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TRANSFUSION STAGES
Visit day unit Reason for transfusion programme identified
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
Discussion in clinic
- 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
Make sure each of these points is covered at your clinic appointment
- 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 C AN T R AN SF US I ON PAT HWAY
IV access review
- 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
Blood Tests
Are there any barriers to proceeding?
Checks prior to starting a transfusion programme
- You should visit the day unit or
the 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
In the 72 hour prior to transfusion
- You will be asked to come for a
blood test a few days before transfusion
The week before transfusion Transfusion day
- 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 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
On the day of transfusion
- The availability of staff or blood
can slow things down, but you should expect delays to be minimised
- 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
C AN T RAN S F USI ON PAT HWAY
- 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
Long term follow up and review Up to 2 weeks after transfusion
- 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
Up to two weeks after transfusion
- 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
Continue or Discontinue Transfusions
Add in or change to Hydroxycarbamide/ Novel therapies
Long term follow-up whilst on a transfusion programme
- 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 count
and iron level monitored every 3 months
- You should be offered
psychological support alongside medical care
- Keep a diary of how you feel
after the transfusion so you can review its effects with your medical team C AN T R AN SF US I ON PAT HWAY
High iron related to being on the top up transfusion programme (Ferritin > 1000)
- 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
TOP TIPS
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
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 wish to put headphones in before you start, and adjust volume to desired level
- 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’
Despite being daunting and something I fought for a long time, having exchange transfusions allows me a better quality of life, reduced frequency and severity of hospital admissions and a fighting chance at life when things take a turn for the worse, Absolutely grateful and blessed to be able to access this treatment. CAN PATHWAY
CANTTRANSFUSION
RAN SF US I ON PAT HWAY
CONGENITAL ANAEMIA NETWORK
We are a group of patients, carers, doctors, and scientists who are all interested in patients with rare inherited anaemia. This guide can be used to guide starting a simple transfusion (bags of blood) programme or an exchange transfusion programme.
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