Reversing Cirrhosis Book Share - What You Need to Know About Your First Specialist Appointment
Before I get to the nitty gritty of healing, it's important to know how to handle that first specialist appointment. It was overwhelming to me, so preparing in advance eased my fears. Reading the experience of others in my support groups helped ease my mind. A caring member in my first liver disease support group shared a list of questions which I have expanded upon below.
I needed to keep all my dates, paperwork, notes, and referrals together, so I bought an old fashioned 18-month planner. Having everything in one place helped to ease my anxiety. I didn’t have to rely on an emotional memory because I had it written down. Emotional memories are linked to strong emotions. While emotions are natural and valid reactions to difficult news, relying solely on emotional memory can cloud judgement and hinder your decision making.
With all forms of liver disease, slowing or stopping the progression is very important. To do this, you need to live a healthy lifestyle by eating healthier, add more fresh foods and lean protein, reduce your intake of processed foods, sodium, and unhealthy fats. While removing alcohol from your diet is equally important, it is essential to seek medical support first. Anyone can experience delirium tremens and other life-threatening complications from suddenly stopping alcohol. So, consult with your doctor first before making this change. “Heavy drinkers who suddenly decrease their alcohol consumption or abstain completely may experience alcohol withdrawal (AW). Signs and symptoms of AW can include, among others, mild to moderate tremors, irritability, anxiety, or agitation. The most severe manifestations of withdrawal include delirium tremens, hallucinations, and seizures.” [1] Avoid unnecessary medication. Aim for a healthy weight, whether that is to lose, gain or maintain. Exercise as able. Get plenty of rest and try to avoid stress. All this will help protect your liver and slow/stop the progression of liver disease.
Take a loved one to the appointment – it helps to have another set of ears. I took my husband Neil, and if I faltered, he stepped in and asked the questions. Also take a pad of paper and that planner I mentioned. Write down the answers to all questions. I asked every single question on the list, and read off every item of food I was currently eating that was on my list. Dr. Swendsen answered every question.
Questions to ask your specialist:
· What can be done to slow/stop the progression?
· What over-the-counter medicine can I take for pain, allergies, etc.?
o Acetaminophen (Tylenol), Ibuprofen, heartburn meds, etc.
· Are there any fluid or food limitations I should follow?
o Increase or decrease water? This may depend on fluid retention.
o Nutrition based on specific case, or underlying conditions.
· What additional tests do I need?
o EGD: upper endoscopy examines esophagus and upper gi tract.
o Colonoscopy: examines the lower gi tract.
o Bone density scan: check strength of bones.
o Biopsy: gathers sample of liver tissue.
· What stage is my liver disease?
o Is there inflammation and fat in the liver, or is there fibrosis and scarring and to what degree?
· What is the cause?
o Excessive alcohol or drug use?
o Hepatitis B or C infection?
o Fatty liver: caused by obesity or diabetes?
· Am I compensated or decompensated?
o Compensated: no/minimal symptoms, liver functioning.
o Decompensated: symptomatic, liver struggling to function.
· Do I need to avoid using or being around household cleaners?
o Overexposure to these toxins can be harmful. Read warning labels carefully.
· Do you recommend any vitamins or supplements?
· Are there other health issues that need to be addressed?
· Do I need to be drained due to ascites and how often?
o If cirrhosis is decompensated, ascites is swelling of the abdomen, which requires draining or other procedures to resolve.
· What symptoms do I need to watch for, and which should I seek help for ASAP? These may include:
o Confusion
o Abdominal or chest pain.
o Fever greater than 101F
o Abdominal swelling that is new or suddenly becomes worse.
o Rectal bleeding, vomiting blood, or blood in the urine.
· Can you check me for Alpha One Antitrypsin Deficiency (simple blood test)? [A protein deficiency that can harm the liver or lungs].
· Do I need to get Hep A/B vaccine?
· What is my MELD Score? [Model for end stage liver disease: this ranges from 6 to 40 and is based on the results from liver specific lab tests].
Also, I recommend taking a list of all the foods you are currently eating. Two months before meeting Dr. Swendsen, I had joined a weight loss program and was still learning what to eat. Learning of his take on my progress was very important. So I showed him my food list and put a check mark next to each good item, and a “NO” next to the ones to avoid.
[1] [1]Richard Saitz, “Introduction to Alcohol Withdrawal,” Alcohol Health and Research World 22, no. 1 (1998): 5.
© Copyright (2023) Susan R. Pryde
Editors: Martha E. Lang, Words of Light Press and Kathy Lambert
Cover Design: James Cairo, Cairo Design
Photos: T. Mak Photo + Film
ISBN: 978-1-957180-02-1
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