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The group discussion on Home Infusions was the most popular event of the Workshop. Sandy Maclachlan facilitated with the help of specialist nurses from three Gauchers Centres: Liz Morris from Addenbrooke's Hospital, Linda Richfield from the Royal Free Hospital and Lorraine Burnett from the Royal Manchester Children's Hospital. Dr Paul Schofield also gave advice. The session began with a video showing Sandy being trained by Liz during her first Cerezyme infusion. All the equipment needed for infusions was on display in the room. The following is a summary of some of the tips and points discussed:
The first infusions of Cerezyme should take place in a medical environment: either at hospital or in a GP's surgery so that they can be monitored by a doctor or qualified nurse.
If you are transferring from Ceredase to Cerezyme, the first infusions should also take place in a medical setting.
If you are learning how to infuse yourself, allow yourself time to become fully confident in the whole procedure, before starting at home.
Some people prefer to do their own infusions at home, often with the help of a family member, but some prefer to continue at their hospital or GP. It is best to do what suits each individual. Choose which one you want.
It is natural to experience anxiety during first infusions, either when starting Ceredase or transferring to Cerezyme. Putting a ?foreignµ sub-stance directly into your blood stream can be worrying or frightening but you do get used to it.
If you feel you are experiencing any side effects, do not hesitate to contact your doctor.
A green topped 21mm syringe needle is recommended to draw up the Cerezyme/Ceredase. A white topped 25mm syringe needle is wider and should not be used as it has been known to scrape the rubber cap of the bottle and allow a sliver of rubber to contaminate the infusion solution.
Most people find the easiest and least painful way to infuse is to use a butterfly needle. There are three sizes type 21 (green packet) for normal veins; type 23 (blue packet) for small veins; type 25 (orange packet) for very small or difficult veins. If you have difficulty getting a needle into your veins, choose the smallest.
Keep a strict aseptic (clean) procedure. Wash your hands (antiseptic scrub is available*) and use a clean surface to prepare everything for infusion (an antiseptic sheet and tray is available*).
Keep warm before and during infusions. Have a warm bath and/or hot drink beforehand. Keep a hot water bottle on your lap if it helps. Keep the room warm.
Soak the hand you are going to infuse in very warm water for about 5 minutes. Remember when you are cold, your veins shrink.
One mother said when she inserted a butterfly needle into a vein of her daughterµs hand, as she let go to get the tape, the needle came out. Sandy suggested she stick a strip of micropore tape onto the butterfly part of the needle before it was inserted into the vein. Then the tape could be stuck to the skin before she moved away.
If you are infusing a child, use a calm or quiet part of the day: perhaps towards evening while watching TV or reading a book.
Add the Cerezyme/Ceredase solution to a bag of 100ml of saline. Do not take any saline water out. The bag can safely take up to 150ml of liquid but if you need to put more volume in, you will need to take some saline out.
At the start of infusion, air bubbles may travel down the length of the tube of the giving (infusion) set. You can get rid of these by flicking or tapping the side of the tube where the bubble is. Air travels upwards so hold the tube straight so that the air can escape upwards towards the saline bag.
Some people flush the saline through the giving set before injecting the Cerezyme/Ceredase into the bag. This way the bubbles can run through the tube and out the other end (before the butterfly is fixed). A small amount of saline is wasted which does not matter. Then the Cerezyme/Ceredase is injected into the saline bag.
A few bubbles may occur after the giving set (containing the saline) is attached to the butterfly tubing (which is full of blood). Dr Schofield assured the audience that this amount is okay to enter the body. However the giving set must be full of saline. If empty, that amount of air could be fatal.
Keep calm and try another vein. If you miss two or three times, stop. Keep your saline bag (with the Cerezyme/Ceredase in it) in a cool place. Either have a drink and relax for a while (10 minutes to an hour) keeping warm and try again. Or put the saline bag in the fridge and try again the next day allowing the bag to lose its chill in room temperature. If you don't want to try again, phone your doctor and ask for a nurse to do it for you. The Cerezyme/Ceredase can be safely kept for 24 hours in a cool place (ie fridge or cold bag with ice brick).
If you experience a slight burning sensation at the site of the needle during infusion, it may improve if you move the angle of the needle. It may also help to alter the speed of the drops, either by making them slightly faster or slower. Do not run it too fast - no faster than 2 drops a second.
If the site becomes very painful, the needle may have come out of the vein or pierced through the other side causing it to ?tissueµ (a bubble will soon appear).
Stop the infusion immediately, take out the needle and press on the area for a few minutes to prevent unnecessary bruising. You will then need to try again on a different vein.
It is possible to obtain a giving set with two outlets for two saline bags. This way after the Cerezyme/Ceredase bag has finished, the new bag can be switched on without the need to remove the old bag and insert a new one to flush the remaining Cerezyme/Ceredase through the giving set.
* Healthcare at Home supplies this equipment and can provide nursing help.
Editor's Note: Everyone tends to carry out their infusions in a slightly different way. If it works for you, then it's okay. If you have any tips, please write to us and let us know.
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Source: Gauchers News July 1998
© Copyright Gauchers Association 1998