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Hep C Discussion Forum -> General Discussion -> What I've Gained & what I've Lost after all these years with HCV
Post Info TOPIC: What I've Gained & what I've Lost after all these years with HCV
Harvoninme


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RE: What I've Gained & what I've Lost after all these years with HCV
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Good: gained permission to live each moment to the fullest

Bad: had to change my original expectations & goals in life; dealing with loss, fatigue, stigma & fear



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WorriedSo


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Dear Matt,

       WOW yeah=great question! @ this moment-

  1. Good=knowing about having the cirrhosis is helping me to finally

understand what happened to my best-friend. Until, a couple of

weeks ago, there were lots of gray area's for 8 years . 2. Good to

be able to read about what All Y'all have overcome.

   2. Bad=Will always miss my darling BUT-that's not

noticeable ~all~ of the time. The less I feel sorry for myself the more

tangible  the bliss.

    3. Ugly= There is none~! It only looks that way when I misunderstand or

distort the picture. 

                                                                 Thanks for Asking~Angel!

                                                             God Bless You-Always ~Eunice~  

                                                                                                                               

                                                                  



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Eunice r. Nelson
Isiscat2011


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kurt wrote:

  The bad side is they've started to come out with some really good unfiltered beers now.

 LOL  Good one.

 

The good side is that it gave me permission not to work so much.  The bad side is that not working so much means I am gaining a new understanding of the term "living within your means."  

Okay, the worst bad side is not feeling so great much of the time.  no



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
kurt


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 I guess the good side is certainly being rid of this albatross that's been around my neck for twenty years. Also I've become less judgmental of others, accepting that my children and friends have different life paths than me. Lately I've started trying to get back in shape to run a half marathon . That's a ways off though, a long ways off.

 The bad side is they've started to come out with some really good unfiltered beers now.



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61 yo male,genotype 1a for 20 yrs, undetected at 4 wks on sovaldi/olysio
Huey


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The Good is yet to come and the bad is behind me. only challenges lay ahead



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Enavigo3891


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The Good: Knowing since I was very young that I may not be around as long as I should helped me learn early that everyone in this world is fighting their own battle, whether publicly or secretively. To appreciate each moment of time and each person that has come into my life, good or bad. To make the best of my time here. And now, the opportunity to know one day soon what it is like to live without this beast; as it's been with me since day 1, I have no idea what life is like without it.

The Bad: Feeling alone as if there was nobody out there that would ever understand. Going through the ups and downs of treatment and only being able to share those experiences with 3 people in my real world life.

The Ugly:  Being disqualified from the two professions I had dreamed of and living with the $50k in student loan debt I acquired in pursuit of those professions before I knew the ugly the truth. Being subjected to discrimination by my own healthcare providers. Being the silent one in the crowd of people making jokes about HepC and feeling like my world would come crashing down around me if I stepped up and said something.



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 
Karen


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Nice Lizzy!

I really love this post....



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Lizzy


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When a society is confronted with disease, I think cooperation, compassion and love are the key elements that lead to the eradication of disease.  Those of us who have contracted a disease are a part of something bigger - that great learning process that propels us forward, bringing us to cures and methods of prevention.  I may not survive the disease as an individual but it brings me comfort to know that our sufferings are not in vain.

Cooperation requires honesty and a calm, gentle approach.  Compassion requires dropping our prejudices and judgmentalism.  Love drives us towards research, discovery and resolution of problems.



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genotype 1a with a mutation called Q80K polymorphism

have avoided treatment since diagnosis in 2001 with the knowledge that a safe and effective cure would be developed

have no idea how or when I contracted the virus
suziq


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I have gained a knowledge of alternative treatments--for many things-- including my kitties herpes.  I have learned that I am, jn a larger way than I realized. responsible for my health and well being, attitudes and happiness.  I have gained so much knowledge from and respect for people who share my disease and post about it without reservation. 

I don't know that I have lost anything really.  Yes, I lost a dear friend to cancer that could not be treated due to Hep C.  Maybe I have lost some energy, but I've had it most of my life so I don't know. 

My life has been much the same before and after diagnosis taking into account the changes that aging brings.  One of the reasons I finally chose to treat was because I am curious to see if I feel different without Hep C.  And the time seemed right.  I'll let you know about what I may have lost if I reach SVR and find whatever I lost is there waiting for me. 

SuziQ



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Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR
ucbgal


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THE GOOD

to finally take my hcv status seriously when i started sufferring from it 3  and a half years ago and take early retirement to save my life.

to draw inner strength and become empowered w/ stamina & determination.

to finally meet people going through this battle on this forum &  making sense of this horrid disease.

to let go of unhappy negative people who don't think outside the box nor wish to further their personal growth.

THE BAD

to let go of my best friend/ boyfriend of 12 years & set us both free.

to not have my beloved loved ones i lost w/in the past 3 and a half years to support me unconditionally.

THE UGLY

to work with or meet unkind /ignorant people,drs., & nurses due to my HCV status and not treated w/ the dignity & respect i deserve.

 

snady,ucbgal

 



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Cinnamon Girl


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Very interesting questions, Matt.  I suppose my time of living with Hep C has also overlapped with having M.E./C.F.S., as I was diagnosed with them both at the same time, so that makes it a bit more complicated for me to answer.

The good...well it`s quite hard to find anything good to say about having Hep C, but over the years since my diagnosis I`ve been forced to confront and come to terms with the mistakes I made when I was young, and that has led to a better acceptance of myself and others.  I`ve learned to slow down and appreciate the small but important things in life, and to treasure every new day.

Finding this forum was a lifeline for me while I was going through tx, and it`s brought me into contact with so many very courageous and wonderful people over the time I`ve been involved, and that means all of you!  And of course, having the opportunity to go through tx and achieving SVR is something I`ll always be very thankful for.

The bad...well, like most of us I still miss having a glass or two of good wine with friends, but that`s something I adapted to quite easily and rarely think about.  The stigma is something we all have to live with to some degree, unfortunately, but most people I`ve told have been very accepting.  Not everyone has taken it on board though, and it can be very hurtful to be judged on the basis of something stupid you did decades ago.

The ugly...all those years I was disabled and too ill to participate in normal everyday activities. This was attributed to me having M.E., but my health and physical stamina has improved beyond recognition since clearing the Hep C virus two and a half years ago.  It`s wonderful to be so much more active now and I try not to feel bitter about the `wasted` years, just keep moving forward.  I have so much to be grateful for.



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
TeddyTrout


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Well I could write about this all day LOL. I guess I have developed a real sense of compassion and really have become a community service person and volunteering on the front lines at food banks for the down town core area junkies, queers and trans-genders who have HIV and where dyeing of AIDS for about 6 years at the Nine Circles Clinic in Winnipeg.  Co-ordination and developing with others the "Harm Reduction" model now used widely in Canada. Writing and developing The Peers to Professional training manual (training doctors and heath care professionals in all the health  regions in Manitoba Dispelling the myths about HIV/AIDS and Hep-B &C education. (example, did you know that its almost imposable to get HIV by kissing some one with HIV?, It takes about 2 full buckets of saliva to get enough of the virus to become infective. I help develop the strategy in the Free needles and Coke pipes and condoms campaign that is now commonly used at all of the public health clinics in Manitoba. The government funds and supports the Harm Reduction polices and have estimated hey saved 2 million in the first 3 years in health care costs.

When I'm not on treatment or volunteering,  I'm paid to teach/instruct trades related work education, mostly with those less fortunate and under educated core area aboriginals.  

I have also learned to love myself and increase my love for my wonderful wife and my best friend.

The down side was living with stigma, being physically disabled from the permanent side effects of Hep-C and its treatments and excepting that I was sick and like mallani "I have a mild obsession with HepC eradication. This will only ease when all countries have affordable/accessible HIV/ Hep-C medication".



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Don't sweat the small stuff, it will only give you hair loss.
Matt Chris


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Wow such great insight everyone.

Round II 

The Good I've Gained

Compassion can be learned, I have HCV to thank for having learned to be compassionate human being. Finding out one day that you have HCV can be very humbling which leads to learning to show compassion to others and their weaknesses.

The Bad

Losing the great feeling of energy that can propel one to accomplish there goals.

The Ugly

Being self obsorbed on one thing that is all encompassing that cannot be easily figured out.

Matt

 



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
mallani


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That's pretty difficult, as I lived with HepC for over 40 years.

The good: I was aware I had a decreased life expectancy, so I took early retirement and sailed away. We have travelled a lot and enjoyed life.   During treatment my wife and I became closer, and I discovered who were my true friends.  Many of my colleagues are still working, and are rich but miserable.

The ugly: I have become aware of the huge differences in Healthcare offered in different countries, and how money can decide whether you live or die.

The bad: I have a mild obsession with HepC eradication. This will only ease when all countries have affordable/accessible HepC medication.

             The regular blood tests and imaging are a pain. At times, I'm tempted to forget about them, and let it be.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
hrsetrdr


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Matt Chris wrote:
What I've Gained & what I've Lost after all these years with HCV
 

 
 

 Matt, this is a great topic, kind of like conducting a poll but without the set-up that a forum admin would have to do.  Actually, I'm not sure if this forum's software has "poll" capabilities.   Anyway,

The good

I achieved SVR baby!  Sorry, but that was a "biggie" in my world.   I am thankful for this blessing, and am making a serious effort to take care of and improve the condition of this body that God gave me, early on in life.  I ain't gettin' another one, and spare parts are hard to come by.    I have learned much about health matters, and how easily it can slip though your fingers, if you're not diligent.   Perhaps I've become a bit OCD, but I've really become an advocate for healthy behaviors, namely eating healthy, moderation with the fat-sugar-salt consumption, hydration and proper daily exercise.    If  by example I can influence others to adopt healthy behaviors, then that would be a great reward to me.

The bad

Aches and stiffness, anxiety being the "bad", mostly. However,  today's been a good day, so I may have to come back and edit the "bad" section some other time.  I am collecting 'tools' to deal with the muscle pain & stiffness, as well as the anxiety, so I have hopes of constructing strategies  for eradicating the bad.
 Apparently I still have some "brain fog", hence the need to edit this post. 

 

Edited- so as to reflect a coherent response, and not the one I originally provided.



-- Edited by hrsetrdr on Friday 25th of October 2013 10:24:21 PM

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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
Zlikster


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The good: you folks on this lovely forum :)

The bad: uhhh...too much things. Lets just say least bad one is that i dream of eating an all in one pill with  NS3, NS4A, NS4B NS5A, NS5B inhibitors ;)



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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
hepcat60


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The Good:  I have gained a greater appreciation of my wife's dedication and love for me.  She has been wonderful in helping me through this treatment.

The BAD:  I agree with all who miss a Coors Light on occasion.  Living for years with this disorder I have not been as energetic than in the past, but I am hoping that will end soon.  8 more.



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Hep C 1a since probably 1981.  Incivek, riba and interferon-48 weeks.  UND at weeks 2-4-6-8-10-12-16-20-24.  Previously Interferon alone for 6 months non-responder.  SVR 48 weeks 12/11/14
Loopy Lisa


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The Good thing I have gained is: Finding what is wrong as I was beginning to think I had a brain tumour or something haha. Finding support and friendship in corners I least expected it. Finally stopped smoking and taking sugar in coffee. Having friends that aren't scared of a poxy virus and can see past it and see me. Finding out I am much stronger than I thought. Having a husband ad best friend who love me more not less because of Hep.

The Bad: I may have missed my chance to ever have children this is something I have to realistically come to terms with. Feeling so tired sometimes I just want to sleep away the days. I really hate the brain fogs, I become dyselxic sometimes, my brain goes weird and later I look at something I wrote and think ARGHHHHHHHHHHHH. Not knowing the future if I will cure or not. Having a monthly has become a dread, blood grrr! Not sleeping when I have pain in my stomache and digestion, all linked to hep. But I still live, laugh and have fun.

Ugly: Some people will die because of Hep C, I could be one of them!

 

I really just had a good moan then! :D



-- Edited by Loopy Lisa on Friday 25th of October 2013 04:52:06 AM

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Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Karen


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(The Bad and Ugly: The disappointment after the realization that I'm not as "Bulletproof" as I thought I was and wanted to be. I guess this is learning to live life on life's terms, not yours)

LIKE THIS Tig56-""A LOT ""



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Tig


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That's a tough one. There are a number of things that could fit into this but there are two that came to mind first. So they are:

The Good: A better appreciation and respect for my wife of 34 years. I'll spend the rest of my life appreciating and honoring her for the kindness and generosity she has shown me throughout our marriage, but thats nothing compared to what she has shown and given me as I've battled through my HCV diagnosis and treatment. Thank you Honey!

The Bad and Ugly: The disappointment after the realization that I'm not as "Bulletproof" as I thought I was and wanted to be. I guess this is learning to live life on life's terms, not yours...



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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2willy


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I have gained by loosing 50 pounds, regained and lost effects of pretreatment effects of the virus, I have changed life so glass is half full instead of half empty, I have reconnected with my God and A.A., I have gained freedom from marriage and able to see it maybe never was ment to be, I have been given new friends on this forum and also to pass this on to some on treatment now, in all I have regained Bill and I am so ever graitful



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Geno type 1  rib and peg September 2012 , 5 weeks tripple and viral down to < 15 und april Aug 25 finished stay at peg 3 rib and eprex + blood transfussion finished treatment Aug 25 2013
Karen


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Wow..good one Matt. 

Gained-I have had a lot of down time to reflect on my life (the good, bad and ugly) and discovered a lot about myself.  I have learned forgiveness for others and myself.  I have discovered the importance of friendship and never to take it for granted. I have come to accept people"s fears and discomforts.  I have been blessed by the support of strangers and have been shown the goodness in people"s hearts (thank you everyone).  I am continuing to learn that the essence of this experience is about contentment, peace, joy, happiness, awe, love, gratitude and wonderment.

Lost- a cold beer, a glass of wine and a little grappa.  I lost the ability to loosen up enough to dance on a few tables now and then..Ah, the good old days!!!

 



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
HR


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The good- I've invested in the stock market.

The bad but not so bad- no more Coors Light



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
JoAnneh


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The good: I ACHIEVED SVR!
I found this forum for support.
Grew closer to God by studying
The bible as all I could do was sit so I filled
My time with attending bible studies and researching
His Word. This gave me lots of hope and strength.
The bad: I gained an appetite for fattening
Food while on Invicek that has continued,
Therefore I have gained 15 lbs
Using food to comfort me.

Post 6 months I have started feeling great
And will get my body in shape again as I
Want to be strong and enjoy life to the max!



-- Edited by JoAnneh on Thursday 24th of October 2013 01:27:53 PM

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Matt Chris


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What I've Gained & what I've Lost after all these years with HCV
 
Generally most  people gain perspective over time regarding events that happen in their lives. We who have lived with HCV for many years, some of us for up to 40 years and beyond have learned many things about ourselves. We have learned to manage our health, learn our limits and understand the difference between the physical battle and the mental battle. With that as a platform 
 
I would like to solicit yours thoughts about what you have Gained in a positive way from having HCV and what you have Lost because of having HCV.   Or we could day the Good, the Bad & the Ugly    
 
My contribution 
 
The Good I've Gained  - I learned how to buy, prepare and eat good tasting foods that truly have benefits for my health. 
 
The Bad or what I've Lost -  The first thing that came to mind was having a Beer with friends when I go to a Pub with some really good local well made beers. Sound petty I know but just one of life's  little pleasures that I have lost the joy of.
 
Please contribute whatever comes to mind, it does not matter how long you have had hep-C
 
Matt
 
 
 



-- Edited by Matt Chris on Thursday 24th of October 2013 06:21:39 AM



-- Edited by Matt Chris on Thursday 24th of October 2013 06:23:18 AM



-- Edited by Matt Chris on Friday 25th of October 2013 06:03:19 AM

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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
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