Wie gründe ich eine Selbsthilfegruppe? – Ein praktischer Ratgeber Einleitung: Die Diagnose Multiples Myelom/Plasmozytom ist eine große Herausforderung. Dabei handelt es sich um eine seltene und komplizierte Krankheit. Die Diagnose ist häufig nicht eindeutig, und die empfohlene Behandlung kann von Arzt zu Arzt variieren. Dies trägt nicht gerade dazu bei, neu erkrankten Patienten ein Gefühl von Sicherheit zu vermitteln. Dennoch, mit geeigneten Testverfahren und Untersuchungen kann eine eindeutige Diagnose gestellt werden. Patienten ohne Symptome können durch regelmäßige Kontrolluntersuchungen ohne aggressive Therapien behandelt werden. Patienten mit Symptomen kann mit einer Therapie geholfen werden, durch die die Krankheit höchstwahrscheinlich für Jahre eingedämmt wird. Darüber hinaus kann der Einsatz von neuen Therapieformen in Erwägung gezogen werden, um eventuell den Krankheitsverlauf langfristig zu kontrollieren oder sogar eine Heilung zu erreichen. Damit Patienten, deren Angehörige und Freunde das Leben mit Multiplem Myelom/Plasmozytom erfolgreich meistern können, ist es sehr wichtig, dass sie bei der Krankheitsbewältigung unterstützt werden. Dies geschieht durch die Vermittlung von Wissen, einer positiven Einstellung und Fähigkeiten zur Krankheitsbewältigung. Für Patienten und betreuende Personen, die sich mit der Diagnose Multiples Myelom/Plasmozytom konfrontiert sehen, ist diese Hilfe unerlässlich. Selbsthilfegruppen können dabei eine Richtung vorgeben und Informationen aus erster Hand liefern: Die gegenseitige Unterstützung und der Informationsaustausch mit Menschen, die sich in einer ähnlichen Situation befinden, können dazu beitragen, dass Patienten sich weniger allein gelassen fühlen. Myeloma Euronet ist ein neuer zwangloser Zusammenschluss von nationalen Organisationen, die Menschen mit Multiplem Myelom/Plasmozytom und deren Angehörige und Freunde bestmöglich unterstützen möchten. Sämtliche Mitgliedsorganisationen sind mit der Gründung und Leitung von Selbsthilfegruppen bestens vertraut. Mit ihrem Wissen und ihrer Erfahrung haben sie zur Erstellung dieser Broschüre beigetragen. Mit diesem Ratgeber möchten wir Ihnen eine Anleitung zur Gründung Ihrer eigenen Selbsthilfegruppe geben. Die emotionale und soziale Unterstützung von Menschen mit Multiplem Myelom/Plasmozytom ist ebenso wichtig wie deren medizinische Betreuung. Mit Ihrer eigenen Selbsthilfegruppe können Sie die Betroffenen beim Umgang mit Angst und Frustration unterstützen und ihnen letztendlich zu einem bewussteren Leben verhelfen.
Your guide to coumadin(r)/warfarin therapy
Your Guide to
This booklet is based on a product developed by Carla Huber, A.R.N.P., M.S., Cedar Rapids Community Anticoagulation Clinic, Cedar Rapids, Iowa, under Agency for Healthcare Research and Quality (AHRQ) Grant No. 1 U18 HSO15830-01 to Kirkwood Community College.
This document is in the public domain and may be used and reprinted without special permission. Citation of the source is What Coumadin®/Warfarin is and What it How to Take Coumadin®/Warfarin.5 Possible Side Effects .7 Stay Safe While Taking Coumadin®/Warfarin.9 Use of Other Medications .11 Diet for Coumadin®/Warfarin Users .14 Share Information With Your Other Doctors.16 Specific Conditions .17 Atrial Fibrillation .17 Deep Vein Thrombosis.17 Heart Valve Replacement .18 Peripheral Vascular Disease.18 Pregnancy and Breastfeeding.19 Pulmonary Embolism.20 Valvular Heart Disease .21 Introduction
Your doctor, nurse, or other health professional
has started you on the medication Coumadin®/warfarin. Patients who are on Coumadin®/warfarin must be watched closely. You will need to have blood drawn often. You will also need to be careful that you do not do something to hurt yourself and cause bleeding. Your doctor will work with you to keep you healthy and safe while you are taking Coumadin®/warfarin.
Starting on a new medicine, especially one you may have to take for a long period of time, may make you worry. To help you learn about your medication, your doctor has given you this booklet to take home and read. The information in the booklet will help you understand why you are taking Coumadin®/warfarin and how to keep yourself healthy. Please take time to read all of the information in the booklet. If you have any questions call your doctor. n Your doctor is here to help you.
Call if you have questions.
n Your doctor's phone number is:
You can stay healthy even when you have a health problem that needs special medication. You and your doctor will work together as a team to make sure that taking a medication like Coumadin®/warfarin does not stop you from living well and safely.
What Coumadin®/Warfarin is
And What it Does for You
If your blood is too thick and forms clots, you could be at risk for heart attack, stroke, and other problems. Coumadin®/ warfarin is a medicine that will keep your blood from clotting. The drug is an anticoagulant.
"Anti" means against and "coagulant" means to thicken into a gel or solid. Sometimes this drug is called a blood thinner. Think of syrup being poured—it is sticky and thick and flows slowly.
Coumadin®/warfarin helps your blood flow easier Coumadin®/warfarin will:
n Keep your blood from making clots.
n Help your blood flow easily.
How to Take
Always take your pills as directed. You must take the
pills only on the days your doctor tells you to. The amount of Coumadin®/warfarin each person needs is different. The dose is based on a blood test called the INR (International Normalized Ratio). The amount of medication you take may change, based on the blood test. It needs to be taken at the same time, usually in the evening.
Coumadin®/warfarin can be medications. Never skip a dose and never take a double dose. If you miss a dose, take it as soon as you remember. If you don't remember until the next day, please call your doctor for instructions. If this happens on a weekend or holiday, skip the missed dose and start again the next day. Mark the missing dose in a diary. A daily pillbox will help you keep track of your dose. n Go for blood tests as directed.
n Never skip a dose.
n Never take a double dose.
n Take Coumadin®/warfarin in the evening at the same time as directed by your doctor.
The doctor decides how much
Coumadin®/warfarin you need by testing your blood. The test measures how fast your blood is clotting and lets the doctor know if your dosage should change. If your blood test is too high, you might be at risk for bleeding problems. If it is too low, you might be at risk for forming clots. Your doctor has decided on a range on the blood test that is right for you. Coumadin®/ warfarin is like balancing a scale. If you take too increase bleeding; if you take too little, your blood will clot. Getting your blood within the target range is getting it balanced. When you first start taking Coumadin®/warfarin you may have your blood checked often. Once the blood test is in the target range and the correct dose is reached, this test is done less often.
Because your dose is based on the INR blood test it is very important that you get your blood tested on the date and at the time that you are told.
Illness can affect your INR blood test and your Coumadin®/warfarin dose. If you become sick with a fever, the flu, or an infection, call your doctor. Also call if you have diarrhea and vomiting lasting more than 1 day.
Know your INR blood test range.
n My INR blood test range is: Possible Side Effects
Side effects with Coumadin®/warfarin may
happen. Most side effects relate to how the medicine works. To lower the risk of bleeding, your blood Coumadin®/warfarin level will be kept within a range that is right for you. Even when your INR blood test is in range, you might see a little bleeding like bruises on your body or slight gum bleeding when you brush your teeth. Some people may experience hair loss or skin rashes, but this is rare. If you notice something wrong that you feel may be caused by your medication, call your doctor.
Slight bleeding—you may notice from time to
Gum bleeding while brushing teeth.
Bleeding after a minor cut that stops within a few minutes.
Menstrual bleeding that is a little heavier than normal.
Major bleeding—call your doctor, or go to
the hospital emergency room right away if
you have any of the following:
Red, dark, coffee, or cola colored urine.
Bowel movements that are red or look Bleeding from the gums or nose that does not stop quickly.
Vomit that is coffee colored or bright red.
Anything red in color that you cough up.
Severe pain, such as a headache or Sudden appearance of bruises for no Menstrual bleeding that is much heavier than normal.
A cut that will not stop bleeding within 10 A serious fall or hit on the head.
Dizziness or weakness.
Stay Safe While Taking
You will need to be careful using objects, such as
knives and scissors, that could make you bleed.
You will need to avoid some activities and sports that could cause injury. For example, it is not a good idea to take them, you need to think about how you can protect yourself from injury. For example, if you like to work in the yard, be sure to wear sturdy shoes and gloves. Activities that would be safe for you include swimming and walking. It is very important to know that you can be bleeding and not see any blood. For example, you could fall and hit your head, and bleeding could occur under your skull. Or, you could fall and hurt your arm and notice a large purple bruise.
This would be bleeding under the skin. Call your
doctor or go to the hospital immediately if
you have taken a bad fall, even if you are not
Talk to your doctor about wearing a medical alert bracelet or necklace. If you are badly injured and unable to speak, the bracelet would tell health care workers that you are on Coumadin®/warfarin.
Exercise is important to your health.
Think about the sports and activities youlike doing. Do they put you at risk forinjury? If so, try another activity and useprotective gear to keep you safe while you are doing it. For example, if you liketo ride your bike, be sure you wear ahelmet and gloves. If you would like tostart a new activity that will increase theamount of exercise you get every day,talk to your doctor.
To prevent injury; be careful:
Be very careful using knives and scissors.
Use an electric razor.
Use a soft toothbrush.
Use waxed dental floss.
Do not use toothpicks.
Wear shoes or non-skid slippers in the Take care trimming your toenails.
Do not trim corns or calluses yourself.
Always wear shoes.
Be very careful with sharp tools; wear gloves when using them.
Avoid activities and sports that can easily Wear gardening gloves when doing yard Stay active.
Use of Other Medications
When Coumadin®/warfarin is taken with other
medicines, it can change the way other medicines work. Other medicines can also change the way Coumadin®/warfarin works. It is very important
to talk with your doctor about all of the other
medicines that you are taking, including over-
the-counter medicines, antibiotics, vitamins,
or herbal products.
Any product containing aspirin may lessen the
blood's ability to form clots and may harm you
when you take Coumadin®/warfarin. If you take
a daily aspirin, talk with your doctor about
what dose it right for you.
Other medicines you get over-the-counter may have aspirin in them. All medications must be approved by your doctor, including medicines you have taken before you started Coumadin®/warfarin. Following is a list of some common medications that should be approved by your doctor.
Pain relievers, such as: Naproxen (Aleve®).
Ibuprofen (Advil®, Motrin®, Nuprin®, Midol®, Pamprin HB®).
Stomach remedies, such as: Cimetidine (Tagamet HB®).
Bismuth Subsalicylate (Pepto Bismol®).
Laxatives and stool softeners.
Herbal products, such as:
Check the Coumadin®/ warfarin you are taking.
Does the medicine seem different from what your doctor wrote on the prescription or look different from what you expected? Does your refill look different than what you used before? Is the color the same as what you were previously given? If something seems different, ask the pharmacist to double- check it. Most errors are first found by patients. Medicines look different: Coumadin® pills (upper row)
and generic warfarin (lower row)
Check your medicine.
Always tell your doctor about all themedicines you are taking. Tell yourdoctor when you start taking newmedicine and when you stop. Bring alist of current medications, over-the-counter drugs—such as aspirin—andany vitamins and herbal products youtake.
Diet for Coumadin®/Warfarin
The foods you eat can affect how well
Coumadin®/warfarin works for you. The most important thing to remember is to eat what you normally eat and not make any major changes in your diet without calling your doctor. Do not go on a weight loss plan while taking Coumadin®/warfarin. Vitamin K is important for blood to clot. Since Coumadin®/warfarin works to keep blood from clotting, high amounts of vitamin K might work against Coumadin®/warfarin. The highest amount of vitamin K is found in green and leafy vegetables like broccoli, lettuce, cabbage, and spinach. It is important not to change your vitamin K intake.
Keep your diet the same. If you normally eat a salad for lunch, keep eating a salad for lunch. Call your doctor if you are unable to eat for several days, for whatever reason. Also call if you have stomach problems, vomiting, or diarrhea that lasts more than 1 day. These problems could affect your Coumadin®/warfarin dosage.
Foods high in vitamin K: Vegetables, such as: Brussels sprouts.
Leafy greens, such as: Turnip, collard, and mustard greens.
Limit alcohol. Alcohol can affect your
Coumadin®/warfarin dosage but it does not mean you must avoid all alcohol. Serious problems can occur with alcohol and Coumadin®/warfarin when you drink more than 2 drinks a day or when you change your usual pattern. Binge drinking is not good for you. Be careful on special occasions or holidays and drink only what you usually would on any regular day of the week.
Share Information With Your
warfarin you will be seen regularly regularly to keep yourself healthy.
other doctors it is that you tell them Coumadin®/warfarin. It is a good idea to bring this booklet with you to your appointments. You should also tell your dentist and the person who cleans your teeth. If another doctor orders a new medication for you, please call the doctor who ordered your Coumadin®/warfarin so it can be noted in your file. Atrial fibrillation. Atrial fibrillation is a fairly
common heart disorder. Sometimes your heart will beat too fast or out of rhythm and may cause Decreases the chance of blood clots.
Helps the blood flow easier. Deep vein thrombosis. Deep vein thrombosis
(DVT) is a blood clot that has formed in a vein.
The veins deep inside your leg, especially the calf and thigh, are the most common areas to find the clot. DVT can lead to damage of the blood vessels in your leg. It can also cause a serious lung problem. If the clot in the vein breaks away from the wall of the vein and travels to the lungs, it can block blood flow to the lungs. This problem is called a pulmonary embolism.
Decreases the chance of blood clots in the veins of your legs.
Lowers your risk for DVT.
Heart attack. A heart attack is caused by a lack of
blood supply to the heart. The lack of blood happens when one or more of the blood vessels pumping blood to the heart are blocked.
Decreases the chance of blood clots.
Helps blood flow easier.
Heart valve replacement. There are many types
of artificial valves that are used to replace your own heart valve. The material used to make these valves may cause blood to stick and form clots.
Taking Coumadin®/warfarin lowers the chance of blood clots around the valve.
Decreases the chance of blood clots.
Peripheral vascular disease. Peripheral vascular
disease is the buildup of plaque in the blood vessels in your legs. Plaque is a fatty buildup that makes your blood vessels smaller. This buildup of plaque reduces the flow of blood and increases the chance of blood clots.
Helps blood flow easier through the smaller blood vessels.
Decreases blood clots.
Pregnancy and breastfeeding.
Doctors warn against takingCoumadin®/warfarin if you are pregnantor planning to get pregnant. Coumadin®/warfarin may cause birth defects orbleeding that may harm or even lead tothe death of your unborn child.
If you are pregnant or planning to get pregnant, tell your doctor. If you are pregnant and your doctor wants you to take Coumadin®/warfarin, you must be watched closely by the doctor who Coumadin®/warfarin and the doctor who is caring for you while you are If you are planning to breastfeed your baby or are already breastfeeding, talk to your doctor. Your doctor may need to test you and your baby for the effects of Coumadin®/warfarin.
Pulmonary embolism. Pulmonary embolism is a
serious health problem. In pulmonary embolism, a blood clot that formed in another part of your body, such as in your leg, breaks loose and moves through the blood to your lungs. The clot then gets stuck within a blood vessel that brings blood to the lungs. The clot blocks the blood vessel so your lungs do not get blood flow. If the lungs cannot get enough blood, they will be damaged, and you will have difficulty breathing.
Decreases the chance of blood clots.
Lowers your risk of pulmonary embolism.
Stroke. A stroke is sometimes called a brain
attack. The cause of most strokes is a blood clot that blocks a blood vessel in the brain. This blockage cuts off the blood flow to a part of the brain. When the brain does not get enough blood flow, the brain cells begin to die and brain damage can happen. Think about a hose attached to a sprinkler for watering your lawn in the heat of summer. If there is a blockage in the hose, the water will not come out of the sprinkler. After a stroke, the type of problems the patient has depends on what part of the brain got blocked and did not get blood flow.
Decreases the chance of blood clots in the blood vessels of your brain.
Lowers your risk for a stroke.
Valvular heart disease. Valvular heart disease is
any problem in one or more of the four valves in the heart. Heart valves keep blood flowing in one direction. They act as a door that swings open allowing blood to flow through the sections of the heart. The valve or door tightly shuts to prevent blood from backing up to where it came from. Valves can become thick, stiff, and narrow.
This makes it hard for blood to get through the door. Valves can become floppy, just like a door that doesn't shut tightly, and blood leaks backward. When heart valves are not working like they should, blood flow can become slowed and clots can form.
Lowers the chance of blood clots.
Helps blood flow easier.
U.S. Department of
Health and Human Services
Public Health ServiceAgency for Healthcare Research and Quality540 Gaither RoadRockville, MD 20850 AHRQ Pub. No. 08-0028-AFebruary 2008
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