Time to get Listed for a Liver Transplant
I am absolutely positively sure that every person who hears the word transplant in regard to their own body takes some time to freak out. Moi included. My doctors and team gave me a lot of information but it was a little blurry. I had instruction and tons of paperwork for sure. But I was also running around getting chemo and tumor blasting procedures. I had bone scans, MRIs, a bajillion vials of blood drawn. Looking back from the vantage point of 10 weeks post transplant, I thought it would be helpful for you to see a bit about the time to get listed for a liver transplant.
Every person will vary according to their diagnosis so this will be a pretty general discussion. If you have been listed for a liver transplant because of liver failure, your experience will be very different than mine. For example, you will probably be as yellow as a daffodil (jaundiced), look pregnant (ascites), and be in and out of the hospital prior to transplant. You may or may not even be aware of what is going on around you due to hepatic encephalopathy. Your transplant team, family, and friends will be doing a lot of the thinking for you.
My experience is from the viewpoint of liver cancer. My journey started the day they found the tumor on ultrasound. It was on Friday and they sent me right down to get a CAT scan. I heard back on Monday and they had scheduled an MRI. From there all of the information went to the tumor board.
After the tumor board pronounced that they were going to treat the tumor with TACE, (read about that here) the testing began for transplant listing. My pre-transplant coordinator was Barbara. no pic She had worked there for almost 20 years. Beautiful, smart, logical and to the point, it was her job to make sure that myself and many others were listed with UNOS and kept up to date in the system. Her assistant, Angela, stayed busy giving me instructions. There were checklists, emails, and phone calls. I was a hot mess. I would forget where to go and she would email me a back up. She also handed out great, and I mean really really great hugs every time I saw her. I’m crying now remembering how tightly she held my hand and heart through the process. I love you Angela.
I had to get a mammogram, dental check up, pap smear, and primary care statement. The men will get to skip a couple of those tests. The team has a goal in mind with all of this. The bloodwork and tests were performed to be sure that the cancer had not spread to any other part of my body. If it spread, I would not make the transplant list. Those tests are repeated every three months while listed to stay on the list.
Meanwhile, a transplant evaluation schedule was made at the hospital. I was to take family members with me to Oklahoma City for 4 days. My daughter and granddaughters were my posse. We got a family suite at a hotel within walking distance of Integris. 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 since the diagnosis and wouldn’t let me out of their sight. Plus I knew that my brave girl armor was always strongest when I was around my kiddos. With my husband or sisters, the chance of a meltdown was greater. The transplant team looked at 3 different areas of my life. Physical, Psycho-social, and Financial. It’s like a 3 legged stool. If one leg is weak, the other two can’t hold up.
Physical - It’s kind of like a board game. Monopoly… or Candyland. Roll the dice. They start with nuclear medicine. I’m not sure what that entailed, but I’m sure I glowed in the dark for a while. Spin the wheel. You will have a full body x-ray and if you pass that you go to pulmonary tests. Roll the dice. If that is a go, you get a bone scan. Once cleared, you move on to cardiac testing. BTW- you can get it done with drugs or actually do the treadmill. I chose the treadmill. I figured if I had a heart attack or a varices bleed, I was in a safe place. Spin the wheel. From there I saw the cardiologist and once he approved me, I was passed to go physically. I think that is the order. Maybe it was bone scan first. Some tests were fasting and they tried to fix it where I could eat by noon. My colonoscopy was done along with a varices banding on a different day. I was scanned, poked, and prodded from head to know. A gleaming bill of health…. Except for cancer. Pass Go. Or land on the rainbow. Don’t worry about how many spaces to get there… Your team will give you a written schedule to follow with instructions.
Financial – I spent about an hour with my financial advisor. She had checked out my insurance company. After filling out a worksheet about my checking and savings account, she wanted to talk about my debt to income ratio. I was ready to go sell my car. It was emotional for me. They start talking about the lifetime cost of anti-rejection drugs …. it’s just plain scary. She advised me to apply for Social Security Disability. You can read about that here. She also talked about fund raising, which is really helpful for some. In the end, she approved me. Whew! Now the psych eval… haha. That was a trick. lol
Psycho-social - Cheryl was my social worker and was my last stop. She’s a tireless bundle of energy. She’s worked at the transplant institute for over 20 years and knows the ropes. She asked tough questions about myself and my marriage. She wanted to know details about my family’s lives too. Like where do they work. How many children. How long are they married.
I have since decided that this is a test of your support system. They want to know who will be there because you will need help 24/7 for a while. It may seem invasive, but the team wants you to be taken care of. Your back up needs to be stable for YOU. This is 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. They want you to have a safe environment and for you to be cared for.
The visit with Cheryl took a few hours. She kind of scared me and I don’t scare easily. I wondered what I might do to be eliminated… like if I told her I ate Pop Tarts or sometimes could be self willed and push the limits physically. I think it was just the emotion of it all. I was afraid to cry because I thought I may appear weak. It’s kinda funny – in a short time, Cheryl ended up being the person that I would call when I felt a cry coming on. She gave solid advice and kept me going while we waited on a donor. That was the day I got in the car with my daughter and granddaughters and burst into tears. Another blog….
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. They give you 1,000 % for as long as it takes. Then on the day the transplant is complete, they turn you over to the post-transplant team. I took goodies to my group on most visits. I think I owe them one more round on my next visit.
The road leading to be listed for a liver transplant is an exhausting one. I was worn out by the end of the week. If you’re facing a transplant, I hope this helps you prepare. Each transplant center will have it’s own protocol. I hope to get feedback from other parts of the country.
I love you all, xoxo Karen:)