I Don’t Want a Liver Transplant
Sleep is kind of like a thought eraser that swipes the day clean. But I frequently wake up in the middle of the night and remember the tumor. One night last August I awoke with the image of big clamps all around my chest cavity. Eyes wide open now, I saw myself lying on a table surrounded by doctors and nurses, my face as white as the fish I had seen floating belly up on the pond last year. I could see my head arching back with a tube tunneling down my throat that clicked and whished while forcing air into my lungs.
Blinking hard, I stared at my chest as my breasts moved up and down. I wondered what it would be like to wake up in ICU with that machine on and my hands tied down. Shaking my head with an audible moan, I flung back the covers, and jumped out of bed like the house was on fire.
Running From Cancer
My heels drummed a hollow beat on the wood floor as I fairly flew to the kitchen. I stood in the dark. I don’t want a liver transplant. The thought of someone dying to keep me alive is more than I can bear. Of course there are a lot of other things that I don’t want. I don’t want to clean the branches up from the last storm, and I don’t want to pay taxes or shave my legs. I don’t want cancer.
Staring into the fridge, I began moving jars and containers from one shelf to the next. Opening the freezer door, I kept searching. I knew that I needed comfort food. After years of eating so healthy with cirrhosis, who the hell cares if I eat a whole bag of sugar now? Where are the ice cream and cookies where I need them?
Sighing, I reached for the organic steel cut oatmeal. I stared unseeing as the pan of water began to boil and then threw in a few small handfuls of oats without measuring. In my impatience, I turned the fire to high and watched as the oval grains began to boil wildly. The circular pockets of air popped on the surface like craters spitting sulphur at Yellowstone National Park. I too felt like there was a giant faultline. This one was a tumor under my ribcage creating heat, and lava, and destruction. I clapped the lid on, turned off the fire and slipped out the back door.
Somewhere Out There
Walking quickly out from the shadow of the pecan and elm tree, I could see a million stars. Song lyrics brushed my thoughts. I thought of Vincent and his tortured mind and cut off ear. God, I was morbid tonight. I heard Fievel and Linda Ronstadt singing “Somewhere Out There” and thought of Marleen who was probably riding her bike to work on the other side of the world. She beat breast cancer. I heard Anne Murray singing about stars being the windows to heaven and when I looked up, I think my grandma winked at me.
Breathing in sharply and stretching my arms into a V for Victory, I was in awe at how swiftly my thoughts moved from despair to comfort. I tightened my robe and moved back toward the house.
My pan of oatmeal was cooled down now. I usually ate it plain. Tonight, I opened the jar of coconut oil and let it slide gently down my spoon into the pan. The size of the bowl is chosen by the amount of comfort needed. I grabbed the largest soup bowl I could find and filled it with the warm grains, adding a handful of raisins for sweetness.
With the first bite, the tears released. They started as a watery film over my eyes, then spilled into drops that rolled down my cheeks and off of my chin into the oatmeal. I stirred them in and chewed slowly and wondered what would happen if I got a call that a liver was available right now. Well, then I would have to throw the oatmeal away and jump in my car. Then I would be on the road to Integris Baptist in Oklahoma City within 30 minutes.
They found 2 More Tumors
I’m still waiting on that call several months later. However, I still really don’t want a transplant. But time is slowly changing my heart toward the life saving surgery. I have spent a lot of time looking at the obstacles in my mind. Maybe you can understand if you’ve gone through this. I always hope that someone else will find comfort or wisdom in my musings.
I’m scared of a long surgery. Any time you undergo anesthesia, there are risks involved. The oxygen levels have to be kept at just the right levels to keep your brain alive so that you’ll wake up with all your senses. Intricate precision will be required with every cut and stitch.
I’m afraid I won’t wake up. There. I said it. Now I’m crying and typing. Dang it. I just wanna wake up and see my family, friends, and students. I don’t want to leave them in this world without my love. See, I love SO SO big and I don’t think anyone else can love my friends (yes – YOU) and family like I do. So I want to wake up.
I’m afraid of the steroids that will keep me from rejecting the new liver. What if I get hateful? Or moonfaced from the steroids? W eat myself into oblivion? Or lose my sex drive?
Well, I thought the list was going to be longer than that. Huh. You know what I do next.. I look on the bright side. Always.
Looking Forward
Soon, I hope, I will face the long procedure with faith that my God and my surgical team are all on the same page. Everyone will be well rested, mentally alert, and focused. I love my team at Nazhi Zuhdi. There is so much experience and passion in each surgeon’s story. The best part is that where they have human failings, my God does not. He’s also on call 24/7.
I am going to wake up. I’ve envisioned it a thousand times. I will look like poop and my family will be so happy to see me anyway. There will be signs from my grandkids and smiles and hugs from my family. My friends will high five and point toward heaven, letting me know they kept me in their prayers.
There will be wisecracks, atta girl’s, and cheering. Lisa will cry. Jammie will cheer. Mike will give an “attagirl” and Joe and Sarah will just smile their quiet lovey smiles. Julie will laugh cause she knew all along that I would wake up and fulfill my life’s purpose. The brothers-in-law will make the wisecracks for sure.
As for the steroids? Well, I took Ribavirin for 11 months and somehow managed to not get kicked out of the family, off of my job, or the planet. I only take steroids for a few weeks, and moonface could just be another name for wrinkle plumping. In that case, I’ll never need Botox. Of course I’m plan on continuing my liver loving diet so to heck with overeating. And worrying about my sex drive? Nah…. That is, not unless I’m dead, and I’ve already dealt with that fear.
Now I’m lol at my crazy self. I’m ready for a new liver. This one keeps growing tumors. A woman’s got a right to change her mind: I want a liver transplant. And I want it fast.
Sending love from your praying best friend, sweet love. Xo Karen:)
All pictures via Karen Hoyt post TACE Procedure
62 thoughts on “I Don’t Want a Liver Transplant”
You are my hero.
G,
Hay.. I wonder what you’re up to and am glad to see your post. We’re both still in this journey. I hope that yours is going well since treatment. Much love, K
Hi Karen. Just finished reading this. I’d like to thank you for your honesty and humor. From someone who has had 2 liver transplants, I understand the fears you are speaking about. I just want to say one thing about your comment in regard to someone dying so that you can live… I was pretty twisted up about that too, but I now realize or understand that someone did die.. That because that happened I lived. It happened twice. The fact that they died was not to keep me alive. I had nothing to do with. It was meant to be that way and they had registered to be an organ donor, just like I am registered. Their dying wish( so to speak) was that their organs be used to save lives. So their wishes have been honored and I like to think that they are elated about that. I believe that everything happens for a reason. That there is a bigger plan and with that in mind, I do not suffer with survivor guilt. You are strong and healthy and deserve this chance. I hope that you get a call for your transplant very soon. You will be just fine. The fear is actually worse than going through it. I will keep you in my thoughts and prayers. Much love to you.
Hugs,
Nancy Nasfell Rosenblatt
Nancy,
Thank you so much for giving me your thoughts on that subject. It’s a hard one to tackle. I’m still processing that aspect of it. I love the part you said about their wishes are being honored. I know when I want to give something, it gives me great joy just knowing that someone else will be blessed. You are so so very right. We have to look at the negative side, and then focus on the positive.
You’re an inspiration to me! You’ve survived 2 transplants! I’m finally submitting to this wholeheartedly. I appreciate your friendship and support as I muddle my way through it.
Much love and hugs to you dear one,
xo Karen:)
This was so wonderfully written, I could see you waking, running to the kitchen, going out the door, standing in the moonlight with the V sign. Just so impressed with your writing skills, Thank you dear Karen for sharing so much of yourself with others.
You are a miracle to me.
Dee
p.s. Hector once had the same dreams you are having, now he is on the other side, happy and healthy. I think the dreams are a way for our body and soul to deal with the reality in our brain
Much love
D
Dee,
It’s always a joy to see you comments sweetie. We’ve been through a lot together and Hector also. I’m going to have to touch base with him on the dream thing. We’ve stayed close and he’s a huge inspiration to me. Wouldn’t it be great to get together? Oklahoma is centrally located. Ya’ll come to my farm! haha!
Love you sis and thanks forever and a million for you support, not just in life, but for my writing..
Karen:)
I should have said dreams are a way for our brain and soul to come to terms with what is happening in our body. I guess I was on auto pilot, want to thank you and the words just flowed.
<3 you always speak what I feel. Thinking of you always.
Cyn,
You’re my girl. I think of you often. You’re a tough one and we lend each other strength through the miles. I love you… xo Karen:)
As I read your words I cried. You are a wonderful writer. I felt what I think you were feeling. You are a good friend to so so many. I agree with Nancy everything happens for a reason. We may not see it at the time. Thank you Nancy.
Hi Karen, It sucks so much about the tumor! I appreciate you sharing your journey. You are a fantastic writer too!
Prayers, hugs and love for you my friend.
Sheri,
Thank you so much. I poured my truth into this one. It helps to just get it out and look at it, you know? I feel your support and hope you can feel my heart leaning towards you as you take each step toward wellness. You’re a trooper.
Happy Lovey Day,
Karen:)
Karen grace warrior I love you my warrior strong hero…❤️
Dear Debbie, Your heart and mine and so entwined. I love you sister…
You were in part of my dreams this morning…who sleeps at night?! I am sitting at eye dr. Meeting how the cornea transplant is taking. Calling this my warm up tx. I too have days where as I watch my MELD rise and start to wonder if this being the core of my daily existence makes me a worthy candidate. Hope you are going to have a lively Valentine’s Day!
Holly,
I read this on my phone and couldn’t get to a computer for a couple of days. I ran away from home. 🙂 You are SO worthy of a long and beautiful life. It’s a strange dance we are in with the MELD scores. We don’t get to play the tune, do we? But we can stay on our feet and keep moving. I hope your lovey day was filled with love hunnyo. xo Karen:)
Yes you are Woman, here me roar. And Yes you have a right to change your mind. Sleep the way you described it with your dreams I have felt to, but you are elegant in your words. Denial is over and time to get you a new liver so you can be a Mom to your little girl a lot longer. Besides I hope to meet you one day, because I to have a daughter that I had to live for. But now she is going to college and need small trips to look forward to and visitng on some spiritual mountain would be something to look forward to. We all need to focus on the thought of your organ arriving soon and a perfect fit for you. Blessings my fellow warrior.
Yes Susan! A visit on a spiritual mountain top will def be in order.. as soon as the doctor lets me travel. The perfect fit is right. There are so many variables with blood type, etc.
My daughter is my caregiver still. She has watched over me for the last 5 years. Her youngest one wants to take over and write the blog while I’m having surgery. haha! She’s in 6th grade and you’re right… those kids are what keeps us motivated!
You write so beautifully. That makes your compliment even more special to me.
Blessings back on you Susan,
xo Karen
Karen, your writings are so real and upfront brought tears to my eye’s, nothin with liver disease is easy, the reality is a hard pill to swollow, but like you i always look at the bright side of everything, so you know i admire your strenghth, and i love you dearly, i am praying a petition to Father God for your complete healing , you have so much to give to others, you have so muchmore to give hugs and love you always you are in my thoughts and prayers my Bestie, i am always learning from you , you got this, you really do love !! <3
Suesha,
You and I have been friends a long time. I’m really happy to see your comment on the blog. Your words give me strength. I love the idea of a petition to the Father also. We have a contract with God and He is always faithful. I guess I thought this last MRI would show a healed liver. Instead the tumor is growing again. But there is more that one way to receive a healing. I think that a transplant is an excellent way, don’t you?
Thank you so very much for the encouragement not just to me, but to everyone who reads this comment and needs to borrow some faith.
xo Karen
Hey Karen,
You have been/are really going through it in mega doses, what a courageous and honest woman you are.
My hope for you are that everything falls into place for you, ASAP.
You are amazing girlfriend!
Much love and hugs
There’s my girlfriend Sharon – It does seem like stuff hits all at once. I honestly try and practice peace during the good times, you know? Like keep my reservoir filled to overflowing so that when it does hit the fan I can stay calm in the middle of it. I may not spend so much time writing or on social networks, but I’m hunkered down in prayer for all of us.
Feeling the love xoxoxoxo Karen:)
Hi. You don’t know me, but I stumbled upon your story and it isn’t often that I find myself reading and re-reading every precious word! I am a writer who taught at the collegiate level and I was so impressed by your skill. I was equally touched by your candor and the rawness with which you tell us about your journey. I also have cirrhosis (autoimmune stage 3). And while for now my doctors say I’m nowhere near needing a transplant (good LFTs, clean MRIs) I know that one most certainly is in my future. I feel your fears, your struggles to eat healthy are my struggles, and I too believe in a gracious healing God! So thank you for reaching out with your words, and I will be keeping you in prayer.
Janet,
What a heartwarming comment. As a fellow writer and educator, you must have know how this would touch me and I thank you for that. It’s not easy to reach in and write from that “raw” place with clarity. It’s easier to assemble recipes or informational blogs. I know that people need to connect to someone who has been there and my sincere heart is to reach into yours and all my other Best Friends.
But I also know that it helps me in my healing process to write. If you ever feel the urge to put your story into words, I welcome you to speak to other friends with liver disease. I am always seeing new angles and perspectives that would help readers, but don’t have time to write about all the ideas I come up with.
Congratulations on your blood labs! Woohoo! They are doing amazing work in trials regarding fibrosis and I hope that some of those drugs will prove to help with reversing liver disease.
I hope you will hang around the BF Guide. I’m sending you a personal email and wish you all the best!
xoxo,
Karen:)
I was very touched reading your blog. I understand all the mixed emotions. Being sick is no fun, but I am tired of being admired for being strong, and courageous living with so many maladies. Sick of people saying “I could never handle it”.
You are allowed to cry, scream, talk to nobody, or everybody,eat healthy, or eat junk. You are going through a hard scary time.Please know you have many friends praying for you, and it wont stop. You give so much to others, please accept all the love and concern from all who know you.You will get through this ! Let the Lord carry you, and angel wings hold you tight. You are very loved!
Eileen,
You’ve got me to laughing. I love every word and the heartfelt sentiments that came with them. We never know what we can handle until we face it. Then strength does rise from somewhere. But you’re so very right. It’s a mixed bag of emotions. I have always believed in the power of love and prayer. I see it as a force that surrounds us. It’s easy to give, but this is a time for me to learn to receive. You know? Even from my family… I’m always the big sister taking charge. Now I’m learning to allow my weakness to show.
Thanks for your honesty. I needed to hear that perspective and I’m sure others do too. I can feel those angel wings. xoxo Karen:)
Karen, Tears drip as I read this. I’ve been there (2008). You are obviously a strong and caring woman who writes beautifully, being brutally honest while still shining with hope and gratitude. So many folks find themselves in a health situation like ours or something different but very hard. How we walk into this unknown with our hearts open and holding on fiercely to what we still have and what we want is so important, and the way you hold that and more is an inspiration to me, and to many. Blessings.
Matt,
Thank you so much for your kind words of encouragement. You too are a blessing to others who are walking through this journey to wellness. The questions are many… and the answers are vague. Our minds tend to go toward a place of fear for sure. Living every moment is the only way to get through this, isn’t it? Grateful for each day. I appreciate you loaning me some strength. 7 years out! You’re a miracle… We all are!!!!
Much love and gratitude,
Karen:)
Karen, I can remember when I received that call. I was so scared. I knew I was here now and not so sure I would survive. My youngest daughter sat with me all night at the hospital. We talked and talked all night. She helped me to stay focused on the outcome. I cried, I laughed and we shared our hearts. I too had faith in God. I knew he had something more for me. Fast forward…waking up from surgery. Yes the machine was breathing for me, and I couldn’t talk. I tried to use sign language to communicate. I couldn’t tell what was going on, but I knew my family was there. What is this machine breathing for me??? it was not helping me…take me off it so I can breathe…the nurse said, relax…she would adjust the machine, I would relax. It was difficult, but I survived. It was not so long because I slept. I slept very much. Next thing I knew I was being moved from ICU to a room…ventilator was out…fast forward….5 days and I was sitting up in bed getting dressed to go home! Yes…just 5 days. It flew by! And my dear Karen….I had a second one…no fears….I had this down the second time…awoke on ventilator…relaxed…nurse adjusted…sleep. aaahhhh I did it. Karen….it is scary…it is more scary because of the unknown. But this is the time to relax….breathe…eat right and wait. Keep strong…keep healthy…you got this. I put myself in God’s hands….faith, hope, and a vision of what will be…that is the focus. Love you…you are in my prayers always.
Emma!!!
My daughter has helped me to stay focused on the outcome too. I want to protect her, but she has to know everything. It sounds like our relationship with our girls is a lot alike. Wow. 5 days… That is crazy cool girlfriend. So you woke up with it?
I don’t know why that scares me sometimes. It works it’s way into my dreams. They told me my hands would be tied down to prevent me from pulling tubes out. It does sound scary, and I appreciate you saying that. It has Nothing to do with bravery. We know we’re brave! It’s that fear of the unknown thing… You totally get it!
I’m practicing relaxing, deep breathing, quiet meditation and prayer. It has helped me so very much. I love you too. I am borrowing some faith from you when my gets weak. ok? Gosh I’m crying again.
Love you sis. Karen
Karen I cried as I read this knowing my journey through Liver issues has just began and I haven’t been through a quarter of what you have been through … Right now I just take it one day at a time and deal with my emotions and issues on a
Daily basis as it’s to much to swallow looking forward to all the procedures , and Doctors Visits I will be having going forward … Thank you for sharing your journey step by step as you beat this and wake up and begin your life Post Transplant , please keep me posted lots of prayers and love sent your way
Shawn,
You have been through so much. There is no comparison honey. You’ve endured hardships that would put most people under. Yet you bravely stand and cheer us on as our mascot. I know that we draw strength from each other. All of our needs will be supplied. I’m sending positive thoughts and love your way also.
Love,
Karen
Karen, you made this old man weep just a little, then laugh just a little…. I can relate with all of the emotions other than I don’t have cancer. I pray your liver comes quickly and it effectively ends this disease for you forever. God bless you my friend. You are in my prayers.
Joel,
You’re a tender heart for sure. I know we can relate on this stuff. We’re just trying to get another day.. another week… another year. There’s a lot of living left to do for sure. I receive your prayers with my heart wide open. xo
Thanks friend, Karen:)
Hi Karen,
You always seem to be in the back of my mind when I’m researching liver stuff.
Just found this and thought you might like it – turns out your liver knows what your nose is up to! Who knew?
http://www.medicalnewstoday.com/releases/288221.php
Hugs,
Chari
Chari,
Thanks a million. I love this! My fragrance of choice has been essential oils for years. The chemical perfume in certain products makes my heart race and I get allergic response to them. So – I use natural essential oils from the health food store. My baby sis bought me some of the new ones that are called Peace and Calm. I’m not sure what they have in them, but I want to check now.
Thanks for the link and I’m so very glad you were thinking of me. xo Karen
Hey there my friend. I just re read what you wrote. It touched me so much I cried.
I stopped by to tell you that Hector is SVR. He is finally cured. I know he would love to hear from you. He has been where you are now though the opposite of you. He got his transplant before killing the HCV.
I think of you often my friend, think of how wonderfully you write, how much you share. You are such a special person in my life and the lives of others. Bless you.
Thank you
Dee
Dee,
You’re such a gentle heart. I simply Have to meet you soon! I heard about H and need to give him a call. Sometimes we chat on my drive to OKC. You and I will always be heart friends. By the way… I love it when you comment on other’s posts. I’ve had a few people who told me privately how much you helped them and they LOVE your heart and kind words. Thank you so much for that..
Blessings on your day!
xo Karen:)
Dearest Karen, thank you so much for the personal note. It means the world to me to hear from you.
I find myself struggling and come here to to see the gift of you.
Your words bring tears to my eyes.
You are such a gift from God.
Thank you
Dee
Please hang in there, Karen. I know you will because you have been doing it already for a while now with tremendous graciouseness. The phone call is coming.
You are am amazing writer. I am so impressed with your ability to personify your feelings. I have been trying to do what you do for a few years and it is still elusive. What is your secret?
The manifestations of end-stage liver disease are so terribly frightening. Your strength, determination and courage are thoroughly inspiring.
I am sending my very best thoughts and feelings to you.
jim
Jim,
You’re so sweet. Thanks a million for the back up dear friend. You have a good turn with words also. I think when I just get in there and empty my brain it works best. I’ve forced some blogs out… usually when I am trying to understand new information. It takes work to read it and then break it down for me and YOU.
I’d love it if you would like to do a guest blog. Best Friends always enjoy hearing another perspective and I always get good feedback in the form of numbers of time the blog is read. When I read some of my beginning stuff, it makes me cringe. But then again, some recent blogs are messy too. It’s about reaching out and sharing your heart. Now that is something I KNOW you can do.
Heading in for more tests today. I’m feeling your thoughts and love,
xo Karen:)
Thank you SO MUCH for this post! I was led here from the HepC411 site, and this is the first post I’ve read (I’ll be going through them all, trust me!)
It spoke to me so loudly. I too have been going through the “I don’t want a transplant” belief. It was only a couple of weeks ago that I realized I was putting so much energy into that belief, that I didn’t know how much energy was left for making sure that I got a compatible liver, and soon!
Your blog rocks, your writing is heartfelt and beautiful – so happy to have found your blog.
Oh, one more thing. I also listened to a couple of videos from the True Champions site. I’ve been listening to my body, (and sleeping a LOT), and I now feel motivated to tell my body what to do, instead of letting it dictate my daily routine.
Thank you, again and again 🙂
Jill,
First off, let me say I love your name! It’s my granddaughter’s name also. I’m so very glad that you found the blog through Patty. She was one of the first people I met when I first started. She’s a great friend who is so consistent with her own forums.
I’ve packed that bag. I think that was the thing that helped the most. Putting my bag in the car and thinking that no matter where I was, I would just drive to the transplant center.
I LOVE your thoughts on positive energy and can tell that you and I have a lot in common. We don’t like to spend (waste) a lot of time suppressing negative emotions. It’s so much better to get those buggers out of the way and focus on what can go RIGHT in our lives.
How awesome that you love the videos and blog! Mostly because you think you are alone out there.. then you encounter a lot of others who are dealing with the same situation. There is truly strength and courage to be found in unity. I’m so happy that you’re moving toward health and a bright future.
Please keep in touch, kk?
xoxo Karen:)
I had a liver transplant 27 years ago, the seventh at my Medical Center. They have learned over the years what to do and not to do from people like me! Many of your fears I experienced. Long surgery – 15 hours. Steroid Use – 20 years on Prednisone. 3 months in the hospital after the surgery. My faith in Christ did not make me afraid not to wake up for my sake because I knew it was only a step up. But I wanted to wake up for my wife and two year old twins. Lying in the hospital in pain, I vowed to myself I would never go through this again. But it was only a few years of health after the transplant before I said to myself that I would go through it all again in a minute. Every bit of pain is worth it for the life I have been able to share with my family and friends. We were even able to add another child to our family post transplant. Now I have been granted the joy of seeing every one of my children move on to out on their own. The pain along the way has been worth it all.
You have been beautifully honest about your fears. But as you have concluded in this post, you have worked past the fear and resolved to “Bring it on!” Good for you! I am a living witness to what can be ahead for you. Hang in there! My prayers are with you.
Russ,
I loved reading this!! Thank so much for the words of faith and for sharing your story. I’m like you in that I want to be there for my friends. But I also believe that there is a purpose for me and I am not through on this earth yet..
Your kids are so blessed to have you there to bring them up. I’ve surrendered to the process and am ready for that transplant now! Thank you so so much for your prayers and love. xo Karen:)
Everybody here is just wonderful. I’d love to meet. Seems there ought to be a retreat or something. It would be so great to make new friends who understood why my eyes are slightly yellow, and I just wouldn’t have to care about any of that and just play a board game or something. Or swimming with a group of new friends without worrying about how orange my legs might look. This disease is painful on an entirely different way isn’t it?
Ray recently posted…I Don’t Want a Liver Transplant
Ray,
This is totally a great group who share their stories about Hepatitis C, Cirrhosis, and now cancer. I look around the waiting room at the doctors office and see so many who are sick. It would be great to have a place to meet! We totally understand each other’s pain and stories. I know there would be a lot of laughter!
You do know that some people get spray tanned and their legs look orange! But they pay to have them look that way! You would fit right in with that crowd! Actually, I did it a few years ago. haha.
So glad to hear from you,
xoxoxo Karen:)
Ray I think that is such a nice idea, to have a place where we all could meet. Gosh I would like that. There are times I feel very isolated, alone with my problem. No one wants to talk about it. Everyone around me is in denial. I want to talk it through so I can stop having nightmares. It isn’t good to suppress. I had a terrifying one last night that had me screaming for my husband, out loud. Thank God he came running.
Karen is right, we have all tanned ourselves orange, ha ha.
I would love a place when I could talk about my fears, hopes dreams without being shushed. Oh wait I am here LOL
Love
Dee
Hey Karen, I am with Ray, I would love to meet everyone on here. They are all so kind. I have to say what I want the most in the world is to be understood.
Understand that while some days I have lots of energy I don’t on other days. I have good and bad days. As you know Karen we went through the Incivek together 3 years ago. It was very difficult, much harder than just the interferon and ribavirin. I would not have made it without friends like you.
While I am cured I still have problems and no one seems to understand. I try to tell them they talk too fast for me, make changes on a dime. I say, give me a chance to catch up I am confused, they don’t want to hear about it.
I wonder if they are in denial? I was….I thought once I got rid of the virus that would be it. I would be cured healthy and whole. I wasn’t thinking about all the damage to my liver. It took a lot for me to accept it.
Oh that is another thing I would like acceptance 🙂
Well, I really just stopped by to say hello and thank you once again for this place where I can be myself.
Praying for all of us, much love, D
Just in case you have gotten to the end of this and want to know what is happening. Karen has just written about her transplant. I am amazed, less then 10 days after her transplant she is writing to every one
Dee
Dee Ernst recently posted…Post Liver Transplant Protein and Healing
Hi Karen,
I just read your blog and am moved and inspired by your attitude during this incredible journey.
I am on the transplant list, my MELD is 33. I have been feeling vey reluctant about going through with it so your post about not wanting a transplant was very good to read.
I am happy you are doing well and look forward to future posts.
All the best to you.
Riv
Hi there Riv! So good to see you! I am not sure if you have seen it but Karen is now recovering after her transplant, she is doing very well after her transplant. Thanks so much for writing. Really happy Dee
Riv,
Dee texted me this morning and was so moved by your message. I logged on just to loan you some extra courage and wish you well. I do SO get it. I am 3 weeks and 1 day post transplant today. Yes, it was a lot of work. But I can tell you that in spite of moving slow and resting a lot… this was the best thing that could have happened.
I feel better than I have in years in many ways. It will take some time to heal. I’m adjusting to meds and my labs are perfectly inside the normal range for the first time in years.
I’m sending a bunch of love and freedom from anxiety to you dear one.
xoxo Karen:)
Karen Hoyt recently posted…Post Liver Transplant Protein and Healing
I enjoyed your post. I am nowhere near having to have a transplant but someday I will have to think through the process just as you have. Right now, my meld score is still very low but the thought of having to have a transplant still crosses my mind occasionally. Right now, my inclination is to say I don’t want a transplant. I am curious, did you find that everybody around you knows what you should do even though you didn’t? I find that I can’t discuss the pros and cons of having a transplant because everybody else simply thinks I should so there is nothing to talk about. Did you find that with your family? You are a great writer. Thanks for sharing the post with us.
Hey there, thanks so much for writing in. I hope you never need a transplant. It is alot of testing and I mean lots. I am Dee. I think Karen surrounds herself with positive people that take the time to do the research or listen to her as she talks. She was afraid of the transplant as you can see. I will pray for you. Dee
Hi and thank you! I discussed it with certain family members openly. Others were too emotional and could only hear the “healing from transplant” part. Everyone is different. My daughter was very open and encouraged me to take the route I could live with. My husband also. I gave them all of my fears openly.
I think we try to keep the conversation to a minimum, don’t you? It’s like I didn’t want to upset anyone. But then again, I needed to talk through my options. It can be awkward for people to hear us talk of death. I took the stance that it was better to discuss it than stuff it. Again, some I avoided the topic with because their emotional reaction might have been too strong for me. I hope this helped. It is late and I’m a rambling. xoxo Karen:)
Hi Karen et al,
I have end stage cirrhosis and ascites. I was first told I had cirrhosis 4 1/2 years ago (the GI doing hospital rounds woke me up at 11 PM to tell me this and was yawning the entire time). He said that I have cirrhosis and probably have 2 years to live and that I needed to get on a transplant list immediately because it usually takes 2 years for one to be available. I have not ever been a drinker, drugger, smoker or promiscuous. I have cerebral palsy and have had numerous horrific symptoms from that and have had several near-fatal surgeries and am in constant extremely severe pain. My wife of 30 years deserted our little girl and me over a year ago to pursue her interest in the three Ds – drinking, drugs and di**s. We are still heartbroken and the grief is more unbearable than any physical pain. I went to my GI 3 weeks ago and he said I would have to get a CAT scan so he could diagnose very severe pain and nausea. I don’t have medical insurance, I can’t afford it with all the divorce and therapy expenses. I am also being foreclosed upon our dream home I worked a lifetime for. I got the CAT scan and my GI dr had me come in the next day. He said that I have end stage cirrhosis with ascites. He told me that I must get medical insurance asap because ‘you are going down the tubes and I mean going down the tubes fast, you might have as little as 2 weeks and you should prepare yourself for this and get your affairs in order’. This was 3 weeks ago. My daughter turns 18 in 2 weeks and graduates in 5 months. It is my long term goal to try to live long enough to see her graduate and moved into the city where she will go to college and give her the best start I can on her adult life. Get her a little used car, furn, etc… But I am very limited financially, I am disabled from my health problems. I helped my other daughter get started and supplied everything for her. Now that I am very ill and grief stricken she will no longer communicate with me. I am clueless. I think she is in denial and can’t handle it. It would really help to hear from her before the end. Sorry, I’m rambling but have a lot to deal with all the time. I don’t know what sleep is anymore, I go weeks without any sleep which makes me constantly aware of all these terrible things.
My daughter that lives with me tries to comfort me with the fact that once I pass, that I won’t hurt anymore, that my heart won’t ache anymore and my grief will finally end. Morbidly comforting. My pri care dr has agreed to support my decision that the next time I have a horrific episode to just let me pass on, so that is a relief too. Thanks for letting me pour my heart out, it helps to know that others are fighting this and trying to make the big decision for themselves.
Hello, I am so very sorry to hear of your plight. Have you tried to get help in the way of Affordable Care? I am sure you would qualify. Do you need an advocate to help you? Do you have Hepatitis C? or another disability? There is a group that helps people called HepatitisC.net. I wish I knew what to say or do. Can you call adult protective services to try to get help? Have you tried calling 911 to get immediate assistance at a liver transplant hospital? I know the pain of being abandoned by a child, I feel your pain. I am sorry. If you need resources, people to help, please email Karen at IhelpC@Gmail.com. She has her email address on the home page. Take Care, Dee
I don’t want a liver transplant. .I have heard more negative comments than positive. ..I am 6 months away from one. ..I need all the information for it can get..thx
Hay girl,
I just saw your line of comments. I’m so sorry you’re facing this. I hope we’re fb friends. I’ll log on and look for you. We have support groups that are privately screened for transplant patients only. There is a lot of hope. Yes. You can have complications and problems. I have a mucklydedone mess going on now. But I’m alive to face it. If I were buried, I’d be having no problems.
It may feel like I’m speaking lightly and I assure you that I am not. It’s just that it is such a very deadly and serious thing to have a life threatening illness and an organ transplant. That said, it’s so very possible. I’m so happy to have gotten my liver. It’s been almost a year. April 13 is my liver birthday. Gosh I’m happy to have gotten it. It’s been the most overwhelmingly wondrous year of my life.
I’m praying for you. Read all my transplant posts. xoxo Karen:)
I’d love to hear more about what you’re going through that has you listed. Let me know if I can help. xoxo Karen
Hay buddy,
Dee covers so well for me. I just wanted to reach out and thank you for sharing your personal story. I’m so proud of your daughter for graduating. You have done a great job. It sounds like you are still in the hospital. You have a good doctor to help you through this tough time. Insurance? Really I hope you find a patient advocate who can help you through this. Email me privately with the name of your hospital. With Hippa laws I probably can’t do much. But I will reach out and try.
I hope you will write again to me. Let me know you got this.
God bless you,
love and prayers, xo Karen
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