The patient journey of a member of the Fatty Liver Foundation
fattyliverfoundation.org/mo...
12 years ago I was diagnosed with NAFLD. When I asked what does that mean for me the doctor replied (and I quote), "Lose weight and you will be fine". Well, here I am 12 years later and I am NOT fine. I AM SICK.
After many years of admissions, thousands upon thousand of dollars in medical bills, hundreds and hundreds of tests. I am not fine. I am sick. Lose weight and I will be fine????? WRONG! I have followed all of the instructions and still I am sick. My first diagnosis was NAFLD, then I was diagnosed with gastritis, then acid reflux, then gastroparesis, then ulcers. Then in 2018 I was hospitalized in June with "gastritis". In July 2018, I was once again hospitalized with gastritis. After 5 years of telling my husband they are missing something, and the last hospitalization they were talking about discharging me home; I told my husband, when they discharge me take me Vidant or Duke because there is something extremely wrong.
I guess because my husband knows how much I hate hospitals and I was ASKING him to take me to another hospital for tests and admission he realized that there is something truly wrong. It was then he went off on my doctor and told him, you need to do something. She comes in, you put her on IV's, give her pain medication, things begin to calm down and you send her home just so she can be admitted again. He also told the doctor for me to be asking to be taken to another hospital that something is wrong. The doctor decided to perform a CT and more blood work. Within the next couple of days I was discharged home because all of my tests looked fine and the diagnosis was gastritis and he sent me to a GI.
Imagine going to the GI two weeks later all alone relieved the GI would surely run his own test and get an answer. Imagine being relieved when finally a specialist is looking at your case. Imagine the relief you feel because someone is going to FINALLY listen. Imagine the doctor looking you in the eye and bluntly saying, "Well, we both know you're here because you have cirrhosis of the liver".
Imagine the shock because (and forgive the next statement but it is what went through my mind) you have a disease associated with alcohol and you have never been a drinker; not even a social one. Imagine the total shock. I looked at him in total disbelief and said, "No, we both don't". He could not believe the HOSPITAL did not tell me. I could see the hurt in HIS eyes because he realized that I really did not know and the hospital did not tell me. I was angry, I was shocked, I was relieved to know it was not all in my mind.
In June 2019 the doctor did a liver biopsy. He was confident that my cirrhosis was very early. His confidence was short lived. Not only did his bird's eye view confirm cirrhosis, the biopsy came back severe cirrhosis with "very little pink".
This past year has been quite a challenge to say the least. My next step????? Wait until I get sick enough for a transplant. In the meantime, I live on ZOFRAN, am losing weight that I cannot afford to lose, so very tired that I thank the Lord my direct supervisor is my husband and his boss is a friend, and I am on salary. Now, don't get me wrong, I pull my weight the best I can at my job and I thank God for my caring crew because they know when I need them to step it up a little more.
I have spent the past few weeks trying to come to terms with the fact that my working days are coming to an end. My husband, my children, and my doctor has made it abundantly clear "retirement" time is here. So, August 31st my career will end so I can take care of me. I can remember to take my medicine on time, I can rest because I am so very tired, the time has come for me to take my head out of the sand and deal with being sick. I have shed so many tears because while my life may not be completely over, my go, go , go will end life as I have known it for so many years will change.
Numbers Through The Roof!
More confused after GI consult
Fibrotest-actitest panel
