Many doctors from all sorts of specialty areas may wish to treat you at some time during your life. If the treatment is significantly stressful to your body, and/or invasive, then you may need to be in hospital. As an Addisonian, some dental procedures, day surgery (e.g. endoscopy, colonoscopy, key-hole surgery, etc), and certainly major surgery requires some preparation.
Here’s a checklist of things you can do to educate your medical team, and hopefully make your time in hospital diagnostically useful and medically uneventful.
1) When visiting your specialist, and surgery is discussed as an option, remind them that you have primary or secondary Addison’s Disease, as well as any other medical conditions. Having this condition, means that you will require increased steroid replacement and electrolytes by I.V., before, during and possibly after the procedure until you are stable and able to take your replacement steroid by mouth again.
2) Speak to your G.P. and your endocrinologist, and prime them to be available for consultation before, during and after the procedure. Make sure that they are happy to do so.
3) Make several (3+) copies of the NADF Protocol for surgery (this is available from the Association and can be copied), and your personalised medical history, stating clearly your conditions, medications, allergies and sensitivities, and operations. Also have the phone numbers of your G.P., endocrinologist and the specialist in charge of this procedure clearly visible.
4) When booking in to the hospital, take along a copy of the NADF Protocol for Addisonians undergoing surgery, as well as your individualised medical history. Leave one copy with the administration staff, and request that it be attached to your notes.
5) On admission to hospital, present your admission information, NADF Protocol and a copy of the personalised information you gave when booking into hospital. Again request that it be read and attached to your notes.
6) When being seen by interns, registrars and nursing staff, have the other copy of the NADF Protocol and your personalised information with you, ready to present. Sometimes it helps to ask these staff members to read it first, and then proceed to answer their questions prior to surgery.
7) Try to state your specific requirements clearly.
8) If you have trouble with staff who do not realise the potential difficulties that, as an Addisonian, you might have with anaesthesia, and/ or any preparation you might have had or will have to do for an operation, then refer staff to your personalised information sheet. Also refer them to your G.P. and your endocrinologist.
9) Remind staff that you will need an I.V. for steroid replacement and electrolytes. This should be in place before surgery. If your procedure requires fasting, you might need to have the I.V. in situ the night before surgery.
10) Note: Some procedures and their preparation, can be quite dangerous for people with Addison’s disease, and people with compromised immune systems. (e.g. procedures which require fasting, or bowel cleansing, or involve taking preparatory medications, or ceasing medication prior to a procedure, etc.) Some older people and those with chronic illnesses (eg. Sjogren’s Syndrome) find that the sachets taken prior to a bowel colonoscopy actually considerably dehydrate them. Be alert to this possible problem, and, in discussion with your doctors well ahead of the procedure, request a drip to be in place, as soon as you have to start taking the sachets. You might even need to be in hospital the day before the colonoscopy. Discuss these options with your specialist and G.P., and try to organise for their eventuality ahead of time.
11) Be aware that the increased dosage of steroids, necessary for you to cope with surgery, may make you feel VERY HOT, especially as you come out of the anaesthetic. You might also feel restless, and agitated. You may experience increased heart rate. Your BP may be very low, and you may take longer than other patients to recover. If you have a history of any of these events, alert your specialist, and the staff before the operation. You might also need to contemplate a longer recovery time.
12) If you have difficulty communicating your requirements while in hospital, you can ask the staff to verify what you request with your specialist, endocrinologist and G.P., by phone. You can also prime a relative or friend to ‘act for you’, and get them to ring the specialists and G.P., if you are feeling too unwell, or are unable to speak clearly yourself.
13) In future, things will hopefully be even easier, as the E-Health initiative to have voluntary records of patients stored on computer data, is put into action. This information will be accessible at each place where a health event occurs (like a trip to Emergency, surgery, etc.). It is to be designed to carry patient history, usual medication regime, allergies, sensitivities and any other voluntarily-provided information the patient deems useful, (e.g. past experience with anaesthetics or procedures that had adverse outcomes).
You have the right to be treated appropriately, politely and with care, while in hospital. Very few medical staff have even heard of Addison’s disease, or read the small amount of information about adrenal function in the endocrinology part of their course. It can be very helpful to be organised yourself, well-prepared and well-versed in your condition and its requirements. Most staff will be open to learning more about Addison’s disease. For those staff that are unhelpful, then it is very appropriate to seek support from your G.P., endocrinologist and current specialist. One well-timed phone call can “grease the wheels” for you, while you are in hospital. The staff will very soon learn how delicate we Addisonians can be.
Communicate clearly, be well-prepared, and offer education in a written form that has medical authority, to those who will be caring for you.
It should be everyone’s aim to maximise the effectiveness of your diagnostic procedure or treatment while in hospital, and minimise complications. No-one wants to spend more time than they need to, in the High Dependency or general ward post-operatively, do they?
Robyn Atwood
(Email her here)
