Managing an Illness at Home - Sickle Cell

Assessment of an illness

A person with sickle cell disease must learn about their chronic illness, get to know how it affects them as an individual for example things that can trigger a sickle cell crisis for them and how to avoid or minimize those things, which medications works best for them, why it is important to take the recommended medications, vaccinations and treatments. By following this simple advice it is possible to prevent many of the complications associated with sickle cell disease.

It is essential to know how to assess for differences between when one is feeling well and when one is becoming unwell. In order to do this one must be alert to how their body feels when it is well, a period called a ‘steady state’ and how it feels when it is becoming unwell. Some people say they experience a sensation where they feel different, even before symptoms of an acute illness occur.

Managing Fever

Because fever is a common symptom of illness it is important to keep a thermometer at home to be able to measure the body temperature and act accordingly if there is a fever.

Where a person’s temperature is above the normal range of 37.4° Celsius any excessive clothing should be removed. If the temperature continues to rise and the individual feels feverish they individual should be sponged with warm water, allowed to rest, given an anti fever medication such as Paracetamol and plenty of water to drink, this may be sufficient for reducing the fever and averting a worsening of the symptoms.

If the person’s temperature continues to rise and is above 38° Celsius they must be seen by a medical doctor, it is advisable to call the GP in the first instance.

Where there is vomiting and or diarrhoea and especially if the individual is unable to eat or drink they must see their GP straight away for treatment of any underlying infection, the GP may advice that the person should go to hospital in order to be given other medical care, for example a drip so as to avoid the dangers of dehydration.

Sickle cell crisis pain

For information on managing children with sickle cell disease including managing sickle cell crisis pain see Care and Management of your child with sickle cell disease – A Parent’s Guide.

By adulthood the majority of people with sickle cell disease know which pain medications work best for them especially when they are experiencing a mild to moderate sickle cell crisis pain.

Quite often they can also differentiate between sickle cell pain and a pain that is caused by other ailments. That is why it is important for health care providers to listen when the patient says their pain ‘feels different’ or does not feel like a sickle cell crisis pain.

Mild Pain

Where pain is mild most people can cope by taking a pain remedy such as Paracetamol or codeine phosphate, for those above 12 years of age these are usually taken every four to eight hours but not exceeding the maximum dose stated on the packaging. In addition they should drink plenty of fluids (preferably warm drinks) and rest, with these actions the pain usually subsides.

Mild to moderate pain

Where the pain is mild to moderate and the individual is still able to cope and manage the pain at home it may be necessary to use a stronger pain reliever and most patients cope by using slightly stronger medications such as DF118, codrydamol, diclofenicl, tramadol and ibuprofen. But care needs to be taken to ensure one uses these medications as prescribed, using the correct dosage and using it at the correct time intervals. Any side effects such as nausea or vomiting should be reported to the GP as it may be necessary to consider changing the medication or prescribing an accompanying drug to relieve symptoms of nausea.

Moderate to severe pain and emergencies

If the individual is getting no relief from the painkillers or the pain is severe or there is sign of an emergency it is best to get the individual to hospital. If they able to cope with travelling by car this may be used to transport the individual to the Accident & Emergency department of the local hospital; if the individual is too unwell to travel by car an ambulance should be called by dialing 999, see also Emergency Services.

Other actions for relieving pain

Extra fluids

People with sickle cell disease should always be encouraged to drink plenty of fluids even when they are well. When they are unwell extra fluids can help thin out the blood and unclog the sickle cells in the small blood vessels. Dehydration (not enough water in the body) is known to be one of the causes of sickle cell crisis pain. The fluid can be in any form water, tea, juice, dilute to taste squash, but avoid cold, fizzy and alcoholic drinks as these may make the symptoms worse and alcohol will dehydrate the body even further.

Warm baths

During a mild to moderate sickle cell crisis many people find soaking in a warm bath soothing and helps to relive the symptoms and the warmth of the water help dilate the blood vessels and may help relieve the crisis. It is important to make sure that the water is not too hot or get cold because this can trigger another crisis. When a person is in pain sometimes gentle exercise in the warm water feels relaxing and relieves anxiety.

Heat pads or warm moist towels

Heat pads can be bought from the chemist to put on the painful area. They my be electrical, in which case you need to adjust a temperature dial. If it is not an electric pad it may need to be heated it in warm water. Always check the maker’s instructions. If using towels these should be wetted in warm water and wrung out and applied to the area, the process may need to be repeated several times as the towel gets cool. Heat pads or warm towels can be applied as often as desired if they help ease the symptoms.

Massage

When one is in pain a gentle massage can be soothing and comforting. This is best done in a warm environment to prevent chilling. Using warm baby oil or lotion the painful area should be gently massaged to help relax tense muscles and increase blood flow.

Distraction

During a sickle cell crisis complete bed rest may or may not be needed. Sometimes cutting back on physical activity can be helpful. Focusing one’s attention on the pain can make the experience of the pain worse therefore distraction is a very useful technique for helping to relieve pain.

Doing things that takes a person’s attention away from the pain may be useful for example reading, watching television, doing art work and doing puzzles. Anything that can help to distract the person’s attention away from the pain will be useful.

Seeking medical help

If having tried all the remedies mentioned and the person still has a high temperature or their pain has not been relieved by the medications given or their condition appears to be getting worse it is best to seek medical help. It is advisable to call the GP in the first instance and she / he who will be able to advice about what to do next and may visit the person at home. Alternatively one can call NHS Direct on  0845 4647 or visit their website www.nhsdirect.nhs.uk, they will be able to offer advice on further actions that can be taken.

During working hours (9am – 4pm) patients who are registered at Central Middlesex Hospital can call the specialist nurse for advice by dialing 020 8453 2562.

There are some medical emergencies where the person will need prompt medical attention. These are explained under medical emergencies. In these situations the person will need to be taken to hospital straight away; if they are able to travel by car they can be taken by car otherwise an ambulance will need to be called by dialing 999.