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Follow-up after the diagnosis of heart failure : points to consider as a patient

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Follow-up after the diagnosis of heart failure : points to consider as a patient

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1. Get regular check-ups

The doctors will propose a medical check-up regularly. To keep your heart failure stable, it is important that you take good care of yourself and have yourself monitored by healthcare providers:

  • Make sure you keep scheduled check-ups with the cardiologist, general practitioner, heart failure nurse or others. Always bring your heart failure diary and an up-to-date medication list with you to every appointment. If there have been any changes to the medication, do not forget to adjust these on the medication list.
  • Do not hesitate to contact your treating physician and/or heart failure nurse if you experience any problems.
  • Schedule regular visits with your doctor every 3 months for a re-evaluation and renewal of your medication. Checks should be scheduled more frequently if:
    • your health gets worse
    • you continue to have complaints that can be attributed to heart failure
    • there are other health problems, such as reduced kidney function or other issues
  • It is advisable to visit your cardiologist every 6 months on average. If your condition is stable or after recovery from heart failure, this may be less frequent. If your heart failure deteriorates or if there are other health problems, such as reduced kidney function, the frequency can be increased to every 1 to 4 months. Your treating cardiologist will decide this.
  • After a hospital admission due to heart failure, it is important to have more frequent visits with the cardiologist and/or general practitioner until your condition has stabilized and until you have achieved optimal dosing of your medication.
  • During follow-up, blood samples have to be taken regularly to monitor kidney function and the concentration of minerals in the blood (sodium, potassium). The need for a blood test will be determined by your doctor.

2. What symptoms should you pay attention to?

It is important to be aware of the symptoms of heart failure so you can respond adequately and consult your doctor, heart failure nurse or other healthcare providers in a timely manner.

The main physical symptoms of heart failure are caused by fluid retention and/or reduced blood flow to the body. Fluid accumulation in the lungs causes more shortness of breath. Fluid accumulation and congestion in the veins cause swelling of the lower legs or abdomen.

If you experience one or more of these symptoms, do not hesitate to contact your doctor or heart failure nurse :

Follow your complaints with this symptom card.

Recognizing your symptoms of heart failure is crucial in understanding how to manage or monitor your condition yourself and when to seek additional check-ups or assistance.

3. Monitor the following parameters: weight, blood pressure and heart rate

These parameters are ideally written down in the diary provided by your treating cardiologist, but can also be noted in a personal booklet or sheet if no specific diary is available.

Weight

It is best to weigh yourself systematically at the same time, namely:

  • In the morning when you get up.
  • After visiting the toilet.
  • Before getting dressed, eating or drinking.

In heart failure, the body may retain salt and fluid. In this case, diuretic medication will be prescribed. Normally a target weight is suggested by your cardiologist. This is your ‘ideal’ weight where the body is not retaining fluid and also not dehydrated. The goal is for your weight to fluctuate stably around this target weight. However, this target weight may change over time and should be regularly monitored and adjusted if necessary. The target weight can increase or decrease due to weight changes due to a changed diet (eating more or less) or other diseases, without there being too much or too little fluid in the body.

In addition, the aim should be to achieve a healthy weight , without obesity (body mass index, BMI > 30 kg/m²), but also avoiding underweight (BMI < 20 kg/m²).

How often do you have to weigh yourself ?

It is best to discuss this with your doctor.

  • We prefer patients to weigh themselves every morning in the following circumstances:
    • after a recent hospitalization for heart failure.
    • if a higher dose of diuretics must be taken daily.
    • in case of concomitant other illnesses (for example an infection/fever, vomiting, diarrhea, etc.)
  • Sometimes weighing 3 times a week may be sufficient, for example if the condition has been stable for a longer time (months) and a lower dose of diuretic medication is required (e.g. furosemide 40 mg per day).
  • Sometimes even weighing once a week may be sufficient, for example in a stable condition and if there is no need to take daily diuretic medication.

How to interpret changes in weight?

The weight will always fluctuate slightly day by day. Normal weight fluctuations are less than 1 to 2 kilograms, depending on your nutritional and fluid intake or toilet visits that day.

A change in weight of 2 kilograms or more is considered important, especially if there is a further increase in weight 2 or more days in a row. It is best to take contact with your doctor or heart failure nurse.

How to assess weight changes?

  • Weight gain:
    • When to consider worsening heart failure with fluid retention?
      • An increasing weight 2 days in a row, more than 2 kg above the target weight.
      • Increased shortness of breath.
      • Swelling of the lower limbs.

        Consult your doctor urgently: the diuretic medication may need to be increased (temporarily).Dynamic diuretic use: Sometimes your doctor will give you a schedule whereby the dose of diuretic medication must be adjusted according to weight. 
        • Above a certain weight, a higher dose of diuretic medication must be temporarily taken or an additional diuretic medication must be taken for a few days until the weight has returned to the target weight. The therapy can then be reduced back to the basic schedule.
        •  
        • Below a certain weight, the dose of diuretic medication must be temporarily reduced until the weight is increased to the target weight. The therapy can then be increased back to the basic schedule.
        •  

         

    • When weight gain is more likely to be due to dietary mistakes (eating too much or unhealthy food) and/or less exercise?
      • Rather slow weight gain over weeks.
      • No increase in shortness of breath.
      • No swelling of the lower extremities.

        Diuretic medication should only be increased on the advice of your doctor after a clinical evaluation. If the weight gain is not the result of retaining too much fluid, the diuretic medication should not be increased, because unnecessarily increasing this medication can cause low blood pressure and a deterioration of kidney function. Weight loss should then be pursued through a healthier diet and more physical activity.
  • Unintentional weight loss with normal eating habits :
    • Unwanted weight loss despite a normal eating pattern:
      • When to consider dehydration due to excessive fluid loss (for example due to too much diuretic medication, vomiting, diarrhea, etc.)?
        • Weight loss after increasing diuretic medication or in case of vomiting, diarrhea, inability to eat or drink, etc … or very hot weather in the summer.
        • Muscle cramps.
        • Thirst and dry mouth.
        • Low blood pressure.

          Consult your doctor urgently: the diuretic medication may need to be temporarily reduced or stopped. Moreover, you may drink more water.
    • When to think about other diseases?
      • Unexplained weight loss without a recent change in medication and without certain other complaints.
      • No muscle cramps.
      • No increased thirst or dry mouth.
      • Unchanged blood pressure.

        Discuss this with your doctor.

Blood pressure

Consider purchasing a blood pressure monitor for home use. This allows you to regularly measure your blood pressure and heart rate at home and notice changes more quickly.

The target is a blood pressure lower than 130/85 mmHg.

Higher blood pressure is detrimental to your heart because your heart has to work against higher pressure.

In patients with heart failure with reduced pump function, the aim is to achieve the lowest blood pressure that does not cause discomfort and an upper pressure of more than 90 mmHg. Low blood pressure is therefore not a problem if there are no complaints of dizziness when walking around or fatigue. If you do feel these discomforts and your blood pressure at home is  lower than 100-110 mmHg, it is best to contact someone from the care team. Decreasing your medication or other measures may be necessary. Adjustments of the medication should always be made in communication with your doctor.

Heart rate

The target is a regular heart rate around 60 - 65 beats per minute.

Contact the doctor if there is a sudden change in heart rate. For example: if your heart rate is normally always around 60 beats per minute and suddenly turns out to be 110 beats per minute, it is advisable to have a quick evaluation by a doctor with an electrocardiogram (ECG): a cardiac arrhythmia may be present.

A slower heart rate that does not cause symptoms is usually not a problem. If the heart rate drops below 40-45 beats per minute, this should certainly be discussed with your doctor and/or the heart failure nurse. If you experience symptoms of feeling unwell or loss of consciousness, this must be done urgently, possibly via the emergency department. Decreasing your medication or other measures (pacemaker implantation) may be necessary. Adjustments to the medication should always be made in communication with your doctor.

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