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Assistant Porfessor Addelphi University
"WAITING FOR THE OTHER SHOE TO DROP"
I am delighted to be here today! You know the old joke, I am delighted to be anywhere. It sure beats a hospital or other options. Originally I was going to call this talk Living with PBC, can you call that living? But, as a nurse educator I was reminded that there are conditions and situations which may be considered much worse than PBC, and therefore decided it was more productive to discuss strategies for living with PBC.
Let me tell you a bit about myself, I am married, a mother of four, grandmother of seven and an Assistant Professor of Nursing at a small University in Long Island. As I share my thoughts with you today, please remember that I am new to this disease, a year ago, before being diagnosed, I had never heard of PBC. My story is probably similar to yours, yet it was shocking to me as a healthcare professional and of course personally. Today, I am trying to help educate my colleagues and others in the health care profession about PBC. Beside from being identified as a rare disease, as PBC primarily affects women, I sometimes personally wonder what effect that has had on the knowledge base of health care providers.
I was newly diagnosed at stage three, 11 months ago after many years of undiagnosed symptoms. For many years my physician told me my fatigue was due to aging, menopause, being overweight and overworked. My elevated liver enzymes, he assumed were due to a fatty liver which I had had for many years. Fatty liver can be one of the symptoms of PBC I later discovered. I also had an elevated ANA which my doctor attributed to the fact that my mother had an auto immune disease (MS). Not until my ANA nearly went off the charts at 2000 did he acknowledge that there might be something else wrong and referred me for further testing. A positive AMA –well you know the rest.
As I prepared this talk I was reminded that YOU my partners in sharing PBC, probably know it ALL- for many you have been dealing with PBC for a long time- and are perhaps more qualified then myself to be up here. You can teach the doctors! YOU are the experts!!! You must become the educators of society! AND like the quilt many of us participated in by making individual squares, the many small squares made a large beautiful quilt ,and when we come together our little voices combine to make a big voice and we must use that voice for a beautiful end. That end must be research and education into the cause and treatment of PBC, beyond liver transplant alone. So let us discuss this journey we have embarked upon together.
Although there is no generally acceptable cure for PBC, as it is one of many auto immune diseases, there are strategies for living and coping with it . During this conference we will hear medical interventions from the presenting physicians. I however, will look and present PBC through the lens of a nurse.
We know that persons with PBC need to address osteoporosis, adhere to a low fat diet, take vitamins to prevent deficiencies, we must be aware of the impact upon the liver of certain prescriptions and over the counter medications ,and limit or totally avoid alcohol intake. We also must be aware of the signs and symptoms of encephalopathy (fuzzy brain) . OH, and we must try to live as normally and healthily as we can. So how can we do this?
2**First:
Always remember that symptoms and problems of other diseases also occur in people with PBC. We are prone to other autoimmune diseas such as thyroid disease, arthritis, diabetes and sjogrens. So remember not to conclude or let your health care professional attribute everything to PBC alone. Also share with your family and friends how you are feeling so they can be of help to you. We often try to shelter our family or friends and as we usually look well, expend our energies beyond their limits. We must further inform all healthcare providers, which include other physicians (eye doctors), pharmacists, dentists that we have PBC. For some it may seem uncomfortable but it could save your life and prevent medications or even anesthesia which could have deleterious effects on the liver.
3***FATIGUE
Fighting Fatigue = the fatigue associated with PBC is totally different form any other sort of fatigue we MUST learn to rest (I have problem with this) = pacing oneself is imperative-I had to change jobs and still need to remember when to stop and take a break, recognition that tiredness is a physical symptom. We need to share this with our families, children spouses. It is not giving up just slowing up. But we also MUST keep as active as we can. We need to be fit!
4**FLUIDS
Increase water intake, this is particularly important in preventing or slowing down hepatic encephalopathy (fuzzy brain) hepatic encephalopathy causes lethargy, drowsiness, agitation and occurs when toxic levels of ammonia and other protein by-products reach the brain because the liver cannot filter them adequately.
Try to have two to three bowel movements daily to prevent ammonia buildup. Note if stools are bright red , black restrict sodium, decrease caffeine intake. Caffeine is often hidden in products which we do not suspect. Read the label.
Dry mouth=keep a bottle of water near. Dry eye -in simple cases an over the counter remedies are available, but be sure to check with an opthamologist or your medical doctor. Persons with PBC are prone to other AutoImmune diseases, such as Sjogrens in which dry eye is significant. BUT
Dry eye does not automatically mean you have Sjogrens. Vaginal dryness is often a problem for women, it may be due to normal menopause. The use of products like Replens is not just for comfort in sexual relations alone, but for the relief of general discomfort in the vaginal area. Dryness in this area just like other areas can lead to burning or infection due to irritation caused by the dryness.
5**DIET/MEALS
Eat a healthy balanced diet, eat foods low in fat particularly foods high in saturated fats as they are difficult for the liver to process. However, unsaturated fats such as fish oils which are found in oily fish like salmon are advised. A good way to determine if fats are saturated or unsaturated is put them in the refrigerator and if they congeal (harden)they are saturated oils.
When I refer to little and often I do not mean anything promiscuous I am referring to meals, they should be small meals and eaten often during the day) restrict salt as fluid retention is part of the cirrhosis. Try to eat a diet high in fiber (fruits, cears, whole grain breads and pasta (whole wheat pasta) and a diet low in sugar as adult diabetes may be a problem for persons with PBC.
6**ALCOHOL
Carefully read over the counter meds, certain food stuffs, let your pharmacist know so that he/she can help you in prescribed or over the counter meds. Inform friends if your friends and family that you are alcohol sensitive (My daughter in laws gravy)
7 ** OSTEOPOROSIS
The use of estrogen is controversial. Some physicians feel the patch is good as is does not affect the liver. Some feel that oral estrogen although it is processed by the liver is OK. Many recommend products like Fosamax, Calcimar internasal or parentally or slow released fluoride preparation Slow fluoride with all taken with calcium.
Calcium is taken by tablets and or in high calcium foods or calcium enriched foods.
Exercise: Weight Bearing Exercises to strengthen bone-WALKING -and to borrow from the Dr. Seuss style
"You can do it in a Mall
You can do it small or tall tred mills
Do it fine like a rodent on a line
Just do it do it do it and you will be just fine"
Weight bearing exercising in a pool is easier on the joints, many public pools offer in pool activities. And although Yoga is not necessarily considered a weight bearing exercise I usually recommend it as good for stretching and helps with preparing for other exercises.
ITCHING
First, not everyone with itching has PBC and not everyone with PBC has itching, but as the liver becomes more affected there will be an increase in itching. There are many medications which can be prescribed such as Questran and some over the counter anti itching medications such as Sarna, which work fairly well but there are other things you can try. Short showers with not tepid not hot water, Hot water makes one feel more itchy as it brings the blood to the area,. Also a diet which is not too spicy, try to keep linens clean and sleep in loose fitting light sleep wear. Skin integrity is very important and when we scratch bacteria can easily invade the protection of the skin.
COMPLEMENTARY MEDICINE
MEDICATIONS = be aware of meds which foster the immune system such as Echinacea we do not want to increase the immune system it is busy enough!
STRESS MANAGEMENT-VERY IMPORTANT!! Teach square breathing
NUTRITION = supplement with vitamins A,D,E=baby vitamins may be easier for some of us to digest, but read the label to be sure it is adequate
MEDICAID BUYBACK or buy in is available in some states this is tricky so I suggest and may mean spousal refusal or spend down. So I suggest referring with a Social Worker, Elder Attorney or your local Homecare Provider.
Laughter as Medicine
AND the most important thing to do is to remember to laugh, find reasons to laugh!! It is truly the best medicine, and people like to be around you more. Laughter has been proven to relieve stress, reduce pain and is generally thought to be therapeutic. Remember to Live in the moment. We are all mortal so might as well enjoy NOW not later. SO whether you are concerned with issues related to love *8*, or work *9*, other persons disabilities
*10*, or the medical profession
*11* find the humor.
THANK YOU.
