Kenneth, stem cell donor

Things to consider

Thank you for agreeing to donate and getting this far. It’s a very special thing you’ve signed up to do, and for that reason, we want you to know as much as possible about the things you may encounter on your personal donor journey.

Please soak up all the information on this page

Stuart Brooks

Read every section and think about how each of these might affect your routines, and your mental and physical health.

It’s important to say that lots of people have a very positive experience of donation, and afterwards want to shout from the rooftops about their experience, and how everyone should do it! But if you have any worries or concerns, either now or after reading, please speak to us. The last thing we want is for you to feel backed into a corner and unable to say if you’re feeling anxious or unsure about anything.

Because the truth is, donating your stem cells can be stressful and emotional, and you might not feel great at certain points, either. We can’t predict how your journey will develop – there are so many factors at play – but we do know it’s on us to make sure you have as much information as possible beforehand, so there are no surprises along the way. 

So please give serious thought to everything on this page. Think about how it may affect you, and things you could do to help yourself. Above all, we are here for you and we want to listen. Keep in mind, help is only a phone call or message away: Reach out to your coordinator - you'll find their contact details in the emails they've sent you. If you're not sure just message donorprovision@anthonynolan.org or call 020 7424 6699 to speak to someone in the Donor Provision team.

Things to consider

Your work and family commitments, your ability to take time out, and your general physical and emotional health.

Being in hospital

+
-

You’ll need to be in hospital for your medical check-up and your donation, and in some of our collection centres, there’ll be patients undergoing treatment in beds next to yours.

The hospital environment

+
-

Hospitals can be daunting places for people who aren’t used to them, and it’s worth bearing in mind there may be lots of unknown or unfamiliar sounds, and lots going on around you.

Dependants

+
-

You may have children or other people relying on you, like a parent or grandparent. If so, make sure you can arrange for someone to step in for you while you attend medicals, donate, and recover after donation.

Time off work or study

+
-

You’ll need time off to travel, donate, and attend medicals. If you can arrange this, will you be paid while you’re off – and if you won’t be paid, can you afford to wait to make a loss of earnings claim through Anthony Nolan?

Recovering

+
-

You’ll need time off to travel, donate, and attend medicals. If you can arrange this, will you be paid while you’re off – and if you won’t be paid, can you afford to wait to make a loss of earnings claim through Anthony Nolan?

Deadlines

+
-

You may have exams, work projects, or important deadlines coming up. If this is you, please let your coordinator know. 

If you are very physically fit, it might take you a month or so to return to your pre-donation fitness level – worth considering if you have a race or competition planned in the weeks following your donation.

Talking to us

+
-

Most of the teams at Anthony Nolan work typical office hours, i.e. Monday to Friday, 9am to 5pm. Do you have somewhere private that you’re comfortable speaking to us in during those hours?

Coping with uncertainty and stress

+
-

Donating is an incredible, selfless thing to sign up for, but it’s not easy, and there are likely to be periods of uncertainty and stress for you to manage. Have a think about your coping strategies in stressful situations, and what the best ways for us to help you might be.

Changes to plans

+
-

Be prepared for things to be postponed or cancelled at the last minute. It can be frustrating, but when it comes to donation, it’s not always possible to stick to an agreed schedule – there are just so many variables that come into play.

Cultural considerations

+
-

It’s possible that some religious practices (e.g. fasting) or social conceptions (e.g. a mistrust of medical procedures) may prevent you donating your stem cells, or affect your ability to donate.

Having second thoughts?

+
-

We don’t want to put you off, but we do want to be open and honest about anything and everything you may encounter during your donation journey. So, if after reading all the sections above, you’re having second thoughts about donating your stem cells, that’s fine – you must make the right choice for you.

Your Health

The questions you’ll be asked, and the things we might tell you.

Your medical history

+
-

You’ll be asked a lot of questions on your donation journey! And you’ll need to be prepared to be frank and honest when you answer – it’s very important, for your own, your patient’s safety, and potentially the researcher’s safety too. You’ll be asked about personal topics, such as your physical and mental health, your sexual health, and your travel history. Your answers will stay completely confidential between you, Anthony Nolan, and medical staff.

Things we might tell you

+
-

We might find out during your medical check-up that donating is not for you. Or we might need to refer you back to your GP for more tests. You can’t donate if you’re pregnant, so if this is a possibility for you, you’ll need to take several tests to make sure you’re not pregnant during your donation journey.

Pre - donation

Your donor journey will be highly individual and personal to you. As such, there are things you might not be able to plan for in advance, or that may change at the last minute. But we’ll keep you informed as much as we can, in the way that works best for you. Some things will need a phone call, but for others, we can email or text – please let your coordinator know what you’d prefer.

Things to consider

  • Your coordinator may change – but if they’re out of the office for any reason, you’ll still be supported by one of the team.
  • Your donation could be delayed, postponed, cancelled, or rescheduled – even on the day of donation.
  • If your donation is delayed for more than 30 days you will have to repeat some medical tests.
  • If you have any phobias that may affect your ability to donate (for example, it’s quite common to have a fear of needles), consider how you’ll handle this, and ask for help if you need it. Phobias can be managed, so please let your coordinator know if you have any concerns.
  • You’ll need to be upfront with your employer or place of education about what you’re going through, because your planned dates may change at short notice, and you may need more time off to go to medical appointments. Are you able to be open with them about your donation, and if so, will they be supportive?
  • If you’re donating for very personal reasons (e.g. a friend or family member had a transplant), the process might bring up difficult emotions or memories. Please consider how you’ll manage your emotional wellbeing if this is the case for you.
  • If you’re donating via the Peripheral Blood Stem Cell method (PBSC) you might experience side effects from the G-CSF injections you’ll be given to stimulate your body’s production of stem cells, e.g. bone pain, headaches, nausea and vomiting.

The data on donation

In the year 2021 to 2022: 

  • Over 4,000 people on the Anthony Nolan register were contacted as potential donors. 
  • Of these, 2,673 people provided further blood samples… 
  • And of these, 419 people went on to donate. 

In the same year: 

  • 34% of planned donations were cancelled. 
  • 36% of planned donations were postponed. 

Generally speaking, most cancellations and postponements are patient-led, and can happen for lots of reasons, none of which are your fault. Please consider how this situation might make you feel, though – if it does happen, you’re more likely to take it well if you’re prepared. 

During donation

Donor Kirsty - PBSC

Things to consider:

  • You’ll have to travel from home to your collection centre for the medical, but we’ll try to get a nurse to you for any repeat blood tests if that’s more convenient.  
  • You may not be allowed anyone to stay with you while you donate. 
  • Needles play a part in the donation process, but there will be plenty of opportunities to discuss your mental health history and any personal triggers you may have with a medical professional.  
  • There can be a lot of waiting around during donation – it can help to bring something to read, listen to, or work on in any unexpected down time. 

For Peripheral Blood Stem Cell (PBSC) donation specifically: 

  • You may need to donate over 2 days (e.g. if your patient is much bigger than you are or the requested cell count is high), which may mean an overnight stay if you don’t live locally to the collection centre where you donate. Some donors have reported experiencing feelings of failure or guilt if this happens to them, but honestly, these feelings are completely unwarranted.
  • If you are donating to a patient, you may need to donate via a central line in your neck or groin if the veins in your arms aren’t found to be suitable for donation. This would mean an overnight stay in the hospital or collection centre. At your medical your veins will be assessed to see if this is likely, but it could still happen unexpectedly on the day.
  • Very occasionally (less than once a year) it’s discovered during donation that the G-CSF injections haven’t stimulated enough cell growth, meaning the cell count needed hasn’t been achieved, and Peripheral Blood Stem Cell (PBSC) donation isn’t the best way to collect your stem cells. If this is the case and you are donating to a patient, you’ll be asked if you consent to a bone marrow donation instead, which requires a small procedure under general aesthetic and an overnight stay.
  • During donation, you can read, watch TV, and eat and drink – but you’ll have to do it all while keeping one arm very still!  
  • If you need the toilet once your donation has begun, the nurse will be able to help you with a bedpan, bottle, or commode. 

For Bone Marrow (BM) donation specifically: 

  • You’ll need to stay in hospital for 2 nights, so please have a think about any commitments you might have that someone else will need to do for you. You’ll be able to bring someone with you, but they will have to stay in a hotel room, and not at the hospital with you. 
  • Your operation usually takes place early in the morning and you’ll have a general anaesthetic. After the procedure, you’ll return to the ward to recover and stay for a second night before being discharged the next day. Most donors feel sore and tired – your hospital will let you know what pain relief you can take.  
  • We suggest you take a week off work (depending on how active your job is) and avoid physical activity for two weeks after your donation, so it's important you think about what this means for you and whether you need to plan some extra support at home while you recover.   
  • This procedure is only used when donating for a patient, you will not be asked to donate Bone Marrow for research.

Post-donation

Male stem cell donor

You’ll have just done an incredible thing – so, first things first, thank you! Your selfless act could be a lifesaver for your patient. But remember to look after yourself, too.

Things to consider:

  • Your recovery 
    You might find when you get home after donating that you need a big cry! This is perfectly normal and happens to lots of donors – to potentially save someone’s life is a big deal, and tears are a good release. You may also feel a bit flat, or even anticlimactic – again, this is perfectly normal, and we’re here for you if you want to talk over how you’re feeling.

    For PBSC donations, most donors (72%) take 2 or 3 days to recover. For bone marrow donations, it usually takes between 7 and 10 days to recover, but occasionally it can take longer – some people need between 7 and 30 days. The most common post-donation symptoms are tiredness, mild aches and pains, and some pain or bruising around the donation site.

    We also find that donors who take longer to recover can be emotionally affected too. It might be wise to line up someone before you donate who could do things like get groceries, drive you to the doctor, or offer general support if your recovery takes longer than expected. 
  • Your patient 

    Your cells may be transplanted to a patient anywhere in the world. We’ll try to get an update on how the patient is after their transplant, but in around 1/10 cases, we either can’t get or aren’t allowed this information.  

    Please also consider that you may not be able to write to your recipient, or hear back from them. In fact, it’s more likely than not you’ll never meet the person to whom you’re donating, whether that’s down to country-specific rules around patient/donor contact, or patient choice. As well, your cells may not end up being used after you donate them – if, for example, your patient becomes too ill to receive them. Also bear in mind your patient may sadly die after their transplant, and think about how you might cope if this happens. 
  • Donating towards research

    By donating your cells to research you have the opportunity to impact even more lives. One donation for a research study could unlock new discoveries and help shape the future of treatments.

    Outcomes from research take time to flourish and be impactful, this can take months and sometimes years. If you would like to find out about the outcome of the research study, you're involved in please contact your coordinator at any point who will contact the researcher. We are always keen to find out how our donor's cells have made an impact and would love to be able to update you if we can.

Thank you

Thank you so much for taking the time to read through all this information. We hope you found it helpful, and that we were able to answer any questions you may have had about donating. You might like to bookmark the page so you can return to it easily if you need to at any point in future.

Please take some time to digest and reflect on all you’ve read.

If you have any questions, if you’re feeling unsure, or even if you don’t want to donate anymore, do get in touch with your coordinator. We’re here to support you as you make your decision, whatever it may be.

You'll find their contact details in the emails they've sent you. If you're not sure just message donorprovision@anthonynolan.org or call 020 7424 6699 to speak to someone in the Donor Provision team