Transfusion Pathway

What is a transfusion programme and why may it be considered

There are 2 main types of blood transfusion: a simple top up which may involve 1 or 2 units of blood or an exchange blood transfusion where your blood is removed by a machine at the same time as non-sickle blood is given to you
Repeated chest crises, painful crises or suffering from the effects of low haemoglobin, without sufficient improvement on hydroxycarbamide, or in patients for whom hydroxycarbamide is not an option
A history of stroke/s or a raised Transcranial Doppler result/s
You should have the opportunity to discuss any concerns you may have about being on a transfusion programme with your medical team

You should be listened to and a joint decision made by you and your medical team
You should get the chance to explore your thoughts and feelings about transfusions
You should be aware of the other treatment options available and given time to reflect on these
You should be informed of the expected short and long term benefits, and potential risks associated with different types of transfusion programmes
You should expect someone to take time to detail the practicalities and time commitment involved
You should get the opportunity to discuss any concerns you may about being on a transfusion programme with your medical team

Checks prior to starting a transfusion programme

You should visit the day unit orthe transfusion unit for a vein assessment
If your veins are tricky, someone should discuss the alternatives with you
You will have blood tests to check for viruses and to enable close matching of transfused blood

You will be asked to come for a blood test a few days before transfusion
You may be required to pause any blood thinners in the day prior to transfusion. Your medical team should discuss this with you

You should expect the person inserting the needle to do so with the minimal number of attempts, but it may not always be possible
The nurses will monitor you closely during the transfusion, and explain what is happening at each stage
You should be prepared to be in hospital for up to 8 hours so bring things with you to keep you entertained. You may find activities that keep your hands free are easier
The availability of staff or blood can slow things down, but you should expect delays to be minimised
The solution that keeps the blood flowing around the machine used for exchange transfusions can lower your calcium levels and make you feel dizzy. Please let your nurse know and they can supplement your calcium levels
On the day of your transfusion a member of the team should always explain any possible side effects you may experience in the days after your transfusion prior to you going home

You must contact your medical team if you feel unwell, have a fever or develop yellow eyes or skin as this may suggest a reaction to the blood
Keep a diary of how you feel after the transfusion so you can review its effects with your medical team

You and your medical team will regularly review your progress whilst on the transfusion programme. Sometimes small adjustments can make a big difference
You will have your blood countand iron level monitored every 3 months
You should be offered psychological support alongside medical care

You will have an MRI scan of your liver and heart every 6-24 months depending on how high your iron levels are
You may be started on medication (chelation) to bring your iron levels down

It’s natural to have a range of feelings about starting on a transfusion programme, please do share these with your medical team
Try as much as possible to hydrate well the day before your transfusion, aim for 3 litres or more. Some people having exchange transfusions like to drink milk to supplement their calcium levels
Eat and use the toilet beforehand as you will be attached to the transfusion for at least a couple of hours
You may wish to put headphones in before you start, and adjust volume to desired level
Watching tv or listening to an e-book are good distractions, as these keep your hands free
Ensure you have everything you might need/want close by before your transfusion starts i.e: headphones, food, book etc.
If your veins are tricky, ask for a heat pad (if available) before needle insertion. Some hospitals may use warm water instead. This makes your veins more visible
You may feel tired/weak or have sickle-type pains after your transfusion, this may last a few days and is to be expected. If it lasts longer, you feel unwell or the pain cannot be managed, let your medical team know
Have a snack during (if possible), or shortly after before you go home
If possible, arrange for someone to pick you up and take you home
Dressings are best removed in the shower the day after, or ask for/buy dressing removal spray
You may feel wiped out the next day. If possible plan for a light day’