I am positively sure that every person who hears that it’s time to get listed for a liver transplant takes some time to freak out. My doctors and team gave me a lot of information and tons of paperwork but it was a little blurry. I was also running around getting chemo and tumor blasting procedures. There were bone scans, MRIs, a bajillion vials of blood drawn. I thought it would be helpful for you to see a bit about the time to get listed for a liver transplant. If you get denied, read this one.
Everybody is different. With liver failure, the experience may be different than mine. If you have jaundiced ascites, or brain fog or hepatic encephalopathy you may not remember much. Your transplant team, family, and friends will be doing a lot of the thinking for you.
Liver Cancer
I had liver cancer or HCC, after finding tumor on ultrasound. It was malignant, and soon the process of listing began.
The first treatment to shrink the tumor was TACE, and then I began testing my general health. In order to satisfy Unos, which is the organ sharing organization, you have to meet standards. Angela gave me instructions, but I was a hot mess. I would forget where to go, and she would hand out really great hugs.
Pre-Tests
I had to get a mammogram, dental check up, pap smear, and primary care statement. You men will get to skip a couple of those tests.
All of your bloodwork and tests prove that your health is good enough to support a transplanted organ. Those tests are repeated every three months to stay on the UNOS list. They look at Physical, Psycho-social, and Financial. It’s like a 3 legged stool. If one leg is weak, the other two can’t hold up.
My daughter and granddaughters were my posse. We got a family suite at a hotel within walking distance of Nahzu Zuhdi Transplant Center at Integris Baptist in Oklahoma City. It had free breakfast, a pool and a little kitchen. We did our best to make a party of it. They had practically moved in with me any since we learned it was time to get listed for a liver transplant. Plus, I knew that my brave girl armor was strongest when I was around my kiddos. With my husband or sisters, the chance of a meltdown was greater.
The transplant team looks at 3 areas
Physical – I started start in nuclear medicine with a full body x-ray. Then off for lung, bone, and cardiac testing. BTW- you can chose to skip the treadmill. I chose the treadmill. If I had a heart attack or a varices bleed, I was in a safe place. After being scanned, poked, and prodded from head to toe, I had a gleaming bill of health, except for cancer.
Financial – They checked out insurance, and then my checking and savings account, as well as my debt to income ratio. It was emotional. The cost of anti-rejection drugs is just plain scary. I had to apply for Social Security Disability.
Psycho-social – My social worker has worked at Nazih Zhudi Transplant Institute for over 20 years. She asked questions about myself, my marriage, and the details about my family’s lives.
They want to know who will be there for you 24/7. It’s a frightening time for some who are alone or estranged from family by distance, or for other reasons. Your social worker is there to help you and will advise you if you don’t have a lot of support. Your team makes a lifetime commitment to you when you get a transplant.
What If I’m Denied Transplant? Click here to learn more
I wondered what I might do to be eliminated, for example, if I told her about my addiction to Pop Tarts. It was nerve-racking dealing with the emotion of it all. Not wanting to appear weak, I even managed to fight back my tears til I got in the car.
Ultimately, your pre-transplant team becomes your captain, sailor, anchor, and even the parrot up at the lookout. They have a responsibility to be assured that the donor organ will be given to someone who has the means to take care of it. Your center will give 1,000 % for as long as it takes to get you through. Then on the day the transplant is complete, they turn you over to the post-transplant team.
When it’s time to get listed for a liver transplant, it is an exhausting time. Your team will give you a written schedule to follow with instructions. I was worn out by the end of the process. If you’re facing a transplant, I hope this helps you prepare. Each transplant center will have it’s own protocol. Much love xoxo Karen:)
16 thoughts on “Time to get Listed for a Liver Transplant”
Karen,
Thank you for your post on the transplant listing. As you know I am waiting for my next MRI with dye, July 14th, to find out if the tumor I have is growing and if it is cancerous. I feel very positive that I do not have cancer, as none of the signs are there and my blood work is negative. Still, one never knows. I saw your post and was so excited to read it and learn the answers to most of my questions. You are so positive and strong and sharing your experience has made the wait easier. Thank you for answering all my questions, (and I did not have to ask you about them.) You are a guiding angel and I am so thankful for you. You have been so blessed to come through your transplant with success and grace. Blessings to you. I am so happy you are doing so well.
Sincerely,
Sheila
Shelia, I’m guessing that your AFP marker is good and that makes me happy. So many times we get these benign growths. You’re super smart to have a doctor who tracks them. Stay ahead of the game sweetie.
xoxo Karen:)
Karen,
Thank you for your reply. My AFP is absolutely normal. Dr. Marks is being very cautious. So happy to hear from you. You always make me smile!
Sheila
Sheila,
Yay!! This means it’s a lesion. You can breath and let then know that they’re watching it. Live every day to the fullest sweetheart. xoxo Karen:)
I am crying because this is me…………………just let me wrap my mind around this.
who will pay for this? I want to live!
Hi there, you will wrap your brain around this, it just takes time. Are you on Medicaid? Can you apply for the Affordable Care through the government? If you can tell me what state you live in, I could look for benefits in your state to see what there is. There are all kinds of programs out there. There are organizations out there that give grants every year. One is called PAN. I will get there site and come back
I see that Dee offered some suggestions. I hope you have checked them out. This link is good as gold. Click it now or type into your address bar. Let me know what you find out. KK love?
http://hepc.liverfoundation.org/resources/what-if-i-need-financial-assistance-to-pay-for-treatment/
lovey hugs, Karen:)
Oh my hunyo!! I just read this. It is heart wrenching to read. I know this will help many many people. I, like many others, would love to hear the story of your transplant. When you feel up to it of course. I love you so much. Dee
Hi Karen,
I’m so glad I found your blog and read your story! My husband’s story is similar, his tumor was found in the fall o f 2013 and his 7 cm tumor was successfully treated with a single y90 treatment. He is currently in month 4 of 6 months of Harvoni treatment to cure hep c. He is listed for a transplant and we are terrified! We were desperate to get him listed and went through that challenging process and now we are faced with the reality of it and we are having doubts because his health has improved dramatically since his diagnosis almost 2 years ago. I guess I’m looking for advice on getting through this part of the process. Marilyn
Marilyn,
I’m glad you found us too. It is such a scary mess. Did you see my blog on I don’t want a liver transplant? I was seriously thinking that I didn’t want one either. Then the tumor came back in January and my AFP marker went up. I didn’t have a choice.
My Meld hung around 7 for 2 years after treatment. I worked full time and ran 5K’s. I really played with it in my mind too. Stay on the list. Your insurance company has backed you and your transplant team have worked hard to get to this point. You can always refuse a liver … even after you get to the hospital. The doctor will describe the donor liver and you get the option to sign the consent form or not.
In my opinion, this is where you really have to trust your doctor. Mine knew my body, my history, my future goals and dreams and he helped me tremendously. We literally place our lives in their hands. When I say doctor, I should say the surgeon Dr. Duffy and my Interventional Radiologist Dr. Malloy. I did internet research on them and basically interviewed them. I looked at their motives in life. This may sound totally whack, but I wanted to know what their passion was. I discovered that saving me (and others like me) was what made them tick. They loved their life’s work and are making their mark on the world.
I’m all chatty tonight. I should put this in a blog. I have a dear dear personal friend who has been taken off of the list because a 3rd little lesion popped up and is cancerous. Milan criteria… Yeah.. I’m gonna write this out more thoughtfully.
I totally feel for you hunnyo. You are a wonderful wife to be going through this with him. I need to finish this with a statement about my husband. He always supported me. When I wavered during the holidays and talked about refusing the transplant, he never tried to push me either way. I knew he was researching and he would sweetly give me tidbits of info that let me know he was scared and wanted me to live. I wish you all my best during this time.
xoxo Karen:)
I just read this again. Karen…my dear friend, you are an angel!!
Much Love, Dorene
Dee Ernst recently posted…Time to get Listed for a Liver Transplant
Hello Karen. I see the interventional radiologist tomorrow for a consultation for my TACE procedure. I received my MELD score from the Liver Transplant Coordinator today.
They assigned me a 22 and said I would earn 3 point every 3 months. Possible time for transplant in January. Scared about all this. It just does not seem real. I have not shared with my family, only my wife. I just don’t know how to tell them. Is there any workout I can do to make recovery easier? I walk twelve miles a week at a brisk pace and do push-ups and plank position. I am just rambling now.
Karen Hoyt recently posted…Time to get Listed for a Liver Transplant
Hello Karen. Thanks for all the kind words and encouragement. You are exceptional!
I am really struggling with all this. My life goes on as normal. No outward signs anything is wrong. A voice tells me maybe the doctors are being too aggressive, that they want to transplant a healthy patient that will have positive results to show how superior their care is as a group competing for results at the Medical Center. Then I tell myself no they couldn’t do that. Then I hear that tumors light up with the contrast during CT scan due to increased blood flow to the tumor and mine is hardly discernible. Not a moment goes by that I am not thinking how this will change my life. Will I recover, will I get most of my life back after 2, 3, 4, 6 months or never? Doubt and uncertainty is weighing on me. Is this what I need? Is it right? I have been told yes. Then I think about the circumstances that brought me here today and how grateful I am that the tumor was caught before it became too large for transplant. Sound familiar? I am a mess.
Karen Hoyt recently posted…Time to get Listed for a Liver Transplant
Marilyn and Robert,
I hope you don’t mind the dual response. We’re all in this boat together. Your situations are very similar. First, I suggest this blog: https://www.ihelpc.com/i-dont-want-a-liver-transplant/ I was nervous that my transplant team might read this and think I was not grateful. But it was my truth and that’s what this blog is all about.
I was scooting along fine. With just a few years left til retirement, I thought I had it in the bag. My varies were under control with bandings and I was on a minimum of meds. I cycled 10 miles around Lake Hefner after they found the tumor. I was in top shape.
As for the MELD, mine was only 7 until I got the bonus cancer points. I wonder if you get to keep your points if you decline. I bet you do. Because I was asked if I wanted to sign the surgical permission even when I was secondary. I think those 2 “dry runs” let them know I was serious. I had another ablation about a week before the actual transplant. I personally feel like they saved my life. But of course we will always defend whatever course of action we take, right?
I hear the wavering. I did it too. It is easy for me to talk about it from this side and I know that. I totally sympathize with you both. It’s a mental game all the way. I am kind of rambling here and I also posted to Marilyn on the Time for a Transplant blog. In the end it is such a personal decision. I was determined to have a long and healthy life. I did NOT want to lose my ability to be active. I’m working slowly now. I got up to 6 miles on my indoor bike. I went to a funeral today.. drove myself and got around a big crowd.
I don’t always log on every day lately. I’m glad I did tonight so that I could see your comments. You and your family are in my heart tonight. If it’s any consolation, I praying for you and sending strong heart thoughts. My story is having a happy ending… something I wish for us all.
xoxo Karen:)
Karen Hoyt recently posted…Time to get Listed for a Liver Transplant
I am part way through this process of trying to get listed. The medical tests start Tuesday. I also have Barbara as my pre-transplant coordinator and Cheryl was the social worker who interviewed my husband and i. Fortunately, we have great insurance, so no worries there.
I am trying to deal with this one day, one step at a time. To say I am afraid would be an understatement, but the clinic has been treating me for several years now and I trust their knowledge and ability. So happy for your wonderful outcome and am crossing my fingers to make the list and beyond.
Thank you for sharing your experience!
Hi there!
It’s cool to meet someone who is at the same doctor! Gosh I love those guys. It was scary. Yes mam, I know where you are. I just posted a blog about the emotional impact after I got through it all. Whew! What a ride. It’s easy to look back and tell you not to worry, but impossible. Live your life to the fullest sweetie. You’re going to get through this. Stay strong and let me know if you need anything. ok? Oh, I’m coming to the meeting in September. I think it’s the 14th at Integris. You should come!!
xo Karen:)
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