My name is Jennifer Anderson. I am currently 57 years old. I have LALD. Some of you know me, many of you don’t. I am writing this story not just to tell my story alone. It is also to tell thestory of my brother, Adlai Pena, that he cannot tell.
I will try to give you the short version, as much as that is possible, of my health journey. As a child I was always small in frame and stature, always on the sickly side. The first time that I ever got my cholesterol checked was when I was about 17 or 18 and it was extremely elevated. The doctor put me on cholesterol medicine then and I have been on cholesterol medicine ever since. When I was in my late 20’s I got diagnosed with have lupus and other autoimmune diseases. Through the years I have developed high blood pressure, an irregular heartbeat, leukopenia, urinary/bladder, adrenal gland issues as well as problems with my esophagus. My liver enzymes had always been a problem throughout my adult years, raising at times and then stabilizing to some degree. My first liver biopsy was in 2006 and the doctor said it was because of one of my lupus meds but to stay on it because in her view the benefit outweighed the detriment. At the time I was living in the Dallas area and I was supposed to go back in 2
years and get another biopsy but 2 years later I was living in East Texas, and everything seemed to be well enough. Around 2017 my medical issues started to worsen. The doctors thought that it all related back to my autoimmune diseases. My bloodwork on some of my tests started to come back saying that I was now also positive for autoimmune liver disease. So, I got referred to a gastroenterologist and they did several scans and tests on my liver. I also got a biopsy around 2019 which did not positively reveal autoimmune liver disease. In early 2020 I got referred to hepatologist who confirmed a positive LALD diagnosis. I now see a specialist in Dallas who has 2 other patients with LALD. I got put on Kanuma in early 2021 every other week. My first treatment went fine. My second treatment I got very sick and ended up in the
hospital for 3 days. The doctor put me on pause for 3 months and then started me back at only 25% of the dosage over a longer infusion time and I have been on 25% ever since and I am doing well on only 25% and my doctor is very well pleased. My journey continues. But, as I said before I am also here to tell you about my brother. My big brother. My only sibling.
I was always the “sick” one and he was seemingly always the “healthy” one. And, he was for most of his life. He was 59 when he passed away last November. He never married. Never had kids. He was a free spirit. Had lots of friends. He lived his life at 100. He was always employed in the food service business. Putting in late hours because most of the restaurants that he worked at had bars. And his social life always revolved around friends, food and alcohol. He called me a few days after Christmas in 2022 and said that he was thinking about going to the ER. I asked him what was wrong and he just said that he was constipated. That’s all just constipated was his only ailment. I told him that he didn’t need to go to the ER for that. I told him to go and get some OTC laxatives and to call and make an appointment with his doctor the following morning. So, he did. Well maybe a week into 2023 he called me on a Sunday morning early and woke me up to tell me that he was in the ER. I didn’t even ask why, I just told him that I was going to jump in the shower and that I would be there as soon as I got ready. When I hung up with him I got in the shower. When I got out of the shower I noticed that I had 2 missed calls from a local number that I did not recognize. So I began to dry my hair when I see that the number is calling me again. It was the ER doctor telling me that my brother had went into anaphylactic shock and was in the ICU and that they thought that he has cirrhosis of the liver and that he was in very serious condition that I needed to get there ASAP.
WHAT?? I had just talked to him right before my shower! I could not process what I was hearing. When I got there they had drained his belly of about 12 bottles of fluid. He had ascites. Not good. So the next few months it was in and out of the hospital taking him to get drained at first once a month and then every 2 weeks to 10 days. Early on I asked him if he wanted me to try to get him an appointment with my doctor in Dallas who is on the liver transplant team and at first he told me no. I wished I would have ignored him and just immediately got him an appointment with my doctor. But, he liked and trusted his doctors here, and we were both so clueless about just how bad his condition really was. So his decline was quick. Around June I could tell he needed better help than what he was receiving so I asked him again about maybe getting an appointment with my doctor and this time he said yes. It took a few weeks but he got in to see the doctor. Around July they ran some tests and looked over his records and the doctor told us not only did he need a liver transplant but he would also need a kidney transplant as well. Both his liver and kidneys were failing. In August he was admitted into the hospital in Dallas, where he stayed and did testing for over a week to see if he was even a good candidate for the transplants. While doing the testing they found that his heart was in great shape but that he did NOT have cirrhosis of the liver after all. By September he had got to where he was barely eating. What he would eat he would often throw at back up. He would only eat soft foods and soup. He was too weak to work, or to even go out to run any errands. One day I went to take him something to eat and he just looked pitiful and I told him that he needed to be in the hospital and he agreed so I brought him to the hospital here in East Texas.
He was in about a week, but they were not really doing much for him. One of the doctors told me that based on his MELD score that he thought that my brother might live another 2 weeks, possibly a month. That scared me. So, I called my doctor and told him that I thought that my brother needed to be in Dallas and the doctor agreed so they transferred him to Dallas where they put him on the transplant floor and they proceeded to do all kinds of testing. Meanwhile my brother was just declining and he was literally skin and bones. They put in a feeding tube and he couldn’t even stomach the very lowest amount of protein and fluids. The doctors could not figure out what his diagnosis was. What was making his liver and kidneys decline? They had doctors from every field working on him. They tested him for cancer. They tested him for infections and infectious diseases. They did liver and kidney tests. They tested him for autoimmune diseases, bacterias, viruses. They tested him for rare diseases including LALD. He did not have it. They consulted doctors not only in other states but in other countries as well. They could not find anything. But, not for lack of trying from some of the best doctors in Dallas. It was a mystery. He passed away November 2, 2023. Basically 10 months after he first went to the ER in January. It was speculated that maybe he had a rare disease like me but that it was just not yet known. But that was only speculation. We will never know his exact cause of death.
But, my point in wanting to tell you my brothers story is this – If you have someone in your family with liver disease, especially a first degree relative, you need to tell them to take care of their health as well. We didn’t know until 4 years ago that I have been living my whole life with a liver disease. We will never know what my brother was
living with and for how long he had actually been sick for. Many of you have a child or children with LALD, and they have sibling(s) who are fine. Or, maybe you are a parent with LALD with a child/children that do not have the disease. Please tell your loved ones to be vigilant with their health even if they do not have LALD. I hope and pray that this story will never pertain to any of you ever. But, I just felt the need to share our story. My brother went way too soon and way too fast. It was all so unexpected, extremely heartbreaking and he is missed dearly.
