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Documenting not dying since October 2013.

Hollyoaks' current transplant storyline: why I am angry.

Hollyoaks have made numerous mistakes in this plotline, and after reading a new spoiler this morning, it's ridiculous and I need to say something. I understand that they have artistic license etc but they seem to make a real effort to stick to the truth when it comes to emotional storylines e.g. the rape of John-Paul, but medically they do not seem to care. This infuriates me. As a recipient of three stem cell transplants, I know what is supposed to happen and how it works.

At the beginning of the storyline, it was fine - Hilton had an immune-system disorder of some description and needed a transplant. They have referred to stem cell and bone marrow transplants, which are very different things. Also, both "operation" and "procedure" have been used to describe what's happened. Again, very different things. Now, apparently Hilton is going to start rejecting the transplant and needing another "operation". This is not how it works.

First of all, they ought to have decided whether he was going to have a stem cell transplant or a bone marrow transplant. Stem cells are used much more commonly in this country, as they're much easier to harvest - the donor sits in a chair for several hours having their blood separated out and given back while the stem cells are kept to be used for the transplant - stem cells are a blood product. Bone marrow is sucked out of (usually) a bone in the pelvic/lower back area with a large needle after the donor is given some local anaesthetic. I have had this procedure many times and it is not a big deal. It aches, you take some codeine. Bone marrow is usually only used for a transplant if the donor is under 16 (children's bodies aren't very good at coping with the harvesting of cells) or has some other health condition that makes it necessary. When a recipient receives the stem cells during the "transplant", there is no operation, it is exactly like a blood transfusion, but done very slowly. No anaesthetic, no cutting, it is a bag of cells.

So it seemed that Hilton was going to have stem cells. Fine. On the show, he had the cells, then later that day they were overjoyed because the cells had taken and it was all fine, hooray. Except it takes much longer than a few hours for doctors to know - they can't tell until at least four days later that they're engrafting.

And now he's going to start rejecting the cells! Except that isn't how it works. There is a thing called Graft vs. Host Disease, which is when the donor cells recognise the recipient's cells as foreign and they attack, and it can happen in any system in the body. I have had it in my skin, eyes, gut, lungs, mouth and liver. It was so bad in my liver that is actually caused it to fail, and I had a liver transplant, which inadvertently caused my third (accidental) stem cell transplant. So the rejection is actually from the donor, not the recipient. The treatment for this is not another transplant. The treatment for GvHD is steroids, lots and lots of steroids. If the steroids don't work, then photopheresis is the next step, which is a blood treatment that I have that's far too complicated to go into right now. GvHD can happen within 100 days of transplant (acute) or after 100 (chronic). You cannot just give someone another stem cell transplant - no human body could hold up to it. The conditioning chemotherapy needed beforehand is hardcore, and you can't inflict that upon someone again so quickly - it's almost certainly going to kill them.

Another issue is that they were only searching within Hilton's family for a donor. Again, not the case! There are registers (Anthony Nolan, Delete Blood Cancer etc) which you can join (you just send them some of your spit and if your tissue type matches with someone, you get to save a life! Cool!) and thousands of people have transplants from unrelated donors. My first donor was my sister, but she was too good so I got no GvHD (they like you to get a little bit as it kills off any lurking leukaemia cells) and my cancer came back. My second donor was a chap from Germany, and I got loads of GvHD, eventually causing my liver to fail and making my liver transplant necessary. Because my body had had chemo so recently and the cells hadn't really engrafted totally yet (it was just a few months), the stem cells from the liver travelled to my bone marrow, kicked out the German and my DNA became that of the liver donor. Now I have GvHD in my mouth and lungs. But that is immaterial.

The reason this has made me so mad is that now my liver isn't functioning properly and the only way to fix me is to have another liver transplant, but I can't go on the list because my lungs would not hold up for the operation and I'd never come off the ventilator. This would not be happening if my German donor had been better matched to me (he matched on all the criteria bar one which now seems quite critical) and one of the things I want to do with my remaining time is get as many people to register to be donors as possible. The HO target audience is exactly the group of people who make perfect donors - young, healthy people. Registering is easy, and all this misinformation is incredibly dangerous - instead of giving people the truth, they are messing about and not helping the cause at all. They are peddling fear.

I think that's everything I wanted to say. Am I overreacting? I want to know how other people feel about this. I just don't think it's acceptable to make stuff up about real, serious medical issues.

The 9th & 10th; A day of victories!

The 7th & 8th; Ugh I am just pretty much over life right now.