Your doctor and the nutrition team will have calculated the amount of nutrients you require in your PN to keep your body well nourished. This is done by making measurements of your weight, height and by blood tests and urine collections. Changes may be made to your feed to meet your on-going needs. Due to PN being prescribed on an individual basis, some people may make additions to their PN, if this is necessary you will be taught how and when to do this.
This will vary according to your condition. Your doctor may suggest that you eat and drink as well as receiving HPN. In fact you may wish to continue eating and drinking on a social basis, which even if your digestive system is unable to absorb the nutrition may help you to feel included in social activities. Your doctor will advise you whether you are able to do this. This is one aspect that may change from time to time depending on your personal needs. If you are constantly thirsty you should contact your doctor or nurse and oral fluids will not replenish the thirst and may actually be detrimental to you. There are some oral mixtures for patients who want and need to drink which contain sugars and salts, these may be suggested on an individual basis.
Most people on PN feed whilst they are asleep however it is well documented that the infusion time often extends beyond time spent asleep. You will determine how best to fit in the time you require in order to complete your infusion time with your lifestyle. During the night sleep patterns may be disturbed due to necessary visits to the toilet. Many people find they adjust to this over time but people reported sometimes feeling tired depending on the number of times they need to get up. Feeding as much overnight allows freedom during the day, evening or morning. Each person’s infusion time will be agreed in line with your personal needs. New patients may be given a set time with this being reduced over time.
Seek medical attention at once. Depending on type of damage to the line you will be given appropriate advice from your unit. Always clamp off the line if there is damage to the external segment of the catheter. It may advisable to ensure you have a pair of plastic clamps at home in the event that the clamp breaks, these can be requested from your unit or home care provider.
Parenteral Nutrition (PN) is a means of supplying your body with nutrients and hydration which bypasses the digestive system. This is achieved through the insertion of a catheter directly into the bloodstream, through which a feed that is specific to your needs is administered. This is commonly referred to as Total Parenteral Nutrition (TPN) or HPN.
TPN is a common abbreviation for TOTAL PARENTERAL NUTRITION. This literally means to eat (-enteral) through the vein (par-). However the terms PN (Parenteral Nutrition), HPN (Home Parenteral Nutrition) and TPN are often used interchangeably.
YES, always tell them! If anyone tries to attempt anything with your line that you are not fully happy with always say something. If you are not at your usual hospital then ask them to speak to your own team for advice. There are variations in protocols but at no time should you feel your safety is being compromised. If you feel good practice is not being carried out ask to speak to the ward sister or the consultant currently looking after you and get your point across. This is where written literature from your own unit or hospital is important to demonstrate the standards of care you use. Unfortunately there are still medical staff out there that are unaware of how important the lines are and remember not all staff are trained in Parenteral Nutrition and you will probably find that your own knowledge is far more extensive than theirs. Try to work with people to ensure you are comfortable in their care; being in a hostile situation is non productive for all concerned. Never be afraid to speak up, it is your life line, you have a voice, use it!!
A very fine soft tube known as a ‘catheter’ is inserted under the skin of your chest wall into a large vein that leads to your heart. A local anaesthetic is given beforehand to minimise any discomfort. A mild sedative may also be given while your catheter is being inserted. The procedure is normally done under Xray guidance. Once the correct position of the tip of the catheter is confirmed it can be connected to a container of PN fluid using a giving set.
If you have a temperature soon after your have started to feed then you should seek advice immediately or follow the instructions you have been given. You may also experience shaking, ‘rigours’. Not all infection start soon after feed has been set up. If you find yourself having cold or flu like symptoms and just do not feel right contact your unit or follow the instructions you have been given. If you suspect that the line is infected seek medical advice immediately. The sooner the infection is diagnosed, or ruled out, the better it is for you and your line. The only way of knowing for sure whether your line is infected or not, is by having a blood cultures taken which will be monitored by your unit to see what grows. Watching for early indications of an infection are key to your personal welling being - these include redness, pain and /or discharge from the entry site, and you may experience systemic symptoms such as fever, headaches, lethargy. If in doubt ask, better to be safe than sorry.
Central line dressing should be kept dry at all times although each individual unit or hospital will have their own guidelines for water activities, e.g. bathing, showering and swimming.