If you follow our transplant discussion group, you’ve probably encountered member @contentandwell, or JK, in various threads. JK’s been part of our community since February 2017 and we’re so glad to learn from her experience receiving a liver transplant in 2016. It was an honor to have an e-interview with JK to learn more about life leading up to her transplant, as well as how she’s doing now. I hope you enjoy everything she has to share, and thank you JK, for your willingness to be interviewed!
Tell our readers a little about yourself:
A view from sunrise at JK’s “camp” on a lake in Maine.
I live in the northeast, in New Hampshire, about 55 miles from Boston which is where my heart is. I grew up in a Boston suburb. I’m married and have a wonderful son and an equally wonderful daughter. Unfortunately, they do not live close by, my son just moved from southern California to Denver, and my daughter lives in New York City.
I basically retired when my first child was born. I returned to work when they were both in college but since I was in IT that had passed me by, so I ended up doing a couple of jobs, working for an internet retailer, being a manager in an inn, and then cutting back to do customer service a couple of days a week for a local furniture retailer. Now I have retired from all of that also.
What type of transplant did you receive and when?
I received a liver transplant on September 23, 2016.
What led to you needing a transplant?
I had many symptoms that are very indicative of cirrhosis, including declining platelets, hepatic encephalopathy (HE), shaking hands, edema, I was constantly cold, and had trouble sleeping. These had all been mentioned to my doctor. I was never jaundiced though, which is a big one for many people, and my bilirubin was not really out of range, nor were the aspartate aminotransferase and alanine transaminase tests.
On December 24, 2013, I had my first HE episode. HE episodes can be different for different people but most often cause extreme confusion. My first episode was a mild one; I felt tired and wanted to go to my room for a nap. Since our kids were both there and we were having a nice dinner together this was out of character so my husband was immediately concerned. Then I got slightly nonsensical. I was taken to one of the local hospitals where there was concern that I might be having a mild stroke. By the time I got to the hospital, I was fine. I was diagnosed with fatigue, dehydration, and a very mild urinary tract infection (UTI). I actually probably did not have one but apparently UTIs can cause confusion in older people. I was told to see my primary care provider (PCP) afterward. She immediately told me, via a phone call, that she felt I had Alzheimer’s! Two other doctors, my hematologist and the neurologist both scoffed at that. She was history as soon as I could find a better PCP.
Within a few weeks I had another HE episode. I was advised by a doctor friend to drop some of the medications I was taking, a blood pressure medication and Vesicare, because they can cause confusion. I did that and did not have another episode for three months so we felt that had been it. Then another episode occurred.
The episodes were horrible for me and very scary. Some of them I don’t recall but I do remember most of them, at least partially. To know you are not making sense is a terrible feeling. Not knowing the cause, they thought it was neurological. Even now I get tears in my eyes when I remember having such confusion.
My HE episodes were thankfully short-lived in duration. The mild ones would go away when I went to bed and slept for a while. The more difficult ones went away more gradually and landed me in the local hospital, usually going there by ambulance because I was too ornery for my husband to drive and control me. I learned to recognize when a HE episode was coming most of the time. I would get a really sick feeling in my stomach and be very tired. If either of those started happening, I would head home immediately. Most often a stomachache was just a stomachache, but better safe than sorry.
HE can lead to coma and even death. I had one episode where I became almost catatonic. My husband called a doctor friend and he came over and said to get me to the hospital. Still, no diagnosis. The neurologist was actually the first person to suggest a liver problem when I had another hospital admission.
An ammonia test was done and sure enough, my blood ammonia was quite high so Lactulose was prescribed. With that knowledge I had a CAT scan which confirmed cirrhosis and I was referred to a hospital in Boston in early-spring 2015.
The hepatologist I saw was a wonderful doctor, I really liked her. She said I probably had cirrhosis for 10 years and that it can take that long for it to really make itself known. This fit into the time frame when my platelet count started declining, my diabetes diagnosis, and when my hands started shaking which had been diagnosed as “essential tremor.”
The hepatologist prescribed Xifaxan which gets rid of the ammonia in a different way than Lactulose does, and I was able to just use that alone for almost a year, during which I had no HE episodes (hallelujah!). When I did have another episode I was told to start taking Lactulose again along with the Xifaxan, that my condition had worsened and now I needed both. That was in the early-summer 2016.
How did you feel leading up to your transplant?
I did incredibly well through the long wait, about a year and a half between the initial diagnosis and my transplant. I felt well and I looked well. I did all of my normal things, including driving, except when I had a HE episode, and when Lactulose made me too nauseated to do anything.
I was very fortunate to feel so well for so long. Even my PCP, about a month and a half prior to my transplant, commented on how well I looked and that if he didn’t know I was sick he would think I was perfectly healthy! If he had seen me about a week later he would not have said that. Things went downhill very suddenly and I started retaining huge amounts of fluid, gaining 35 pounds. I could only put slippers on my feet and had thankfully kept some of my old clothes so I did have things to wear, although I really didn’t leave the house except to get a haircut!
I had been told that I would probably not get a call until at least November so when the call came on September 22 my husband and I were stunned, but very happy of course. I had been so miserable I didn’t know how I could possibly make it through to November feeling as I did.
How did you prepare for transplant?
I was overweight for much of my life, particularly when I became a stay-at-home mom. I was losing weight in stages and then, after a year and a half of not knowing what was causing my problems, I finally got a diagnosis of nonalcoholic steatohepatitis (NASH) and cirrhosis, with malignant lesions in my liver and referred to a Boston transplant center since there is no place in New Hampshire that does liver transplants.
The main things I did to prepare were to lose weight and exercise more. A transplant was my only option so I got very serious about weight loss and getting into better shape so that my recovery would be the best possible. An additional incentive was that I read somewhere that some transplant centers do not accept patients who have a BMI over 30, which mine was. I had no idea at that point if I might dual list but if I did need to I did not want my weight to be an obstacle. I lost about 45 pounds after my diagnosis.
I wasn’t totally sure I wanted a transplant but as time went on and things went downhill, I definitely wanted it. I was eating very healthily, and not drinking of course. I still miss my glass of wine with dinner.
What was your recovery like?
I had an incredible recovery. Of course when I was in the hospital I hurt, and for a brief time afterward. When I was in the hospital one night I really was hurting and couldn’t sleep. One of the nurses came in and found me awake due to the pain. She chided me and told me I should have called her, she could have given me some additional medication, which she did then. So if you do need it, then make sure to ask for it. I think they do not give you the max dose initially. By the time I went for my first post-transplant appointment I was doing great, I even amazed the transplant clinic! My incision healed very quickly and was never painful by the time I left the hospital. I feel very fortunate to have had such a remarkable recovery. The regular schedule of visits was reduced quickly because I progressed so well.
How has life changed since receiving your transplant?
It’s wonderful to be able to live a normal life and to not awake each morning praying that I would not have an HE episode that day. Now I pray to thank God that I have been given the gift of another day and pray that the family of my liver donor is well despite their horrible loss.
I do all the normal things I enjoyed before and we have resumed traveling a bit. When we think of going someplace I research to find out where the closest hospital is, preferably a transplant center, because if anything goes wrong a transplant center knows what they need to do. We have also started using VRBO for places to stay since then I have more control of my food. I always enjoyed staying in hotels and eating out, but eating three meals a day out is very difficult with sodium restrictions. I do tire more than when I was younger, but I no longer need a couple of naps a day. I often take one in the afternoon but that is probably because I have trouble sleeping due to other factors.
What advice do you have for someone just starting on their transplant journey?
I would definitely advise anyone starting the journey to get into the best possible shape they can, and if overweight, to try to lose some of it. Stay hopeful and make sure you report any symptoms, even those that may seem unrelated. The things the liver is responsible for are amazing. For instance, who would think shaky hands were from a liver problem? Mine got to the point where I couldn’t eat soup with a spoon, and no way could I take a picture, they were all blurry when I tried to. Another odd symptom is that many people have trouble sleeping at night and then have to compensate by taking naps.
I always planned to write in a journal during my hospital stay but somehow the notebook that I had purchased for that did not get packed, and my husband couldn’t find it. I thought I would be able to remember afterward but there was too much of a blur due to the fatigue from the surgery, and I presume from the painkiller drugs I was put on. Now, if I had it all to do over again, I would write in a journal from my initial diagnosis or even before I finally got diagnosed. I wish I could put it all in better order in my mind.
Try to stay on top of things yourself. My husband, thinking he was being helpful and wanting to be involved, decided to take on the task of setting up my medications for the next day, each evening. At one point when they told me to stop taking one, I wasn’t sure which one that was because I was not getting involved. I changed that the next day and started setting my pills up for a week at a time. He was a bit hurt by it but I thought it was important to know these things myself, so stay involved with your own care.