Rare Disease Day, February 29, 2012

Join me in raising awareness about autoimmune hepatitis (AIH) and other rare diseases on February 29, 2012, Rare Disease Day.  It is frightening to receive a rare disease diagnosis. Dread and fear were my first reactions to receiving the news that I had a rare liver disease, AIH.  Forming an alliance with other AIH patients and joining forces with other organizations including the National Library of Medicine to share vital resources about AIH and other rare diseases helps me to cope with being chronically ill and having a rare disease.

Here’s the link to learn more about Rare Disease Day events in the U.S.A. and in other countries:

http://www.rarediseaseday.org/

Here’s the link to the National Library of Medicine (NLM) to learn more about their collection of rare disease resources:

http://www.nlm.nih.gov/

The National Institute of Health (NIH) is sponsoring several events to promote awareness of rare diseases.  The NIH is hosting a day of recognition and education about the various rare diseases supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, and the NIH affiliated Institutes and Centers, The Food and Drug Administration’s Office of Orphan Product Development (OOPD), the National Organization for Rare Disorders (NORD), and the Genetic Alliance.  These events are free, no registration fees, and open to the public.  Click on this link to learn more about the NIH’s Rare Disease Day events :

http://rarediseases.info.nih.gov/RareDiseaseDay.aspx

March 1, 2012 is Rare Disease Patient Advocacy Day hosted by the Food and Drug Administration.  To learn more about events held on Rare Disease Patient Advocacy Day, click on this link:

http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/OOPDNewsArchive/ucm277194.htm

Sharing our rare disease stories and resources is a great coping mechanism and self-help exercise for those of us living with a rare disease.  While I wouldn’t call February 29th a c e l e b r a t i o n, it is a time to share information and to take comfort in knowing that we are not a l o n e in our daily struggle to live with our rare diseases.  I encourage you to check out the Rare Disease Day resources, post your photo on the Rare Disease Day Photo collection, and tell your rare disease story to post on their video/story board.  Look for my familiar AIH coffee mug and read my AIH story on their website.  You might find a new friend or AIH buddy to share your rare disease resources with and to reach out to during those dark moments of despair that we experience in our lives.

Namaste,

Mags

I learned some interesting information that I thought was worth sharing with my AIH buddies.  I was informed by my urologists that some medications, including Prednisone, cause the formation of kidney stones.  Sometimes our diet can cause kidney stones to form.  Often, it is our genetic history that make us predisposed to having kidney stones.  Mayo Clinic has some interesting information on the diagnosis and treatment of kidney stones:

http://www.mayoclinic.org/kidney-stones/treatment.html

This is Mayo Clinic’s description of the outpatient surgical procedure performed on me, yesterday, by the University of Virginia’s Medical Center Urologists:

• Ureteroscopic stone removal
  Urologists perform ureteroscopic stone removal to remove stones lodged in the ureter or in the kidney. Patients undergo this outpatient procedure while sedated with general or local anesthesia. A urologic surgeon passes a small ureteroscope into the urethra, through the bladder into the ureter to break up and snare the stone. In some cases, stones are shattered using a laser. Fragments may be passed by the patient or they may be extracted. The surgeon may place a small tube (stent) in the ureter to relieve swelling and promote healing.Mayo Clinic urologists were among the first in the world to perform ureteroscopic stone removal and were also instrumental in refining and improving the procedure.

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The U.S. Department of Health and Human Services, National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) has some wonderful information about kidney stones on their website:

http://kidney.niddk.nih.gov/Kudiseases/pubs/stonesadults/

Kidney stones, one of the most painful of the urologic disorders, have beset humans for centuries. Scientists have found evidence of kidney stones in a 7,000-year-old Egyptian mummy. Unfortunately, kidney stones are one of the most common disorders of the urinary tract. Each year, people make almost 3 million visits to health care providers and more than half a million people go to emergency rooms for kidney stone problems.

Most kidney stones pass out of the body without any intervention by a physician. Stones that cause lasting symptoms or other complications may be treated by various techniques, most of which do not involve major surgery. Also, research advances have led to a better understanding of the many factors that promote stone formation and thus better treatments for preventing stones.

National Kidney & Urologic Diseases Information Clearinghouse (NKUDIC)

What is a kidney stone?

A kidney stone is a hard mass developed from crystals that separate from the urine within the urinary tract. Normally, urine contains chemicals that prevent or inhibit the crystals from forming. These inhibitors do not seem to work for everyone, however, so some people form stones. If the crystals remain tiny enough, they will travel through the urinary tract and pass out of the body in the urine without being noticed.

Kidney stones may contain various combinations of chemicals. The most common type of stone contains calcium in combination with either oxalate or phosphate. These chemicals are part of a person’s normal diet and make up important parts of the body, such as bones and muscles.

A less common type of stone is caused by infection in the urinary tract. This type of stone is called a struvite or infection stone. Another type of stone, uric acid stones, are a bit less common, and cystine stones are rare.

Kidney stones in the kidney, ureter, and bladder.

Urolithiasis is the medical term used to describe stones occurring in the urinary tract. Other frequently used terms are urinary tract stone disease and nephrolithiasis. Doctors also use terms that describe the location of the stone in the urinary tract. For example, a ureteral stone-or ureterolithiasis-is a kidney stone found in the ureter. To keep things simple, the general term kidney stones is used throughout this fact sheet.

Gallstones and kidney stones are not related. They form in different areas of the body. Someone with a gallstone is not necessarily more likely to develop kidney stones.

Read the rest of this article to learn some great information about the following topics related to kidney stones:

• Who gets kidney stones?
• What causes kidney stones?
• Foods and Drinks causing Oxalate
• What are the symptoms of kidney stones?
• How are kidney stones diagnosed?
• Preventing kidney stones
• How are kidney stones created?
• Lifestyle changes
• Medical therapy
• Surgical treatment
• Extracorporeal Shock Wave Lithotripsy
• Percutaneous Nephrolithotomy
• Ureteroscopic Stone Removal
• Hope through research
• Points to Remember
• For more information

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I have learned some interesting news about stents, the device inserted into my ureter during surgery to remove the kidney stone:

http://kidney-stones.emedtv.com/stent/stents-for-kidney-stones.html

Stents for Kidney Stones

A stent (a flexible hollow tube) is sometimes used as part of a person’s treatment for kidney stones. Stents may be placed when there is swelling after a large kidney stone has been removed, when a stone cannot be removed, or if there is an obstruction in the ureter — the tube that carries urine from your kidneys to the bladder. Any discomfort a stent for kidney stones causes usually goes away in a few days.

What Are Stents for Kidney Stones?

A stent is a flexible hollow tube that keeps the ureter open. (Your ureters are narrow tubes that carry urine from the kidneys to your bladder.) One end of the stent curls up into the kidney, while the other end curls into the bladder. The stent has several holes in it that allow urine to drain from the kidney into your bladder.

How Are Stents for Kidney Stones Removed?

Your doctor will tell you when the stent should be removed. Stent removal is done as an outpatient office procedure, meaning you won’t have to stay in the hospital to have the stent removed.

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I found another good website that gives great details about the stent used in my kidney stone removal:

http://www.bui.ac.uk/PatientInfo/ureterstent.html

Bristol Urological Institute:  Having a Ureteric Stent – What to Expect and How to Manage

Introduction
In patients who have, or might have, an obstruction (blockage) of the kidney, an internal drainage tube called a ‘stent’ is commonly placed in the ureter, between the kidney and the bladder. This is placed there in order to temporarily relieve the obstruction.

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In case you are wondering what does it feel like to have a kidney stone procedure like mine, it was quite painful.  I have had my kidney stone for over a year.  My 4mm kidney stone was diagnosed in 2011 following an excruciatingly painful trip to the local ER.  Evidently, it had begun moving around in the left kidney trying to move out.  The kidney stone movement caused me some of the worst pain of my life.  Then, the pain stopped until December, 2011 when it finally escaped my left kidney and got stuck in the ureter.  This second movement caused another trip to the local ER and an overnight in the Urology guest wing of the local hospital.  I was discharged with a prescription for generic Flomax and Oxycodone for pain.  Following the New Year celebration, I returned to the ER in January, 2012 – same complaints, same kidney stone.  Well, the kidney stone tried to make it’s way to my bladder, but it got embedded in the wall of my ureter, instead.  It didn’t matter how much liquid I drank or what type of food that I ingested, the kidney stone was stuck. I had a second overnight in the Urology guest quarters at UVA and released with more generic Flomax and more pain meds.  My docs had expectations that the stone would simply fall into my bladder and make it’s way out via the urine flow.  IT NEVER HAPPENED!  At 2 a.m. on Friday morning, I returned to the local ER and informed the doc that I wasn’t leaving the hospital until someone removed that 4mm kidney stone.  He agreed that it had to come out, this time.  Long story short, I had a procedure under anesthesia to remove the kidney stone.  My urologist left a stent in place to promote healing and assist with urination.  I can’t really feel any difference between before the stent was put in and after the stent was put in.  I still have to urinate frequently, and I do experience a bit of a burning sensation when I urinate.  I am seeing what seems to be a massive amount of blood in my urine, but from what I’ve read in the links above, this bloody urine is typical for someone who has experienced a kidney stone removal.  I am not nauseous.  I do feel a bit achy in my back from the kidney stone removal procedure and in my throat from the anesthesia/tube placement.  Overall, it wasn’t the worst or most painful surgical procedure that I have experienced in my life.

 I am turning cartwheels over having the stone removed, and I am not bothered about having the stent removed in the future.  One day at a time, that’s all anyone of us can ask for.  Having a kidney stone may be related to my autoimmune disorders, and having kidney stones seems to be a part of my family’s genetic heritage.  My mother’s father (my maternal grandfather) suffered from kidney stones, and my mother had kidney issues before her death.  I will be mindful of my diet and to make sure that I stay hydrated.  I don’t think the kidney stone removal procedure has negatively impacted my AIH in any way.  I was informed by my urologists that Prednisone can cause the formation of kidney stones.  Now, that’s something to think about.  Please let me know your thoughts and comments on this topic.  I hope you’ll share your experiences with me.  For my family and friends, thank you for your kind words of sympathy, support, prayers, and love.  Thank you to my excellent urologists at UVA Health System for taking excellent care of me while I was receiving medical treatment for my kidney stones.

http://uvahealth.com/services/kidney-care/conditions-treatments/11725

Mags Pearls of Wisdom regarding kidney stones:

• GO TO THE ER if you are having painful urination, pain in your kidney area, frequent urination, nausea, and bloody urine
• DO NOT TALK YOURSELF OUT OF GOING TO THE ER – kidney stones can block the flow of urine causing permanent damage
• LISTEN TO YOUR INTUITION, YOUR INNER VOICE – most of the time, you are right if you think you are sick, you ARE
• GET MEDICAL TREATMENT – don’t self-diagnose – kidney disease is serious business

I was a bit embarrassed to return to the local ER on my 3rd trip with the same stone.  Part of me thought I was being a big baby.  But, the pain was overwhelming.  When the first ultrasound was done, the test showed that my left kidney had clouded over and was totally blocked due to the embedded kidney stone.  My right kidney  was shutting down; henceforth, the difficulty with urination.  I was not imagining the pain or the seriousness of the situation.  My intuition told me that something was seriously wrong with my kidneys.  Listen to your inner voice and seek medical treatment when you are sick or something is not working right in your body!

Namaste,

Mags

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Humor can make a difference in a scary situation.  As I was being prepped for surgery, I had a team of young, beautiful medical professionals all around me.  Some of them were loosening my hospital gown in preparation for removing it during surgery.  As the anesthesiologist was looking me in the eye, while administering the drug that would put me to sleep, she said, “Don’t be afraid, Mrs. Hoomes, we’re all right here with you and we’re going to take good care of you.”  I calmly replied, “I know exactly what you must be thinking.  You just can’t believe that this is my natural body and you are amazed that I haven’t had any plastic surgery on it.”  I went unconscious to the sounds of their laughter echoing in the surgery theatre Sometimes, you just have to laugh…

http://www.ncbi.nlm.nih.gov/pubmed/11686842

Autoimmune hepatitis in the Indian subcontinent: 7 years experience.

PMID:

11686842

[PubMed - indexed for MEDLINE]

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The Indian Journal of Pathology & Microbiology shed some additional light on this topic in this article:

http://www.ijpmonline.org/article.asp?issn=0377-4929;year=2009;volume=52;issue=3;spage=297;epage=303;aulast=Joshi

Year : 2009  |  Volume : 52  |  Issue : 3  |  Page : 297-303

Approach to diagnosis of auto-immune hepatitis

Megha Joshi1, Urmila Khettry2 1 Department of Pathology, Lawrence General Hospital, Lawrence, USA 2 Tufts University School of Medicine, Department of Anatomic Pathology, Lahey Clinic Medical Center, Burlington, USA

Auto-immune hepatitis (AIH) is one of the chronic liver diseases, seen predominantly in women, resulting from dysregulated immune mechanisms not yet clearly defined. Based on a combination of clinical and laboratory parameters with both positive and negative weights, the International AIH Group devised a scoring system in 1993. The system was modified in 1999 and has proven useful for both diagnostic and research purposes. This review deliberates on the clinical, immunological and histological features of this entity.

Brief Summary & Objectives:

Auto-immune hepatitis (AIH) is one of the chronic liver diseases resulting from dysregulated immune mechanisms which are not yet clearly defined. The diagnosis is based on a constellation of clinical, serological, and histopathological findings. Clinically, it is more often encountered in women than men and may be seen in both adult and pediatric populations. Seropositivity for auto-antibodies is found in most cases. Histologically, the typical findings consist of periportal, portal, and lobular chronic inflammation with prominent plasma cells. Most AIH patients respond to immunosuppressive therapy. Liver transplantation is a valid treatment option for end-stage liver disease resulting from AIH as, in a transplanted liver, AIH may recur.

Clinical Data:

Clinical presentation of AIH patients is variable. ^{[8],[9],[10],[11]} Elevated liver enzymes may be found on screening asymptomatic patients or those who seek medical attention for other conditions such as arthralgias, thyroid disease, and other disorders of putative autoimmune etiology.^[12],[13] A few patients may have fulminant hepatic failure or rapidly progressive hepatitic disorder of recent onset. ^[14],[15] Majority of the patients present with a chronic disease with lethargy or low-grade flu-like symptoms or even liver decompensation due to cirrhosis. ^[16]

Most cases of AIH are seen among Caucasian and Japanese population. ^[17] However, it is now being reported from other regions of the world, including India, due to increasing awareness and recognition of characteristic findings. ^{[18],[19],[20]} AIH is almost eight-fold more common in women as compared to men and is seen in pediatric population as well. The disease seen in children is often more rapidly progressive than that encountered in adult population. Although often not performed, testing for HLA phenotypes associated with AIH i.e., A1, B8, DR3 or DR4, provides important laboratory support for the diagnosis of AIH. ^[21]

Liver function tests in AIH are usually more ”hepatitic” than ”cholestatic” and reflected biochemically as elevation of transaminases rather than alkaline phosphatase or bilirubin. However, a completely normal profile may be seen during the quiescent periods interrupted by a severe hepatitic profile during the disease “flare-ups”. Disease progression with the development of cirrhosis may be biochemically associated with elevated bilirubin and evidence of synthetic dysfunction.

Hypergammaglobulinemia with disproportionately increased IgG and serologic positivity for autoantibodies are the important defining features of AIH. ^{[22],[23],[24]} Auto-antibodies are not specific for AIH. However, their presence in the serum is of diagnostic importance and further help in categorizing the various subtypes of AIH. As a rule, auto-antibodies should not be used to monitor therapy, predict AIH activity or outcome. ^[22] Anti-nuclear antibodies (ANA) are encountered in about 80% of AIH patients in titers greater than 1:40 and anti-smooth muscle antibodies (ASMA) in titers greater than 1:40 are seen in approximately 70%. The ANA associated with AIH usually give a homogeneous pattern, due to reactivity against histones and DNA, but other patterns may be seen as well. ^[25],[26] ASMA are directed against several cytoskeletal elements. ^[27] Both ANA and ASMA, in low titers, may be seen in other chronic liver diseases such as hepatitis C (HCV), Wilson disease, alcohol-related liver disease, or nonalcoholic steatohepatitis. ^{[28],[29],[30],[31]} A case of acute hepatitis E with serum ANA and ASMA positivity has also been reported. ^[32] Other auto-antibodies that may be seen in AIH include anti-liver kidney microsomal (anti-LKM), anti-soluble liver antigen (anti-SLA), anti-liver pancreas (anti-LP), anti-asialoglycoprotein (anti-ASGPR) antibodies, and also pANCA. ^{[33],[34],[35],[36]} The target protein for anti-LKM1 antibody is P450(CYP)2D6 and is seen in patients with DRB1*0701 allele.

Based on clinical and serological parameters, AIH cases have been categorized into three subtypes ^[37] Type I, Type II and Type III.

Type I is the most common form of the disease. Seen mostly in adult women serologically, it is characterized by the presence of high-titer ANA and/or ASMA; Typ e II, seen more frequently in the pediatric population, is often associated with severe clinical disease and positive anti-LKM in the serum and these patients are usually negative for ANA or ASMA. Type II AIH was earlier sub-classified into Type IIa that included patients with characteristics described before, and Type IIb representing HCV patients with low-titer anti-LKM in their sera. The latter category is now considered clinically irrelevant and these cases, with both anti-HCV and anti-LKM positivity, are viewed as essentially chronic hepatitis C with perhaps some autoimmune features. AIH patients with other autoantibodies, like anti-SLA, anti-LP, or anti-ASGPR, are categorized as Type III , but clinically, this group does not seem to have any particular distinctive characteristics. A case of IgG4-associated AIH with elevated serum IgG4 and IgG4-bearing plasma cells in the liver has been recently reported. ^[38]

Most patients with AIH respond to corticosteroids with or without azathioprine. ^[39] AIH-related cirrhosis [Figure 9] may develop despite proper therapy or when treatment is delayed for any reason. These patients presenting with late-stage disease may require liver transplantation. Recurrence of AIH in the allograft has been reported. ^[40],[41]

Click on the above link to read the remainder of this article as it gives a breakdown on each aspect of AIH including pathology, overlap syndromes, differential diagnostic issues, summary & conclusions, and references.  It’s a good practice to explore the reference section of an article.  The reference section leads to more information on the article’s topic – autoimmune hepatitis.

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The Journal of Negative Results in Biomedicine provides more information about AIH diagnosis in India with this article:

http://www.biomedcentral.com/1471-230X/5/27

Autoimmune hepatitis in India: profile of an uncommon disease

Gourdas Choudhuri^*, Sanjay K Somani, Chalamalasetty S Baba and George Alexander

• * Corresponding author: Gourdas Choudhuri gourdas@satyam.net.in

Author Affiliations

You might have gleamed from my posts that I am a Democrat, and I support health care reform in our country.  With the mounting costs of medical bills and insurance premiums, it seems more affordable to die than to continue living.  Thanks to Dr. Elisabeth Kubler-Ross, I formed some very strong ideas about death and dying as a young college junior in the late 1980s.  Over the years, my ideas have only gotten stronger.  I’ve witnessed the long, agonizing death of my father with lung cancer.  My mother rarely knew any peace at all during her tumultuous life due to several mental illnesses that were still being treated quite archaically during the 1950s and even through the 1990s when families were embarrassed to admit that a child was mentally ill.  My mom’s poor health included several autoimmune disorders which I inherited, too.

I researched and wrote my personal Death with Dignity statement and composed my Living Will  in November, 2010 when I decided to stop taking the standard combination of Prednisone and an immunosuppressant (generic Cellcept for me, mycophen0late mofetil).  I had reached a point when I truly felt that I couldn’t function any longer living in a mind-befuddling haze of generic Cellcept and a low dose of Prednisone.  I have never been able to tolerate medications, well.  Both Prednisone and generic Cellcept can trigger medicatation-induced anxiety atttacks, as they did in my case.

I had never experienced a panic attack or anxiety until I had been taking Prednisone and an immunosuppressant for about 3 months.  These panic attacks increased as time went by until I was experiencing several panic attacks, daily.  These feelings were unbearable for me.  I wrote my Death with Dignity and Living Will statement, and I told my husband that I intended to stop taking the AIH medications as they had become really toxic for me.  He honored my wishes and vowed to honor my Death with Dignity statement no matter what happened next.

Miraculously, I was able to stay in biological remission for almost a year without taking a corticosteroid or an immunosuppressant.  But, I had a recent flare in the fall, and I am once more back on Prednisone.  However, I am not as troubled by taking the meds or fearing the anxiety/panic attacks, this time around.  I found a state of peace when I wrote my Living Will and my Death with Dignity statement.  I know my husband will stand by me until the end and defend my right to die with dignity.  Do you have that peace of mind?

Here’s a link to the inspiration article written by a medical doctor, and I hope you find it as inspiring as me.

http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/

Nexus – How Doctors Die – It’s Not Like the Rest of Us, But It Should Be

Author:  Ken Murray, MD, is Clinical Assistant Professor of Family Medicine at USC.

Excerpt from the post from January 4, 2012:

“It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.”

Happy 2012 and namaste, my friends,

Mags

Melting snowman cookie or Mags on Prednisone

This melting snowman cookie makes me laugh.  This is an accurate depiction of the way my body feels after my morning dose of Prednisone sinks in.  I try to describe this sensation to my hubby by telling him that I feel like my body is melting.  For those of you on Prednisone for AIH and other autoimmune disorders, I bet you can relate to this odd sensation.

What would the holidays be without cookies, cakes, chocolate, smoked turkey and ham, and an avalanche of delicious holiday treats?  As I’ve mentioned before, I am a southern gal with a fondness for cooking during the holidays.  H O W E V E R, I don’t always EAT what I cook, these days, because many holiday treats are not good for those of us with autoimmune hepatitis (AIH) and other forms of liver disease.

Without sounding so negative in this post, I’ll try to balance the list of bad things to eat with a list of good things to eat for those of us living with AIH and liver disease.  Let’s begin with smoked, cured, salty, and fatty meats.  Yeah, this part really sucks in my opinion , but stop crying and pull on your big girl panties.  Scratch these tasty, holiday treats off your list, permanently.  Here’s a resource for you to read if you are in doubt as to whether you should heed these pearls of wisdom or not:

http://www.nlm.nih.gov/medlineplus/ency/article/002441.htm

MedLinePlus – Diet – Liver Disease

According to MedLinePlus,  a person with liver disease must eat a special diet. This diet protects the liver from working too hard and helps it to function. Proteins  help the body repair tissue. They prevent fatty build-up and damage to the liver cells.  In people with severely damaged livers, proteins are not properly processed. Waste products may build-up and affect the brain. Restricting the amount of protein in the diet can reduce the chance that toxic waste products will build-up.  The body stores carbohydrates in the form of glycogen. Increasing carbohydrates in the diet helps preserve glycogen stores. People with liver disease may need to increase their intake of carbohydrates in proportion to protein.

Salt in the diet may worsen fluid build-up and swelling in the liver, because salt causes the body to retain water. Most people with severe liver disease must restrict the amount of sodium in their diet. Because liver disease can affect the absorption of food and the production of proteins and vitamins, your diet may influence your weight, appetite, and the amounts of vitamins in your body. Do not limit protein too much, because it can cause deficiencies of certain amino acids.

The dietary recommendations may vary, depending on how well your liver is working. It is  important to be under the care of a doctor, because malnutrition can lead to serious problems.   In general, recommendations for patients with severe liver disease may include:

•  large amounts of carbohydrate foods. Carbohydrates should be the major source of calories in this diet.
•  moderate intake of fat, as prescribed by the health care provider. The increased carbohydrates and fat help preserve the protein in the body and prevent protein breakdown.

•  About 1 gram of protein per kilogram of body weight. This means that a 154-pound (70-kilogram) man should eat 70 grams of protein per day. This does not include the protein from starchy foods and vegetables. A person with a severely damaged liver may need to eat less protein than this, and may even be limited to small quantities of special nutritional supplements. Avoid limiting protein too much, because it can lead to malnutrition.

•  Vitamin supplements, especially B-complex vitamins.

•  Reduce the salt you consume (typically less than 1500 milligrams per day) if you are retaining fluid.
• EAT a balanced daily diet of fruits, vegetables, cooked lean fish, poultry, and meat.
• afternoon snacks are good for you if you snack on fruit, nuts, and whole-grains (unless you have Celiac’s Disease).

The Hepatitis Foundation International has some good advice on nutrition and diets for people like us:

Caring For Your Liver - http://www.hepfi.org/living/liv_caring.html

Liver Care

Your liver depends on you to take care of it . . . so it can take care of you. It serves as your body’s engine, pantry, refinery, food processor, garbage disposal, and “guardian angel.” The trouble is, your liver is a silent partner; when something’s wrong it does not complain until the damage is far advanced. So it needs your help every day to keep it healthy and hepatitis-free. To do that, you need to eat a healthy diet, exercise, get lots of fresh air, and avoid things that can cause liver damage.

• Avoid excessive alcohol.

Most people know that the liver acts as a filter and can be badly damaged by drinking too much alcohol. Liver specialists suggest that more than two drinks a day for men – and more than one drink a day for women – may even be too much for some people.   One of the most remarkable accomplishments of this miraculous organ is its ability to regenerate. (Three quarters of the liver can be removed and it will grow back in the same shape and form within a few weeks!) However, overworking your liver by heavy alcohol consumption can cause liver cells (the “employees” in the power plant) to become permanently damaged or scarred. This is called cirrhosis.

Don't let this happy to you - eat, drink & protect your liver!

• Avoid drugs and medicines taken with alcohol.

Medicines – especially the seemingly harmless acetaminophen (the active ingredient in Tylenol and other over-the-counter medications) – should never be taken with alcoholic beverages. Many prescribed and over-the-counter drugs and medicines (including herbal medications) are made up of chemicals that could be potentially hazardous to your precious liver cells, especially taken with alcohol.

Poor nutrition is rarely a cause of liver disease, but good nutrition in the form of a balanced diet, may help liver cells damaged by hepatitis viruses to regenerate, forming new liver cells. Nutrition can be an essential part of treatment. Many chronic liver diseases are associated with malnutrition.

• Watch the Protein

To quickly determine your daily protein in grams, divide your weight in pounds by 2. Too much daily protein may cause hepatic encephalopathy (mental confusion). This occurs when the amount of dietary protein is greater than the liver’s ability to use the protein. This causes a build up of toxins that can interfere with brain function. Protein is restricted in patients with clinical evidence of encephalopathy. However, controversy exists regarding the type of protein a diet should contain. Vegetable and dairy protein may be tolerated better than meat protein. Medications, such as lactulose and neomycin, may be used to help control hepatitis-related encephalopathy. Due to the body’s need for proteins, protein restriction should only be undertaken with a doctor’s advice.

• Watch the Calories.

Excess calories in the form of carbohydrates can add to liver dysfunction and can cause fat deposits in the liver. No more than 30% of a person’s total calories should come from fat because of the danger to the cardiovascular system. To figure out your daily calorie needs, you’ll need a minimum of 15 calories a day for each pound you weight. Watch the Salt Good nutrition also helps to maintain the normal fluid and electrolyte balances in the body. Patients with fluid retention and swelling of the abdomen (ascites), or the legs (peripheral edema), may need diets low in salt to avoid sodium retention that contributes to fluid retention. Avoiding foods such as canned soups and vegetables, cold cuts, dairy products, and condiments such as mayonnaise and ketchup can reduce sodium intake. Read food labels carefully as many prepared foods contain large amounts of salt. The best-tasting salt substitute is lemon juice.

• Watch Vitamins A and D

Excessive amounts of some vitamins may be an additional source of stress to the liver that must act as a filter for the body. Mega-vitamin supplements, particularly if they contain vitamins A and D, may be harmful. Excess vitamin A is very toxic to the liver.

• Beware of Alcohol

You’ll need to stop drinking completely to give your liver a break – a chance to heal, a chance to rebuild, a chance for new liver cells to grow. This means avoiding beer, wine, cocktails, champagne, and liquor in any other form. If you continue to drink, your liver will pay the price, and if your doctor is checking your liver function tests, it may be hard to determine if a change in a test means there has been damage to your liver due to the disease itself or because of the alcohol.

• Beware of Alcohol and Acetaminophen

Acetaminophen is an ingredient in some over-the-counter pain relievers, and is contained in many over-the-counter drugs used for colds or coughs. Taken with alcohol, these products can cause a condition called sudden and severe hepatitis which could cause fatal liver failure. Clearly, you should never combine these two substances. If you have any doubt about what medicines to take simultaneously, ask your doctor.

• Beware of “Nutritional Therapies”

Herbal treatments and alternative liver medicines need to undergo rigorous scientific study before they can be recommended. “Natural” or diet treatments and herbal remedies can be quite dangerous. Plants of the Senecio, Crotalaria and Heliotopium families, plus chaparral, germander, comfrey, mistletoe, skullcap, margosa oil, mate tea, Gordolobo yerba tea, pennyroyal, and Jin Blu Huan are all toxic to the liver.

The National Liver Foundation offers some terrific nutrition and diet tips for patients with liver disease, like us.

http://www.nlfindia.com/patients/diet_nutrition.asp

Anatomy & Physiology of Liver:

What should I avoid eating and drinking while on a liver disease diet?  The foods that you need to avoid or limit depend on the type of liver disease and health problems you have. Following are some of the dietary changes that you may need to make:

• Sodium: You may need to decrease the amount of sodium in your diet. Sodium causes your body to retain (hold on to) fluids. When your body holds on to fluids, you will have swelling. Your caregiver may suggest that you limit or avoid high-sodium foods. Your caregiver will give you more information about a low-sodium diet. Some foods that contain high amounts of sodium are the following:
•     Bacon, sausage and deli meats.

•     Canned vegetables and vegetable juice.

•     Frozen dinners.

•     Packaged snack foods like potato chips and pretzels.

•     Soy, barbecue, and teriyaki sauces.

•     Soups.

•     Table salt.

• Liquids: You may also have to drink fewer liquids if you have swelling. Liquids include water, milk, juice, soda, and other beverages. It also includes any food that contains liquid, such as soup. This also includes food that melts when it is not cold, such as gelatin. Talk to your caregiver about the amount of liquid you may drink each day.

• Alcohol: Alcohol may make your liver disease worse. Avoid alcoholic drinks such as beer, wine, hard liquor (whiskey, gin, vodka) or mixed drinks (drinks made with hard liquor). Talk to your caregiver if you have questions about alcohol in your diet.

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Okay, I know this isn’t the best nutrition and diet news to receive during the holidays.  For AIH patients and other folks with liver disease, the holiday focus is N O T going to be about eating, drinking and being merry.  Let’s end on a positive note and put this post into perspective, shall we?  It’s the simple pleasures that mean the most during the holidays.  It’s the time we spend with family and friends.  It’s the opportunities we receive to pay it forward and help someone in need.  It’s another chance to focus less on our little world of pain and misery and focus on making this world a better place to live in some small way.

Find your happy place and dwell there for the holidays while counting your blessings.  After all, we are still here.

Merry Christmas and best holiday wishes to you and yours,

Mags

Merry Christmas from Maxine

As noted on this blog before, most autoimmune hepatitis (AIH) patients have more than one autoimmune disorders.    AIH is my primary autoimmune disorder because it wreaks the most havoc on my body – my liver.  Along with AIH, I have Hashimoto’s Thyroid Disease.  Additionally, these health issues are common to many AIH patients  hypertension, osteoporosis, diverticulosis, celiac disease, prediabetes, periodontal disease, and Vitamin D deficiency.   I  need to manage my chronic pain without causing  further damage to my diseased liver.

http://www.livestrong.com/article/19395-effect-ibuprofen-liver/

The Effect of Ibuprofen on the Liver

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Until I visit my GI/hepatologists, I’ll find another solution for my chronic pain management that doesn’t involve taking a daily dose of generic ibuprofen.  Perhaps, a few more minutes on the elliptical machine will help my leg cramps and an hour of yoga might work to quiet my mind before bedtime.  I’ll post a follow up to this discussion in January, 2012 when I can share my medical professionals’ pearls of wisdom with you about taking ibuprofen for daily chronic pain management as an AIH patient.  Until then, please check out these interesting resources and share your comments with me:

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http://www.ehow.com/about_5185317_effect-ibuprofen-liver.html

The Effect of Ibuprofen on the Liver

One of the functions of the liver is to clear drugs from the body, but excessive doses of these medicationscan damage the liver. High doses prevent the liver from eliminating the drugs from the body, or in some people, liver metabolism is slowed. The liver becomes inflamed and no longer functions properly, eventually becoming damaged. In extreme cases, liver failure results. Although excessive doses of ibuprofen may affect the liver, ibuprofen has a lower risk of liver damage than acetaminophen, which damages the liver at doses only slightly higher than the recommended dose.

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http://www.mayoclinic.com/health/daily-aspirin-therapy/HB00073

Mayo Clinic – Heart Disease

Daily aspirin therapy:  Understand the benefits and risks

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http://www.cdc.gov/features/heartmonth/

Centers for Disease Control and Prevention

CDC Features – February is American Heart Month

Namaste,

Mags

http://www.futurity.org/top-stories/false-alarm-can-spark-autoimmune-disease/

False alarm can spark autoimmune disease

Here’s the link to the original study about this topic:

http://onlinelibrary.wiley.com/doi/10.1002/eji.201041034/abstract

Negative regulation of signaling by a soluble form of toll-like receptor 9

Issue

European Journal of Immunology

Volume 41, Issue 8, pages 2176–2184, August 2011

Cooking with cinnamon was good for my prediabetes, according to research, because cinnamon could have an insulin-like property to lower glucose and other restorative properties according to this article posted on DiabetesHealth,

This article was originally published in Diabetes Health in June, 2008.

Here’s Mayo Clinic’s answer to the question about cinnamon’s connection to managing diabetes:

http://www.mayoclinic.com/health/diabetes/AN00939

Question

Diabetes treatment: Can cinnamon lower blood sugar?

Is it true that cinnamon can lower blood sugar in people who have diabetes?

Answer

from Maria Collazo-Clavell, M.D.

Cinnamon - DiabetesHealth

However, cooking with cinnamon may not be good for my autoimmune hepatitis (AIH) and my liver.  I am actively seeking more information about AIH relapse now that I am experiencing my first AIH relapse since going into biological remission in 2010.  Until my AST/ALT’s come back to normal ranges, I’m trying to safeguard and nurture my inflamed, enlarged liver by putting only restorative, nutritional food into my body.  Unfortunately, I read some negative remarks about cinnamon and cinnamon’s impact on the liver for those of us with liver disease.

Here’s some interesting information to consider if you cook with cinnamon or take cinnamon as a health supplement AND you have liver disease:

http://www.mskcc.org/cancer-care/herb/cinnamon

Memorial Sloan-Kettering Cancer Center

About Herbs, Botanicals, & Other Products – Cinnamon

Clinical Summary

Cinnamon refers to several plants that belong to the genus Cinnamomum, native to Southeast Asia. The bark, rich in essential oil, is used as a flavoring agent and as a spice. Medicinal uses include appetite stimulation, treatment of arthritis, inflammation, and dyspepsia. In traditional Chinese medicine, cinnamon is used with other herbs in decoctions for cold. In vitro studies have demonstrated that cinnamon has antioxidant ^{(2) (3)}, anti-inflammatory ⁽⁴⁾, immunomodulatory ^{(5) (6)}, antimicrobial ^{(7) (8)} and antitumor ⁽²⁰⁾ properties. It has been studied in clinical trials for type 2 diabetes but results are conflicting ^{(9) (10) (11) (12)}. However, conclusions from a meta analysis suggest benefits of cinnamon and cinnamon extract in improving fasting blood glucose in patients with type 2 diabetes ⁽²¹⁾.

Use of cinnamon flavored products has been associated with oral adverse effects ^{(13) (14) (15)}. Certain cinnamon products are high in coumarin content that can cause liver damage and can also interact with other drugs ⁽¹⁶⁾.

Cinnamon - Memorial Sloan-Kettering Cancer Center

MedLinePlus offers this information about using cinnamon as a dietary supplement or cooking with cinnamon:

http://www.nlm.nih.gov/medlineplus/druginfo/natural/1002.html

Cassia cinnamon

How effective is it?

Insufficient evidence to rate effectiveness for…

• Diabetes. Early studies suggested that cassia cinnamon might be effective for controlling type 2 diabetes. But now, there is conflicting research. Some studies show benefit and other studies show no benefit.
• Loss of appetite.
• Muscle and stomach spasms.
• Bloating.
• Intestinal gas.
• Vomiting.
• Diarrhea.
• Common cold.
• Impotence.
• Bed wetting.
• Menstrual problems.
• Chest pain.
• High blood pressure.
• Kidney problems.
• Cancer.
• Other conditions.

It is POSSIBLY UNSAFE when taken in large amounts, long-term. Taking large amounts of cassia cinnamon might cause side effects in some people. Cassia cinnamon can contain large amounts of a chemical called coumarin. In people who are sensitive, coumarin might cause or worsen liver disease.

Special precautions & warnings:

Diabetes: Cassia cinnamon can affect blood sugar levels in people with diabetes. Watch for signs of low blood sugar (hypoglycemia) and monitor your blood sugar carefully, if you have diabetes and use cassia cinnamon in amounts larger than the amounts normally found in food.

Liver disease: Cassia cinnamon contains some chemicals that might harm the liver. If you have liver disease, don’t take cassia cinnamon in amounts larger than the amounts normally found in food.

Are there interactions with herbs and supplements?

Prednisone, 20mg

Prednisone – the wonder drug that all autoimmune hepatitis (AIH) patients usually take to initially reduce our high liver enzymes.  Yep, this is me whining about taking  Prednisone, ONCE MORE.  I HATE TAKING THIS DRUG!  From what I can tell from most AIH folks, you hate taking Prednisone, too.  Why do we all hate taking Prednisone so much if it saves our lives and keeps our immune system from totally killing our livers?  IT’S THE AWFUL PREDNISONE SIDE EFFECTS that we actually loathe.

NAUSEA is making me miserable, every morning, now that I’m back on the Prednisone merry-go-round.  I call it a merry-go-round because it’s an accurate description of the side effects that I feel when I am on Prednisone.  Remember those merry-go-rounds on the playgrounds of our youth?  We would hop on, and another kid would push the merry-go-round, violently, spinning us around and around until we were dizzy and often nauseous from the ride?  I actually thought that was fun back in the day.  But, this Prednisone daily nausea and dizziness is no joy ride for me.  Nausea is a symptom of AIH, too.  Perhaps, I’m feeling a disease symptom rather than a medication side effect.  It’s impossible to distinguish, at this point.  Ironically, the NDDIC does not list nausea as a side effect of Prednisone, although my doctors have told me that nausea is a drug side effect.

How do you combat the Prednisone side effects?  Are you feeling any side effects from taking Prednisone?  I would really like to know.  Perhaps, I could find a better way to cope with this toxic, life-saving drug from your pearls of wisdom.  Thankfully, I decreased my daily dosage, this week.  I am finished with the 20mg dose of Prednisone that I took for 2 weeks when my lab results revealed escalated liver enzymes in the hundreds.  Now, I’m taking 15mg daily for the next 2 weeks.  I have my labs run, next week, and I hope that my liver enzymes are back  within normal ranges.  I follow the prescription, faithfully.  I take the Prednisone with food, following a light, nutritional breakfast.  I usually have a small bowl of hot, rice cereal for breakfast with coffee.  But, the nausea occurs within 30 minutes after taking each dose.  The nausea doesn’t subside for another 30 minutes or so.

I’ve been polling AIH Internet resources to find more information about nausea, autoimmune hepatitis (AIH) and Prednisone.  Here are some interesting results:

http://www.cpmc.org/advanced/liver/patients/topics/hep_autoimmune.html

The CPMC Sutter Health Autoimmune Liver Disease website doesn’t list nausea as a side effect of Prednisone or a symptom of AIH.

http://www.medicinenet.com/prednisone-oral/article.htm

MedicineNet.com lists nausea as a side effect of Prednisone.

prednisone – oral, Deltasone

HOW TO USE: Take this medication by mouth, with food or milk to prevent stomach upset, as directed by your doctor. Take the tablet form of this medication with a full glass of water (8 ounces/240 milliliters) unless your doctor directs you otherwise. If you are using the liquid form of this medication, carefully measure the dose using a special measuring device/spoon. Do not use a household spoon because you may not get the correct dose. If you are prescribed only one dose per day, take it in the morning before 9 A.M.Take this medication exactly as directed by your doctor. Follow the dosing schedule carefully. The dosage and length of treatment are based on your medical condition and response to treatment. If you are taking this medication on a different schedule than a daily one (such as every other day), it may help to mark your calendar with a reminder.Do not stop taking this medication without consulting your doctor. Some conditions may become worse when this drug is suddenly stopped. Also, you may experience symptoms such as weakness, weight loss, nausea, muscle pain, headache, tiredness, dizziness. To prevent these symptoms while you are stopping treatment with this drug, your doctor may reduce your dose gradually. Consult your doctor or pharmacist for more details. Report any new or worsening symptoms immediately.Tell your doctor if your condition persists or worsens.

SIDE EFFECTS: Nausea, vomiting, loss of appetite, heartburn, trouble sleeping, increased sweating, or acne may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly.Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.Tell your doctor right away if any of these unlikely but serious side effects occur: muscle pain/cramps, irregular heartbeat, weakness, swelling hands/ankles/feet, unusual weight gain, signs of infection (such as fever, persistent sore throat), vision problems (such as blurred vision), vomit that looks like coffee grounds, black/bloody stools, severe stomach/abdominal pain, mental/mood changes (such as depression, mood swings, agitation), slow wound healing, thinning skin, bone pain, menstrual period changes, puffy face, seizures, easy bruising/bleeding.This medication may infrequently make your blood sugar level rise, which can cause or worsen diabetes. Tell your doctor right away if you develop symptoms of high blood sugar, such as increased thirst and urination. If you already have diabetes, be sure to check your blood sugars regularly. Your doctor may need to adjust your diabetes medication, exercise program, or diet.A very serious allergic reaction to this product is rare. However, get medical help right away if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.

http://guideline.gov/content.aspx?id=23926

The National Guideline Clearinghouse (NGC) doesn’t list nausea as a AIH symptom or Prednisone side effect in their autoimmune hepatitis guideline summary.

http://liversociety.org/html/autoimmune_hepatitis.html

The Liver Society Website information does include nausea as a symptom of autoimmune hepatitis. But, nausea is not listed as a Prednisone side effect on the Liver Society AIH information.

Symptoms of Autoimmune Disease

Fatigue is probably the most common symptom of autoimmune hepatitis. Other symptoms include

enlarged liver
jaundice
itching
skin rashes
joint pain
abdominal discomfort
fatigue
spider angiomas (abnormal blood vessels) on the skin
nausea
vomiting
loss of appetite
dark urine
pale or gray colored stools

It’s mystifying and puzzling to me that I could probably poll AIH informational resources all day long and find such a big dichotomy in the AIH information presented on these informational sites.  Meanwhile, I’m munching on Pringles 100 calorie pack, Original chips and sipping on Canada Dry Diet Ginger Ale to get me through my morning nausea.  It’s working for now, and my nausea has ended for the day.  And, yes, I know that those salty Pringles are bad for my AIH   Geeez, it’s always something, isn’t it?

Please share your Prednisone experiences with me.  I would really like to hear how you are coping with your Prednisone dosage.  Thanks, everyone, for sharing.

Have a lovely weekend,

Mags

Liver transplants are saving lives in Oklahoma

An Oklahoma City medical team’s first and 1,000th liver transplants happened the same day, 19 years apart. Jay Dysart and Beth Meyers are both doing well and have found new life in remarkable organs.

BY SONYA COLBERG scolberg@opubco.com    6

Published: November 28, 2011

Read more: http://newsok.com/liver-transplants-are-saving-lives-in-oklahoma/article/3627236#ixzz1fI1Tfoba

I am always encouraged when I read these types of stories because I’m hopeful that more AIH patients and other patients with liver disease receive the crucial liver transplant they need when their time comes.  If you are not an organ donor, I encourage you to become one.  It’s one of the best gifts you can give during this holiday season.

Best holiday wishes to you and yours,

Mags