I received my donor family letter. I sent off my letter back in March just wanting to say thank-you and all that stuff never ever actually expecting to hear back. Then last week I get a phone-call off of Papworth telling me that they've received a letter for me which I just have not been expecting or anticipating, so it came as a bit of a surprise.
It's absolutely amazing that they would even bother to reply and I'm beyond thrilled that they have but it's just a bit bitter sweet. When I sent my letter everything was amazing I was doing amazing I was planning my holiday to Portugal, I was doing SO much and in a way I'm happy I sent my letter when I did because at least they got to know how amazing their family member made my life. I just feel so bad now because they've sent me this amazing and wonderful letter kind of under false pretences, they think I'm doing amazing and now my body has decided to be a bit rubbish and now my lungs are failing and in the letter my donors husband says how he would love to hear from me again. There is no way on this earth I can reply to this letter, not now, what would I say? "Oh hey, yeah sorry to inform you but my body is just so rubbish it's decided it no longer wants to accommodate your wife's lungs." No I can't do that but then I'll feel horrible if I end up getting my 2nd transplant and I have to send a letter that says "well I no longer have your wife's lungs but it's okay because I've still got her heart." I imagine the idea of his wife's lungs just being discarded doesn't seem like a particularly nice prospect.
I just feel horrible because I just wish my body could do as it's told or do what it's supposed to do. Why couldn't it just be normal and reach the 5 years it was supposed to reach? I completely understand that this situation isn't actually my fault and there's nothing me or doctors could do to stop this but I still feel responsible for it, it is my body at the end of the day and I was given someone else's organs and the best I have been able to do is ONE measly year I might be able to push it to 18 months possibly. I just feel like 5 years would have been enough time to be able to do them justice at least, you know? I know that I have had the most amazing year ever and I wouldn't trade that in for the world but I don't want to feel like I have failed this family and what they gave me.
It was an amazing letter though. I didn't expect anything but I did think if I ever did get a letter it would maybe just be a kind of like "You're welcome" kind of deal. She sounds like she was a lovely woman. I won't divulge all the details as I don't feel like it's my place too but I know her name, what kind of family she had, the job she did, things she enjoyed and a few little snippets of what she was like and that's really lovely for me to know. I hope I can get some more time out of these lungs for her but I guess if i do end up having a double lung transplant I will always still have her heart so at least I'll still be carrying that part of her on.