How to save a life, my experiences of stem cell donation

Since the age of 18 I have carried an organ donor card. About three years ago, I came across information about stem cell donation and I knew straight away that I wanted to sign up for the chance also to be a living donor. I completed the online registration procedure and sent in a follow-up mouth swab to the Swiss blood stem cell registry. And then I carried the dormant knowledge that I was a potential donor around with me, half forgotten, just like the organ donor card in my wallet.

Not more than six months after having registered as a stem cell donor, I received a phone call from the regional blood donation centre in Lucerne informing me that I had been identified as a possible match for a stem cell donation and asking me if I would be prepared to come in for further testing. The procedure, at every step of the way, allows the potential donor time to assess if they feel willing and able to make the donation, but in reality I had already made that commitment the minute I had sent in the mouth swab to complete my registration. A couple of weeks later, after having undergone some simple blood tests at the regional office where I was also briefed in detail about what the procedure (donation via apheresis) involved, the news came through that of the 4-5 potential donors who had been tested, I was the Chosen One.

As soon as I heard that I was the best match for the donation, my biggest concern was having an accident or falling ill with some sickness that would prevent me from being able to make the donation. It was similar to being pregnant again – I was, with just my own body, responsible for another person’s life, and I needed to consider the effects of my actions on that life as well as my own. Meanwhile, the procedure had been administratively passed on to the national stem cell donation centre at Unispital in Zürich, where I underwent a morning of extensive testing in order to ensure firstly that my own health would not be put at risk by the donation, and secondly that I was not carrying any hidden diseases or infections that I could pass on to the recipient. A comprehensive medical test when you are healthy can be quite fun – but being in hospital for half a morning made me acutely aware that there were many other people who were undergoing similar testing for much less pleasant reasons.

Although I was declared in top health, the nurses cast some aspersions on the suitability of my arm veins for the apheresis procedure, and after taking into account my history as a “slow bleeder” in normal blood donations, I agreed to make the donation by means of a Shaldon catheter inserted just below my collar bone. Since this would require a minor (15 minute) surgical procedure, I would need to enter hospital the night before the donation.

I also received a stash of hypodermic needles and some vials of a mobilising factor with which I would need to inject myself daily (in the upper leg) in order to facilitate the release of the stem cells, which normally hang out in the pelvic bones and skull, into my blood stream. I did have to overcome a slight mental hurdle about injecting myself; but in the end, the idea of sticking a needle into myself turned out to be only slightly less disturbing than the ease with which I became used to doing it! The side effects from the mobilising factor were as predicted – a feeling of having the flu, a slight fever, headache and backache, all of which were easily controlled with Paracetomol.

On a Sunday afternoon in mid-December I checked into the Unispital in Zürich, where I was sharing a room on the oncology ward. Anyone who has ever had to spend time, either as a patient or a visitor on the oncology ward will understand me when I say that the mood resembles a combat zone without the soundtrack. There are people all over that ward literally fighting for their lives. But far from an atmosphere of fear, there is a sense of intense dignity and bravery – no one is giving up in this fight! In a way, I felt like an imposter being there; I was worried that I might be mistaken for one these brave soldiers when I was really just a messenger delivering a package.

During the night and a gap in the surgeon’s schedule I was fetched to the operating theatre for the insertion of the catheter. The procedure was painless –and the discomfort once the local anaesthetic wore off was again easily dealt with with Dafalgan. The next morning I was taken to the haematology department and hooked up to the apheresis machine. The great advantage of donating via a catheter is that I was still able to use my arms, although having to stay semi-reclined in the bed meant I was limited to reading magazines for next 6 hours of the procedure. I also had my very first experience with a bedpan, ever. I’m not really sure how that works when you can’t use your arms…..

In the end, I needed to stay two nights in hospital in order to make an additional donation on the second day. At every moment of the procedure the nurses treated me with a level of gratitude and appreciation that I felt was somehow unwarranted. I felt privileged to be able to do what I was doing, grateful to be in a state of health that allowed me to do it, and utterly humbled at the thought of how my recipient would have already had to cope with weeks or months of being unwell, of receiving treatment, and with the fear and uncertainty surrounding finding a donor for that last chance of a cure. Swiss law requires absolute anonymity between donor and recipient but I did wonder what he or she was going through somewhere in the world, preparing his/her body to receive the stem cells that I took so much for granted, but that would be precious cargo for him/her.

The day after the donation I took it easy. The following day I went for a 10km run. The small wound from the catheter caused mild discomfort for a few days but healed up soon, and I went back to my ordinary life. I thought every now and then about my recipient, and I wondered if my cells had done their job. I hoped that they had, and that he or she had also gone back to an ordinary life.

At the end of last year, two years after I had made the original donation - and an hour before I was due to leave for the airport for a holiday in South Africa - I received a call from the regional blood donation office in Lucerne asking me if I would be willing to make another donation, this time of lymphocytes. Lymphocytes are the disease-fighting white cells in our blood. Although none of the medical professionals made it explicit, the donation was almost certainly for the same patient – in which case the need for lymphocytes most likely indicated that the recipient of my stem cells had either developed host-versus-graft disease (rejection of the transplanted cells) or that he/she had experienced a relapse of the original disease. I could only imagine how my recipient had felt on receiving that news; I sent the doctor an email from Zürich airport confirming in writing the positive answer I had already given him on the phone.

Lymphocytes are also collected via apheresis, but because the procedure is quicker (usually not more than 4 hours) and doesn’t require the mobilising factor, it is less intense. This time I was also able to make the donation using the veins in my arms (and to hold nature’s call for four hours, so I still don’t know how that works with the bedpan when you can’t use your arms!). As I left the haematology department in the early afternoon, to carry on once again with my ordinary life, I passed the courier coming in to collect my lymphocytes with his bag proclaiming “Human Tissue” on the sides. Go well blood cells, I thought, Good Luck. Do your job. Save a life….

Gay Saxby, Cham

Information on Stem Cell Donation in Switzerland

In Switzerland every year over 1000 children and adults are diagnosed with leukaemia or other diseases of the blood. While chemotherapy and radiation can provide a cure for some, for many others the only chance of survival lies in the transplantation of healthy stem cells from a matched donor. Stem cells are undifferentiated cells that develop into the various types of cells that make up our blood. They are present mostly in our bone marrow (particularly in the pelvic bones, ribs and skull), and to a limited degree in our blood. Transplanted stem cells allow the recipient’s bone marrow to regain its primary function of producing healthy blood cells.

About 20-30% of patients requiring a stem cell or bone marrow transplant will find a matching donor within their own family. The remaining 70-80% must rely on anonymous donations from donors registered worldwide with their respective national blood stem cell donation registries. In any one year in Switzerland only about 75% of patients looking for an unrelated donor will find a suitable match out of the 24 600 000 donors registered worldwide. For the remaining 25% there is no hope of a cure.

At the end of 2014, Switzerland had 58’168 registered blood stem cell donors. Of those, 34 made actual donations of stem cells in that year, while 137 patients in Switzerland received a stem cell transplant (of which only 4 came from donors within Switzerland).

Suitable donors MUST fulfil the following criteria:

    Be aged between 18 and 55 (donors may remain on the registry until their 60th birthday)
    Be in very good health
    Have a minimum weight of 50kg
    Have no sign of infection with Hepatitis C, HIV or Syphilis
    Have no diseases of the heart or lung
    Carry no disorders of the blood (clotting disorders etc.)
    Have no history of cancer

The criteria for stem cell donation differ from those for ordinary blood donation, since the blood is more thoroughly screened before a stem cell donation. In particular, exclusionary criteria for ordinary blood donation based on residence in, or visits to specific countries (e.g. people who lived in the UK during the BSE crisis, people who frequently visit sub-Saharan Africa) do not typically exclude one from registration as a stem cell/bone marrow donor. Since national registries are linked by a worldwide network, potential donors only need to be registered on one national registry – but should ensure that their contact details are up to date.

Stem Cell donation is made either by a bone marrow transplant, or by a process called apheresis (about 80% of cases). The preferred method of extraction (bone marrow extraction or apheresis) is usually stated by the recipient’s doctor depending on the type of disease from which the patient is suffering. However, the donor may always state his/her own preference. During apheresis, blood flows out of the body through a vein in the arm and passes through a machine that separates out the stem cells from the other components of the blood. The remaining blood is then returned through a tube into the donor’s other arm. This procedure is completely painless. Since stem cells are usually only present in a limited quantity in the blood, donors undergoing stem cell apheresis have to self-inject a mobilising factor for some days prior to the donation, in order to facilitate the release of stem cells into the blood stream. This can cause flu-like symptoms, which disappear as soon as the donation is completed and the mobilising factor is no longer needed. An apheresis donation usually takes between 4-6 hours and is done on an outpatient basis. In a minority of cases the donor has to stay overnight in hospital to make a second donation the following day.

For more information in English about stem cell donation in Switzerland click here