Working with Healthcare Providers

Regular follow ups are essential for those of us with dilated cardiomyopathy. How often you meet with your doctor will be dependent on your doctor, your condition, and your device (if you have one). Do not avoid regular contact with your physician if you are feeling well. Just because you may be feeling well today is not a good reason to cancel a routine appointment. You must keep the medical professionals in your case informed about what is happening to your body on a regular basis.

It is important to monitor your weight, your progress, and your medications and share any concerns with your physician. Depending on the effectiveness of a medication, or improvement or lack of improvement in your condition, the doctor may adjust your treatment.

It is important for you to have trust and confidence in your doctor. In some cases, for whatever reason(s), this does not occur. You, as the patient, may ask for a second opinion from another doctor. It may seem you are doubting the doctor’s judgment, and you may feel awkward in challenging their decisions. BUT, contrary to what you may think, most doctors welcome another opinion. A second opinion will either confirm the original diagnosis and treatment approaches and(or) point out a factor in your case that may not have been previously considered. Additional treatments may also be recommended in a second opinion.

Who is in charge, your cardiologist or your primary doctor?

Sometimes it is confusing if your primary and specialist doctors are not on the same page. If there is a conflict, or it appears one is making decisions that conflict with the other, discuss the problem with them. Do not just let this happen. It is vital that they communicate relevant details of your condition with each other. You are the patient so insist they communicate with each other.

When should one contact their doctor in between scheduled appointments?

The easiest answer is to ask your doctor. It is important for you to know what your usual baseline is. An example of this: You are usually able to walk around the block 2 times without any limiting shortness of breath or fatigue. An important change would be that over the past couple of weeks, you notice you can only walk 1 block now before getting short of breath and fatigued. It is important to inform your doctor of this change.

Current practice guidelines (that your doctor is aware of) recommend that you should inform your doctor if you develop any of the following especially when different than your baseline:

  1. Increasing or worsening shortness of breath that is limiting your activities and/or interfering with your sleep (sitting up in order to breath or waking up feeling like you are smothering or unable to get enough air).
  2. Evidence of new or worsening fluid retention. This could be represented by worsening shortness of breath, but it can also be in the form of new or worsening swelling, and/or a weight gain that may not be explained by the diet.
  3. Loss of consciousness (fainted, passed-out) or nearly so.
  4. Bothersome palpitations (fast heartbeat, irregular heartbeat, pounding or skipping heartbeats)
  5. Defibrillator shocks.
  6. Severe lightheadedness or dizziness
  7. Extreme fatigue that is limiting daily activities.

Usually, a doctor will want to be contacted if you have gone to an emergency room or if your condition has declined dramatically. If you are unsure, give your doctor’s office a call.