Right now, I am less than two weeks away from a partial liver transplant.
I am 29 years old. Finding out you have any life-threatening disease is scary (to put it mildly), but finding out you have a disease that carries the stigma of cirrhosis… well, let’s just say it sometimes makes it tough to handle like a “dignified” gal. I can honestly say, being that I found out I had Hepatitis C when I was 12 years old, I have had a lot of experience with this. However, (in my expert opinion) I also feel that if you are going to have a diseased organ – the liver is the way to go. (As if we had a choice.)
Why do I say that? Well, not to be biased, but the liver is an amazing organ! Not only because of all of its jobs it usually completes seamlessly, but because it is one of the only organs that can regenerate itself. Why is that important for us? Because that means in most situations, the liver CAN heal. Liver disease is not a death sentence; even if it advances to cirrhosis, there is still much that can be done. So what first?
Well, let’s not forget that if you have just been diagnosed with liver disease, you will most likely experience some or all of the five stages of grief. I actually have gone through all five stages several times in my life in dealing with this disease, the first when I found out that I had Hepatitis C, then again after I completed HCV treatment with negative results, and most recently, when I learned that it had advanced to Decompensated Cirrhosis and I would indeed need a new liver.
These five stages are denial, anger, bargaining, depression, and acceptance. Have patience with yourself, but try not to get stuck to long in any of the first four stages. (I say this without judgment, as it is with experience.)
Now comes the time to FIGHT LIKE A GIRL! First thing firs: educate yourself! Start with the very basics on the liver, what it does, how it does it, and what happens to it when it’s damaged. YOU (along with your doctors, but mostly you,) are going to be in control of this disease. In short, eventually, if you have to go into an emergency room because of a symptom of your liver disease, YOU should know more about the liver, its functions, and your disease then the doctor on call. (I mean this, and the American Liver Foundation is a good place to start. Your hepatologist (liver specialist) will become one of your new best friends. Don’t be scared to ask questions. What type or strain (if applicable) do you have? Are there signs of damage, cirrhosis (scarring of the liver)? What’s next? Your long term survival depends on you! It is going to be hard work sometimes, but all great things are!
Once you start arming yourself with information, begin setting up your support system (I would start with the people you know are most likely to be supportive). Do not be discouraged, whether they are dealing with their own fears or just plain ignorant, there will always be one… or a handful of people that change towards you or disappear all together. Don’t dwell too long; the more people you share your story with, the more amazing angels you will meet to take their place on your new journey… and this will definitely be a new journey for you! You have already found us fellow warriors; so you might want to start right here!
Some basics that eased my symptoms or just made it all around simpler to deal with are: Diet (less than 2000mg sodium, low ANIMAL proteins, no processed or greasy foods, lots of raw veggies and fruit, and carbs for energy….) Stay away from alcohol and drugs (legal or illegal). Oh, and don’t forget to drink water!! Ok, that was very simplified, and if it sounds familiar, that is because it is actually basically the diet everyone should have. Not only will this help with such symptoms as ascites, hepatic encephalopathy, and fatigue, but this combined with the right vitamins and minerals can keep you from depending on higher doses of medicines such as diuretics, antibiotics, and Lactulose to control symptoms later.
There is much to tackle on healthy eating and the right vitamins for you, but for now a few good places to start are, www.liverdoctor.com and for recipes the whole family can enjoy with low sodium, try www.heart.org.
Rest is also vital in battling symptoms, but what may be more surprising is the role that stresses play. It has been the toughest for me to master, dealing with stress… setting boundaries, asking for help, cutting myself some slack, and accepting that I am not always in control are things I still deal with daily. I wish I had some quick fixes for you, and not to be tripe, but you really must find what works for you. Step back and take it one day at a time, never ever blame yourself, and try to get out there and really enjoy the “good days” when you have them.
You will learn that you are stronger than you ever knew possible, patience really is a virtue, there are some amazing people just ready to help, and most importantly, life is precious, and not to be taken for granted. Learning these things are the blessings of your disease. You can either become better or bitter because of this journey… The only difference is the “I”. What am I going to choose? So remember, in any situation, “You can either laugh or cry, and crying only gives you a headache.”
Ricki Lee Albertoni
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.