C as a blessing, but I have seen tx as one. It has enabled me to stop and look at myself and my family, values, goals, etc. in a deeper way then I have done in a long time. I have a spiritual side, but not a religious one, so I do not express myself as you would, TnHepGuy, but I understand your experience and support it.  Thanks.

[lookin-up]

Well said!  He works all things together for our good.  It's the hard things that draw us nearer to God - with faith & a positive attitude, we can have joy and new mercies every morning!!  I  find myself thanking Him for the good AND the bad, because He can use it all for His glory. Thankfully, God IS in control, cuz I'm pretty good at messing things up on my own.

There's much to be said about helping others - and I've gotta say - I am SOOOO thankful for so many people's knowledge, support, humor, etc., here on this site - altho I don't write much (unless I can contribute something), I'm here every day and I concider you all a gift.  

Thanks from my whole heart (....ok...my liver too)

In His Grip & lookin' up!

[Sambone Martian Ambassador To the moon]

that was very well said. I really enjoyed reading your post. I have to admit that being diagnosed with a fatal disease is one of the harder things to thank God for that I have come across. But thank him I do. Without the hep-c I would have never met all of y'all on this board and I would be a poorer man if I had not. It also has brought me much closer to God due to the fact that I knew that I was getting sicker and sicker all of the time, this made me realize that seeing God up close and personal was allot closer than I realized. after this realization I began to make sure that I was ready to go.
  Another thing that this thing has given me is that having a fatal disease makes all those little anoyances that used to drive me up the wall seem very inconsequential. I just don't seem to be able to get really mad at anyone anymore. It just aint worth the chance that I could die before I made up with them.
   For along time I used to get really angry with healthcare professionals that minimized my pain or tryed to just shrug off my symptoms. It stiil does bother me when one says something like"well it might be hep-c and it might not". however now Ilook over it because I realize that they are in A learning curve with this thing and that they really do not know allot about it yet. The one that really gets me is " well somethingelse will probably kill you first". There are now three times as many people that die each year from hep-c than die from hiv.
   finally i believe that God talks through people and I hear allot from everyone here, yes you too space coast dude.  
                                         Sambone

[jonihs]

All my life I have heard that God would leave things at my door,and I assumed they would be good things. Little did I know, the bigger the struggele,it is also the greatest blessing. I've learned that it's the very things that get us to turn to God, that make us stronger in our faith.
                        Joni

[Tallblonde]

I think you make a lot of excellent points, but I'd like suggest you think of this disease as "potentially fatal," rather than as "a fatal disease."  I don't expect to die any time soon from HCV.  It's a possibility, of course, but not a certainty.  I'm also afraid that a first time visitor to the forum might get freaked out to read "fatal disease."  

Susan

[DebbieDo]

Nice to see you here, Happy New Year to you.......I have been wondering how you are doing >>>Sweetie.......I'm doing Ok.....did #3 last night. The procedure was easier last night, i think i will be a pro next week.......  :) I hope you are feeling OK.....GOD BLESS EVERYONE FOR SHARING  :)
        Deb

[Sambone Martian Ambassador To the moon]

yes you are right it is deffinately not a death sentence. But it is terminal and if we continue to drink alcohol or don't eat right it very well could get us.  If I sounded harsh i apologize and I promise I will be more careful and thoughtful when I post from now on. Thanks for pointing this out to me, its just that sometimes I forget that not everyone looks at reality as easily as I do and again I am sorry.
                             Sam

[jonihs]

Been not  feeling not so hot and haven't been on for a few days. It seems like the farther I get from my injection(fri) the sicker I get. Sat,SUN,MON are not too bad, but this week it's
been all bad. Hope that means I'm killing alot of kritters. How are you doing? Hope things well and stay that way. Nice of you to ask about me. I've been wondering about you to!!!
                 Joni

[Tallblonde]

Hey, no need to apologize.  I just hope you haven't resigned yourself to losing the battle with this disease.  I don't know the details of your case -- maybe its worse than I realize.  Even then, it's important to be optimistic.  But, if you've put your faith in God, you'll be okay -- regardless of the outcome with the HCV.  That's what's most important, afterall.

Goodnight,

Susan

[gr8faith]

Thanks so much for these comments and thoughts.  Such a blessing to read.  I was really freaked out when I first learned of my Hep C but must admit, it is only through God and His grace, mercy and love that I know this expererince with Hep C will bless my life.  Blessings so far have included finding this site and all of you :)

As this new year has begun I have chosen to believe that God's plan, not my plan, will ultimately bring the healing, comfort and joy He intends for me.  My experiences have taught me that it is only through surrender and complete submission to His will that I will have the peace needed for each day.  For me, it is going through the darkness and shadows of pain and suffering that I am able to experience the light and joy.  I guess if I never have pain I wouldn't know how to feel joy and peace.  

One of the things I like most about this forum is how everyone looks ahead to the future and doesn't dwell on the past.  I have spent many years learning to do just that.  I know how I got this dragon, 26 years ago, shooting drugs in Miami as a 16 year old runaway.  But I have been blessed for the past 21 years, happily married with three beautiful children, good job, wonderful church family, close freinds and close family.  I am not the person I was, and yet I am.  I cannot change my course but thank God He is the driver and I am the co-pilot.  After years of thinking I was in control, it is so nice to know that His power is really in control.

I will be starting tx in the spring (hopefully) and know I will get support and understanding from this new "home" I have found in all of you.

God bless

[cindee]

I posted a message to you in either hep songs, or heppershangout. It would be nice to set aside a nite to join in some "real time" chat. But like I said before this forum is my 1st home and always will be. much love to all, Cindee

[Indiana]

Minimizing this disease is not a great plan here, This isn't "potentially" fatal disease. It WILL kill us....unless something else kills us first. It only a matter of time. As this horrible disease continuse to progress it slowly eats the filter for all the toxins in our body. We just get sicker and sicker. It's a slow progression....but HCV NEVER sleeps. 24/7....it just keeps on marchin on. Maybe some folks feel lucky. like the guy that gets so sick that he can hardly move anymore...and dies of a heart attck.....whats the cause of death?....heart attack.  but why?....he had SO many problems caused by HCV he couldn't move. Or the person that has so many arthritis problems causeds by Hcv that they fall and die....Cause of death?....they won't say HCV. This disease is the leading cause of liver transplants in the USA. I think it causes many more deaths than are actually attributed to it. It should not be minimalized. This is some serious stuff we're dealing with. Anyone who chooses to ignore that is just foolish. If you know that you have this disease you need to do something about it NOW. Waiting is NOT a great plan.
<<<<Just a personal opinion from the sidelines here folks>>>>

[eyehavegr8life]

I'm so glad I read your post. I too look at the knowledge of having HCV as a blessing, I posted earlier, that I had unknown reasons for depression, body aches etc..and with finding this forum, I now have some concrete answers for the physical and emotional distress I was having. Knowledge is power, and now I have the strength to go on and fight this dragon! I too, dont sweat the small stuff anymore! I'm hoping for the day I can be able to answer questions here more often than I ask them...this will be the reward for me!  My best to you, Annette

[Steve']

There is no doubt having HCV has changed my life, for instance I am eating much more healthy nowadays ....
Question Please ... In my Bx score it says <b>Scheuers score 3+1+2=6</b> .... now I understand some numbers mean inflamation (inflammation) & some mean scarring but does anyone know which ones mean what..
I'd appreciate any advice/help .... thanks fellow heppers .. I just found this below on the net, I copy pasted it in..... very interesting its about our chances after Tx ... good news really

<b>Dr. Dieterich is Vice Chair and Chief Medical Officer Department of Medicine at The Mount Sinai Medical Center and an attending physician at New York University Tisch Hospital

"The virus does not return after being cured, period. If the PCR is negative 6 months after stopping therapy the chances are over 98%, if negative at a year 99.99%. Any recurrence after that time is because the individual performed another risky behavior and got infected again! You should not be sharing needles under any circumstances with anybody, cured or not! This represents a true cure and the liver goes back to normal, just like you were never infected. However that does not give you license to do risky behaviors! Stay safe!"</b>

[Eyedeas]

I couldn't have said it much better.  With the RA symtoms I hurt somewhere almost every time I move.  It's real easy then to decide not to move at all.  That's what I was doing the last couple of months and so no treadmill and aa lot of bad TV.  This is not a goods thing for a guy who's had 2 heart attacks, and what would the cause of death be, Heart Attack!  I'm back on the treadmill again and can feel the difference.  I am 100% sure that as far as death certificates go the saying is true,  Most of us will die with Hep C rather than from it.  I am just as sure that probably 80% (my own guess as to percentage) will die at least indirectly "because" of Hep C!

How many car accidents happen because someone with HCV (diagnosed or not) nods off while driving and kills themselves or someone else.  I won't even guess at depression related problems aggravated by HCV.  HCV related cancer deaths will list cancer as the cause.  That's why I never hide what I've got.  I will tell/educate anyone I can about this disease.  I write my congressmen.  I tell anyone I think can help spread the awareness and accelerate a cure.

kIM

[Tallblonde]

I'm totally confused and would appreciate some further enlightment.   It sounds like you're saying that HCV, untreated, will ultimately lead to death in every single case.  Is that true?  I'm under the impression from my two GI's that only 20 percent of HCV patients actually progress to cirrohsis.  What happens to the other 80%?  For that matter, what happens to the non-responders?  Are you saying that there's no hope for any of them?

Susan

[Tallblonde]

The above post was meant for Indiana.  Sorry.

Susan

[GI.PA]

The statistics are very clear and well-accepted.  

About 20% of patient with Hep will get cirrhosis, about 20% of those will go on to liver failure or liver cancer.  

The remaining 80% will die of some non-liver related (non Hep C) related illness.

GI.PA

[Tallblonde]

Amen.  Thanks for clearing that up.  I feel better knowing that a fatal outcome isn't the case for the vast majority of HCV patients.

Susan

[GwithHepC]

G.I. PA:

I am curious about the statistics.  Do the remaining 80% die of something else because the "something else" caused death sooner than the hepatitis c?  In other words, would the hepatitis c eventually have caused death given enough time?  I am Stage and Grade 1-2 infected as an infant from a blood transfusion; I am waiting for now to treat.  My reason for waiting is I understand people infected as children tend to do relatively well, women in general do better than men, I have some autoimmune concerns (raynauds) that my GI told me can get significantly worse with treatment, and I have a history of depression.  Now given that I had this (in all likely hood) since birth (37 years), and I have Stage 1-2 on biopsy, will I almost certainly have cirrhosis in another 37 years, or is there a possibility I will never develop cirrhosis even if I live to 100? (I realize you can't answer the preceding question)  Is the 80/20 statistic based on a specific age when infected and a set life expectancy?  Do you think the extrahepatic manifestations of the virus are not taken into consideration by the medical community when assessing the true impact of the virus on the quality of life and longevity of those infected; that the litmus test for the impact of the virus is based on degree of measurable liver damage only?  

G

PS:  Thank you for the time you devote to answering questions on this board!!

[willing]

Susan, it's also worth bearing in mind that there's a lot of variability behind the overall 20% progress-to-cirrhosis average. In particular, age at infection  significantly affects the rate of progression of fibrosis (<a href="http://www.sciencedirect.com/science?_ob=MiamiCaptionURL&_method=retrieve&_udi=B6W7C-42Y7FCR-F&_image=fig2&_ba=5&_coverDate=05%2F31%2F2001&_alid=140153199&_rdoc=1&_fmt=full&_orig=search&_cdi=6623&_qd=1&view=c&_acct=C000000152&_version=1&_urlVersion=0&_userid=4421&md5=0c0dbc1af728359a6bdd325e36ae1462">see</a>,  this is a good <a href="http://www3.interscience.wiley.com/cgi-bin/abstract/106597949/ABSTRACT">review</a>, but unfortunately since wiley took over publishing hepatology this year, the nih consensus papers are no longer free-access).

GWithHepc: here's a recently published <a href="http://www3.interscience.wiley.com/cgi-bin/abstract/106599416/ABSTRACT">35-year follow up</a> of patient infected at birth. Overall, it looks quite benign. This agrees with the study above: the sooner in life you got it, the slower your rate of fibrosis progression.

[GwithHepC]

Thank you very much for the link!

[Tallblonde]

Thanks Willing.  I read the summary and I may indeed fall into one of the categories where progression can be more rapid: immunocompromised patients.  My two GI's both think that I simply have run-of-the-mill HCV, but I'm not entirely convinced.  I've tested high for cryoglubluins, anti-smooth muscle antibodies and anticardiolipin antibodies (which are known to cause miscarriages -- I've had five).  I guess the biopsy three years from now (if I postpone treatment until then) will tell the story.

Susan

[Indiana]

What is "run of the mill" HCV? Thats a new one on me.

[GI.PA]

"Do the remaining 80% die of something else because the "something else" caused death sooner than the hepatitis c? In other words, would the hepatitis c eventually have caused death given enough time"

Yes..I think that given enough time, Hep C will cause cirrhosis/liver failure in every individual.  It may take 80-100 years in some individuals.  Because most get infected in their 20-40's, most simply dont live long enough to have the liver complications.

For reasons that are unclear, most infected at birth seem to do quite well long term.  I would agree with serial biopsies over time and treatment if appropriate.

Ah..the extrahepatic question.  Many of ya'll know my routine...
Extrahepatic manifications of hep C (not include cryoglobulima..ask your rheum), are very controversial.  If you take 100 people with Hep C and 100 age and psych-matched people without Hep C, you will find equal rates of depression, joint pains, aches, other complaints.  Now those with advanced liver disease (end stage cirrhosis/liver failure), this is a no brainer..they have real stuff from their liver.  Here is the kicker, statistically, even if you treat the virus successfully, the rates of the above, dont seem to change post SVR.  I see the effects, I respect the effects, but I would absolutely not base my reason to treat/not treat on the "extrahepatic" effects.  They are likely to worsen with treatment, and unlikely to improve after treatment.  

To top it off, no one ever "died" from the extrahepatic effects (hep c fatigue, hep c joint pains, hep c depression)..people die from liver cancer and liver failure.  I base 99% of my decision to reconmend treatment on the liver biopsy/genotype/motivation of the patient.  Unfortunately we just dont know enough about the cause/effect of Hep C and the extra-liver effects.

Stepping off the soapbox now..(bracing for the onslot of comments saying "I was treated..I feel so much better now!)...Just show me the data...

GI.PA

[GwithHepC]

Thank you for your reply.  I guess only time and research will tell for sure regarding the extrahepatic issue.

G

[Tallblonde]

By "run-of-the-mill" (my GI's words, not mine), he meant that he didn't think I had HCV with co-exisiting autoimmune hepatitis, or HCV with extrahepatic autoimmune features.

Susan

[cuteus]

not to mention accidents that were actually caused by riba not road rage!!!