Unfortunately after the transplant Ashling developed an EBV driven lymphoma which meant that she needed further treatment. This is a rare side effect of a transplant that can occur whilst on high levels of immunosuppression and if EBV is reactivated.
In this blog, she talks to Billie in patient services about meeting her German donor, Jan, for the first time.
Can you tell me about when you first decided to make contact with your donor?
I first decided I wanted to make contact with him the day I found out that I had a donor!
My medical team actually really struggled to find me a match as I have an unusual tissue type due to mixed heritage in my family, generations back. When they first told me I needed a transplant they checked my brother, who sadly wasn’t a match, but they said ‘it’s fine, you’re white and European, so we’ll be able to find a match easily for you.’ Then they ate their words!
Once my tissue type was analysed, it was more complex than they’d first thought. So the search went worldwide and they couldn’t find a 10/10 match and I started to worry.
One day, I was allowed out of hospital for a short while and I was having lunch with my mum by the canal when I got the call to tell me they’d found a good match in Germany. That is definitely up there as one of the best 3 days of my life! I found out that he was German and 26, and I decided then and there that if I made it through transplant and he was willing, I’d love to get to know him.
What was it like having direct contact with him for the first time?
I didn’t know what to say. It was around Christmas that I got a message from you guys with his email saying he wanted to be in direct contact. I burst into tears! My mum and I looked up his name on facebook to see if we could find out who he was, and two people came up. So I knew which one was him.
Having a face to go with the name of the person who is the reason I’m alive…there are no words to describe how that felt. I said thank you to him for giving me a chance at life, but said that thank you doesn’t seem enough. You say thank you five or six times a day to everybody for everything, but saving someone’s life is bigger! I was very conscious of not scaring him off by gushing at him in gratitude!
It definitely sounds like you always wanted to contact him. Did the complications in your recovery, such as having a second cancer, affect how you felt about meeting him?
That’s an interesting question. It hasn’t affected my wanting to meet him at all, but it was certainly different to how I thought it would be in my mind. Back in 2012, I thought if I ever meet this guy, it’s going to be the happiest experience ever. I had big expectations.
But I felt sad going to Germany, as well as feeling incredibly grateful. I have been feeling very down recently, I’m fortunate not to have suffered with depression in the past, but all through October I felt kind of dull and grey. So I was in a different mood than I expected I would be in the lead up to meeting Jan.
How did you feel in the lead up to meeting him face-to-face?
Apprehensive! Which was weird as we’ve been in contact since 2014, although Jan doesn’t speak much English and I’m rubbish at German.
My boyfriend Rob and I arrived in Cologne, and then we made our way down to Dörth to meet Jan and his family. It was his sister’s 30th birthday party and that’s what they invited me to. He had texted me a couple of times enroute asking when I was arriving, and he told me he’d be waiting in the kitchen for me when I got there.
And what was it like when you met him?
As we drove to his sister’s house, I started to feel a bit sick, just out of nerves. And when we got to the door, he opened it! Which kind of shocked me as he said he’d be in the kitchen! We had the biggest hug, it lasted about three minutes. Then he cried on me, which set me off too.
It was very special. I said thank you and he said something German which I didn’t understand. But I think it was “you’re welcome”. He was a great hugger. Although it was funny, as he is like 6’2 and I’m a total shorty so he had to bend right over!
I then hugged his brother and his mum (who was also crying), who told me I was so welcome and that they were happy to have me there, and his sister – the whole family were so welcoming, his kids too! It was lovely.
What was Jan like, was there someone there who spoke English who could translate?
Yeah there was. Like I said, it was his sister’s birthday party, so I decided to really chat to Jan the day after when we could talk properly.
He is very gentle and kind. He has such a smiley happy face. Who he is really shines through his face. I asked him why he wanted to donate and he said that he was told there was a lady called Ashling who needed help to save her life, and he said he wanted to give someone like me the chance of a future.
Did he talk about why he signed up to the register in the first place?
He mentioned that someone came to speak in his school when he was younger, and that he had discovered he had a rare blood type. This made him want to help others, donate blood and join the register.
I think I know the answer to this question, but are you glad you’ve met the man who saved your life?
Nah, I wish I hadn’t bothered! (Laughing)
Absolutely. There’s no way to do justice to how good it felt. It’s given me a bit of a reboot. It really was the trip of a lifetime, and we are going back to stay with his mum next year and we’ve invited them to visit too.