Sewing in hospital

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When

From 30 June for 4-6 weeks, I’ll be confined to a special germ-free room for a bone marrow transplant. For at least 6 months after that, I’ll be unable to go into any public or crowded places (shops, restaurants, cinemas, public transport, my office, etc) until my immune system rebuilds itself with the new stem cells.

What’s happening

Roughly speaking, it’s 7 days of intense chemo (yes, you can have chemo without cancer!!), then the next day I’ll receive the bone marrow stem cells from the donor via an IV drip, then the next few weeks are a waiting game filled with constant transfusions and battles against infections until the stem cells migrate to my bones and start producing new blood cells. After they reach a certain level, I’m allowed to go home, though I’m told to expect to be readmitted at least a few times after that.

Backstory

In 1984, when I was 5 years old, I had a really rare blood condition where your bone marrow stops making blood. To make a long story short, they tried a cutting edge therapy, which worked beautifully, they said I was cured, and it faded into the background of my existence as an aside – “oh yeah I nearly died when I was a kid”.

Fast forward 25 years to last October, when I was noticing my running was a bit more sluggish than usual (I was running 30k a week but put it down to changing the clocks) and I started having burst blood vessels in my eyes. The optician found nothing wrong and sent me to my GP for a blood pressure check. That was fine, but a blood count revealed that I had extremely low platelets (causing the eye haemorrhages) and low haemoglobin (causing the sluggishness) and within two months of that initial GP checkup I was being seen by the UK’s leading specialist and researcher in Aplastic anaemia. With hindsight, they know now that the brand-new treatment I had when I was a kid usually only lasts 5, 10, or 15 years, so they’re all very interested in me going 25 years without a problem as I’m the only known case anywhere in the world to have gone that long!

But alas, with further investigations (alongside the several transfusions a week it’s taking to keep me going), they discovered this time I’ve also got MDS (essentially: what little blood I do make is a bit weird), so that treatment that worked so well the first time around won’t make much of a difference now. So a bone marrow transplant it is, and I’ve been waiting on a suitable donor (luckily finding three 90% matches for me quite quickly) and space in the special ward for the past few months.

Wanna help?

I’m allowed to bring in pretty much anything I want to help pass the time, so of course I’ll have my little red sewing machine to keep me occupied, alongside my laptop and iPhone, the hospital-provided tv & dvd player, and a huge backlog of films and tv to watch (that’s a season of The Wire per week. I think I can do it!). I am allowed visitors, two at a time, in restricted hours, and only if they have no coughs, colds, or anything, and I’m not allowed any flowers or outside food (Londoners please email first if you’d like to visit).

Other than that, I will be reading all my emails (though I probably won’t be able to reply to as many as I’d like so please forgive me!), going through the various activity packs sent by family and friends and FehrTrade readers, and opening cards (my mom has kindly offered to open up all the envelopes to avoid any germs passed on my postal workers. Yes, it is that serious that you NOT send me anything if you’re even the slightest bit ill).

(hospital address removed after discharge. But I’ll be in outpatients twice a week so I can pick up anything already in transit whhile I’m there)

Another way to help out is to add yourself to your local bone marrow registry if you aren’t already. You only need to fill out a form and get a sample of blood taken at your GP or clinic and that’s it. And if you end up being a match for someone, then your immune system will be completely back to normal in three weeks (it’s not like donating a kidney or something where you’re missing something for the rest of your life, for instance). Please go here in the USA or here in the UK to get yourself on the list.

The good news is that I’m young, fit, and I’m being treated at the UK’s leading centre for bone marrow disorders (their dedicated bone marrow transplant unit is very impressive), so the outlook is as good as it can possibly be.

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