Be your own advocate for your care

Read and learn everything you can about what your dr tells you about your condition. Ask questions about what you don’t understand. My husband was not a drinker he did like his sweets. He was not over weight either. He was told by a doctor when he was 35-40 that he had fatty liver. I asked him what he had do about it. He told me his dr said watch what you eat. I have to say he did see a dr at least every year for labs was eventually told he was Diabetic and put on metformin. He ran on a treadmill daily and was active when he turned 70 this started to happen. He had enlarged prostate and had a gallstone in his bile duct which was removed. The stone caused inflamation in his urinary tract and he had to use catheters for 2 months. His doctor ordered scans of his abdomen and liver. That doctor didn’t see him or call him for three weeks. He finally saw the head dr in the practice and he as asked him if he had an appointment with a Neptologist. He told him no because no one call with results of his scans. He proceeded to tell him he had cirrhosis and needed to see someone and also a Kidney dr. He referred him to Rush hospital and we made an appointment. Which was 4 weeks later. (Time is of the essence with his disease). The first thing she did was ask me if I had any children I told her a daughter and 2 sons, she handed me a piece of paper and told me bro go home and tell them to have there livers checked because fatty liver is a precursor to cirrhosis. That day he was already retaining fluid in his lags and stomach. She explained he needed to start paracentisis to remove the fluid in his stomach. She mentioned that he may need a liver/kidney transplant because his kidneys were not functioning. That was a surprise to both of us. Long story short he continued paracentisis taking medication to prevent him from getting high ammonia levels caused by the liver disease and I did home dialysis 4 days a week to clean his blood of toxins his kidneys could not clear out of his system. This disease is complex and even today doctors are not honest with people about the seriousness of this disease. Is difficult to get appointments with the specialist because there “busy” so you see there associates who are very good but they’re not the doctor. We continued to do everything they asked testing, labs, shunt surgery and we never got answers to we’re he was in this process when I asked the specialist I.was told he was a very sick man. I asked about transplant and he was to sick. I asked how did we miss the sweet spot where he was able to get on a list or did we miss it. She had no answer. We dealt with all this for a year and a half. To no avail. He passed on 12-4-24. One thing you have to remember they want you to have a primary care dr but when your in the hospital you don’t see your primary dr or specialist evacuees you see who ever is on call at the time. I had to ask the charge nurse to call his specialist to come and see him when he was in the hospital they said they asked for her and he was in ICU for almost 3 weeks and she never showed up. My husband asked the first time he saw to to be honest with us about his care and she was not. I will say every nurse my husband had was amazing and I appreciated the care and compassion they all showed him. I understand these specialist are busy and they deal with stuff daily but when you are going thru this complex issue and are watching you loved one slowly die you do and try everything. It’s a terrible thing to go thru. I tell everyone I talk to if they say oh, I have fatty liver to go to a doctor and get Al the testing they can and no mater there age make a change before it’s to late