My Donor

29.10.18

I get butterflies just writing this title for my blog this week! Following on from my last post about mental health and transplant, one of the main things I have struggled with is that a complete stranger gave me the most amazing gift I will ever receive and I will never be able to thank them or meet them.

The most frequent question I have had since my transplant is "do you know anything about your donor". The minute I woke up from my operation I thought of my donor and their family. It didn't even cross my mind when I got my call because it just hadn't dawned on me that I was even in the hospital about to have my transplant! But I remember being on the ward and just sobbing to Ciaran. It wasn't guilt that I felt, it was just sheer sadness. I felt as if someone I knew had passed away. It's very hard to know that someone that was such a wonderful person (because they decided they wanted their organs to be donated after death) has passed away. I knew what an impact on people's lives this person must have had, and I knew how many people must be grieving.

Transplant coordinators

The process of donation is completely anonymous, I don't know what other people's experiences have been so I can only share mine. I never asked about my donor while I was in the hospital and I was never asked if I would like to know anything about them. People such as nurses doing echo scans have asked me about it (I find people are very curious) but no one that's part of the transplant team has ever asked me, I think they are more aware of how difficult it is for recipients. Transplant coordinators are the people who liaise with the hospital where the organ is coming from and organise retrieval and everything that has to come together seamlessly when a transplant retrieval takes place. So these are the people that know the details of your donor.

So, a few times while I've been in clinic I've wanted to ask about my donor but I've been far too scared to ask and have chickened out each time. I have to add that for at least 6 months after my transplant my emotions were up the wall, mainly from the steroids, I would cry all the time about anything but I would also laugh hysterically at times too. I was told that transplant centers recommend you wait for 6 months before you contact your donor family for this reason, but also to allow the family time to heal I suppose.

How do you contact your donor family?

I thought it would be helpful if I explained how it works when you are ready to contact your donor family. Some people find out about their donor straight away but don't send a letter until later on, some people never want to contact their donor family and some people send a letter but never hear back.

So a couple of weeks ago I finally plucked up the courage to ask about my donor, it's not something I want to make public currently out of respect for my donor's families privacy. But I was allowed to know their age, gender and roughly where they were from. 

I actually wrote my letter a few months ago, but I kept it on my laptop until I was ready to send it. I basically wrote about what my life was like before and how amazing it is now, and how thankful I am to them. The way it works is that I wrote a letter and it gets checked by my team to make sure there's no information in it that could identify me, I couldn't put my surname, where I live etc. The hospital then sends it and the hospital, where my donor was, contact the family to let them know that there's a letter there for them if they want to receive it. So I now obviously hope to receive a letter back to hear more about what my donor was like and to hopefully get to know their family more. Without them I probably wouldn't be here by now, which is crazy to think about.

If they send a letter back, my coordinator said they will keep it and if I'm in clinic soon they'll tell me when I'm in that there's a letter there for me and if I'm not in for a while they'll call me up so I can go and get it. I was ready to send my letter because I want my donor family to know how grateful I am and not to think that I haven't thought about them every day for the past 8 months (Can you believe it's 8 months since my surgery!). But I won't lie, I'm terrified to hear from them. It's just a very emotional thing to deal with, I don't ever want to say anything to upset them and desperately want them to like me! But I also need to look after myself. I know that if they wanted to meet me in person that I'm not currently ready for that emotionally. But I would love to hear more about my donor and possibly recieve a photo of them.

I do have an appointment to see the psychologist at the transplant clinic in November and I hope that will maybe help me a bit, allow me to talk about my worries and maybe discover new things that are bothering me that I haven't really thought about! 

Hopefully one day I'll be able to share with you all about the amazing family that saved me and gave me my life back, but until then please send them your prayers to be able to deal with their heartbreak.