What a winter it’s been for many of our friends. Me too. I’ve been fighting sinus problems and still can’t take anything but children’s Benadryl. It’s been this way for years. With Hepatitis C, I was afraid to take anything, even for pain. After clearing the virus, I ended up with cancer and a transplant.
Can’t Get a Break
It seems like every little thing creates such a fuss. If you’re like me, at times you may get tired of living with the physical symptoms and all the effects of liver disease or Hepatitis C. You find your thoughts spiraling into anger, depression, guilt, or even despair. I hear from people who sometimes want to just give up. This blog is for those days. Don’t give up on yourself with cirrhosis or Hep C. You CAN find a way to overcome every circumstance that you face.
Dwelling on the negative aspects of your health is not going to change anything. Sure, I fully understand the effects that liver disease has on my family, friends, finances, choices, and my health. My mind races around trying to fix one of those areas, and when it seems I have thought things through to a place of peace, it jumps onto the next one.
Don’t Give Up on Yourself with Cirrhosis
Let’s face it: Nothing will ever be the same again. I personally think it will only get better. In the meantime, or what I call the “between time”, there are a few steps you can take that can re-adjust your mindset. It will take some practice, but there is no doubt in my mind that you and I cannot do it!
Take Responsibility – First, accept responsibility for your present circumstances and forgive yourself. You did what you thought was best at the time. Hanging on to negative emotions like guilt, shame, and powerlessness leads to blaming, unforgiveness, victimization, and bitterness. Those emotions are poison to our minds. Maybe you contributed to your symptoms by drinking alcohol, living an unhealthy lifestyle, being bitter, or doing drugs. Perhaps you ignored symptoms for years. It is what it is. You did your best. Move on from here.
Let Go – Our mind passes it’s pain on to our bodies. We cannot allow our thoughts to wreak havoc on what life and liver we have left. We can spend our days, weeks, months, and years telling an old sad story, or trying to predict what is going to happen next. Life doesn’t have to make sense all the time. Let it go. Just let it go and then move on.
Take Action – Be deliberate about moving forward into a healthy future. Distract yourself by reading something uplifting or listening to a song that does not bring a bad memory with it.
Good Action Steps
Buy a new pen and book to write in.
Set your shoes by the door so you’ll walk more.
Clean out your fridge.
Taking positive action leads to a higher state of thought. Peaceful thinking frees us up to forgive ourselves, pardon others, and give grace to those who need it. That includes our parents, family, friends, health care providers, insurance companies, drug manufacturers, specialty pharmacies, overnight delivery drivers, medical billing clerks, collection agencies, lab techs, nurse and everybody. Forgive and release everyone and everything for everything, including myself.
We have so many opportunities to express bitterness out every day as we are battling for our lives. When we carry all that burden, we slowly leak our energy out. Don’t give up on yourself with cirrhosis.
It is what it is. We can accept that this is our life. That was our past. These were our decisions. This is what others did to me. This is what I did as a result of what others did to me. Meditate and watch your thoughts. You are so much more than those thoughts racing around in your head.
Don’t give up on yourself with cirrhosis
I won’t give up on myself. This is what is happening now. This is how I choose to handle it. I will not place blame on myself or anyone else. Now you can move out of limbo.
It’s been almost 4 years since I got a liver from my dear organ donor, and am now cancer free. Since the transplant, I am able to live a full and radiant life. It’s not without problems, but I have a future. You do too! We don’t give up on ourself with cirrhosis. We’ve got a lot of living to do.
XO Karen
21 thoughts on “Don’t Give Up on Yourself with Cirrhosis”
Hi. We have talked before. I now have stage 4 cerhosis . Did a work up to be prepared for the ” shut down ” of my liver. My new doctor who specializes only in liver disease told me on my first visit I had 13 years to live if I don’t get cancer or I am unable to get a transplant. I sat in his office all a lone. Left and swore I did not ever want to go back to him
Could you please tell me briefly about the process when it is time? Such as is there a center / organization I will be sent to or go to? The reason I ask is because I want to go back to my gastroenteritis and have him monitor me. He says he is not specialized in liver so he sent me to that other doctor. Will I just need a doctor as a vessel when it is time to start the process or should I continue with this new doctor. He is not in a liver center he is just known in Columbia as a liver and hepotology specialist who worked st our local hospital now is trying to open a practice in a building by the hospital. I know I need to go back to him because he ordered blood work and ultrasound which I had 6 weeks ago and they don’t have an appt available until the end of May to go over my report! I know my results because I picked them up from where I had the tests ( come a long way in this process on my own ). This is why I do not want to go back to him! Hope I didn’t go off the track about the original question. Will I be directed to a special center ?
I’ll explain it as best I can and will link you to a blog too. When your body can no longer compensate for a weak liver, they will ask you to begin to get listed. It takes a few weeks of paper work and testing. Some people go on the list early, and others wait. Your doctor or hospital will guide you.
They will give you a MELD score which guides to how soon you are transplanted. Most states are over 20 and some higher than others. My initial MELD was 15 or so and I was going to list. Then after getting rid of the virus, my numbers got better. I did not complete the listing process. The whole time you are listed, you have to get bone scans, MRIs and stuff every few months.
If your MELD score is low, you can just wait and get listed later. When they found a tumor, I was listed immediately. You get bonus points and moved up if its malignant hepatocellar carcinoma or HCC.
To answer the question: you will be directed to a transplant center when your hepatologist recommends it. It is determined by your MELD, which is calculated by your labs, biopsy, can’t scan, ultrasound etc.
If there is a teaching hospital nearby, they may do transplant work ups too. I started off at OU Medical Transplant. Then I transferred due to insurance.
If I didn’t answer, keep asking…. we’ll get to the heart of your question and I want you to get the care you need by a doctor you can trust. xoxo Karen
my wife died 4 yrs ago this month from cirrhosos. liver would not function properly, and lungs just kept filling up with fluid. eventually it was just to the point to where it was filling up as soon as they drained it. she was 63 first diagnosed in about 2000 i love her and miss her so much. would have traded places with her in a heartbeat. i made a promise to her that i would take care of her grandkids. thats what keeps me going, that and the fact that i know that she is in Heaven. about 6 months after she died, i got saved and baptized. i want to see her again
I’m so happy that you had a devoted relationship to her. She was a lucky woman for you to care for her, and now the kids. I’ll bet you’re a great grandpa.
What a blessing to have faith that you can trust in during the lonely times. I believe there is a life eternal, and know that she is there now, like a guardian angel over the kiddos. I hope you are able to make sense of all that happened, heal your heart and have a joyful future. If you need anything, just reach out here and find support.
Thank you for stopping by. Messages mean a lot to me when the story touches my heart. xoxo Karen
As always, Karen, this is right on time! So thank you! For the Light that comes through you. I can’t tell you how many times something you’ve said, over the years, has kept me hanging in there one more day. Things are better since treatment, but probably still in 3rd to 4th stage. No pain any more, so that’s good. I’ve been HepC free since the fall of 2014, but had HepC for 40 yrs. It chewed my liver up pretty good. Planted flowers today in our gazebo. That always makes me happy when it’s done. Hopefully it won’t freeze again! Mile high living can have weather fluctuations like crazy this time of year! Thanks for taking such good care of yourself. You are a great example of courage in action. Hugs.
Hello friend, I’m glad you and I are on the same wavelength. I always enjoy our connection across the airwaves. Pain free is good and you’re getting surveillance labs and ultrasounds, right? You’re so lovely, it’s hard to believe you’re sick.
I hear a storm is coming through tonight and the temp is dropping fast. Maybe a sheet kept them warm. I’m a day late on this response. I come through up there occasionally and want to try and buy you lunch next time. I have family from Flagstaff to Sedona, and into Phoenix and Mesa. I assume you’re still in Northern AZ. Lovely sunsets and sun rises.
My 4 year MRI is tomorrow. I’m going to eat a little soup before bed and then fasting. What a world we live in where I’m carrying a young man’s liver into my future. Much love goes into every day. Joy and the thought of us all moving into a new season. Love you much. xoxo xoxo Karen
After 45 years or so I was cleared of hepatitis C I was at death’s door by the time I decided to take all the medication which in itself was a horrifying experience I was on ribovirus intensive all day for 6 months. The side effects were horrific I got trigeminal neuralgia abscesses on my face my skin peeled off in the Sun I was left with non-alcoholic cirrhosis but considering I’m in Fairly good condition. I have a lot of other little things right now that I deal with I am getting old and I was not able to contain my weight in the last year so that exacerbated one thing after another and I have the allergies but I thank God I’m still hanging in I would not mind communicating with others like myself I was not an IV drug user just to share that I’m an educated woman who has had some unlucky situations
Oh that ribavirin is nothing to joke about. I’m so sorry you had to endure it. Only people who’ve lived on it for months get it. Bless your heart honey, and I was there too. I can’t believe we’re still here after all that. It sounds like your cirrhosis is under control. Are you eating healthy and getting check ups?
It “other little things” that I’m talking about. When you’ve made it through and are ready for your relaxing retirement years and have all the frustrations. I hope others will come on and chat. Many of our friends are in private chat groups on fb. That would be a good place to start. They are very positive and supportive. Come over to my ihelpc.com fb and I can hook you up. I’ll check my messages there.
You know what? Life is full of surprises, and in the end – all we want is to be loved and cared for and surrounded by people we can care about. It doesn’t matter what the past is. You are Hep C free and now have a hopeful future!!
Stick around dear one. I’m glad we met! xo Karen
Nice post. I was checking constantly this blog and I am impressed! Extremely helpful information.
I’m glad it’s been useful for you. Staying on your own side and determination are always a good combination. I am so glad that I can help in any way.
You can do anything! xoxo Karen
Whilst looking to aid your self with self improvement, wondering quick questions for example “Where by am I?” and “What am I performing?” may help the adverse self chat vanish entirely.
Joshua,
Thanks for the comment. I think that asking ourselves these questions helps us to watch out for negative self talk. We can listen to those thoughts and call ourselves out on them. Then we can truly begin to calm down and listen to our body for inner wisdom.
Stick with this! You’re on the right track!
xo Karen
Hi Karen – thanks for the encouragement! Almost 8 weeks through my Harvoni treatment and the HCV is barely detectable and can’t be measured. I drank alcohol and ignored my HCV for years, nothing to do now except press ahead. After the diagnosis in 2003 I got depressed and gave up a little bit. The treatments back then were horrendous. I pray that I’ll be cleared and HCV free in a few short weeks.
Keep up the positive words, it’s appreciated.
Curt
Xo
Curt,
You’re a super trooper and remind me a lot of myself during treatment. Having in there, looking for encouragement and hoping for a healthy future. You’re almost there. It’s easy to get down, and having the virus is a big part of it.
Are you feeling better since the viral load went down? Your energy can increase, even though you may feel a little rough due to the meds. The countdown is getting closer!
Thanks for posting these updates. I see a lot of other readers are checking you out and lurking to watch your progress. You’re amazing. xo Karen
Hi Karen – I love hearing back from you. This is a team effort. Getting on the clean liver-friendly diet has had the biggest immediate impact. Basically Keto without all the bacon 🙂 Avocado, olive oil, salmon, broccoli, blueberries, leafy greens, you know the drill. So much more energy and my brain is working better too. Lower viral load, ALT and AST feels good!
Praying and keeping the faith.
xo Curt
Hello Curt!
I’m so thankful for your friendship and support. The year is ending so well, and I’m hopeful for all my friends here to be living their healthiest lives. It’s a great time to look back and reflect on our struggles and see how far we’ve come.
YOU are an inspiration. BTW – I snack around on lower sodium bacon and my cholesterol came back good. Remember, this is post liver transplant, and not everyone will have the same results.
Happy New Year Curt!
xo Karen
Curt,
Good to hear from you again. I’m so glad you’re hunkering down and surrounding yourself with plenty of support. You’ve named some amazing foods and this is what it takes to heal. I just wrote an article about my dad coming back about liver failure. He was determined and really became my inspiration after I was diagnosed.
Woohoo on the liver enzymes! Gosh it brings tears to my eyes!
xoxo Love and Prayers, Karen
This is a wonderful information, it’s really inspired me. Thank you so much.
I’m glad you are inspired. I hope that if you have any stage of cirrhosis, that you will not give up on yourself. No matter where you live, there are doctors who can support you. Plus you always have me. I try to check here every few days and will always look for answers if you need them. xoxo Karen
Hello,
I was diagnosed with stage 4 liver cirrhosis in January of 2016, in which I had been admitted to the hospital with fluid around my left lung. I have had Hep C since I was probably about 16 or so–as at that time they didn’t know really what that was. I remember having a liver biopsy at UCSF in San Francisco when I was in my early 20’s and at that time they had wanted me to start the chemo–which I did not opt in to do as I believe that I was too scared and they still really didn’t know what this was or how the chemo would affect the illness.
So since my initial diagnosis in 2016 I have been hospitalized twice for the fluid retention. I have received two injections of the Hep B virus as I was not immune to it and still need my last injection so that perhaps I can start the Hep C treatments–I have been having sonograms done every 6 months, and blood work when necessary. My spleen is enlarged so it is harboring my platelets–and taking too many of the good ones so I also have Thrombocytopenia on top of this. My last MELD score was 13 but that was a few months ago. I need to go in and get new labs done but just haven’t done this.
I also had to go thru some classes on information regarding all types of drinking/drugs ect as I have Kaiser insurance which I feel is having me jump through a lot of loopholes in order to be referred to UCSF for listing on the transplant list.
I have been feeling ok some days, others very tired and then my body seems to have a lot of different aches, or muscle cramps etc. It is very difficult. I was really depressed just recently for about two weeks crying at everything–I finally tried to re-set my mind and hopefully it has worked although I can tear up at just about anything.
I don’t have much support from my husband. He tries, but he is of Hispanic heritage and it is difficult for him to put me first a lot. He gets frustrated and then makes me feel do depressed and not wanting to do anything.
I guess that I just need a friend that I can talk with.
I just don’t know what all to do. My diet at times is ok, but there are times that I let it slip because I am just too tired to cook.
I need some help and someone to listen. I hope that perhaps this website might help a little.
Thanks.
Hello,
I think this may be a double post since I remember your story. I hope that you’re doing well and highly recommend you get the book. I put a TON of info there about cooking and using leftovers.
First – Have you contacted Help4Hep? It’s a toll free number and confidential. 877-435-7443 is the number and any of their counselors are super helpful. Please reach out to them for financial and any other type of support. Get treated as soon as possible to reduce inflammation from Hep C.
Second – Keep your chin up. I know this is hard. I’ve been there and battling onset of liver failure for a decade now. Do everything in the world to cheer YOURSELF and keep your spirits high. Singing, artwork, hobbies, looking out the window, meditation and prayer. Do what works and then always try something new dear friend.
Third – Getting listed for a transplant and all the testing, interviews, labs, and financial concerns ae just part of it. Please try to not let it get you down honey. xo
Fourth – It can be exhausting when you do a lot of self care. I think it also forces you to keep putting one foot in front of the other. With that said, I’m so sorry that your husband is not helping with caregiving. Do you have relatives, neighbors, or church friends? Anyone in a social group? Please reach into our facebook private pages. Find me at ihelpc karen and get hooked up at ihelpc.com on fb also.
Finally dear, you are not alone. Keep reading on the site. I made it through all of this and think that we can, with fortitude, good health care, prayer, and good nutrition. Take good care of you.
All my best,
xo Karen
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