You may need to have an operation (surgery) for many different reasons.
Sometimes the surgery might be related to mitochondrial disease (mito), like a muscle biopsy, or eye surgery. Other times, the surgery may have nothing to do with mito, like having your appendix removed.
For people with mito, there are some important things to understand. Knowing a little bit about how this works can help avoid problems when having surgery. It's good to be prepared and helps keep you safe.
This information focuses on planned surgery, not on emergency surgery.
It is hard to plan for emergencies, but there are ways you can help.
Make sure you have current (up-to-date) details of your main care team. This includes your General practitioner (GP), mito specialist and any other health professionals who know you best.
Copies of the Australian Patient Care Standards for mito and the Important information about medicines provide your surgical team with extra information as they may not have heard about mito. This is important because the surgical team may not know a great deal about mito.
Understanding the risks
Almost all medical procedures have risks, and surgery is no exception. When evaluating risk, consider the duration of the operation, the type of anaesthetic to be used, your age and overall health.
Even with advancements in surgical techniques, unwanted or unexpected outcomes can still occur. It’s important to discuss potential complications with your Surgeon and Anaesthetist. Please do this before (for example, during your consultation) and also on the day of surgery. You and your surgeon should believe the benefits outweigh the risks. In other words, you should gain more than you might lose from the surgery.
Talk to your Surgeon about your options. It’s possible that there is more than one solution to your problem – perhaps several different operations or procedures. Sometimes, not having an operation at all might be the choice that’s most right for you. If you're unsure, ask for a second opinion from another specialist.
The modern term for your experience from the start to the end of any surgery is ”the perioperative care journey.” This includes the time from a surgery referral to discharge, rehab, and follow-up with your usual doctors. There are many considerations, including deciding whether to proceed with the surgery or procedure, or not.
Before surgery
Before the day of surgery, a preoperative assessment will check if you're fit for surgery. This assessment may be carried out in person, or over the phone. It may also be carried out in two parts, over the phone before the day of surgery, and in person on the day of surgery. Experienced health professionals do the preoperative assessment. This usually includes the Surgeon or another surgical team member, and the Anaesthetist or another member of their team.
During the perioperative assessment, you will be asked about your medical history. They will also ask about any medications you're taking. You must tell them about all the medications that are prescribed to you, as well as any supplements or herbal medicines, as these could affect the surgery and your recovery.
During the assessment, ask about taking your regular medications on the day of surgery. Certain medications, like blood thinners and diabetes treatment, may need modified instructions. You may also need to have additional tests, such as blood tests or scans.
If the surgery you're having is a minor procedure, you may not need to go to a preoperative assessment. Your specialist will discuss the surgery at one of your usual appointments. They will also explain how to prepare.
Our experiences with general anaesthesia for our son have been quite variable. When our mito specialist arranged for a specific anaesthetist and we had a thorough pre-procedure discussion, the surgeries went smoothly and we felt confident in his care. However, when we didn’t meet the anaesthetist beforehand, we faced significant issues, including being asked to reschedule surgery at the last minute. I firmly insist on a preoperative assessment with the treating anaesthetist or a member of their team, as this is vital for someone with mito.
- Fiona (Parent of child with mito, 2024)
For elective surgery, it is usually possible to discuss the surgery with your mito specialist. If you have a mito specialist and they feel that you're at increased risk from the operation due to mito, they should give you a letter, wallet card, and/or an emergency plan. These should include your diagnosis and clear instructions for the surgical team.
Such instructions should also advise the Surgeon and Anaesthetist which health professional to contact if they have questions about mito. This is important if the surgical team is unfamiliar with mito or if they come across any unusual issues.
The Australian Patient Care Standards for mito suggest that anyone with mito should have a detailed respiratory assessment. Your Anaesthetist should arrange this before surgery. It’s also advised to limit the use of opiates such as morphine, as they have a risk of causing breathing problems in people with mito, and could prolong your recovery.
Surgical care should be tailored to your type of mito, any other health issues you may have, and the reason for surgery. Where possible, it is sometimes better to be admitted to the hospital the night before elective surgery. This allows for a thorough preoperative Anaesthetic evaluation and safer preparation for surgery. This ensures the best care.
It is important to plan how you’re going to get to the hospital and how you’ll get home when you’re discharged. It’s best to ask a family member or friend to help you get home. You may also need some help at home afterwards.
On the day of surgery
If you’re having a general anaesthetic, you will need to stop eating and drinking for some hours beforehand, known as fasting. This may also include stopping some regular medication, including any supplements you take. However, people with mito should avoid fasting for longer than required and, where possible, will be placed first on the surgical list.
Ask the Anaesthetist for specific instructions about taking your regular medications and supplements on the day of your surgery. Certain medications, such as blood thinners and diabetic medications may need to be modified.
It is recommended that if you take regular supplements and are admitted to the hospital, your supplements are continued. To keep taking your supplements, take them with you on the day of surgery. Keep them in their original packaging, with your recommended dose for each medication and supplement documented. You can also ask your GP or pharmacist for a printed list of all your prescription medications.
We encourage you to take two key resources with you on the day of surgery.
Firstly, the Australian Patient Care Standards for mito, has vital information about the effects of mito and preventative measures. Secondly, Important information about medicines. That contains details about medicines that should be used with caution in people with mito.
After surgery
Ask your care team about your hospital stay after surgery. Some people might leave within hours, while others might stay in hospital for days. Some may even wake up in the Intensive Care Unit (ICU). This depends on the type and duration of surgery, the anaesthetic used, and your overall health.
Considerations
The Australian Patient Care Standards for mito, provide surgical information and guidance for health professionals.
Important information about medicines contains details about medicines that should be used with caution in people with mito.
The information provided focuses on how you can prepare for your medical appointments. It also focuses on how your mito specialist can support your ongoing care, to ensure you receive the right care.
You have the right to make informed decisions about your healthcare. This includes asking questions, being part of discussions and making choices.
Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.
Acknowledgement: Mito Foundation acknowledges the valuable contributions of our reviewers, we thank Dr Boris Tseitkin (Intensive Care Physician / General & Perioperative Physician) MBBS BMedSc MMed (Periop) FCICM FRACP for his review. As well as Zach, Diane, Fiona, Michelle, and Alice, members of the mito community resource review panel.
Author: Mito Foundation
Version: 2
Date published: 25 September 2024
