with CM & CHF
(Cardiomyopathy & Congestive Heart Failure)
Ginger, Lee, and "The Hearty Bunch" want to make it a little easier for you to live with CHF, and we'd like it to be more understandable to you, and to your family. So feel free to print these pages and give them to those who need to know what is happening to you.
This information does not replace or change any medical care you are receiving, but sometimes it is just good to know what to expect and to be able to read it in easy-to-understand terms. In addition, our Message Board is available 24/7 with friendly Heart-Help and support to all...or just to talk... and share a tear or a smile!
We also have Chat Time on Tuesday Nights 9:00 p.m. Eastern Time (enter the Chat Room through the top of the Message Board Page)! Click Here for Heart-Help's Message Board
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(Click to go to Subject)
The Diagnosis...Who Me?
(Symptoms, Emotional Feelings, How Much Time?)
What can I do to Help?
(This is from all the Folks at Heart-Help)
Congestive Heart Failure (CHF) sounds like a terrible diagnosis, but it is not that the heart fails and stops-- CHF is a group of symptoms that really means the heart is not ticking as well as it used to. Can you live with CHF?....sure! Do you have to make some adjustments?...yes.
Symptoms can be as simple as being tired, or they can be full blown; such as, shortness of breath, angina (pain in the chest area), palpitations, edema (just a fancy word for water retention--which can be in your ankles and feet and also your abdomen), and having to sleep on more than one pillow.
The emotions you will feel vary. Some folks go through a depression, some feel denial and some are angry or in despair. Depression can complicate heart disease, or it is a complication of heart disease, the experts are not sure--but it's not a good thing. So don't hesitate to talk to someone about it. There are folks on our Message Board who have gone through these stages and are always ready to help. And don't forget to mention it to your physician, and please, make sure it is taken seriously!
One of the questions you will probably have (and you are not alone) is, "How much time do I have? Do I have to get things in order?" Well, no one can answer that, but as little as four or five years ago, the prognosis was grim and we were usually told--five years. That has changed! With new medications, treatments, state of the art devices, we have a much better outlook. But, you need to be an informed consumer and your doctor has to be in touch with research, new medications and devices.
Heart failure can be the result of longtime coronary artery disease (CAD) or high blood pressure, heart damage following a heart attack, heart valve problems or abnormal heart rhythms.
You may expect some of the following symptoms:
- Shortness of breath SOB can come with exertion.
- Fatigue The tiredness is part of the good days/bad days we talk about.
- Swelling/(Edema Retaining fluid at times, either in the legs, ankles or abdomen, face or hands.
- Lightheadedness/Dizziness. Comes with CHF, but your meds can make it worse. If it gets too bad, please call your physician.
- Short Term Memory Problems. Another fun side effect of CHF and the meds!
- Dry Cough comes with CHF. ACE Inhibitors can make it worse, talk to your doctor about a change in which ACE Inhibitor is used.
- Palpitations. While palpitations can be a way of life for someone with CHF, you should discuss this with your doctor--most palpitations are fairly harmless, but there are some that are not. You may feel more palpitations if you sleep lying on your left side and sleeping on the right side may help.
Yes, you will need medication and some of them have some side effects, but with trial and error (medicine is not an exact science) you and your doctor--working together--will find the right ones for you.
We have a good page on medications (See Index on Heart-Help's Home Page) but briefly...... the standard regimen for CHF is beta blockers, ACE Inhibitors, Diuretics, and sometimes Lanoxin and Aldactone. Ask questions...learn about these drugs and pay attention to any side effects. (Also remember that the benefits of your meds usually outweigh the side effects, which are sometimes temporary.)
We are sure you know it, but there are doctors...and there are doctors! Many of us have been misdiagnosed with anything from asthma to anxiety, panic disorderor "it's all in your head.". Sometimes you need another opinion, sometimes you need three opinions. When you need surgery or a transplant, be sure the surgeon is Board Certified and the hospital does a lot of the procedures.
Classification (Classes) of CHF
Many have asked what the Classes of CHF are:
No limitation. Ordinary physical activity does not cause excess fatigue, shortness of breath or palpitations.
Slight limitation of physical activity. Patient are comfortable at rest, less than ordinary activity will lead to symptoms.
Marked limitation of physical activity. Although patients are comfortable at rest, less than ordinary activity will lead to symptoms.
Inability to carry on any physical activity without discomfort. Symptoms of CHF are present even at rest. With any physicl activity, increased discomfort is experienced.
The most important thing you can do is to LEARN as much as you can and don't be afraid to question your physician. And, if you can get to a CHF specialist, or a teaching hospital that would be best.
If you smoke...STOP! Alcohol is different for all folks, and if you have an arrhythmia, you should not drink--again, check with your Doctor. And, yes, caffeine can do a nasty job on our heart rates, so you might want to take up decaf and watch those cold drinks--even chocolate has caffeine.
Read Nutrition Facts label to learn sodium content and other important nutritional info about a product. Add flavor without adding salt by using lemon, garlic, herbs and spices.
If you feel tired--REST! You may find you have more energy one day and the next two days you are tired. Well, there is always a good book, your computer, or maybe you'll be lucky and find a good TV program. LISTEN TO YOUR BODY! Will you need a lot of rest? Yes, there will be good days and some "not such good days! Please be able to ask for help from those that love you--it sounds easy, but most times it isn't. And folks are usually happy to lend a hand.
Examine your feet, ankles and legs daily for swelling. If you do retain fluids, talk to you doctor, he may want you to limit your liquid intake. One good reminder is to weigh yourself each morning and if you gain 2 pounds in 24 hours or 3 to 5 pounds over several days--CALL your doctor, it may be edema (a fancy word for retaining fluids).
Take your medicines exactly as your doctorhas instructed. Never stop taking a medication or change the dosage--even when symptoms improve, unless instructed by your doctor. Tell your doctor all your symptoms, since some may be related to your medicine. AND, be patient as he/she adjusts your meds and doses to find out what works best.
Use a pill organizer to make is easier to keep track of your daily mediciation.
Before you take over-the counter-medications for cold, cough, or whatever, PLEASE call your cardiologist and discuss with him/her. Many of the drugs have serious interactions.
Purchase a bracelet or necklace that identifies you as a heart failure patient and carry a card in your wallet regarding medications and your physicians' phone numbers. Many people also carry a copy of their most recent electrocardiogram.
Excellent Books to Read:
We recommend two... at the moment!
SUCCESS with HEART FAILURE by Dr. Marc A. Silver
HEART SENSE for WOMEN by Stephen T. Sinatra, M.D.
The MERCK MANUAL is a professional handbook usually for doctors, but there is also one that is consumer-friendly. It is in most of the larger bookstores. The PDR (PHYSICIANS' DESK REFERENCE) has a listing of all drugs and their interactions, side effects, etc. If you do not want to buy a copy, the drug store usually will let you look at theirs, or sometimes the library has one.
In addition, we recommend getting on the web and being as proactive as possible. Some of the looking has been done--there are some excellent links and descriptive pages here at Heart-Help and the message board is filled with friendly, helpful, people who do not "leave a stone unturned" in their effort to help one another. Please remember, however, that there are many sites on web and not all are reputable--so ALWAYS give your physician the final say.
Our URL is www.heart-help.net
Last Modified on September 23, 2001
Please note: We are not medical doctors
nor are we in the healthcare field!
Whatever you read here, or at any website
should not be misconstrued as medical advice.
ONLY your doctor can prescribe what is best for you.
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