The issue of self-management is very important in the life of someone with SCD and over the years, people have asked me what I do to stay healthy. I decided to write something about it because if you don’t make it a point of duty to know yourself and also to know how to manage this life long sickness, then it is possible that one would be depressed all the time, one would have a loss of appetite, not want to socialise or go out and feel lethargic. As a result, the issue of self-care is important.
When I went to the user group meeting a couple of months ago, the issue of self management was discussed. If you have or are looking after someone who has SCD, then, it is important that you know or help the patient with SCD know about self-care, as it is an vital aspect of managing a chronic disease. SCD is varied in the way it affects one person to the next.
I believe the following will help you focus more on the issue of self-care:
One of the issues of self-care is what to eat, drink and take (tablets wise) on a daily basis; Treatment of infections; Management of chronic complications as a result of Sickle Cell; What to take when you can feel the pain coming up; What to take eat when not well; Knowing when to go to hospital as a day patient or go to be admitted; Prevention of complications in the life of someone with Sickle Cell.
For sickle cell crisis, when the severity of the episode is assessable, self-treatment at home with bed rest, oral analgesia, and hydration is possible and also recommended. I for one will present to the emergency department (ED) after self-treatment fails at home. I have a personal chart that the nurses have to adhere to when I go in as a day patient, because when I am sick; the last thing on my mind is to tell them what works for me and what doesn’t. I am in too much pain that I can barely speak and so the first few tablets, injections and IV that I am given is very important. Can I encourage you to write out or to have written down what works for you or you loved one when you go to hospital. In all of this, it is important to drink plenty of water.
PAIN – Vaso-occlusive pain episodes experienced by patients with sickle cell disease vary tremendously in frequency and severity. Some patients rarely have painful crises, while others spend the greater part of a given year in the hospital receiving analgesics.
The mode of onset of sickle cell pain crises likewise varies. Patients can develop agonizingly severe pain in as little as 15 minutes. In other instances, the pain gradually escalates over hours or even days. Patients manage most episodes of pain at home.
Oral analgesics, combined with rest and fluids often allows a person to “ride out” the pain episode. Some patients report that warm baths or warm compresses applied to aching joints ameliorates the severity of the pain. The sites affected in acute painful crises vary for each patient.
Pain occurs commonly in the extremities, thorax, abdomen, and back (Ballas and Delengowski, 1993). Pain tends to recur at the same site for a particular person. For each person, the quality of the crisis pain is usually similar from one crisis to another.
OPIOD -The pain experienced with an acute painful crisis typically is quite severe. Most patients describe a full blown crisis as the most intense pain that they have ever experienced. The pain sometimes increases in severity slowly over a couple of days. At other times, a crescendo is reached in less than 15 minutes. Pain control often requires large quantities of opiod analgesics. The exact amount varies, and depends in part on the frequency with which the person requires opiods.
Patients often feel that one analgesic controls pain more effectively than others. Therefore, they should be questioned about the kind of medication that has worked best in the past. Also, some patients may experience reactions with one analgesic (e.g., itching with meperidine) but not with others (Pegelow, 1992).
Pain relief occurs more slowly with intramuscular injections, and the injections themselves can produce substantial discomfort. Consequently, intravenous administration of analgesics is usually preferable. As pain control improves, the analgesia should be maintained to prevent the patient from slipping back into a painful cycle.
Patients can become drowsy as their pain is controlled. Often, this reflects the fatigue that comes with one or more sleepless nights with pain at home. The analgesics should not be discontinued automatically for somnolence as long as the patient is easily aroused. A common misconception is that if a person is sleeping, the analgesics are controlling the pain. Patients often sleep despite severe pain. The quantity of analgesia can be slowly reduced as the patient’s symptoms improve. While the tapering of intravenous analgesics can require only two or three days, control of a full blown crisis often requires 10 to 14 days. Less commonly, bouts of sickle vaso-occlusive pain require several weeks to control.
NSAIDs can impair kidney function and accelerate the renal injury produced by sickle cell disease itself. For these reasons, many specialists avoid NSAIDs in patients with sickle cell disease.
TRANSFUSION – Simple transfusion is not an effective intervention for the management of acute painful episodes in patients with sickle cell disease. Exchange transfusion has been used in attempts to alleviate bouts of severe, intractable pain with better effect, overall (Davies and Brozovic, 1989). In addition, chronic transfusion therapy has been used to decrease the frequency of pain in patients with recurrent debilitating painful crises (Keidan et al., 1987). While sometimes effective, this approach as a number of problems, as detailed below.
Indications for urgent referral to hospital in sickle cell disease
Severe pain not controlled by simple analgesia or low dose opioids
Dehydration caused by severe vomiting or diarrhoea
Severe sepsis: temperature >38.5°C or >38°C if under 2 years old, temperature <36°C, or hypotension
Symptoms or signs of acute chest syndrome including tachypnoea, oxygen saturation more than 5% below steady state, signs of lung consolidation
New neurological symptoms or signs
Symptoms or signs of acute fall in haemoglobin
Acute enlargement of spleen or liver over 24 hours, particularly in young children
Marked increase in jaundice
Fulminant priapism lasting more than two hours or worsening of recurrent episodes
- Acute infection