Categories
charitable End User

Donating Stem Cells (Part III)

It’s finally over. 8 million of my little stem cells are now on ice awaiting transplant.

The harvesting procedure itself is done on an outpatient basis and is relatively simple as I’ll describe shortly. The hard work is done in the build up to it. 16 injections of granulocyte colony stimulating factor (or GCSF) are administered over 4 days to get the bone marrow into stem cell production hyperdrive to ensure enough are in the blood for harvest.

These injections are done 4 at a time; in my case, two in the belly and one in each arm. They can be done in 8, but you have a choice – 4 relatively painless injections a day, or 2 slightly more painful ones. I opted for the former. These are administered by a nurse that visits you at home or work and who has to take your pulse, temperature and blood pressure before and 30 minutes after to ensure all is OK. In my case, 2 days were in the Supreme Court and I remain thankful to the help the staff extended in finding a room for this to happen.

I have been mulling over whether to tell the “no holes barred” truth about the process, or

Categories
charitable End User Regs Weekend

Donating Stem Cells (Part II)

It’s the final countdown.

I am writing this expecting my first of four daily injections of granuloycte colony stimulating factor, or “GCSF” anytime soon. A nurse appointed by the Anthony Nolan Trust will seek me out in London / at home and administer a drug which will get them stem cells moving out of my bone marrow into my blood stream ready for the aphoresis machine to filter them out for the adult lady with leukemia who is in desperate need of them.

Unfortunately, on that front, apparently she now has an infection, so they’ve had to stop her build up to treatment. This faced the medics with a bit of a Sophie’s choice apparently. They can cryogenically preserve my stem cells until she’s fit and well enough to receive them (and risk some of them being damaged in the process), or delay the harvest but hope all the planets align with the timings – not just my availability but a 6 day collection cycle which given predictions of narrow windows of opportunity when she may be well enough had to be traded against the slightly more optimal nature of the procedure.

The medical boffins went with the latter, so I am about to be injected and will still donate on Wednesday/Thursday.

Fitting this around work is interesting though……. well, I mean it’s fine Saturday/Sunday, I am just waiting on a nurse to pitch up, but when you are lead in your company for a litigation and the court hearing is on the Monday and Tuesday before the donation, things get interesting.

I know I, and others, can sometimes get down on the former incumbent in our industry….. and its regulator, and sometimes even the judiciary. In this case though, I have to express my extreme gratitude to the Supreme Court of the United Kingdom for making the “Robing Room” available for the injections and BT offering their break-out room for the same if need be.

Many of you will have read the first article on this I posted here; and many of your have made or pledged financial support to Anthony Nolan Trust via JustGiving or otherwise. Importantly though, I am pleased to say that this story has encouraged at least 2 people so far to register themselves as potential donors – in amongst all this, and especially amongst the worrying news about the recipient, it’s truly heartening!

Google+

Categories
charitable End User Regs Weekend

Donating Stem Cells (Part 1)

For those expecting some deep regulatory insights, alas, they will come in due course ….. But today I am hijacking Trefor.net to talk about my experiences to date helping someone suffering from leukemia.

There’s an adult female out there somewhere, afflicted with this cancer . Alas, that’s all I am allowed to know for 2 years….. and if she wants anonymity I’ll never know any more.

This time last year I had a phone call from Anthony Nolan, the charity that runs the UK’s largest register. I signed up in a moment of philanthropy 15 years ago…… And despite near misses before, this time I was supposed to be a proper bona-fide match.

More blood was taken (all the samples are done by your local practice nurse) and I kept getting holding emails thereafter. The recipients medical team where unsure whether or not to proceed. Then, two weeks ago, all of a sudden we were go…. and in a hurry.

I’ve now had my medical – this was 3 hours of poking and prodding and X-Rays and ECGs in a special unit in University College London Hospital. All apparently seems fine but I await the result. Assuming that’s OK, a week Wednesday I shall be in to donate.

In most circumstances, it’s allegedly complication free. Simply involves 4 days of injections to get stem cells moving out of your bone marrow into your blood, and then 5 hours on a special “dialysis” machine that centrifuges your blood and separates stem cells from the rest. Sounds like a very long blood donation, though involves bigger needles and one more of them.

This is nowhere like the general anaesthetic and excavation of the pelvis prevalent when I signed up….. and easily fitting around work – the injections are administered by a nurse wherever you are that day …… Though that operation may still have to happen yet (if enough aren’t collected). And for some recipients that is the best way of doing it, medically speaking.

I’ll let you know how it goes on the day; I might even live tweet it on the hospital WiFi. In the meantime though, there’s a shortage of donors, especially from ethnic minorities. If you’re between 16-30, you can sign up with Anthony Nolan here – read it all carefully and be sure before you commit!.

If you’re over 30, or it isn’t for you (there’s no shame in that), can I encourage you to give to the Anthony Nolan here via my JustGiving site, so they can continue to do their life saving work…… tissue typing isn’t cheap, and nor is the procedure. That, and they’ll have to keep me in coffee for a day!

PS. People have said that I’m brave – I don’t consider myself that…..the brave one is the anonymous adult woman battling this disease. That said, I will be teetotal for a week or so, which is probably, for me at least, the bravest bit!

Google+

Categories
charitable Cloud datacentre End User social networking surveillance & privacy

The social media summary of the world record attempt

UK trending for @tref & #comment24 on twitter The world record attempt started at 6am on Thursday 5th Feb and ended at 6am the following day. There are three stories to tell here. The first is the charity fundraising aspect that was covered on Friday.

Second is the social media story. This was an event largely promoted using the #comment24 hashtag on twitter but the story was also posted on Facebook, Google+ and LinkedIn. The effort also caught the imagination of a good number of friendly journalists as the list of names in the table of top referrers for 5th Jan illustrates.

referring site

# visits

pages/visit

time on site

1

t.co (Twitter)

2,012

2.73

00:04:08

2

facebook.com

903

4.44

00:04:56

3

gizmodo.co.uk

310

2.38

00:02:19

4

thinkbroadband.com

291

4.38

00:04:36

5

forums.moneysavingexpert.com

265

3.24

00:02:58

6

m.facebook.com

240

2.2

00:01:53

7

guardian.co.uk

233

3.07

00:03:50

8

thenextweb.com

221

2.83

00:02:47

9

telegraph.co.uk

207

3.6

00:04:47

10

hootsuite.com

67

2.88

00:04:10

11

community.plus.net

63

2.84

00:02:43

12

plus.url.google.com

59

4.05

00:05:45

13

linkedin.com

57

4.84

00:07:03

14

thelincolnite.co.uk

51

2.25

00:02:07

15

celticquicknews.co.uk

50

1.36

00:00:23

 

In all according to Google Analytics there were 162 referring sites over the 5th and 6th January. A Google search for