Post-donation guidelines

Private GP Appointments

If a donor is unable to access their GP, or their GP is unable to provide a timely appointment, DFU can arrange referral to a private GP practice close to the donor’s home and cover the costs. This does not need to be raised as a SAR to track the cost if it is just a one-off appointment. If a series of appointments is required, for example a course of physio sessions, it should be raised as a SAR.

Emotional and Physical Recovery

The Young Donor Project found a possible link between emotional and physical recovery post-donation. Donors who experience emotional distress post-donation may find it reflected in a slower physical recovery, and vice versa. If a donor is experiencing extreme distress or low mood during any conversation with Anthony Nolan then this will be discussed with the medical officer immediately. If the donor is at risk of immediate harm the Anthony Nolan Safeguarding procedure will be followed.

When speaking to donors for the day 2/3 follow up call, it is standard procedure to ask the donor about their emotional wellbeing. It may be appropriate at this point to bring this possible link between emotional and physical recovery to their attention, to encourage them to be aware of their recovery in a holistic sense and encourage them to reach out for support if needed.

If the donor notes feeling worse than usual emotionally, or notes any distress whether directly related to the donation process or in their own life, it may be appropriate to discuss the following with them:

• What are the things causing stress/distress now?

• Has the donation process itself impacted their emotional wellbeing, or brought up/amplified difficult emotions?

• What support do they have? (e.g. is there anyone in their family or friends, social/religious/work group that they feel comfortable talking to, or any activity that they find relaxing/a good distraction)

• If they don’t have any support in place; what kinds of things do they think may be helpful for them? (e.g. do they find talking helpful, or prefer to find other activities to distract them etc.)

If a donor feels worse emotionally after the donation, DFU will offer a second follow-up phone call a week after donation to check in on their wellbeing. If in this call a donor is still experiencing low mood or distress, then it should be discussed with the DFU Manager and the Medical team. It may be appropriate to offer the option of counselling sessions with Anthony Nolan’s counsellor, or the Medical team may advise the donor to see their GP for further support. This will be decided on a case-by-case basis.

DFU does not provide counselling or psychological support for the donor themselves but, following the training and guidance from regular clinical supervision sessions, offers a safe and non-judgmental space for the donor to talk through how they are feeling. Through these discussions DFU will gather the relevant information from the donor to share with the Medical Team and DFU Manager to determine next steps.

Abdominal Swelling and Pain or Discomfort

Anthony Nolan Recovery Data

No Anthony Nolan recovery data for infection at donation site is currently available. This section will be updated as and when this data is available.

Symptom Overview and Initial Conversation with Donor

The main concerns with pain and discomfort on the upper left side of the abdomen that develops during GCSF injections, or shortly after the donation (within 14 days), are issues relating to the spleen.

Many donors who receive GCSF will develop a slight enlargement of the spleen that settles after donation. However, in some rare cases there may be more serious complications.

If the donor is experiencing moderate to severe pain on the upper left side of the abdomen, and/or if they feel very unwell, weak, or faint; inform the Medical Team immediately and advise the donor to seek immediate medical attention.

If the swelling or discomfort is mild and/or not left sided, please ask:

• When did it start?

• How would they rate the pain/discomfort?

• Have they taken any painkillers? If yes, what painkillers did they take, and did it help?

• Where is the pain located? (e.g. all over the stomach/abdomen, or more in one area?)

• Have they recently had any injuries to their stomach or abdomen through impact/a fall, or have they recently done more strenuous exercise than usual?

• Any nausea, or feeling unusually full/bloated after eating small amounts?

• Any visible swelling across the stomach/abdomen?

• Any bruising, redness, or a rash?

Management of Symptoms

In most cases, enlarged spleen will return to normal within about 14 to 21 days. Flag the issue to the Medical Team in all cases, but if it is only mild swelling or discomfort of the upper abdomen, advise the donor that this should reduce over time. Advise them to avoid any situations where there is risk of impact to the area until it resolves (e.g. contact sports).

If the swelling continues for over 21 days, speak with Medical Team again, and if appropriate, they may refer the donor to their GP or to the Collection Centre for scans.

DFU to follow up with the donor until the swelling and pain or discomfort resolves.

Back Pain (BM only)

Anthony Nolan Recovery Data

January 2020-2022: At day 2/3, 56% of donors note pain at donation site, 27% note stiffness, and 9% note muscular pain.

At day 7, 39% note pain at donation site, 37% note stiffness, and 24% note muscular pain.

At day 30 4% note pain at donation site, 4% note stiffness, and 5% note muscular pain.

Symptom Overview and Initial Conversation with Donor

Pain and discomfort around the donation site, along with stiffness and back ache, is very common for at least the first week post-bone marrow donation and may continue up to a month.

As advised in the Post-Donation Thank You Leaflet (DOC 1429), remind donors to avoid strenuous activities for 7-14 days, and encourage them to make a gradual return to their usual level of activity as they feel able to.

The donor may try the following to help alleviate the pain:

• Short walks may help with stiffness of the muscles and reduce pain

• Painkillers as needed. Donors may receive painkillers from the Collection Centre, but if not, they can take paracetamol or co-codamol (not to be used at the same time as both contain paracetamol), or they can use ibuprofen from 72 hours post-donation provided there are no complications such as bleeding from the donation site or extensive bruising, and the collection centre has not advised against using it (aim to use no longer than 14 days, and avoid this if they have any stomach ulcers or indigestion issues).

• If there is any mild swelling across the lower back, applying a cold compress or ice pack for 10 minutes at a time may help.

Management of Symptoms

If the back pain, stiffness, or discomfort is continuing at 4 weeks post-donation, or if the pain is severe, contact the Medical Team with a summary of the donor’s current symptoms.

Ask the donor:

• Any change, improvement, or worsening, of the back pain in the 4 weeks since donation?

• Location of the pain

• Is the pain constant, only after exercise, only at night etc.?

• Do they take any painkillers currently? If yes, what do they take and how often?

• Does light exercise or stretching help at all (if they have tried that)?

• How severe is the pain?

Send the responses to the Medical Team to discuss further. If required, and if agreed by the Medical Team and DFU manager, the donor may be referred for physiotherapy for 4-8 sessions to support their recovery. DFU will send the referral letter to a local physio once permission has been received from the donor to share their details.

In cases of severe pain, the Medical Team may refer the donor to the specialist, Professor Hart at Joint Recon (https://www.jointrecon.com). DFU will send the referral letter by encrypted email to his secretary, Elizabeth Hart ahartmedsec@ccf.org, requesting a review and MRI if needed.

In both referral cases, a SAR will be raised by DFU. The donor is seen as a private patient and the SAR will be used to track their recovery and incurred costs. DFU will follow up with the donor until they are fully recovered.

Bruising at Donation Site

PBSC

Anthony Nolan Recovery Data

January 2020-2022: 35% of donors reported bruising at day 2/3, 5% at day 7, and 1% by day 30 .

Symptom Overview and Initial Conversation with Donor

Some bruising around the donation site is quite common in PBSC donors, especially if it took multiple attempts to place the needle. As advised in the Post-Donation Thank You Leaflet (DOC 1429), donors may also notice that they bruise more easily for a few days post-donation due to low platelet levels.

Ask the donor to send a photo of the bruised area if they describe the bruising as moderate-severe, if they are concerned about the bruising, or if they also note any of the following symptoms:

• Swelling, redness, or tenderness around the donation site (See also #Infection at Donation Site )
• Difficulty moving the affected arm, or pain when extending the arm
• Change in sensation to the arm/hands (e.g. pins and needles, or numbness)
• Arms or hands are paler than usual
• Dizziness, shortness of breath, or chest pain

Also ask if they take any prescription or over-the-counter medications. This is because some medications may increase the likelihood of bruising, which may be useful for the Medical Team to take into account.

Management of Symptoms

If the donor does not have any of the symptoms noted in the above section, and the bruising is mild; advise rest, elevation of the bruised area where possible, and ask them to get in touch if the bruise continues to spread or if any of the symptoms of concern mentioned above develop.

If the donor does have any of the symptoms noted in the above section, and/or the bruising is more significant, ask them to send a photo of the affected area. Send the photo along with a summary of the symptoms to the Medical Team for advice. They may advise that the donor is seen for a review, and can provide a referral letter to facilitate this. DFU will work with the donor to arrange a review at their GP, at the Collection Centre, or if more urgent action is required, at A&E.

DFU will follow up with the donor to ensure the bruising and any pain resolves.

BM

Anthony Nolan Recovery Data

January 2020-2022: 16% of donors noted bruising at day 2/3, 19% at day 7, and 2% at day 30 .

Symptom Overview and Initial Conversation with Donor Some bone marrow donors notice bruising at the donation site within a couple of days, and some may report bruising later once their dressing is removed and they can see the donation site.

If the donor reports bruising, ask them to send a photo of the affected area. Also check for any of the following symptoms of concern:

• Noticeable swelling or tenderness around donation site (See also #Infection at Donation Site )
• Bleeding on the dressing
• Moderate to severe pain (e.g. affecting their daily activity)
• Pain going down the legs
• Change in sensation to the legs (e.g. pins and needles, numbness etc.)
• Dizziness, shortness of breath, chest pain

Management of Symptoms

Ask the donor to send a photo of the affected area if they are able to take one. Send the photo along with a summary of their symptoms, and the date and Collection Centre at which the donation took place, to the Medical Team who can advise further.

If necessary, they may provide a referral letter for the donor to be reviewed at their GP or at the Collection Centre as appropriate depending on the location of the donor.

DFU is responsible for contacting the Collection Centre to arrange referral if necessary. If there are any immediate or urgent concerns, the Medical Team may advise that the donor is reviewed at A&E.

DFU will follow up with the donor to ensure the bruising and any pain resolves.

Headache (PBSC only)

Anthony Nolan Recovery Data

January 2020-2022: 10% of donors noted “other pain (headache/sore throat) at day 2/3, 3% at day 7, and none at day 30.

Symptom Overview and Initial Conversation with Donor

Almost half of donors experience some form of headaches whilst having the course of GCSF injections prior to donation. However as noted in the statistics above, most headaches will settle shortly after stopping G-CSF, with 10% still experiencing headaches at day 2 post-donation .

If a donor already suffers from migraines, the donation process may also trigger it. Donors can take their usual medications for it, and ibuprofen or other NSAIDs are safe 2-3 days post-donation.

If the headache is very severe and the donor has any problems with vision (and this is not part of their usual migraine symptoms), please ask them to seek urgent medical help and inform the Medical Team. Otherwise, please ask:

• When did the headaches start?
• Where is the pain located (i.e. one side of their head, front or back or head)?
• How would they rate the pain? (mild, moderate, severe, or a scale of 1-10)
• Have they ever had migraines?
• What painkillers have they tried so far, if any?
• Any nausea, vomiting, or high temperature alongside the headaches?

Management of Symptoms

Inform the Medical Team of the donor’s responses to the above questions for further advice. They may advise that the donor is seen by their GP or at the Collection Centre for review, and can provide a referral letter for this. DFU will work with the donor to arrange this referral if needed.

DFU will follow up with the donor until the headaches resolve.

Infection at Donation Site

PBSC

Anthony Nolan Recovery Data

No Anthony Nolan recovery data for infection at donation site is currently available. This section will be updated as and when this data is available.

Symptom Overview and Initial Conversation with Donor

Signs of an infection at the donation site include:

• redness and swelling
• redness that tracks up the arm
• skin that feels warm to touch
• pain at donation site
• fever, and feeling generally unwell.

See also #Bruising at Donation Site

The following symptoms may indicate that there is a possibility of tracking cellulitis, a potentially serious infection in the deeper layers of skin, which would require immediate care. Inform the Medical Team immediately and advise the donor to seek urgent medical care if they are experiencing the following symptoms:

• Feeling generally unwell
• High fever
• Red, inflamed skin which is warm to touch
• Painful line on the skin which usually follows the route of a blood vessel from the donation/injection site.

Management of Symptoms

Ask the donor to send a photo of the affected area, and inform the Medical Team in all cases if there is a concern of infection. The Medical team may refer the donor to their GP or back to the Collection Centre for a review and antibiotics, or to A&E if more urgent care is needed.

If the donor develops an infection at the donation site within 7 days of donation, discuss with the Medical Team about raising this as a SAR and informing the Transplant Centre as this may also affect the recipient. DFU will follow up with the donor until they are recovered.

BM

Anthony Nolan Recovery Data

No Anthony Nolan recovery data for infection at donation site is currently available. This section will be updated as and when this data is available

Symptom Overview and Initial Conversation with Donor

Signs of post-donation infection include:

• Redness and swelling,
• Skin feeling warmer than normal around the donation site
• High temperature
• Feeling generally unwell
• Pain at the donation site.

Management of Symptoms

Ask the donor to send a photo of the affected area, and check for the above symptoms, but do inform the Medical Team in all cases if there is a concern of infection.

If there is concern about a local infection, the Medical Team may refer the donor back to the Collection Centre or to their GP for a review and antibiotics.

If the donor is generally very unwell, advise them to seek immediate medical attention at A&E, and inform the Medical Team who may advise that the Collection Centre should check the BM cultures.

If the donor develops an infection within 7 days of donation discuss with the Medical Team about informing the Transplant Centre as this may also affect the recipient.

DFU will follow up with the donor until they are recovered

Infections (Other), and Viruses

Anthony Nolan Recovery Data

No Anthony Nolan recovery data for infections and viruses is currently available. This section will be updated as and when this data is available

Symptom Overview and Initial Conversation with Donor

Donors may develop infections or catch viruses post-donation that are not directly linked to the donation itself. For example:

• Conjunctivitis
• Tonsilitis
• Sinus infection
• Flu
• Coughs
• Colds.

Symptoms that may indicate a general infection include:

• Fever
• Chills and sweats
• Coughs
• Congestions
• Muscle aches (such as a stiff neck)
• Headaches
• Fatigue

Some of these symptoms are also quite common post-donation symptoms, so it is important to speak with the Medical Team if there is any concern that the donor may have an infection shortly post-donation.

Before speaking with the Medical Team, gather the following information from the donor:

• When did the infection start, or when did they first notice the symptoms?
• What are their current symptoms?
• Have they seen their GP? And if so, what advice or prescription have they been given?
• If antibiotics were given; what kind, and how many days is the course for?
• Have they taken a COVID test?

Management of Symptoms

In all cases of a donor reporting an infection or virus within 7 days of donation, or reporting that they have started medication such as antibiotics; report it to the Medical Team who can advise if any action is needed.

Any cases of infections reported within 1 week of donation must be reported to the Transplant Centre straight away. Any infections reported over 1 week post donation, but within 1 month will be discussed with the Medical Team who will decide if it is necessary to report to the Transplant Centre or not. Certain infection such as Hepatitis or HIV must be flagged to the Medical Team even if reported over 1 month post donation. If in doubt, discuss with the Medical Team.

Muscle Cramps

Anthony Nolan Recovery Data

No Anthony Nolan recovery data for muscle cramps is currently available. This section will be updated as and when this data is available

Symptom Overview and Initial Conversation with Donor

Muscle cramps can be caused by low electrolytes (chemicals and minerals in the body that support normal body function)or changes to levels of electrolytes such as calcium and magnesium . Muscle cramps usually settle within a few days to 1 week post donation.

Leg cramps specifically may also be linked to Restless Leg Syndrome which has been noted in some donors post-donation. See #Restless Legs for more details.

It is important to make sure that the donor does not have any other symptoms associated with low calcium, such as:

• Tingling in arms and legs
• Tingling around the mouth
• Leg cramps getting gradually worse

Management of Symptoms

If the donor is experiencing any of the above symptoms; inform the Medical Team who may refer the donor for blood tests to check their calcium levels, and may advise the donor to start taking supplements straight away whilst waiting for the blood tests. DFU will liaise with the donor and either their GP or a private GP clinic to arrange the appointment if needed.

DFU to follow up with the donor until the cramps have resolved and the donor is fully recovered.

Nausea, Vomiting, and Diarrhoea (PBSC only)

Anthony Nolan Recovery Data

January 2020-2022: 3% of donors noted nausea/vomiting at day 2/3, 2% at day 7, and none at day 30.

Symptom Overview and Initial Conversation with Donor

Nausea, vomiting, and diarrhoea are not as common as other symptoms, but GCSF is known to cause various stomach upsets in some donors . This usually settles shortly after stopping GCSF injections but do contact the Medical Team if there is any concern about the donor’s wellbeing.

Please ask the following questions to gather as much information as possible for the Medical Team:

• What symptoms do they currently have?
• When did the symptoms first start?
• Has it improved at all since stopping the GCSF injections?
• Is the nausea/vomiting/diarrhoea there all the time or does it come and go? If coming and going, is there any pattern (e.g. worse after eating/ worse in the mornings)?
• Are they managing to eat any food/ Are they eating similar amounts as before?
• Are they managing to keep drinking water or other liquids?
• Any weakness, dizziness, or fainting? (See also #Abdominal Swelling and Pain or Discomfort (PBSC) )
• Have they taken any medications for nausea?
• Any stomach pain/cramps? If yes, is the pain more noticeable on the left side? (See also #Abdominal Swelling and Pain or Discomfort (PBSC) )

The Medical Team should be informed in all cases of left sided abdominal pain, or if donor is unable to keep drinking water or feels week, dizzy or faint.

Management of Symptoms

Usually, nausea will settle within 48 hours of stopping GCSF injections. The following things might be helpful and should be encouraged:

• Continuing to drink plenty of water
• Eating small amounts of food frequently, rather than large meals
• Herbal teas like ginger or peppermint tea

If the nausea, vomiting, or diarrhoea is ongoing beyond 2 days post-donation, or if the donor is very unwell; inform the Medical Team who can advise further. There is also a medication available over the counter for nausea called Buccastem M, containing an ingredient which can reduce nausea. The Medical Team can advise the donor about this if they feel it is an appropriate treatment for them. If the symptoms are determined to be related to an infection, then the transplant centre must also be informed. See Infections, other DFU will follow up with the donor until the nausea, vomiting, or diarrhoea is resolved.