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Frontline Hepatitis Beacon Summer Edition 2002 |
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Edited by Ane Palmo
Questions or additions for the next newsletter: 206-328-5381
Also available by snail mail.
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In This Edition: |
"We Care Because YOU Are There" Frontline lists a National Support Group On the Website at: |
| STARTING A SUPPORT GROUP
Support groups provide a support system among people with common experiences. These groups run by the members, meet to share common happenings, knowledge, strengths, and hopes. Frontline Hepatitis has written the following guidelines to assist people interested in starting their own Hepatitis support group.
· Talk with others who have successfully started support groups. Discuss what
methods worked best for them and problems they encountered to help you avoid having similar
troubles. |
· Structure your first meeting to allow time to discuss what the members would
like from the group. Shared leadership is easier than doing it all on your own.
Each meeting should have an educational component, a time for business and
sharing concerns, and setting a date for the next meeting· Discuss what members
feel the group's responsibility to each other is. Address the issue of
confidentiality such as things discussed at the meetings remains within the
group unless someone is suicidal or threatening others. · Groups may be formal or informal. It is suggested to have written policies to give to new members, including the group's purpose, meeting times, an explanation of how meetings are conducted, the groups policy on confidentiality, and contact names to call with questions or concerns. · Ask members to provide their name, address, phone number, and any skills they feel they can contribute to the group: publicity, printing, and organization, recruiting speakers, gathering information. · Meetings should have a structure so they don't wander off course. Frequently members introduce themselves and state their reason for joining the group or share an experience. · Speakers on a variety of topics of interest, hepatologists, nutritionists, and nurses make the meetings interesting. Discussions may include diet, treatment, exercise, and medical tests, dealing with insurance companies or employers. It is good to have a health care professional attend meetings for at least a portion of the time. Speakers from the outside and medical world usually speak for 20 to 30 minutes and then leave for the personal sharing of the group. |
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HEMATOCRIT (HCT) The word hematocrit means "to separate blood", a procedure which is done following the blood draw through the proper use of a centrifuge. Hematocrit is the measurement of the percentage of red blood cells in whole blood. It is an important determinant of anemia (decreased), polycythemia (increased), dehydration (elevated), increased R.B.C. breakdown in the spleen (elevated), or possible overhydration (elevated). Normal Adult Female Range: 37 - 47% Optimal Adult Female Value: 42% Normal Adult Male Range 40 - 54% Optimal Adult Male Value: 47 Normal Newborn Range: 50 - 62% Optimal Newborn Value: 56 Panels: Hematology HEMOGLOBIN (HGB) Hemoglobin is the main transport of oxygen and carbon dioxide in the blood. It is composed of globin a group of amino acids that form a protein and heme which contains iron atoms and imparts the red color to hemoglobin. As with Hematocrit, it is an important determinant of anemia (decreased), dehydration (increased), polycythemia (increased), poor diet/nutrition, or possibly a malabsorption problem. Normal Adult Female Range: 12 - 16% Optimal Adult Female Value: 14 Normal Adult Male Range: 14 - 18% Optimal Adult Male Value: 16 Normal Newborn Range: 14 - 20% Optimal Newborn Value: 17 Panels: Hematology MCH (Mean Corpuscular Hemoglobin) Hemoglobin x 10 R.B.C. Mean Corpuscular Hemoglobin (MCH) gives the average weight of hemoglobin in the red blood cell. Due to its use of red blood cells in its calculation, MCH is not as accurate as MCHC in its diagnosis of severe anemias. Decreased MCH is associated with microcytic anemia and increased MCH is associated with macrocytic anemia. Normal Adult Range: 27 - 33 pg Optimal Adult Value: 30 Panels: Hematology MCV (Mean Corpuscular Volume) Hematocrit x 10 R.B.C. The Mean Corpuscular Volume reflects the size of red blood cells by expressing the volume occupied by a single red blood cell. Increased values may indicate macrocytic anemia or B6 or Folic Acid deficiency and decreased values may indicate microcytic anemia, possibly caused by iron deficiency. Normal Adult Range: 80 - 100 fL Optimal Adult Value: 90 Higher ranges are found in newborns and infants Panels: Hematology MCHC (Mean Corpuscular Hemoglobin Concentration) Hemoglobin x 100 Hematocrit This test measures the average concentration of hemoglobin in red blood cells. It is most valuable in evaluating therapy for anemia because Hemoglobin and Hematocrit are used, not R.B.C. in the calculation. Low MCHC means that a unit of packed R.B.C.s contain less hemoglobin than normal and a high MCHC means that there is more hemoglobin in a unit of R.B.C.s. Increased MCHC is seen in spherocytosis, and not seen in pernicious anemia whereas decreased levels may indicate iron deficiency, blood loss, B6 deficiency, or thalassemia. Normal Adult Range: 32 - 36 % Optimal Adult Value: 34 Higher ranges are found in newborns and infants Panels: Hematology R.B.C. (Red Blood Cell Count) Red blood cells main function is to carry oxygen to the tissues and to transfer carbon dioxide to the lungs. This process is possible through the R.B.C. containing hemoglobin which combines easily with oxygen and carbon dioxide. Normal Adult Female Range: 3.9 - 5.2 mill/uL Optimal Adult Female Value: 4.55 Normal Adult Male Range: 4.2 - 5.6 mill/uL Optimal Adult Male Value: 4.9 Lower ranges are found in Children, newborns and infants Panels: Hematology W.B.C. (White Blood Cell Count) White blood cells main function is to fight infection, defend the body by phagocytosis against invasion by foreign organisms, and to produce, or at least transport and distribute, antibodies in the immune response. There are a number of types of leukocytes (see differential) that are classified as follows: Granulocytes Nongranulocytes Banded Neutrophils Lymphocytes Neutrophils Monocytes Eosinophils Basophils Each cell, or leukocyte, has a different job in the body which is explained in the Differential section. Normal Adult Range: 3.8 - 10.8 thous/uL Optimal Adult Value: 7.3 Higher ranges are found in children, newborns and infants. Panels: Allergy, Hematology PLATELET COUNT Platelets (also known as thrombocytes) are the smallest formed elements of the blood. They are vital to coagulation of the blood to prevent excessive bleeding. Elevated levels suggest dehydration or stimulation of the bone marrow where the cells are produced and decreased levels may indicate an immune system failure, drug reactions, B12, or folic acid deficiency. Normal Adult Range: 130 - 400 thous/uL Optimal Adult Value: 265 Higher ranges are found in children, newborns and infants. Panel: Hematology SODIUM Sodium is the most abundant cation in the blood and its chief base. It functions in the body to maintain osmotic pressure, acid-base balance, and to transmit nerve impulses. Normal Adult Range: 135-146 mmol/L Optimal Adult Value: 140.5 Panels: Electrolyte POTASSIUM Potassium is the major intracellular cation in the blood. It, along with sodium, helps to maintain osmotic balance and is also involved in acid-base balance. It is needed for proper nerve and muscle action. Normal Range: 3.5 - 5.5 mmol/L Optimal Adult Value: 4.5 CHLORIDE Chloride's significance relates to its maintenance of cellular integrity through its influence on osmotic pressure, it also helps monitor acid-base balance and water balance. Elevated levels are related to acidosis as well as too much water crossing the cell membrane. Decreased levels with decreased serum albumin may indicate water deficiency crossing the cell membrane (edema). Normal Adult Range: 95-109 mmol/L Optimal Adult Value: 103 CO2 (Carbon Dioxide) The CO2 level is related to the respiratory exchange of carbon dioxide in the lungs and is part of the body's buffering system. Generally when used with the other electrolytes, it is a good indicator of acidity and alkalinity. Normal Adult Range: 22-32 mmol/L Optimal Adult Value: 27 Normal Children Range - 20 - 28 mmol/L Optimal Children Value: 24 Panels: Electrolyte CALCIUM The most abundant mineral in the body, it is involved in bone metabolism, protein absorption, fat transfer muscular contraction, transmission of nerve impulses, blood clotting, and cardiac function. It is highly sensitive to elements such as magnesium, iron, and phosphorus as well as hormonal activity, vitamin D levels, alkalinity and acidity, and many drugs. Normal Adult Range: 8.5-10.3 mg/dL Optimal Adult Value: 9.4 Panels: Electrolyte, Kidney Function |
PHOSPHORUS Phosphorus is an abundant element found in most tissues and cells. It is closely related to the calcium level with an inverse relationship. When calcium is increased, phosphorus tends to decrease and vice versa. Careful following of blood draw procedures are necessary because improper handling may cause falsely elevated values. Phosphorus is needed for its buffering action, calcium transport, and osmotic pressure. Normal Adult Range: 2.5 - 4.5 mg/dL Optimal Adult Value: 3.5 Normal Children Range: 3 - 6 mg/dL Optimal Children Range: 4.5 Panels: Electrolyte, Kidney Function Liver Enzymes Normal Adult Range: 6.0 -8.5 g/dL Optimal Adult Value: 7.25 Panels: Kidney Function, Liver Function, Protein ALBUMIN Albumin is the major constituent of serum protein (usually over 50%). It is manufactured by the liver from the amino acids taken from the diet. It helps in osmotic pressure regulation, nutrient transport, and waste removal. High levels are seen rarely in liver disease, shock, dehydration, or multiple myeloma. Lower levels are sesGOT (Serum Glutamic-Oxaloacetic Transaminase - AST) Serum Glutamic Oxaloacetic Transaminase or AST (Aspartate Aminotransferase) is an enzyme found primarily in the liver, heart, kidney, pancreas, and muscles. Seen in tissue damage, especially heart and liver, this enzyme is normally elevated. Vitamin B deficiency and pregnancy are two instances where the enzyme may be decreased. Normal Adult Range: 0 - 42 IU/L Optimal Adult Value: 21 Panels: Cardiac Marker, Liver Function sGPT (Serum Glutamic-Pyruvic Transaminase - ALT) Serum Glutamic Pyruvic Transaminase or ALT (Alanine Aminotransferase) is an enzyme found primarily in the liver but also to a lesser degree, in the heart and other tissues. It is useful in diagnosing liver function more so than sGOT levels. Decreased sGPT in combination with increased cholesterol levels is seen in cases of a congested liver. We also see increased levels in mononucleosis, alcoholism, liver damage, kidney infection, chemical pollutants or myocardial infarction. Normal Adult Range: 0 - 48 IU/L Optimal Adult Value: 24 Panels: Liver Function ALKALINE PHOSPHATASE Produced in the cells of the bone and liver with some activity in the kidney, intestine, and placenta, it is mostly found in an alkaline state with a pH of 9. Used extensively as a tumor marker it is also present in bone injury, pregnancy, or skeletal growth (elevated values). Growing children have normally higher levels of this enzyme also. Low levels are sometimes found in hypoadrenia, protein deficiency, malnutrition, and a number of vitamin deficiencies. Normal Adult Range: 20 - 125 IU/L Optimal Adult Value: 72.5 Normal Children Range: 40 - 400 IU/L Optimal Children Value: 220 Panels: Liver Function GGT (Gamma-Glutamyltransferase or Gamma-Glutamyl Transpeptidase) Believed to be involved in the transport of amino acids and peptides into cells as well as glutathione metabolism, Gamma-Glutamyl Transferase is mainly found in liver cells and as such is extremely sensitive to alcohol use. Elevated levels may be found in liver disease, alcoholism, bile-duct obstruction, cholangitis, drug abuse, and in some cases excessive magnesium ingestion. Decreased levels can be found in hypothyroidism, hypothalamic malfunction, and low levels of magnesium. Normal Adult Female Range: 0 - 45 IU/L Optimal Female Value: 22.5 Normal Adult Male Range: 0 - 65 IU/L Optimal Male Value: 32.5 Panels: Liver Function LD (Lactic Dehydrogenase - LDH) Lactic dehydrogenase is an intracellular enzyme from particularly in the kidney, heart, skeletal muscle, brain, liver, and lungs. Increases are usually found in cellular death and/or leakage from the cell or in some cases it can be useful in confirming myocardial or pulmonary infarction (only in relation to other tests). Decreased levels of the enzyme may be seen in cases of malnutrition, hypoglycemia, adrenal exhaustion, or low tissue or organ activity. Normal Adult Range: 0 - 250 IU/L Optimal Adult Value: 125 Panels: Cardiac Marker, Kidney Function, Liver Function BILIRUBIN, TOTAL A byproduct of the breakdown of hemoglobin from red blood cells in the liver, bilirubin is a good indication of the liver's function. Excreted into the bile, bilirubin gives the bile its pigmentation. Elevated in liver disease, mononucleosis, hemolytic anemia, low levels of exposure to the sun, and toxic effects to some drugs, decreased levels are seen in people with an inefficient liver, excessive fat digestion, and possibly a diet low in nitrogen bearing foods. Normal Adult Range 0 - 1.3 mg/dL Optimal Adult Value: .65 Panels: Liver Function Nitrogen Elements B.U.N. (Blood Urea Nitrogen) The nitrogen component of urea, B.U.N. is the end product of protein metabolism and its concentration is influenced by the rate of excretion. Increases can be caused by excessive protein intake, kidney damage, certain drugs, low fluid intake, intestinal bleeding, exercise, or heart failure. Decreased levels may be due to a poor diet, malabsorption, liver damage, or low nitrogen intake. Normal Adult Range: 7 - 25 mg/dL Optimal Adult Value: 16 Panels: Kidney Function, Nitrogen CREATININE Creatinine is the waste product of muscle metabolism. Its level is a reflection of the body's muscle mass. Low levels are sometimes seen in kidney damage, protein starvation, liver disease, or pregnancy. Elevated levels are sometimes seen in kidney disease due to the kidneys job of excreting creatinine, muscle degeneration, and some drugs involved in impairment of kidney function. Normal Adult Range: 0.7 - 1.4 mg/dL Optimal Adult Value: 1.05 Panels: Kidney Function, Nitrogen URIC ACID Uric acid is the end product of purine metabolism and is normally excreted through the urine. High levels are noted in gout, infections, kidney disease, alcoholism, high protein diets, and with toxemia in pregnancy. Low levels may be indicative of kidney disease, malabsorption, poor diet, liver damage, or an overly acid kidney. Normal Adult Female Range: 2.5 - 7.5 mg/dL Optimal Adult Female Value: 5.0 Normal Adult Male Range: 3.5 - 7.5 mg/dL Optimal Adult Male Value: 5.5 Panels: Kidney Function, Nitrogen PROTEIN, TOTAL Proteins are the most abundant compound in serum. The protein makeup of the individual is of important diagnostic significance because of protein's involvement in enzymes, hormones, and antibodies as well as osmotic pressure balance, maintaining acid-base balance, and as a reserve source of nutrition for the body's tissues and muscles. The major serum proteins measured are Albumin and Globulin (alpha1, alpha2, beta, and gamma). Decreased levels may be due to poor nutrition, liver disease, malabsorption, diarrhea, or severe burns. Increased levels are seen in lupus, liver disease, chronic infections, alcoholism, leukemia, tuberculosis amongst many others. Careful review of the individuals albumin, globulin, and A/G ratio are recommended. Normal Adult Rangeen in poor diets, diarrhea, fever, infection, liver disease, inadequate iron intake, third-degree burns and edemas, or hypocalcemia. Panels: Kidney Function, Liver Function, Protein Normal Adult Range: 3.2 - 5.0 g/dL Optimal Adult Value: 4.1
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ITEMS TO AVOID WHEN YOU HAVE LIVER DISEASE
| Alcohol or denatured alcohol, Isopropyl alcohol (SD-40), propylene
glycol-Found in cough/cold medicines, body sprays, perfumes, hair spray, lice shampoo, regular hair shampoo, conditioners, skin astringents,
disinfectant sprays, hair dyes, hair sprays, after shave liquids, cleaning solvents, more. Alcohol in any form is toxic to anyone with liver disease. Comfrey (also called allantoin)-Found in tea, herbal products, skin care products, cold sore preparations, more. Highly toxic to those with liver disease. DEA (diethanolamine) MEA (monoethanolamine TEA (triethanolamine)- Found in products that create foam like shampoo, shaving creams, bubble bath, more. These chemicals form cancer-causing nitrates and nitrosamines. DMDM Hydantoin & Urea (Imidazolidinyl)-A preservative that releases formaldehyde and may cause joint pain, chronic fatigue, dizziness and loss of sleep. Fragrance-Found in many products made from mostly synthetic ingredients often containing animal urine or feces. May cause headaches, coughing or skin irritation. FD&C Color Pigments-Found in skin care products, make-up, more. Made from coal tar containing heavy metal salts that deposit toxins onto the skin- known carcinogenic. Mineral Oil-Found in skin care products, baby products, make-up, more. Petroleum by-product that clogs pores and interferes with the skin's elimination process. PEG (Polyethylene glycol)-Used as a thickener for products. Potential carcinogenic petroleum ingredient that can alter and reduce the skin's natural moisture factor. Propylene Glycol (PG) and Butylene Glycol-Petroleum plastic used as a wetting agent or solvent. Can alter and reduce the skin's natural cellular structure. |
Prescription or non-prescription drugs (OTC-over the counter), illegal drugs Vitamins/minerals, herbs and alternatives Gasoline fumes, auto exhaust, boat fumes, paint fumes, paint removers, etc Engine products-oil, fluids, cleaners, solvents Industrial products or fumes Chlorine/chemicals used in swimming pool water, wading in polluted lakes/streams Bath water chemicals-soaps, bubble baths, oils Skin lotions, suntan block, topical itch creams, disinfectant lotions, skin sprays Balms to the lips, make-up, make-up removers, acne products Contact lense products First aide products Toothpaste, mouthwash Suppositories Fertilizers, plant sprays, bug-repellant sprays or candles, snow de-icers Pet products Incense, scented candles, air fresheners Perfumes, after shaves, shaving creams, deodorant Creams or fragrance in facial tissues Dryer sheets, laundry detergents, chemical residue from dry cleaning your clothes Cooking pan spray, dishwashing products All household cleaners for any use Nail polish or remover, nail glues Hair dye, hair spray, gels, shampoo, conditioner Read all food and beverage labels!! Computer screens, television sets, cell phones and other electronic equipment kept close to the body or head on a daily basis (like electric alarm clocks) have been reported to cause harm to the body, possibly cancer. Move these items away from you when in daily use, and limit use of cell phones. |
Subject: Important...FDA approval of Pegasus
Date: Saturday, April 27, 2002 9:47 PM
AN OPEN LETTER TO FDA ON PEGASYS APPLICATION REVIEW
The following open letter was sent this date to FDA to request the earliest possible review and approval for Pegasys (peginterferon alfa-2a). My thanks go to James Learned (ACRIA/HAAC), Michael Marco (TAG), and Sharon Phillips (HEPCAN) for their invaluable assistance.
Shortly, in a separate email, I will be sending out a brief, easy-to-use letter with contact information, that individuals are welcome to use as a template to construct their own letter to FDA. I ask community members to watch for that email and take action by writing themselves to the agency, as it will soon be reviewing the Pegasys and Pegasys/ribavirin applications.
Thank you,
Brian Klein
HAAC-SF
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53 Divisadero Street (your address here)
San Francisco, CA 94117
April 27, 2002
Dr. Jay Siegel, Director
Office of Therapeutics Research and Review
CBER
U.S. Food And Drug Administration
Woodmont Office Complex 1
1401 Rockville Pike, HFM-500
Rockville, MD 20852
LET FDA KNOW YOU WANT PEGASYS APPROVED Dear Community members: As we will all welcome new options in HCV treatment choice, I hope you will consider using the following sample letter as a template to send your own request that the FDA approve Pegasys at the earliest possible date. You are also welcome to post it where you like for others to use.
Keep your letter to one page maximum. Adding a few sentences on how access to this treatment could affect you personally will give your letter more meaning and can really influence the FDA.
Please note that there are no mentions of the supply, cost, or other market issues in this letter. As serious as those issues are, the FDA only has jurisdiction to act on approval of a product based on its proven clinical safety and efficacy. So it's best to stick to those issues.
The FDA contact person listed is a liaison to HCV and HIV communities. He will pass these letters on to the review committee so they will know how important this is for people living with HCV.
Thank you
-------------------------------------------------------------------------------------------------------------------- Richard KleinOffice of Special Health Issues
U.S. Food and Drug Administration
5600 Fishers Lane, HF-12
Rockville, MD 20857
Fax: 301-443-4555
RE: REQUEST EARLIEST POSSIBLE REVIEW AND APPROVAL OF PEGASYS
AND
PEGASYS/RIBAVIRIN COMBINATION THERAPIES
Dear Mr. Klein and Members of the FDA Application Review Panel for Pegasys, As a person living with hepatitis C (HCV), I ask FDA to give the earliest possible review and approval to Pegasys (pegylated interferon alfa-2a) monotherapy and to Pegasys/ribavirin combination therapy. There is great medical need for improved treatment and individual treatment choice. Recent clinical data show these treatments to have safety and efficacy that is some of the strongest seen for any HCV therapy, even for harder to treat groups such as genotype 1, high viral load patients - the majority of Americans who have HCV.
Pegasys data also show reductions in the incidence of depression and flu-like symptoms so common to interferon treatments. In addition to its effectiveness, this improved side effect profile will give people like me better quality of life on treatment and a better chance for successful completion of treatment.
I hope you will review and approve Pegasys and Pegasys/ribavirin combination at the earliest possible date. Thank you for your consideration in this matter.
Sincerely,
[YOUR NAME and CONTACT INFO]
Contact Information and Links to services across America
To self Subscribe, write to:
frontline-hepatitis-awareness-subscribe@Yahoogroups.com This
is our email information list and discussion site. We post daily abstracts and
inter-act here.
http://clubs.yahoo.com/clubs/frontlinehepatitis2 Our Yahoo Club where we also post and hold discussions. Anyone may post here and add abstracts or 'unload' in a supportive manner. Beginning Sept.5th an online support group will meet here in the chat room at 6PM PST
http://frontline-hepatitis-awareness.com Our website where you can find links and events as well as the online newsletters. We list a national support groups listing here for folks and encourage anyone to send information to us to be shared.
PO Box 94278
Seattle, WA 98124
(206) 328-5381 1-866-HEP-GOGO (437-4646)
Frontline Hepatitis is a member of the National Hepatitis C Advocacy Counsel
Executive Director Founder: Ane Palmo (WA)
President: Bruce Burkett (MO)
Vice President: Steve Questad (WA)
Secretary: Dawn Steward (MD)
Cindy Purdin: Web host
Mary Santamour: East Coast Co-coordinator (NY)
Leslie Franz - Newsletter (WA)
We accept donations to keep this organization rolling along and may give tax receipts upon request.
Events
Harm Reduction Conference in Seattle, WA
December 1 - 4, 2002
For more information/registration:
Harm Reduction Coalition
22 West 27th St., 5th Floor
New York, NY 10001
Attn: Conference Coordinator
Email: conference@harmreduction.org
http://www.harmreduction.org
