Stem Cell (Bone Marrow) Donation
Connected to machine

This is my experience of donating stem cells (bone marrow) in the hope that this may help someone else decide to sign up.
Almost without exception, everyone I mentioned this to knew only of the pain of bone marrow harvesting; taking the marrow directly from the hip with a needle. The preferred option now is for apheresis or Peripheral Blood Stemcell Collection (PBSC).
More detail can be found elsewhere on the web, but the gist of it is that blood is taken from one arm, the stem cells and some plasma are seperated out and the remaining blood is returned to the other arm. The procedure takes around 5 hours and is done while sitting in a chair reading a newspaper or watching TV.
In preparation for the apheresis procedure, the donor must be injected with a drug called G-CSF. This is a sub-cutaneous injection (into the flesh) into the back of the arm or stomach. This, over the four days prior to donation, stimulates the body to over-produce stem cells and to release them into the blood. The side effects are generally described as feeling flu-like, although I felt only aching in my bones.

After being identified as a match, I trawled the internet to find out all I could about apheresis. I found technical descriptions in a number of places, but I could not find any mention of the personal side, of the experiences or feelings around it all. I hope the following will allay fears and may even persuade someone else to become a donor.

September 08

Identified as a potential match, I had to provide a blood sample to ensure a complete match. The nurse at my local doctors' surgery took the blood using a kit from the BBMR.

10th November 08

Having been identified as a satisfactory match and before finally consenting to the donation procedure, I had to attend a counselling session and a medical at the BBMR in Bristol. During an hour or so with the doctor, I was given an explanation of how the blood worked (most of which I have since forgotten), how stem cell donation works (harvesting and apheresis) and what the possible side-effects may be. Bone pain is a given but this can be eased with paracetamol.
Following the counselling, I was sent for a comprehensive medical at the local BUPA Spire hospital.
The donation was scheduled for around the end of November, but, unfortunately, the recipient was not well enough to undergo the transplant. This now had to wait until April 09.
Up to this point, the excitement of all this new stuff largely distratced me from worrying about it all, but during this enforced hiatus, I was constantly thinking about the recipient, wondering whether it was all in vain.

27th March 09

I received the letter from the BBMR confirming that it was all on again. This is the point at which all the feelings kicked in. Going through with this and getting it all right became incredibly important to me.
At this point, Healthcare At Home made contact with me. This is an organisation used by the BBMR to administer the first three (of four) G-CSF injections.

30th March 09

The various booking were made and confirmed by the BBMR: 3 nights in the Avon Gorge Hotel and a taxi from the hotel to the apheresis unit on the day of donation. I was due to turn up on the Monday for the final G-CSF injection and a blood test. This would be the first of the three nights in the hotel. The second night would be immediately after the donation and the third night was booked partly for recuperation and partly in case a second donation was needed.

3rd April 09

The day of the first G-CSF injection. The nurse arrived at 10:00. She gave me one injection in each arm, then stayed for an hour and a half to make sure I wasn't suffering any untoward effects. The injections gave a mild stinging sensation as the drug was pushed in. The drugs effectiveness made itself felt by lunchtime with a dull ache in my lower back. It's an odd feeling. All the descriptions I had been given told me of flu-like symptoms, so I was ready for aching with a lack of energy and concentration. What I felt was only bone pain. Apart from this, I felt fine. I took a couple of paracetamol in case the pain were to escalate. Most of my bones were aching by bedtime, but not with any great intensity. I took a couple more paracetamol and went to bed. I slept well, but woke in the early hours feeling very warm and agitated, but soon settled.

4th April 09

The second injection was at 09:00. I felt a general, mild ache all day. Paracetamol again at 14:00 and before bed. I awoke warm and agitated again.

5th April 09

The third and final injection at home, at 10:30. I awoke with a mild ache all over. I was buzzing with energy all day and even cleaned the car energetically in the early evening.
I know I was probably lucky in suffering mild side-effects, but I can't help feeling more people would sign up for this if they knew this was the alternative to the oft-feared bone marrow harvesting. The more people I spoke to during these few days, the more I felt a sense of injustice that folk were afraid of donating stem cells because of the fear of the popular image of it.

6th April 09

We set off early for Bristol. The ache had become more pronounced, but even now I wasn't eating the paracetamol. After sitting for a while in the car, the pain of standing up took my breath away briefly. The fourth and final G-CSF was at 16:00, and the subsequent blood test showed all was OK for the donation tomorrow. During the afternoon, I started taking the paracetamol every four hours.

7th April 09

Donation day. The taxi picked us up from the hotel at 08:15. I was at the apheresis unit, plumbed into the machine by 09:00. This involves a rigid needle into the crook of one elbow. This arm can't then be moved, so don't choose the one you write with. The blood is taken from here and returned to a flexible canula into the other forearm. The entire pipework, including the bit in the centrifuge, is manufactured as one comlpete, sterile, single-use unit, so the risk of infection is minimal.
The procedure started at 09:15. My left arm (the rigid needle) needed wrapping in warming pads to get sufficient blood flow. At 09:45, half-an-hour in, my lips started tingling. This is a sign of low calcium. The anti-coagulant added by the machine to prevent clots forming in the pipework binds to calcium in the blood. Calcium is necessary for nerve function, hence the tingling sensation. I was given a syringe driver of calcium gluconate and a couple of Calcichew tablets. By 10:40, I was still tingling so the anti-coagulant was reduced a little. I needed two more syringes of calcuim gluconate during the procedure. The procedure was comfortable enough, but I found not being able to stretch my legs difficult.
The process was finished at 14:20. During the following 25 minutes, the blood in the machine was returned to me, the pipework was disconnected and my blood pressure and temperature were taken. A blood sample was taken for a full blood count. I stood up gently, just in case. I felt no light-headedness, but I felt very heavy on my feet, and desperate for the toilet.
We hung around for the results of the blood test and stem cell count results. These showed that I didn't need a second donation, so I was free to go back to the hotel. I felt OK, but very tired and a bit emotional. The aching bones of the last few days was largely gone and I slept soundly.
I left a Good Luck card for the recipient, but it did feel odd writing a card to an anonymous person whilst maintaining my anonymity. I don't even know his or her first language.

8th April 09

I woke feeling well rested and in no pain. I was ready for a full day walking around Bristol.

9th April 09

Driving home today. I felt very well, almost as if I hadn't been through the donation. The doctor called me later in the afternoon to check that all was well.

21st April 09

The BBMR called to check on me again. This is the 14-day check. I have no symptoms to report. A blood tube is to be posted for the 30-day blood test.

30th April 09

The 30-day blood test, at about 25 days as we were off on holiday. Just one vial this time.

15th May 09

The BBMR called to check on me again, and to confirm that the blood test results showed that everything was back to normal. I felt OK, but it was good to have it confirmed. I've also received a 'Thank You' card from the recipient saying that all is well so far. That raised a tear, making everything seem personal. It does feel good, knowing that I was able to help someone in this way. It all helps the world go round.

21st April 10

Another call from the BBMR; this time for the one-year follow-up. I have had no problems whatsoever, and have even gone back to giving blood last month.

23rd April 10

I rang the BBMR to enquire about the recipient a few days ago. Today, I received the following letter:
"I am sorry to tell you that the patient who received your stem cells sadly passed away recently. As you know, and despite all our best efforts, only about 60% or so of patients may be cured by their transplants. Sadly, a significant number do die as a result of complications or a relapse of their original disease. I hope it will be of some comfort to you to know that your donation gave this patient the chance of a cure." Despite not knowing anything about the recipient, I somehow felt a close bond. This letter left me feeling like I'd lost a relative. I can only imagine the recipient's feeling on hearing that a donor had been found, and the hope that must have given.

Everyone I have seen since this donation has said how brave I have been. I don't think bravery comes into it. Even with considerably more discomfort than I felt, I would do it again. It's far less than the recipient has gone through, and if it helps, it was worth it. I would hope that someone would do the same for me one day.

British Bone Marrow Registry
The Anthony Nolan Trust

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