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Documenting not dying since October 2013.

The short version for new readers, & why you should donate.

I've gained a lot of new followers/readers in the past couple of weeks and most of you probably don't know my entire story, or are least the correct version of it, and if you did, I hope you'd be even more willing to sign up to all forms of donation, and tell everyone you know to.  It all began way back when, in August 2007, three days after our return from two weeks in Majorca, my case of suspected anaemia was revealed to in fact be leukaemia. Acute Myeloid Leukaemia M7 monosomy-7, which is one of the worst ones you can get. My type of leukaemia demanded a stem cell transplant for any chance of beating it, as with just chemo, it would almost definitely return. First thing: a stem cell transplant is effectively the same as a bone marrow transplant. They do the same thing but are slightly different products - stem cells are extracted from blood, whereas bone marrow is sucked out of a large bone, although this is unusual in the UK unless the donor is a child, as their bodies can't really cope with stem cell harvesting. None of this is an operation! Two sessions on a harvesting machine over two days will be your greatest inconvenience. You can't move one of your arms but that is why you bring someone to feed you and keep you entertained. 

But I digress! I had three courses of chemotherapy, including one pre-transplant course which is the heaviest, most toxic set of drugs they can throw at you to make sure your bone marrow is completely obliterated so the new cells can set up home in a nice clean place with nothing to fight with. I was lucky enough to have my sister as a donor - there's a one in four chance that your sibling could be a match, and with only one and her being a 100% match, I felt very lucky indeed. I had my transplant on the 19th of December 2007, and it went incredibly well and I was home on New Year's Day, fastest transplant ever. 

Transplant #1.

Then for a while I was fine, until I found lumps in my face in April 2008. A maxillo-facial doctor confirmed that it definitely wasn't bone, so I was sent off to the QE to have one of them biopsied. It was determined to be malignant, and my bone marrow was getting full of leukaemia cells again, because some leukaemia had lurked in my bone marrow and regrown when it saw the chance. My only chance of survival was another transplant, and that only gave me 20%, but it was that or nothing. We couldn't use my sister again, so the hunt was on for another donor, and in the meantime, I had another barrage of chemotherapy and radiotherapy. A German chap was found, and I had my second transplant on the 31st of July 2008. I spent about five weeks in afterwards, because I got a lot of Graft vs. Host Disease in my skin and gut, which requires lots of IV steroids until it's under control with just oral. GvHD is when the donor cells recognise the recipient's as foreign and they attack, manifesting anywhere in the body. It's good to get a little bit because you get Graft vs. Leukaemia, in case there's any left behind, which didn't happen with my first transplant.

After my tumour was biopsied.

GvHD in my skin.

I spent a couple of weeks at home, then started feeling a lot of pain in my eyes, and being very photosensitive. The doctors were unsure as to what it was, but after conversing with the Sick Kids Hospital in Canada, they diagnosed GvHD in the eyes. I lived in the dark for a month, my only relief being the few minutes of numbness I would have when the ophthalmologists put local anaesthetic drops in my eyes to examine them. The treatment that eventually worked was eye drops made from my own stem cells, which I had for ten days, and soon I could see again! 

On Halloween 2008, a Friday, I spiked a temperature. When this happens post-transplant, you have to go to A&E, so we did. I thought we'd be in for the weekend with 48 hours of IV antibiotics. On Sunday my eyes turned yellow. I started having awful pain in my abdomen, and being incapable of keeping down any food. My skin was turning yellow, then from yellow to green, and I was diagnosed with GvHD of the gut and liver. In early December, I was told that my bile ducts had shrivelled away to nothing, and I needed a liver transplant. Three weeks later, the 21st of December, with days to live, one was found. Those three weeks were a haze of ketamine and morphine, throwing up NG tubes because I literally couldn't digest anything, and trying to not die. 



After I got my new liver, things were relatively good. I did spend the next six months as an inpatient, waiting for my stomach to heal and learning to walk again, as the past few months in bed had completely depleted my muscle mass. I couldn't even stand. I went home on the 11th of June. A slight complication - when I had the liver transplant, some of the stem cells from it migrated to my bone marrow, kicked out the German and set up home, meaning I effectively had a third, accidental, stem cell transplant. I'm the only person in the world all this has happened to. I got GvHD in my lungs from this transplant, and that's what continues to ruin my life to this day. They are so scarred, only 60% of the oxygen I inhale is absorbed efficiently, then when I exhale, I can't get all of the air out before I need to inhale again, so any activity that increases my breathing and heart rate gets me breathless very quickly. 

Once I was home in Summer 2009, things were mostly okay for a couple of years. I got lots of flus and infections which often resulted in a hospital stay, but never anything life threatening. In March 2010, I started a blood treatment for GvHD, as I couldn't come off steroids without my skin flaring up, and photopheresis was my only shot at getting off them. Essentially, they swoosh my blood around in a machine, take out some of the white cells called the buffy coat, add some Uvadex, a drug based in plants from the Nile, then pass the cells through UV light which damages them, then they give you the cells back and the body heals the damage and GvHD in those cells. Magic!

In 2011, I had biliary stones (same as gallstones but not technically because they throw away your gall bladder when you have a liver transplant) a few times, and it was determined that I needed a new bile duct, because the sphincter at one end wasn't functioning properly, so the bile wasn't draining, just sitting there and slowly forming stones. I had the operation in early 2012, and then we thought everything was fine. Except it wasn't. 

In 2013, I had a lot of infections, and one that started in September was particularly bad. I had stones again, and a superbug called klebsiella, which is resistant to antibiotics. Scans determined that the other end of my bile duct that the surgeons didn't fix in 2012 was now not functioning, and they couldn't get to it to fix it. The klebsiella could only be supressed with over a month of IV antibiotics, three times a day, too toxic to do at home. It will always come back though, and every time it comes back, it'll be harder to get rid of, until we can't anymore and I die. The only solution is another liver transplant, but my lungs won't support me through the operation, but they're not bad enough for me to be allowed a lung transplant. So here we are. 

If my German donor had been a better match, giving me a less fatal degree of GvHD, I wouldn't have needed a liver transplant. If my liver had been of better quality (we know it was deprived of oxygen and the bile ducts were damaged), I would be able to drain bile properly and not be getting superbugs or stones. I was forced to take these donors because the only other option was to die, but that wouldn't be the case if more people were signed up to be stem cell and organ donors. 90% of people say they support it but nowhere near that number are registered. Three people a day are dying, waiting for an organ, and 40% of people needing stem cell transplants are unable to be found matches because that person hasn't signed up. That number goes up to 80% if you're from a BAME background. There are multiple stem cell registers, including Anthony Nolan and Delete Blood Cancer. You only need to sign up to one as they're all merged, but they have different age criteria. If we knew a disease was killing that many people per day, we'd do something about it. All you need to do is sign up. The forms are incredibly simple, and all you need to give is a spit sample to become a stem cell donor. The organ register needs nothing. Once you're registered for stem cells, there's a 1 in 1200 chance you could save someone's life. Isn't that incredible?

If you can't donate for whatever reason, try giving blood or platelets. I can't tell you how many transfusions I had during my time in hospital, and more blood products are always desperately needed. 1 in 2 of us will get cancer, but by signing up, maybe you can stop it being a death sentence. Stop someone's family from going through what we are. 


The 16th & 17th; Things are just getting worse.

The 16th & 17th; Things are just getting worse.

The 14th & 15th; Best weekend ever?

The 14th & 15th; Best weekend ever?