Monitoring and Management of Heart Failure Symptoms

The heart is a pump made from muscle.

The heart is made from a special type of muscle that never gets tired in the way that other muscles do.

The heart pumps blood around the body via blood vessels.

Arteries (red) carry blood away from the heart to feed the body with oxygen and nutrients.

Veins (blue) carry blood back to the lungs to be refilled with Oxygen.

The direction of blood flow in the heart is controlled by valves, which open to let blood through and close tightly to prevent blood going back the wrong way.

The heart has 4 chambers. The 2 large chambers at the bottom are called ventricles and are the main pumping chambers of the heart.

The 2 smaller chambers at the top are called atria and receive the blood from the blood vessels when the heart relaxes between pumps.

Heart Failure is a Chronic (Long-term) Condition, where the heart is no longer able to keep up with the demands of the body.

This means that the heart is no longer able to do its work properly without medical help.

Heart Failure is diagnosed by your Cardiologist, using an investigation called a Transthoracic Echocardiogram (TTE or Echo).

Your Cardiologist may order other investigations following your diagnosis to discover possible causes of Heart Failure.

The most common causes of Heart Failure are:

• Coronary Heart Disease, leading to the heart muscle becoming weak
• High Blood Pressure, leading to the heart muscle becoming stiff or thickened.
• Fluid overload caused by a narrowed valve or high blood pressure.
• Rhythm problems, such as Atrial Fibrillation (AF), where the heart cannot beat in a coordinated manner.
• Heart Valve problems, either due to narrowed or leaky valves.

There are other rarer causes of Heart Failure, which your Cardiologist will discuss with you if needed.

The pumping function of the ventricle is measured during the Echocardiogram.

Measurements of the blood in the chamber are taken before and after the heart pumps.

In a normal heart, at least 50% of the blood in the left ventricle is pumped out. If the force of the beat is weaker, less blood is pumped out. This is known as Left Ventricular Failure.

HErEF - Ejection Fraction less than 40% (Reduced Left Ventricular Function)

FHmEF - Ejection Fraction 40-49% (Moderately Reduced Left Ventricular Function)

HFpEF - Ejection Fraction 50% or more (Preserved Reduced Left Ventricular Function)

HFimpEF - Ejection Fraction, which has improved by at least 10% (Recovered Left Ventricular Function)

Your diagnosis will be explained to you by your Cardiologist. They will also explain which classification of Heart Failure you have.

This helps to ensure that you get the right treatment to manage symptoms and help you stay well.

Heart Failure with Reduced Ejection Fraction (HFrEF)

Less than 40% of blood is pumped out of the Left Ventricle with each beat.

These 4 main groups of medications have been recommended to improve heart function, manage symptoms and help you live longer. You may hear these medications referred to as the FOUR PILLARS. These medications are in the diagram below:

To get the greatest benefit for you, we will try and get these medications started for you as soon as possible. We have a Nurse-Led Clinic where we can manage this promptly for you to gain the biggest benefit.

Heart Failure with Mildly Reduced Ejection Fraction (HFmEF)

More than 40% but less than 50% of blood is pumped out of the Left Ventricle with each heartbeat.

Current guidance also recommends these medications, to improve symptoms and help you live longer. This also includes the ‘4 Pillar’ medications.

Heart Failure with Recovered Ejection Fraction (HFrecEF)

Also known as HFimpEF. (Heart Failure with Improved LV Function).

This is a new classification used by Cardiologists:

If the original Ejection Fraction is less than 40% and improves by more than 10% , this is known as Improved Ejection Fraction.

This improvement depends on the medications you are taking, so please don’t stop taking them unless the Cardiologist asks you to.

Taking your medication and following the lifestyle advice we provide is a key part of your recovery and continued stability.

Heart Failure with Preserved Ejection Fraction (HFpEF)

More than 50% of blood is pumped out of the Left Ventricle with each heartbeat.

The heart function issue is due other reasons than the function of the left ventricle. These could be:

• Thickening of the heart muscle wall. This makes the heart cavity smaller.
• The heart wall becomes stiff and can no longer relax between beats. This leads to less blood being pumped on the next beat.
• Problems with the heart valves. Valves can either become narrowed (Stenosis) or leaky (Regurgitation).

Medications for HFpEF are used to manage the symptoms. Medication currently available to help you stay well are SGLT2-Is and MRAs.

The main symptoms associated with Heart Failure are Fatigue, Breathlessness and Swollen legs.

When the heart is unable to pump out as much blood as it used to, it causes a build-up of blood in the body. This is called Congestion.

Fatigue

When the heart is unable to pump properly, oxygen and nutrients are unable to get to the muscles. This leads to tiredness.

Oedema or Swelling

When the heart is unable to pump properly, blood tends to pool in the blood vessels. The extra pressure from this fluid causes the blood vessels to leak into the surrounding tissues.

If the fluid leaks into the tissues of the lungs, it can cause increased breathlessness or phlegm production. You may also notice a new productive cough. A productive cough is when you expectorate mucous or phlegm.

If the fluid leaks into the tissues of the legs or abdomen, it causes swelling known as Dependent Oedema.

Regardless of where the fluid is stored, there will be an increase in body weight.

Breathlessness, wheezing or coughing

Buildup of fluid in the lungs takes up space where air would normally go. This leads to breathlessness, particularly when doing activities such as walking or climbing stairs.

Some people find they have trouble lying flat in bed and use extra pillows to help them breathe comfortably.

Breathing exercises can help too. They allow you to practise filling your lungs completely and making full use of your chest muscles.

The New York Heart Association Functional Classification (NYHA) is an easy way for doctors and nurses to measure how much symptoms are affecting your ability to perform day to day activities.

By using the NYHA scale yourself, you may be able to notice how well you are doing, or to notice when symptoms are increasing.

This will hopefully help you notice symptoms early and guide you to seeking advice and assistance.

NYHA 1 I can perform all ordinary physical activities without getting overly short of breath or experiencing tiredness or palpitations.

NYHA 2 I have slight limitation of physical activity. I get shortness of breath, tiredness or palpitations when performing more strenuous activity such as walking up a hill or climbing several flights of stairs. I remain comfortable at rest.

NYHA 3 I have noticeable limitation of physical activity. I get shortness of breath, tiredness or palpitations when performing activities less trenuous than ordinary activity. I remain comfortable at rest.

NYHA 4 I am unable to carry out any physical activity without discomfort. I feel tired and short of breath even at rest. If any physical activity is

undertaken, discomfort from my symptoms is increased.

Weighing yourself is an excellent way to monitor fluid levels. This measurement helps to monitor fluid levels in your body, as you are weighing your body, plus any extra fluid weight you may be carrying.

It is preferable to weigh yourself first thing in the morning, just after passing urine, and before eating breakfast.

You can record this weight on the table on the next page. Alternatively, some people have a notebook or even a spreadsheet.

If you notice a weight gain of 3-4 lbs (1-2kg) within 2 days which cannot be explained, or an unexpected slow, steady weight gain, this could be due to increased fluid in your body. Please phone our Helpline to discuss this.

Alternatively contact your GP and tell them you have been diagnosed with Heart Failure. Tell them that you monitor your weights, have noticed a weight gain and tell them any new symptoms you may have noticed to gain their support or advice.

We don’t mind whether you use Stones/Pounds or Kilograms.

As a guide, 1kg = 2.2lbs

We recommend that you check your blood pressure and heart rate regularly.

If you can, please consider buying blood a pressure monitor to use at home. You can buy one for £20-£30 either online or from your local Pharmacy.

Alternatively, most GP surgeries and health centres have B/P measurement equipment. Pharmacies also offer B/P monitoring.

A blood pressure machine usually provides a heart rate but will not detect irregularities in your heart rhythm. It is much more accurate to take the pulse yourself.

Pulse oximeter machines are available online. Alternatively, you can find your own pulse and count how many times you feel it in one minute.

If your pulse feels irregular, it could be a sign of an irregular rhythm.

The most common irregular rhythm is Atrial Fibrillation (AF). This rhythm is more common over the age of 65.

If this rhythm is new, you should let your GP know.

It is important to measure a resting heart rate, so sit and relax for 5 minutes before measuring.

Hold out your non-dominant hand with your palm facing upwards.

Press your index finger and middle finger of your other hand on the side of your wrist, just below the base of your thumb. Don’t use your thumb as it has its own pulse.

Press the skin lightly until you feel the pulse - if you can’t find it press a little more firmly or move the fingers slightly.

Once you find your pulse, count the beats you feel for 60 seconds.

A normal heart rate is between 60 and 100 beats per minute. If your heart rate is continuously above 120bpm or below 40bpm, we recommend you make an appointment to discuss this with your GP.

Symptom control medication - managing symptoms associated with fluid build-up in the body. These symptoms are listed next to the amber heart:

• Furosemide
• Bumetanide
• Metolazone

Prognostic Medication

ACE Inhibitors (....pril)

ARBs (....sartan)

ARNIs (Entresto)

MRA (Spironolactone/Eplerenone)

Beta-Blockers (...olol)

SGLT2-1 (...flozin)

Intravenous Iron

Cardiac Rehabilitation

Most of the medications to help you stay well and manage symptoms work through the kidneys. Kidney function is always monitored closely when making changes.

Some medications can make you feel worse before you feel better. If you feel you are struggling to take your medications for any reason, please call the Helpline or your GP to discuss this rather than stopping them yourself.

These medications help your heart to pump more effectively and some even treat the underlying cause of the Heart Failure.

Managing your medications could help improve breathing and energy levels, increase your activity levels and improve fluid levels.

These medications can also help your heart to function better and help keep your symptoms stable.

These medications have been proved to help improve your quality of life, and to experience fewer symptoms. This will be discussed with you in Education Clinic in more detail.

Diuretics (Used to manage symptoms related to fluid overload)

Often called ‘water tablets’.

Loop Diuretics: Furosemide and Bumetanide.

Reduces fluid levels in the body by making the kidneys pass out more water and salt. Another salt called Potassium is also passed out in urine more readily.

Thiazide Diuretics: Bendroflumethiazide, Indapamide and Metolazone.

Reduces fluid levels via the kidneys, used in conjunction with Loop Diuretics. These medications also cause you to pass out Potassium salt in your urine.

Side Effects:

• You will find that you pass more water than normal, which should help your symptoms. However, some people find that it impacts social activities such as trips out.
• Some people find that diuretic tablets make Gout symptoms worse.
• Some people can feel lightheaded or dizzy after taking this medicine.

Some people experience leg cramps, particularly at night.

If you develop these symptoms, please call the HFSN service before you stop taking your tablets.

Prognostic Medications

Used to help lengthen your life, control symptoms and reduce the chance of admission to hospital due to Heart Failure.

Aldosterone Antagonist (MRAs) Spironolactone and Eplerenone.

Aldosterone is a hormone that makes the body hold on to salt and water. Aldosterone levels become raised in Heart Failure. This leads to increased levels of fluid and salt in the body.

This tablet blocks the effect of Aldosterone, preventing the body from holding on to salt and water. It also prevents the body from losing another salt called Potassium.

MRAs have also been shown to help people with reduced heart function to live longer and reduce the chance of being hospitalised due to symptoms of Heart Failure.

Side Effects:

• This medication helps the body hold onto Potassium, so Potassium levels in the blood can become too high.
• This medicine can sometimes give people loose stools.
• Men taking Spironolactone can develop slightly enlarged and tender breasts. This effect reduces when the medication is stopped. Please contact the HFSN Service or the GP if you notice this is happening. Eplerenone does not have this effect.

If you develop these symptoms, please call the HFSN service before you stop taking your tablets.

ACE-Inhibitors Ramipril, Enalapril, Lisinopril, Perindopril

ACE-Inhibitors block the change of a hormone called Angiotensin 1 into another hormone, Angiotensin 2. Angiotensin 2 makes the blood vessels tighten up, and makes the kidneys release less salt and water.

By blocking the body from making this hormone, the blood vessels relax. This reduces the pressure on the heart when it pumps. The relaxation of the blood vessels causes the blood pressure to reduce, which helps with high blood pressure.

ACE-Inhibitors can stop your Heart Failure symptoms from worsening. They also help you live longer and have a better quality of life.

Side Effects:

• A common side effect is a dry, irritating cough. It should settle, but if it remains an issue please report it. Please do not stop the medication before speaking with us.
• This medication sometimes makes people dizzy, especially when standing up. This also should settle.
• There is a rarer, more serious reaction. If you notice swelling in your lips, mouth or face you must seek urgent medical help.

ARBs Candesartan, Losartan, Valsartan

This medication blocks the body’s response to Angiotensin 2. Angiotensin 2 is a powerful chemical that causes the blood vessels to tighten. Angiotensin 2 also makes the body hold onto salt and water.

By blocking the body’s response to this chemical, ARB’s have a similar effect to ACE-Inhibitors. ARB’s have also been shown to relieve Heart Failure symptoms, reduce hospital admissions and help you live longer.

ARNIs Sacubitril/Valsartan (Entresto)

If you are still experiencing Heart Failure symptoms despite taking a ACE-Inhibitor or ARB, you will be asked if you want to change over to this medicine.

This medication can only be started or increased by a Cardiologist or a Heart Failure Specialist Nurse.

Entresto is a combination of an ARB and a Neprilysin Blocker.

Neprilysin is a chemical that blocks the heart’s natural response to weakness. By blocking the action of Neprilysin, the heart is able to cope with this weakness.

Entresto also lowers blood pressure, reduces the amount of ankle swelling and also helps to reduce breathlessness.

Side Effects:

• This medication sometimes makes people dizzy, especially when standing up. This also should settle. If this symptom persists and your blood pressure is low (below 100mmHg), please contact the HFSN Helpline.

Beta Blockers Bisoprolol, Carvedilol

Beta Blockers slow the heart rate and lower the blood pressure. They can also help prevent the heart from beating irregularly.

Research has shown that Beta Blockers also manage Heart Failure symptoms and help to prevent hospital admissions.

Often when a beta blocker is started or is increased, you may feel more tired. Please bear with it, as that effect will ease as your body gets used to the medicine.

SGLT2 Inhibitors Dapagliflozin, Empagliflozin

These medications improve heart Failure symptoms by blocking a specific protein in the kidneys. By blocking this protein, the body is able to rid itself of excess sugar in the blood. This sugar is passed out in the urine.

This medication often helps symptoms to improve. It also helps the kidneys stay well for longer.

Side Effects:

• All tablets that help produce more urine can make you feel dehydrated. If you note a dry mouth, excessive thirst or that you are passing little or no urine - please contact your doctor or the HFSN Team.
• Please report any new wounds or infections in the groins or legs.
• Please report any symptoms of urine infection.
• Please report any symptoms of Thrush, such as itching or discomfort.

Intravenous Iron Infusion

Iron deficiency in Heart Failure patients is associated with reduced health-related quality of life, increased risk of hospitalisation, faster disease progression, and increased risk of a cardiac event.

Correction of iron deficiency results in the improvement of the debilitating symptoms related to Heart Failure such as:

• Dyspnoea (Shortness of Breath)
• Chronic fatigue
• Reduced exercise tolerance.

Correction of iron deficiency in patients with

Reduced LV Function (<50%) is considered to:

• Improve quality of life
• Reduce risk of hospitalisation due to worsening HF.
• Slow the progression of HF symptoms over time.
• Improve Heart Failure symptoms and exercise tolerance.

While taking oral iron therapy has benefits, it has the following limitations:

• Gastro-Intestinal side effects (common).
• Reduced absorption due to interactions with other medications and some foods.
• Low absorption due to oedema in the abdomen.
• Increased levels of a hormone called Hepcidin in patients with HF, which prevents the absorption of iron from the gut into the blood.

If blood tests show that your Iron levels are low, we will offer you an Intravenous (IV) Iron Infusion. IV Iron is absorbed into the blood straight away, bypassing the gut entirely.

The infusion takes approximately 1 hour and is administered in the Infusion Centre at Addenbrookes.

Please stop taking any oral Iron preparations if you have received Intravenous Iron.

Severe reactions may occur with Intravenous Iron I nfusion preparations, although they are rare. They usually occur within the first few minutes of administration.

Please let your infusion nurse know if you feel any unusual symptoms when the infusion has been started.

There are common milder side effects listed, such as nausea, rash and injection site reactions.

Please report these to your infusion nurse if you notice any.

Delayed reactions may also occur and can be severe. These include aching in the bones or muscles and sometimes fever. The onset varies from several hours up to four days after the infusion. Symptoms usually last two to four days and settle on their own or following the use of simple analgesics.

These rules apply to any medications that lower blood pressure or remove fluid.

These include Diuretics, MRAs, ACE Inhibitors, ARBs, ARNIs.

Please call the HFSN Helpline if you need any advice and support regarding Sick Day Rules.

Pause these medications if you feel unwell and/or unable to eat and drink.

Ensure you drink enough, but not excessively.

Restart these medications when you feel able to eat and drink normally again.

Dapagliflozin - Potential side effects

Please contact your GP or HFSN straight away if you think you have any of the following side effects:

• Dehydration - You may notice a fast heart rate, have a very dry or sticky mouth or notice that you feel very thirsty. You may pass little or no urine and may feel very sleepy or tired.
• Soft Tissue Infection - This is a rare side effect. A serious infection of the soft tissue of the genital area can occur.
• Urine Infections (UTIs) - Although urine infections are common, serious infections are rare. Signs of a UTI include pain or burning when passing urine, fever and/or chills, pain in your back or sides, or blood in the urine.

Your Cardiologist will speak to you if they feel you require any of these devices, and will explain all the risks and benefits.

A device may be considered if your Heart Failure symptoms do not improve, despite being on good medical therapy.

Make Us Aware

Please call us on our Helpline when you start noticing an increase in symptoms. If we are aware, we can help.

Manage

Heart Failure is a chronic condition that can be managed. Following these recommendations can help symptoms to stay stable.

• Take Care with how much fluid you drink. Advice will be given in Clinic on what amount to try and aim for. If you are drinking more than 2 Litres (4 pints) of fluid per day, you are likely to be advised to reduce this. Milk with cereal or soup is not counted in your fluid intake.
• Alcohol - Please try not to drink more than 14 units alcohol per week, as this can be harmful to your heart. If you need help, please speak with us or with your GP.
• If you are a smoker, it is of vital importance that you stop smoking. Support is available, please ask if you need support with this.
• Eat a healthy, balanced diet. If you are overweight, you will feel better if you lose weight. Advice on healthy eating is available if you require advice.
• If we advise you to reduce your salt intake, as salt can make you hold onto fluids. Cooking with salt is fine but try not to season at the table. Please do not use Salt substitutes such as Lo-Salt as this contains Potassium. Please also try and avoid salty drinks such as Bovril or OXO. Also try and cook with reduced salt stock cubes or herbs and spices. Ready meals are often high in salt, so try and avoid these if possible.
• Exercise is of vital importance and has a huge effect on staying stable. Exercise will not harm you and can be increased safely. Exercise can even make you feel better by making you fitter overall. Always make sure to pace yourself and try not to rush. Cardiac rehabilitation is an excellent service to help increase exercise levels safely. Your HFSN or your GP will be happy to refer you if you would like to participate.
• Please ensure you have any immunisations you are offered, to protect you from potentially serious illnesses.
• Anxiety is common if you have heart problems. If you feel anxious, taking slow deep breaths can sometimes help. If anxiety is impacting you daily life, we can signpost you to services that can help you. Alternatively, please speak with your GP.

Monitor

• Please remember to weigh yourself every day.
• If you can, please keep a record of your heart rate, blood pressure and weight so you can quickly spot any changes.
• Please keep a record of your medications.

Make Us Aware

• Please report any changes to symptoms, even if you are not feeling unwell.
• Please report any issues you may have with medications.
• Please report any changes you think may be due to your condition.

Just like other long-term chronic conditions, there may be a time when the medication is no longer able to keep the symptoms under control.

If the focus of management changes from prolonging your life to managing symptoms such breathlessness, fatigue or oedema, there should be a discussion with you and your loved ones regarding how you wish your condition to be managed.

It would also be good to know in advance what actions you want taken, if we are unable to keep your symptoms managed by our team alone.

It is preferable to have these discussions when you feel well enough to make these decisions at your own pace.

Palliative Care is a team of Specialists who manage symptoms when emphasis is on quality of life rather than prolonging life. We will discuss referral to this team, if we feel this is required.

Palliative Care is described as ‘an approach that improves the quality of life for patients and their families facing the problems associated with life-threatening illnesses though the prevention and relief of suffering by means of early identification and impeccable treatment of pain and other problems, physical, psychosocial and spiritual’.

Palliative Care input can be given at the same as other treatments, specialist teams often work together to manage symptoms effectively.

Having sufficient information to manage your condition is important. We are happy to answer any questions you may have in clinic, or over the phone.

There is a wealth of information available online, and in publications such as magazines and newspapers. However, not all this information is accurate or based on good clinical evidence.

If you read something that seems useful or relevant to you, please discuss with us or with your GP. Please do not change or stop any medications unless you have spoken with us or your GP.

We are always happy to discuss your heart related matters, please call.

It is much easier to help with milder symptoms, so please do not wait to call us.