There’s not a lot of Ho Ho Ho while being diagnosed or treated for liver disease. Celebrating the holiday and health problems flaring doesn’t bring in tidings of great joy either. Don’t cry or pout though, I can offer you a way to find holiday happiness, even with Hepatitis C. My first year was like the Nightmare at Christmas. Through it all, I found that there’s something magical about the season – even when you’re super sick, alone, and dealing with loss.
Holiday and Health Problems
My diagnosis came with a handful of other problems. First, I was newly single. Just before my liver failed, my husband wanted a divorce. Yes, I had been obscenely groggy with hepatic encephalopathy, and slept constantly, so I forgave him. I don’t even remember much about it honestly. It was still a rough time for me to be alone after 30 years. Second, I was end stage decompensated, and couldn’t teach full time.
No Mo Money
Because I took a part time assignment, there was no health insurance. Mine had been canceled during a hospitalization for ascites in October, and by December, the mailbox was full of medical bills. There were literally zero funds for presents. I was deep down in a super massive black hole of medical debt.
More Bad News
If that wasn’t enough, my liver biopsy left me in pretty poor shape due to bruising from low platelets. Did I mention an endoscopy that revealed varices all the way into my stomach that could NOT be banded? If this sounds less than happy, wait – there’s more.
Losing a Loved One
My mama went on hospice at Thanksgiving. She was at home, and I spent a lot of time up in the bed with her. We were both very ragged and tired, and I was worried that she was worrying too much about me. She and I were snuggled up as she took her last breath during the first week of December. It was a peaceful home-going, but my heart was heavy. I could be next.
My friends all continued inviting me to celebrate in their merry making. My daughter did her best to pull off a Christmas Day breakfast. The low sodium thing meant there was nothing I could eat. I felt so sorry for my family, and barely remember that day. A comforting trip to the cemetery to see mom was followed by a day on the couch watching movies. I was so cold that my body was buried in blankets.
Feelings of Loneliness and Isolation
After leaving the cemetery, and I saw lines of cars in front of homes. There were signs of family gatherings everywhere. The traffic on the highway was thin, and cars were mostly packed with presents, and people, on their way to join others in celebrating.
Holiday Happiness with Hepatitis C
You may be wondering where the happiness part comes in. So far, the holiday season of 2010 sounds pretty bleak. It was. But buried deep within me was something that just about every southern girl from the Bible belt has: Faith. From my childhood, Christmas Days were spent singing hymns of love, about tidings of great joy and peace on earth. Those Good News teachings did not fail me that year.
Through every minute of every day, I thought of birth, death, and life again. The image of new life from a poor and humble situation saturated every thought. It engulfed with me with a hidden hope that my story could have a happy ending. Even holiday and health problems can eventually lead to a renewed life for all.
You’re Never Alone Really
If you’re running high on illness, low on faith, and surrounded by a life of loss, I totally get it. Been there. That means we have a connection point where feelings are low, and yet hopes are high.
I invite you to join me in renewing your hope, and faith in a love that has never failed me. I’ve got friends of every background, and they all know about my faith in God. He has never failed me yet. XO Merry Christmas Karen
Here’s a present from me. These exact words were part of my daily script for wellness through everything. I hope you enjoy it.
18 thoughts on “Holiday and Health Problems”
Leaving a comment… you are awesome… so much info… thank you
Hi there!
Thank you for dropping by. I’ve been on the site working and am so glad to see your comment in more ways than one!
Love you girl!
xoxo Karen
Merry Christmas Karen.
Yes, I know all those feelings…the loss of Hope…”A life of loss”…I also lost everything I ever worked for, due to my illness. I began to prepare for death, giving everything away. I had a curious Elated feeling, through the holidays in 2014. I knew I had pretty much run out the Clock. I made a special mention of Thanks to my Doctors at Christmas, for not abandoning me. I thanked them for that….and that the last 5 years would have been unbearable, but for their continued care. But the Joke was on me. I did not die lol.
Richard,
Thanks for coming by. That is indeed a very poignant story when you think it is over, and every day you wake up again, and again. I think that all of us who have cheated death are a bit in awe of what it feels like to breathe.
You’ve been given 4 years now and many many more to come I hope! I’m believing that we can live to a ripe old age in spite of what we have gone through with liver disease.
Happy Christmas to you dear friend and thanks for stopping by,
xoxo Karen
Merry Christmas Karen,
After messaging you I have come to terms with my husband’s cirrhosis but he just keeps getting sicker. He sleeps so much but is in sleep reversal. I think he just thinks about so much he can’t sleep. He barely eats and what little bit he does he’s in the bathroom shortly after getting rid of it from one end or the other. He’s very weak. His kidneys have fluid so they won’t drain his ascites. And none of the Dr’s seem to know what to do. He has been referred to yet another one that we are waiting to get an appointment with but he is just failing so fast. I’m going to try Mayo Clinic and see if we can get in and see a Hepatology Dr. rather than a gastro. Having reflexology and a foot detox done this week and hope in some small way this might make him feel a little better. Thanks for all you do for the support I really need it.
Joyce,
YOu’ve go so very much going. I know it’s been over a week, but I hope to get an update. I’m driving to OKC today and also seeing the doctor. I’ll be thinking of you and sending you waves of bravery. Please understand that hepatic Encephalopathy robs us of rational thought.
You’re so sweet to keep him comfortable and look for solutions. Also to keep me posted. I hold your stories and your moments in my heart.
xoxo Karen
My husband was just diagnosed with liver damage and your website has been a Godsend! Thank you!
Good morning dear fried,
I am hoping that you find everything you need. Please let me know if I can do anything. I check my email every day and am always happy to help. God bless you for taking good care of him.
Please take good care of YOU.
xo Karen
Hi Karen. This is Karen. I got diagnosed in November 2011 with cirrhosis. I had no insurance and then terrible insurance for years. My doctor with the terrible insurance did blood work every few months, and would tell me I had elevated liver enzymes but never ordered any images etc. I ended up with Obamacare and then got my 1st tests done and my diagnosis. I cried through my 1st endoscopy. I remember the Dr telling me if I didn’t stop crying she would be unable to get the scope down my throat.
Fast forward to now. My imaging always shows no liver cancer so far. It always stuns me because they keep finding cysts and lesions elsewhere in my body. Two, now three, on my pancreas, 2 on my L kidney, several lumps on my R breast, now 2 thyroid nodules. And a mass on my R pinky finger middle joint that is painful and purplish. I get an MRI of the finger in the morning when I finish my 12 hour shift tonight with this lady on hospice in her home. I thank God she is now sleeping comfortably. Everything said, at this point in time, the finger hurts the most. Of course, I’m right handed.
I wish I had the support system others have. My family was physically and sexually abusive as I grew up, and when I run into them somewhere now, they still bully me. My daughter doesn’t understand the foggy brain and the exhaustion, and newly married in another city I’m glad she has distance from me. I’ve always drowned her in my problems, leaving her overwhelmed. I work Christmas Day this year. I usually work it and New Year.
I drove for Thanksgiving from San Antonio to Austin. Then my daughter and her hubby and I drove to Dallas to his mom’s. She is hyper, so we stayed busy the whole time. I think even if I had Christmas off I’d rather stay home by myself and just rest and fall asleep in front of the TV.
I think I can keep pushing myself because I had no choice from when I was so young.
I wish I could sleep like this lady is sleeping right now. Her hubby is finally getting some rest too. He had not been eating and he actually fell the other day and hit his chin on the side rail of her hospital bed. We have to make sure he eats.
One day, when the time comes, it would be nice to be cared for like this. I’m not going to have the money for it though..I won’t be eligible for a transplant because I got diagnosed with LBBB of my heart a few years ago.
Thank you for having this place I can come to and get things off my chest. Hope you have Happy Holidays!
Karen
Karen,
I thought this was answered, but maybe it didn’t post. If I’ve responded,please forgive. I’m honed in on pushing yourself. Not getting listed. There’s a lot of grief in those lines.
As for family issues, use your instincts to protect yourself. I’m going to make a YouTube for you on that one. Watch for it. I just got a whole idea. It’s easy for me to see how well you have mapped your life out for success. Sometimes, family issues mean that we learn self care at an early age. You’ve got that part down. Begin looking to partner with someone who can be your best friend in all of this.
You’d be surprised how things can turn out with the listing process.
For now, I am grateful that you have a job where you can set the pace and be at peace in your own mind. You have the power to move mountains. You are a survivor dear one.
Keep in touch. xoxo Karen
Good Bless you Karen…you are a great source of inspiration to so many!
Continue to heal!
Thank you so much for taking the time to comment such sweet words. It takes a lot to stay healthy once your liver gets sick. I hope this holiday finds you and your loved ones living in good health.
I remain convinced that we can all find a sense of peace and contentment in the midst of everything. The peace is there, we just have to find a way to hook up with it.
Much love and peace to you xoxo Karen
Hi Karen, Thanks for your encouragement. I started 2018 with breast cancer and the ‘cure’ resulted in stage 4 cirrhosis. I have no energy and can’t begin to summon the strength to decorate. I have lost so much weight and look pretty ill and I feel even worse when people I haven’t seen for a bit set eyes on me and I see that split second shock response. I look in the mirror and don’t recognize myself. My hair is so thin and is falling out at an unbelievable rate. I am not ever eligible for a cadaver transplant due to the history of cancer and have to stay cancer free for at least 3 years before they will even consider a live liver donation from my son who is a match. I am struggling to find an upside right now. The thought of cutting into my son to save my life terrifies me. My husband has been a saint. We read your book together and protein shakes are how I start my day and I am putting more effort into my late night snacks to get me through the night. You have been a beacon as I navigate through the fog of liver disease. Thank you for your effort. May God bless and keep you. Merry Christmas, Liz
Dear Sweet Liz,
Wow. I can almost picture you honey. Bravo and standing ovations for beating cancer. Wow. Just wow. So, it’s hard to even start. I want to wrap my arms around you. So brave – fighting for your life. YES!!
Ok the protein shakes should get you built back up in muscle strength. It never helped me much with weight gain through. Sugar is our enemy with liver disease. I hope my carb advice helps. So you are now cancer free. Will they list you before the 3 years is up? Or is this where your son could donate? So much to tell, and I’m sure you’re tired of the telling. I understand the terror and hope you’ll read my take on PTSD. Its a real thing and I can’t even begin to understand your mental and emotional processes. But I know it’s traumatic. And I know you are a survivor.
I’d love to know how they staged you and if you have any symptoms like ascites, jaundice, if you care to share.
The upside. Breathing. Looking into your loved ones face. Feeling the joy and pain of being with them.. and with YOU. Gorgeous wonderful you – still alive. I wonder what you are going to become as a result of this whole battle. I know that overcoming obstacles will draw the very best in you out. I hope you will stay in touch. Personal email if you like.
All my love and Christmas to you and yours,
xoxo Karen
Hello and thank you for your hugs and support. You have no idea how much they mean to me. You truly are a beacon on my difficult days. So, I had invasive breast cancer and had a radical lumpectomy/chemo/radiation/Tamoxifen. I was 6 weeks out of rads and I developed ascites and jaundice. Literally woke up and that was it. Went to hospital where they drained 3.5 litres of gross yellow stuff from my belly and kept me for 2 weeks trying to figure out what had happened. Back in October 2017 I had had a gallbladder episode so they did an ultrasound which revealed grit and a mildly fatty liver but nothing to worry about…..then came breast cancer. The big liver monster is the Tamoxifen but chemo really put my liver under trial. Tamoxifen is a known hepatotoxic drug and my damage happens to 2.9% of women. Lucky me….
Anyway, that was in August 2018 and it has been a flurry of specialists, multiple ultrasounds CT, MRI, PET (to make sure the ascites wasn’t from mets from the breast cancer–no sign of cancer for now but will be monitored every 6 months)gastroscopy…that was fun… also 2 biopsies and a fibroscan.
Oh….and gallons of blood!!!
As for transplant, policy is you have to be ideally free from cancer for 5 years before transplant but they will reassess if I tank after 3 years cancer free. My MELD has come down from 24 which is awesome–largely in part due to following your book advice. I take siirolactolone and lasix and now pee for Canada 🙂 I have had 2 episodes of refectory ascites but otherwise it’s just the extreme fatigue, insomnia and brain fog that are my trial.
If I can stay cancer free for 3 years and am in need of a liver they will just process my son through the take in program and do the transplant. There is no list as I am bring my own liver to the party. There is no question I will need a transplant the question is can I hang on long enough. They also worry that the immunosuppressants you need post TP open the gates for the potential return of cancer. Live liver transplant is rife with ethical issues and the 5 year policy is in place as they don’t want to risk the donor for a recipient that might not live 5 years. Once you hit the 5 year mark after cancer your risk is considerably lower for recurrence. I’m 55 and for sure I am not going down without a fight. Too much to live for!! I am meticulous in my diet re: salt, sugar, fibre, carbs and for sure protein. I write all of my values down and weigh myself to track ascites. Otherwise, I’m just trying to find my way back to me.
Again, I can’t thank you enough for being the lighthouse in the fog for all of us walking the path of liver disease.
Much love, Liz
I’m coming in for a quick hug before retiring for the night. I hope that your holiday is awesome and I’m going to respond. What I DID do was go back today and edit a few blogs about diet and nutrition, with you in mind.
Might I also suggest that you get the meditation on soundcloud that I uploaded. It’s my first, but it’s my own words I spoke to myself during medical crisis.
Words have the power to change our thoughts and emotions. Our body will come in line with time. Much much love,
xo Karen
Just go to soundcloud and look for Karen Hoyt meditation OR go the the holiday and depression blog from December 2015 because I tagged it there. Also in the new Holiday blog, I’ll tag it there too for ya.
Hi Karen,
We wish you good health and happiness.
I have a question regarding hep c antibody test.
I had a reactive antibody test for Hepatitis c then 10 days later I have gone for another antibody test both were Elisa test and it was negative. Did have hepc any point of time.
Thanks
Stark
I’m going to recommend that you go to facebook forums for more chat about that. It doesn’t sound to me like you do. I have many friends and private forums who have more in-depth discussion.
Congratulations!!
Merry Christmas,
xoxo Karen
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