My Story of Hepatitis C
Some people like to be on the go. That’s me! I have always led an active lifestyle and would try just about anything. I’ve hiked, ran, walked, and jumped my way through life. I got bit by the travel bug early on and have been checking things off of my bucket list for years. I have eaten fairly healthy and looked forward to reaping the rewards from it.Then I was diagnosed. This is my story of Hepatitis C.
My health bio started when I was a teen. At the age of 18, a laparoscopy revealed that I had abnormalities. The left side of my abdomen looked normal. Surgery revealed that inside, my left kidney, adrenal gland, and ovary were absent, among other things. Sadly, I was told there were no babies to be made by this body.
I was alarmed enough to make diet and lifestyle adjustments while planning a future in nursing. But the seed of betrayal was locked in my thoughts. That seed was nourished by the discovery that my mother was given diethylstilbestrol (DES), while she was pregnant with me. It was a synthetic estrogen and changed my little unborn self by creating a legacy of endocrine problems that would be dealt with throughout my life. I discovered that there was no controlling my body and it’s processes.
I learned hard lessons from that discovery. Grieving became a tool as I faced the loss. My lifestyle would be a fairly healthy one as I protected my hard working kidney. The thought of a young death were all fertilizer to my mind, and I embraced each day with a simple, childlike wonder. Gratitude for the cycles of life, nature, and love were my teachers in the school of hardship. Miraculously, I gave birth to a tiny baby girl when I was 21. The realm of possibility that she brought with her opened my mind to the truth about life: Anything can happen.
Fast forward through my 20’s, 30’s, and 40’s. Early menopause, adrenal exhaustion, and making the best of every day was my pattern. It was a beautiful path. Okay, I was a little philosophical. I read way too much. I exercised like my life depended on it. I rode the hormonal roller coaster and battled fatigue. I sang too loud and too often.
In my late 40’s things changed rapidly. My skin, hair, and nails were like that of an old woman. My heart and sympathetic nervous system went awry. I never had been able to tolerate even the smallest amount of over the counter drugs due to “allergic” responses. Now the doctor prescribed anti-depressants, sleeping pills, beta blockers. I used a lot of vitamin and herbal therapies to boost my lagging energy. You think this sounds dismal, and it does.
But wait. Remember the childlike wonder? The playfulness that I promised myself to embrace? The love of nature and our great planet? These things were the center of my world every single day. There was no time for allowing depression to linger in my garden. I considered hate, anger, and self pity to be weeds and spent much time laboring over their removal from my thoughts.
Little did I know that there was an enormous root system silently growing under my garden. Unseen, and fed by a deadly virus, it creeped and sent out runners in every direction. The taproot was planted in my liver. I had hepatitis c.
At age 50, my heart problems accelerated. Sleepless, fatigued, and losing weight, I found that I could not keep up. I napped constantly, even on my lunch break. I pulled over and slept in my car during an hour drive. I withdrew from fun activities and assumed it was a new phase of life.
In 2010, I rode my bike in over 100 degree heat for several miles. That evening my feet swelled and felt numb. The next day, I couldn’t find clothes to fit except a loose cotton dress. My abdomen looked like I was 5 months pregnant. My dear childhood friend pronounced that I had to call my doctor. She had lost her husband to liver cancer, and we were best friends and roomies. She’s a dear sweet heart, but she’s always been bossy.
The next day, my doctor’s office sent me straight to the hospital for an Magnetic Resonance Imaging (MRI). I sent out a text to my girls (family and best friends). While I lay on the table, the tech handed me a phone and the nurse said I had to stay. Something was very wrong. Denial and sassy mouth took over. I instructed the tech to remove all the IV’s and give me something to sign. I texted my posse again and laughingly said that if the tech could outrun me to my car, she could keep me. When I got to the parking lot, there were my girls. Needless to say, I went back to the hospital.
I finally got tested for Hepatitis C.
Cirrhosis. The next 72 hours was a hazy maze of tests, paracentesis, blood transfusions, and a death sentence. Imagine lying in the bed with granddaughters, sisters, and friends and being told that you are dying from End Stage Liver Disease. Hepatitis C. I didn’t know these doctors. More than that, they didn’t know me! I was numb, kinda crazy actually. Word got out on Facebook. Friends started coming by. My posse screened all but the close inner circle. I was as yellow as a daffodil. But I felt like my petals were crushed, ruined. My spring bloom was too brief. I wasn’t finished with life yet. But the root in my liver had finally accomplished it’s task of wrapping around every last bit of me. I vomited blood. And then I asked for my make up bag.
My story of Hepatitis C is too be continued….
43 thoughts on “My Story of Hepatitis C”
Karen,
I have been reading your blog. I know The Lord has and will use your story to bring blessing to others.
I am reminded of why I was so drawn to your friendship years ago. You are precious!
I’m thankful your health has improved. My prayers for your continued healing and cure. Love you! Janelle
Janelle, I just saw this! Today was a perfect time to find it. You are a sweet friend. I am SO glad you remember me in your prayers. Love YOU, Karen
You are 100% the true inspiration for living with and kicking Hep-C’s ass. I tried to think of a better phrase to be polite but that describes it. You have gone through so much and somehow are so incredibly positive. I don’t know how you did and are doing it. I would have been a wreck.
I’m so insanely happy that you are doing better and I am so thankful for how much you’ve helped me.
What a bright message to wake up to! YOU too are living an extraordinary life. Now you’re part of the strong and beautiful women who are kicking Hep C’s *** club. The school teacher in my can’t say it, but I’m w/ ya. haha! Keep me posted on tx. xo
Thanks so much for sharing your struggles and your insights. Although I am nowhere near as ill as you are, my journey like yours has led to much introspection and spiritual/emotional house cleaning. I am a better kinder person for all of this illness. Hoodathunk!
Hay! I think how ill we are is so subjective. Liver disease and HCV have soooo many variables don’t they? Yeah, I agree that every little struggle has helped me in the process of becoming. haha. Becoming what? Not sure yet, but enjoying the journey.
I’m glad to share it with you. I’ve sure leaned heavily on hcvadvocate. Thank you for all of your work!
xo, Karen
ps i checked out your goodreads. we have a lot in common.
Wow Karen…
You are an amazing woman! The Lord must’ve preserved your life so you can help others with this disease. I knew when I was a RT student that there is a Hepatitis B and because I was a CNA then I had shots for it but before I entered the RT program they required us to get immune against Hepatitis C, they said it was a new thing.
Anyway, your story just touched me, you have incredible great courage. May the Lord bless and keep you…to continue to use you to bless others.
Angela
Hi Karen,
You are such a wonderful person, who decided to help others while running through your own struggle 🙂 I really admire you for that from bottom of my heart.
Miraculous indeed how you gave a birth to a baby girl, even doctors predicted you won’t 🙂 Exactly, anything can happen.
I have no idea about what you have been through, but I know you are definitely a fighter dear 🙂 You don’t need sympathy at all ’cause you are far too strong!
I just wish you to keep getting better and better everyday Karen 🙂 AND wish you more happiness in your life.
Cheers…
Thanks Mayura,
Life is indeed full of miracles. I love to log on and read comments and see that my readers are all miracles too. Those of us who struggle with health issues do sympathize with each other just a bit.
Then we brush ourselves off and live every moment as if it were a gift.
You have been a gift with all of your website advice. lol. You are soo far ahead of me! Thanks for pointing the way.
I really do try and take the advice you offer on your blog so that my readers can have an easy time finding what they are searching for!
What an honor for you to stop by.
I hope your weekend is awesome!
Karen:)
Hey Karen just dropping by to say hello, yesterday was the big 1 year anniversary that began the battle with the dragon… I go this Friday to the doc to get my lab results. You are an inspiration to all… What a difference a year makes.. ooops gotta run babysitting my 2.5 yr old granddaughter.. she is on the move.. xx and I promise to stay in touch
peace and love MJ aka Stephanie
I LOVED this message. Chasing that grandbaby and having the energy to do it. You’ve inspired me so many times. And you’ve made me smile with your joy and tenacity.
Girl, we are living this life, aren’t we? I’ll be watching for your labs. I just know they’re going to be good.
xoxo Karen:)
Hi Karen,
I have been taking treatment for 3 months now. Just recently stopped the Incivek, but this rash is horrible How do I make it go away? I thought it would leave after the Incivek was stopped, but I am seeing new spots. Some look infected :(. I became anemic and had 3 units of blood last week. Had to stop work. Taking Neupogen and Procrit shots weekly. I can’t afford not to work. I am a single mom of 3. Have melt downs about twice a week. How did you work and manage side effects? I worked till I dropped with a hemoglobin of 5.7. I feel so alone. Happy to find this site. No one understands and I am home alone most the time. Would like to work if I get my strength back. When will that happen? I do not have Cirrhosis but the HCV. Side effects are kicking my butt and I am in bed or on the couch most of the time, and this itching is driving me nuts. Wa WA WA Wa, Sorry
Carol
Carol –
Honey, we’ve been there. Keep reading. You are right in the middle of the hellish part of treatment. I’m heading out to work, but will write more later. I started in July and by October was in pretty bad shape.
For now, I want you to know that you are not alone. Keep pushing to stay on treatment. Once you are SVR, you can take those steps to getting your life back. And I promise YOU WILL. I’ll write more later. Check me out on facebook. There is a great community of people who are currently treating. You will find love, caring, and a lot of support.
Please please stay in touch.
I hope today is filled with love and peace. There will be relief.
All my love, prayers, and hugs,
xoxo Karen:)
ps. search for tummy troubles and anemia for my best tips. I had every side effect. You can survive this also. xo
Karen,
It is so awesome to get a chance to peruse your blog and see such an inspirational person facing, fighting, and defeating this horrible virus! You are clearly a rock! And a thriver. Thank you for sharing your experiences and stories. Looking forward to reading mucho more from you.
Thanks again and ganbatte kudasai!
-V
Vaughn Ripley recently posted…Write Your Book
Vaughn –
So happy that you stopped by. Talk about inspiring -Your story of beating Hepatitis C is miraculous! Your website and book gives everyone who lives with HCV hope.
I’ve been reading about your journey of how you continue to live with HIV. I must say, that you understand how to tackle life’s problems with energy and enthusiasm. I certainly look forward to reading more from you too.
So glad we hooked up on Twitter! I thank Harleena for that.
hai, ganbarimasu!
Karen:)
Thank you Karen, for this site, it’s inspirational………….and a friend led me here.
Sue,
So sweet of you to leave a comment. That’s what it is all about… inspiring one another. We can have a long and strong life if we take good care of ourselves. I feel so lucky to be here today. I am very happy that you came by too. Let me know if you need anything on my gmail. K?
xoxo Karen:)
How did you contract the virus?
Danielle,
That question drove me crazy in the beginning. For less than a week. I was in such a struggle to live, that I put it out of my mind. Now that I’m free of it, I began to wonder if I can get it again. I know that the medical community is safer now.
Meeting so many people who got it from various places always makes me wonder. What I learned it that it doesn’t matter how it is transmitted. What matters is getting rid of the virus and healing.
Thanks for your comment! I appreciate you coming by. If you need anything, let me know.
xo Karen:)
Thank you so much for sharing Karen. You are an inspiration. I am so glad I found this site. Struggling with cirrhosis is very scary. Every article I read gives me an evening of stress and anxiety. I get info but no answers from them and have to wait until my next doctor visit. I started juicing recently and even this causes me anxiety thinking I may be over loading my liver. Thank you for all the information you provide on your blog, it helps. XOXOChrissy
Chrissy,
Your message brought tears to my eyes just now. Yes, I SOOO get that. Almost 4 years after my diagnosis, I am still battling of course. But I’m living. I’m eating well. I’m counting on many more years.
Mostly, like you, I am dealing with bouts of fear and stress. BUT – it brightens me to know that you are in this with me. We will do our best each and every day. Life has given us a new chance to experience energy, health, and love.
All my love to you this morning dear sister in the battle.
Keep in touch.
xoxo Karen:)
Chrissy I understand exactly how you feel. Im going through this myself. I am searching for info as well. I too am juicing but think Im over loading or not doin enough. Karen you spoke of fourms where do i find those? Thank YOu
Chrissy, God is in control, he has brought Karen across our paths and he will bring more info for us, to learn and more about this ugly thing. God Bless
Thank you for being such an inspiration. I’ve done with my hep C treatment, with Ribavirin and Interferon in one year. Now I am waiting for my test result after 6 months treatment. I feel worried and stress if my hep C will relapsed. I have a crazy allergic after treatment. Skin itchy happens every two days and it drives me crazy.
Hi!
Your skin will get softer as you get the meds out of your system. I hope you are staying out of the sun or wearing sunscreen. Lots of water may be helpful too. If it doesn’t get better, let your doctor know.
I’m happy that you were encouraged and SO very happy you have cleared the virus. There is almost NO chance of it returning. You are free to live your live and eat well, enjoy every day like it is brand new! Keep in touch and blessings to your new start in life!!
Thank you so much for posting. It means a lot to me.
xo Karen:)
I was just diagnosed with stage four end stage liver disease, Cirrohossis, Iam so very scared and don’t know what to expect as to how to feel . Im torn between family member wantint to stay alternative and not take dr. treatments. i wish I could talk to others that are dealing with this, so I can get my mind straight and except it. I mean gosh how long do I have to live, how does one know this. and the bad effects, is there any way of not having to go through all that. Some one pls help me here, I truly need some truth and encouragement here.
I’m so sorry to hear about your diagnosis. It is a totally overwhelming time for anyone. You can always add me as a facebook friend and I’ll get you into some good groups. ihelpkaren on facebook. ok?
Now, if you’ve read much on the site, you’ve probably seen my post about the decision to treat. It’s a highly personal one. For me, the old treatments on had a bout a 50% chance of getting rid of the virus. They said I wouldn’t survive the treatment anyway. I spent months researching newer drugs and started the minute they were released in June 2011. It was hell, but I no longer have the virus. The newer meds being released now are much easier on your body and don’t take near as long.
Keep researching. Keep asking questions. You can find a lot by looking on my links at the bottom of the website. Lucinda Porter is a nurse who has written a lot and I trust her implicitly. She just finished the new treatment last year.
I like alternative medicine too and try to incorporate it into my lifestyle. That said, the only way to shut the virus down is with pharma.
NOW – let’s address the fear. I’ve written a lot about anxiety. You can learn to cope with it and keep your sanity. I promise. You can also live a long life by getting rid of the virus and eating a liver loving diet. I hope to see you soon on fb. There are private forums where you can speak openly and find a LOT of support.
Much love to you dear friend, You’re not alone,
xo Karen:)
Thank you so much for the response. Im afraid to add to my facebook because of friends and family will see. Im just starting out on this journey, right now Im very hungry. Ugggh what can I eat what should I stay away from. Oh my gosh my brain can’t think, my pocket book can’t afford all this organic stuff. I am so over whelmed right now. What can I have for breakfast. Yes, I would like to meet others on forums are the honest ppl on there?
You know what? The organic stuff is awesome, but I lived on oatmeal, eggs and toast, and peanut butter for weeks til I could figure this out.
This is a good time to say that my facebook page has less than 1,000 friends. I scope everyone out very carefully. Once you’re in my personal groups, you can check out which one is best for you.
I actually have a different fb page with a user name and email that is just for my health stuff. My family is not on there. Nobody but us really wants to hear a lot of that stuff, ya know?
You can look on my page and lurk around to see when and where you want to join. There are groups just for women. Some are for those with end stage cirrhosis, transplants, hepatic encephalopathy. There are many just for those treating with specific groups for specific drugs so you can look at side effects together.
There is very little fussing. These are smart people who want to live longer. You can whine and moan and find lots of love and support. xo
P.S.Look for Daryl Luster, Mindy O’Neal, Debbie White, Patty Beigle, ML Reasor, Connie Welch and too many to name of fb.
thank you but to set up a new facebook you need to put your full name.
how do I get around that? and these people you suggested, wow there is so many with same names how do you know which is the right one. ok, im not thinking clearly right now, im really emotional today.
is this diet safe, and did you live on this day and night? oatmeal, eggs and toast, and peanut butter for weeks til I could figure this out. what kind of oatmeal, what kind of toast, what kind of eggs.
Just plain cooked quaker with no sugar. I used bananas or frozen blueberries for sweetner. Lot of honey and pb sandwiches. I went for the lowest sodium bread. A simple scrambled egg is still one of my favorites. When I was really sick, I boiled a bunch at a time and made a little egg salad.
I hope you will read my blog on https://www.ihelpc.com/here-is-a-sample-of-daily-liver-loving-diet-menu/ and also go to the Best Friends Start her button on the right hand side. There is a list of blog titles to choose from. YES any food I promote is safe. I was dying when I started eating the liver loving diet.
Don’t worry about being confused. We all felt that way to start. That is one of the reasons I began the blog is so no one would feel so lonely as I did in the beginning.
On the fb thing, you are right about your full name, but you can change it also. I know of several people who have had to change their name to get away from an ex or because they didn’t want their family to know they were sick until they could get it figured out. I’m not sure how you would do it, but you would have to have a different email account to go with the new name.
xo K
ok Karen thank you so much. I was able to get going on facebook, now can you help me find some forums to join.
Im so happy for you and glad you have started this blog. I just met you and hope to get to know you more. Your information is Great. You are a very very strong woman to go through what you have gone through, Im happy the Lord has blessed you , I m so scared im not a strong person darn it i crumble like a cookie, So much informatiion, so much on diet, its so over whelming. I ask my self can i do this. Can i??????
Yes lovey, you can do this. I read my own blogs again to remind myself. Lol. You’re going to make it.
Thanks so much for your sweet words. I’m blushing this morning! xoKaren:)
Hi, Karen. Thank you so much flr this wonderful wealth of knowledge. How many years do you reckon that you lived with hep c before being diagnosed?
Hello Angela, I think that Karen probably had the HCV for close to 30 years before she found out. I am a friend of Karen’s filling in for her while she recovers from a procedure. I had HCV for 30 years before I knew. By then, like Karen I had cirrhosis. The problem is that the test has to be ordered. Many people think it would show up in the blood work. It is a special test. I had the test in the mid 90’s and it came back negative. We now know it was a false negative.
How are you doing? I know Karen would love to hear from you when you have time, Thank you, Dee
Karen- My friend I am reading you blogs now to help me understand myself and the deep feelings of a confusion, loss and grief that I felt like no one could understand. You spoke about grief being a “tool” and it clicked for me. I have grieved for many years the losses of what I have felt was betrayal after betrayal. My body has failed me in so many ways and I get angry and while I know anger only feeds destruction I would force myself to work at being positive and moving forward. Then as with life the things I have held close to me like family, friendships and even my own faith I endured the abuse and neglect from those who I had placed in high regards and felt as if they were some how more deserving of the health, peace, friendship, beauty and love that I felt escaped me. I felt undeserving somehow of that peace or felt like I was not “loved” enough to be worthy of these things. I would pray and when I truly placed my burdens down I would find that God was there and helped me but my old self would eventually feel a new betrayal and then I would go back and pick up my burdens that had been laid down again and would once again carry that heavy and oppressing load. As you stated so eloquently the root system from those seeds was so well developed and entangled with the flowers of my life that the fight to remove those weeds seems so daunting and lonely. I am truly on a new journey of discovering me and doing things that I have wanted to do for years but put off. I love music and have always wanted to play the Piano and to once again play the violin as I had in my early years. I am learning to do things I always wanted to but never believed I was capable of doing. I want to learn sign language, crochet, sew and to write. I have put off cleaning out my life of the things that I have allowed to overtake me and it is not ok to let this continue any longer. My life is a gift and it is one in which I want to be thankful for and find true peace. I look forward to reading your blog as it is so helpful to find someone who can so simply and beautifully express them selves in a way that it helps others. My dear friend, you have that gift. Hugs.
Hello there, thank you so much for sharing your story. I understand the feelings of our body betraying us. I have felt a lot like you over te years. Betrayed by blood work that did not indicate I had HCV or blood work that did not indicate that I had cirrhosis. I think that we have a choice, we can be bitter about it or we can try to be optimistic. Before I met Karen I felt sorry for myself, felt as if my life was over before it began. After seeing Karen’s optimistic out look and reading her blogs I got a new appreciation of life.
I am Dee, I am helping Karen out while she had a procedure on her liver and then on the 13th she had a liver transplant. I am sorry to say I am very new at this and have a lot to learn. I admire you for wanting to do all of these new things. I agree with you, life is a gift. We have to take advantage of it. Thank you again for sharing your story. I am sure that Karen would do a much better job of this than I have and she might still do that once she recovers from her transplant. Please keep in touch. Please believe that you are worthy of being loved. Your friend, Dee
Karen, just finished browsing your blog. It’s an amazing resource. As you of course know, you and your story inspire everyone who knows you, whether or not they suffer from hepatitis-C. Thank you for being you and for all you do!
Oh Gary.. This morning I woke up and took a good look at what the blog has morphed into. From Hepatitis C survival guide to best friend insider on cirrhosis. Then it became a cancer blog, and now post transplant. I’m having an identity crisis and surely needed to hear Exactly what you said. Thank you so much for taking the time to drop by and stay in touch. I looked today and see where 30,000 readers a month are getting something from the blog. They don’t all take time to write. I appreciate you. Much love, xoxo Karen:)
Dear Karen, you have no idea what you have done for me!!!! I am a 63 year old widow with cirrhosis. I buried my husband of 25 yrs in 2001 because of Hep C and I have battling with treatments to get rid of it for 20 yrs. I finally get rid of this crazy virus and WHAM!!!! Six months I am diagnosed with Cirrohosis ( I know I didn’t spell that right, sorry) All I have been doing is planningwhat next is going to happen and how long do I have????Reading your blog has really helped, but sadly I am not a candidate for transplant. I wish you a speedy recover and I hope your life is filled with great joy and peace.
What a wonderful testimony to your determination. I’m so glad you treated and are recovering from all the inflammation. I spelled cirrhosis wrong for so long, that my spellchecker even helps me misspell it. haha.
So, keep moving forward. I hear of people ALL the TIME who have slowly reversed the cirrhosis after treating. Keep eating a balanced diet and stay away from salt. You can go for many years without a lot of progression.
Stay at peace and keep stress away. Being informed and supported helps you feel better every day. Always know you can find hopeful support here. Good words dear one. Thank you.
Great love joy and peace to you!
xo Karen
It is always enlightening to visit your blog Karen, I always do. Your recipe of CAB juice, from another article, worked like magic, it tastes good and has made me feel refreshed and healthier.
John Gatesby recently posted…Do I Have Mast Cell Activation Syndrome (MCAS)?
Hi John and it’s great to see you too.
I haven’t had Mast cell activation syndrome, but I’m glad that you are helping people who have this condition. The CAB is still a great standby juice and so easy to make in the mornings. I’ll try to get over to your blog soon. Wishing you all the best!
Sincerely,
Karen