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FREQUENTLY ASKED QUESTIONS
1. Am I going to die? Eventually, yes. We all do. No doubt, your doctor has told you that, of the women who are diagnosed with this disease, half get better, half get worse and die. According to the old statistics, he was probably right. But we have new medications today, some that weren't available when those studies were done. And more medications and surgical procedures are being developed every day. I can tell you that there are quite a few women here who have gone off all medications and been fine. Some stay on their medications for life. But we have women here who were diagnosed as long 21 years ago. Not just one...but quite a few. You can throw that five-year lifespan out the window. Even more women here have made it past that five year mark, past seven. And healing isn't limited to the first six months, as the doctors might have said. Some women here have been completely healed in a matter of weeks, some continued to heal as long as four years after the fact. Just remember, everyone's body is different and your experience will never be the same as anyone else's. But you can heal, and go on with a normal, productive, long life. 2. Can I have more children? A few years ago, the doctor would have told you a flat, "no." But many doctors are changing their tune. Some women have gone on to have more than one child post diagnosis. It is very dependent on your physical condition, as well as a lot of other factors. Discuss it with your cardiologist and your OB/GYN. 3. Why am I so tired all the time? You have a new baby. That alone is enough to make you want to sleep all the time. Not only that, but your heart isn't functioning perfectly. That is bound to effect everything you do and feel. But the biggest culprit is probably the medications. Several of them will make you feel tired from the moment you wake up until you go to bed at night. Remember, your body is trying to heal. If you feel tired....lie down. Give your body a chance to adjust to the medications and to heal itself. I promise, it will get easier after a few weeks or months. Just give your body time to adjust. 4. How can I tell if I'm retaining water? The first indication is to look at your rings. Are they tight? That might mean that you're retaining water. Check your ankles as well. The biggest single indicator is your weight. A weight gain of 2 pounds or more in 24 hours is one sign that your body might be retaining water. 5. How can I tell if I'm healing? The only way to tell for sure is to have an echocardiogram. That will tell you what your ejection fraction is. If it's over 50%, you're considered to be healed. But also look at how you feel. Some women feel great with an EF of 20% and some feel horrible with an EF of 70%. Your doctor can tell you how your condition is progressing and help you get to the root of any other problems that might exist and make you feel bad. 6. My chest hurts. Am I having a heart attack? Your chest might hurt for a variety of reasons. Some doctors say that a dull ache can mean that your heart is returning to its normal size. Some of the meds can cause bone aches. But if you're ever in the slightest doubt, call 911 immediately. Don't worry about feeling silly if it's nothing. It's better to be safe than sorry. Talk to your doctor about anything that concerns you. Chances are, he's going to run a few tests on you but it's better to find out about a problem and correct it, right? 7. My last Echo showed an EF of 45%, down from the previous Echo's 55%. Am I in heart failure again? The reading of any Echocardiogram is very subjective. And a lot of factors can effect your EF, such as stress, medications, blood sugar, and position to name just a few. The faster a heart beats, the less effecient it is and the lower the EF can be. Don't be discouraged by a drop in your EF. Discuss it with your doctor and ask him if there might be another factor involved, such as the ones mentioned above. 8. I've healed to an EF of 70%. But can I get sick again, even if I don't have another baby? A lot of doctors say that, once you have healed, your chances of relapse are VERY slim. Do remember that there are other heart diseases and other cardiomyopathies. One of these might come into play and make you sick again. But if you have true PPCM and have healed, it's widely held that you will not relapse without another pregnancy. 9. Why is the doctor limiting my salt intake? Salt makes your blood pressure go up. It also makes your body retain water. It's very important right now that your blood pressure stay within healthy limits and that your body and heart not have to fight any extra fluids. For that reason, the doctor might also have restricted your fluid intake. I know it's really hard to stick to a low-salt diet in a high-salt world. But follow your doctor's orders. It really will help you in the long run. 10. Normally, I feel wonderful, like I'm not sick at all. But around the time of my period, I feel awful, like I'm getting sick again. Why is that? Nobody is sure why we feel worse around the time of our periods, but a lot of women do. Perhaps it's because our bodies try to retain water around that time. Perhaps it's that our bodies are gearing up for our period and thus are trying to produce more blood to compensate for what we'll soon lose. Whatever the reason, just know that you are not alone and many of us feel wretched at that time of the month. 11. Since I was diagnosed, it seems like all I can think about is that I might die. Is this normal? Is it normal? I'm not sure. But it is very common. You've been handed a heavy load. While most women heal from this disease, a few do die. Facing our own mortality and trying to cope with the idea that we MIGHT die is a very hard thing to do. If you seem to be focusing on death to the point where it is hindering your ability to lead a normal life, it might be wise to talk to the doctor about some anti-depressant medications and/or therapy. |
