Wednesday, 5 October 2016

Stem Cell Donation - A Donor's Story (Part 1)

A wonderful lady recently got in touch with LLNI to share her story on becoming a stem cell donor and we thought it would be a wonderful resource for patients and the public who want to know more about what is involved.  

A stem cell transplant is a form of treatment for many blood cancers and diseases. It is essentially a method of giving the patient lots of new healthy cells to replace the diseased or damaged ones.  A transplant is considered after other methods of treatment have been exhausted.

This is where Jennifer’s story begins….

Approximately two years ago I received a phone call one Sunday afternoon from one of my nephews in South Africa.  He started off by telling me not to worry too much which is always a bad sign. I knew it would be bad news but I had no idea how bad, his mum, my sister, had just been diagnosed with leukaemia.  

The word leukaemia was enough to frighten the living daylights out of me, I knew that she had not been well but I assumed it was a virus which would soon pass.  G, my nephew, sounded reasonably positive and was hopeful that with a few courses of chemo all would be well again.  G suggested that I contact his brother, M, who is a Dr to get more information.

I contacted M and he told me that with the on-going viral infection that my sister had, the prognosis was not great, her age was against her but they were hopeful that the chemo would manage the leukaemia. My sister J is some 13 years older than I am.

I started reading all I could about leukaemia, various treatments, survival rates, effects of chemo on the body to try and understand the illness more and what I could do to help her. I discovered that a possibility was a bone marrow/stem cell transplant which I read up about on the Anthony Nolan website but at that point it was not an option that was being discussed.

Over the period of two years,  J underwent numerous rounds of chemo, each causing her nausea and various other side effects.  I travelled out to South Africa in Sept/Oct of 2015 to spend some time with her, when she met me at the airport I was shocked at how much weight she had lost from the various treatments. We had a great three weeks together and although she was noticeably slower in general, her spirits were good and we spent a lot of time laughing and talking together.

In early 2016 the Doctor confirmed that the leukaemia was not responding the chemo as hoped and my sisters hopes for survival relied upon a successful stem cell transplant.

There was a chance that someone in our immediate family would be a match as there are 7 of us, but still no guarantee. Even with a large family we statistically only had a 25% chance of being able to help.

The Anthony Nolan Trust was then contacted by the South African Bone Marrow Registry who asked them to approach those of the family living in the UK to see if we were willing to be tested.  My two brothers were tested first as there is a stronger chance of a male being a familial match, unfortunately not for us. The test procedure was very easy, a simple salvia sample and they can tell you within 10 days if you are an appropriate candidate for donation

Eventually the results came back with the news that I was a possible donor but they needed to conduct more tests. I was scared, apprehensive and excited at the same time.  Thankfully the further tests were conducted within 24 hours and it was confirmed that I was a match.

Was I ever excited?  I called my sister and her husband to tell them the news with tears of joy for sure – I was just so happy that someone in the family was a match.  It did not matter that it was me who was the match, just that someone was.

I did some further reading to find out what the process was that I had to go through to donate the bone marrow/stem cells and even phoned the transplant co-ordinator at my local hospital and talked to her about it all.  She was wonderful, very reassuring and answered any questions that I had.  She told me that yes there could be side effects to myself and to prepare for that and that any other concerns that I had, I could phone and ask her. There were two ways of harvesting what was needed.  One was that I was put under general anaesthetic and holes were drilled into my hip bones from which the bone marrow could be extracted.  The other was a dialysis type procedure whereby a line was put into either a vein in my arm or groin, blood collected and the stem cells spun out before the blood was returned to me.  At that point I had no idea which procedure I would be undergoing – both were as scary as hell but at the end of the day, which ever it was I would do it regardless.

The next step was to set a date to harvest my bone marrow/stem cells. We originally thought that it would be May/June but it had to be postponed as my sisters health was deteriorating. The chemo was having no effect at all now and we were running out of time. The only remaining options were to try one more blast of chemo or resort to palliative care.  The decision was made for one more shot at chemo – what did she have to lose? It would be her last chance.  The chemo was to be a really strong dose and hopefully it would do what we wanted and needed it to do.  I really did not want to lose my sister yet, I was not ready for that.

The chemo worked and things were put in motion for me to do my part. In order to save time I underwent some health screening prior to my trip – they tested me for everything;  liver function, kidney function, AIDS, Hepatitis, blood sugar, cholesterol, haemoglobin and a few other ones that I did not really understand. The results were emailed to my sisters doctor in South Africa and we were ready to go.

The date was set for the transplant as July 27th.  I would go into hospital on July 25th to do my part.

I arrived in Cape Town on July 18th and visited the doctor with my sister the following day. We spoke about the process that was ahead of us and the effects it would have on both of us, physically, emotionally psychologically.  How did I feel about giving part of myself to another person? Strangely that did not concern me at all; I was doing something that hopefully would save my sisters life.

At this point I was quite anxious and nervous about what was ahead but I knew there was no need in getting worked up, it was something that needed done and I was going to do it. The team at the hospital explained the details of the procedure – it would be the dialysis method with a line into my groin, they took me to the ward and showed me the machine and explained how it works so I would be comfortable on the day. The machine is a little like a tumble dryer, the heavier part of my blood would sink to the bottom of the separator and the stem cells harvested off and collected for the transplant.  It will take 6-7 hours start to finish.

I had to have the first of 4 injections over 4 days in order to boost my production of stem cells; the doctor gave me the first and the other 3 I would give myself.

In the few days leading to the transplant I was trying hard to remain cheerful and upbeat but I was feeling very scared about the days ahead.

25th July – Harvest day had arrived. I woke up at 4am for the last of the injections. There was no chance of going back to sleep so I got myself ready in some loose clothing and headed to the hospital. The doctor arrived and after a shot of local anaesthetic in the groin area the line was inserted along with 2 stitches to hold it in place and I didn’t feel a thing.  The line went into the harvesting machine and there was another line back out again to return the blood to me along with an anti-clotting agent.  The harvest started at 7.40am.  I found the whole procedure interesting and wanted to know all the time what was going on.  The machine drew blood for about 30 minutes, and then stopped.   It went all quiet before the stem cells were spun out and went up into another bag and my blood was pumped back into me.  What was fascinating was the colour of the stem cells – they were orange.  I had expected them to be pink/red but no the nurse said that the orange colour was good.

After the first collection I had a tingling sensation in my mouth, this is common and it’s caused by the depletion of calcium in the blood. A syringe was attached to my line and after every collection the nurse would give me a shot of calcium.  It had the strangest effect, I could feel ‘hot spots’ on the soles of my feet, the palms of my hands, in my mouth  and in the groin area but it only lasted a few seconds, very odd.

The time went in quite quickly with talking to family, the nurses and some light reading. Other than the calcium issue, I was feeling bright and breezy and taking my cue from the nurses I was quietly confident that all would be ok.

After almost 7 hours the harvest was complete, the stem cells were collected and taken to be tested to ensure they were of a high enough quality to use and that there were enough. The line in my groin was left in should they need to do a second harvest but everyone was quite confident that that would not be necessary. At this point I needed to use the bathroom, the nurse swung my legs onto the ground slowly and helped me to stand up, some patients can feel faint or dizzy after lying down for so long but I felt fine.

The results came back after 40 minutes, quality and quantity were good and they could go ahead with the transplant. This was a great relief and I couldn’t wait to tell me sister. First of all the catheter had to come out and I had to go back to bed for about 2 hours to let it all settle down but as you can imagine I was getting quite impatient to share the news. It was great to see my sister looking happy and hopeful, I know she had been nervous and worried about me and the procedure. Before I said goodnight to her we shared a few tears, she thanked me for the wonderful gift of a second chance at life I was giving her.  I told her it was given with all the love in the world.  She had been like a Mum to me when I was growing up – always there.

The transplant would take place 2 days after the harvest so I had a day to recover. I did not need to recover physically but emotionally I was drained, I had done what I came to do and now I could just hope and pray that it would work. I am not much of a praying person to be honest but that night I just hoped that whoever is up there was listening.  The opportunity to give someone the gift of a second shot at life is immense, not something that you think you will ever do.  People keep telling me that what I am doing is amazing but right now I don’t see it like that.  I am helping my sister who is ill.  Maybe in time I will see it differently but not right now. My sister and I spoke of this journey we are undertaking together, I feel that this is my way of repaying all that she did for us when we were kids – a small price really

One of my nephews arrived this evening for transplant day tomorrow, it was so good to see him and I am so glad that he is here too to support his Mum tomorrow.

Jennifers story will continue with details of the transplant next month - stay tuned.