Friday 28th January 2011

Getting back to this blogging now, and I love to hear your comments too, so please keep contacting me either via the blog or on facebook.

A quiet day today, catching up on work articles and resting.

Took mad dog out and enjoyed joining "the pack"; a group of dog walkers for an hour.

Tomorrow I'll be timekeeping at Lee Valley for the Senior London Games. Doesn't start until 12 but doesn't end till 7pm... long day.

No call from King's so hoping that's because I've got happy bloods. Yay!

I've started watching the newsagents for the March edition of PRIMA magazine. Here are some photos of our photoshoot. With the big steroid head that I have at the moment, it wasn't an enjoyable experience but I know there were some lovely pictures of the family complete with mad dog.

Happy and Sad...Good News and Bad News..

Good news...I had a really interesting day, today.

Bad news...I had to say adieu to a good friend who I will miss (but I hope she will return in 6 months)...

Good news...I went to a very interesting talk at King's given by pharmacy.

Bad news...I've been told I can't run the London Marathon (but I was starting to come to the same decision myself, but it was taken off of me).

Good news...Saw lots of people that I haven't seen for an age..

Sad news...A good friend had a very sad day today. My thoughts are with her and her family xx

Happy news...I am aiming for the London Marathon 2012, with the main goal in the meantime, to stay out of hospital this year and have lots of happy blood...

Bad news...not for me, but two poor consultants at King's who had to listen to me having a bit of a rant about the ongoing discussions regarding national v local transplant list...

Good news...I think I was preaching to the converted..if you get my drift!

On the last Thursday of every month, LISTEN runs a Group Support Meeting for pre and post liver transplant patients at King's. Every second month a hospital professional comes to the meeting to talk, and today was pharmacy. We usually have 3-5 mentors attending (me included) but today we were to say goodbye to Jacomi, the Liver Unit Social Worker, so we were joined by many more - a brillant turn out. Jacomi has been a fantastic support to LISTEN for many years and has become a very cherished friend.

The talk by Pharmacy, bascially (for the interest of any Liver Transplant Patients reading this blog), was to advise us that a number of generic drugs have been introduced recently. There are now generic Tacrolimus and generic Microphenolate. As you would expect, King's are asking that we stick to the drug brands that we are currently on and NOT change to a generic brands. So keep to Tacrolimus Prograf (or Advograf) and Mycophenolate CellCept unless King's advises otherwise. There is a chance that some GPs may prescribe the generic brands as they are cheaper, but the variable between the known brands and the generic brands is too wide to guarantee the generic brands effectiveness. So for now, avoid. The Tacrolimus is a particular concern; the Mycophenolate, I was told by one of the consultants after the talk, we will almost certainly be told we can accept the generic brand..but not yet.

After "Group" was the official opening of the Todd Ward Relatives Room for which LISTEN donated half the funds. Todd is the main liver unit ward at King's and this family room was a dull, dark uninteresting box; now it is in the process of becoming a lovely butterfly. The nurses made lots of fantastic dishes, and I'd have to say there was around 60+ people coming and going to have a look.

From Todd I went to Liver Outpatients and it was lovely. Yes, being in OP was lovely!! lol.. It felt like we were continuing the party as so many patients and mentors had blood tests too.

Met and spent time with others not mentioned. So for me, a very sociable and happy and sad day. But a good day. Always a good day xx

January 2011

Christmas came and went. All very lovely. New Year came and went. Little N and I travelled to Lancs and Cheshire to visit family, so very lovely too.

Now January is nearly over! Where has it gone?

Mad Dog and I passed our Kennel Club Silver Award last week...yey!! She was as good as gold. I think I had the right dog?! Today we had our first training lesson towards the Gold Award. "Now you are Gold" advised Ann Cook our trainer, "The dogs are trained off the lead"!! Yeah, right...lol

Mad Dog VERY happy with this decision. Mad Dog decided she rather liked Gold training! Mad Dog set all the other dogs off and played chase and hide and seek around the training centre. And me? Sorry, I just stand there and laugh.... Bad Mad Dog! Bad Mad Owner!

I have been enjoying a month that I lost being in hospital last year.

I was Chief Timekeeper for the Surrey Cross Country Championships, which was a real challenge and great fun. Helped of course, by the support of two exceedingly good timekeepers with two very brand new ones.

Then I was at Lee Valley as Timekeeper Steward, which is all administrative work and knowing how to keep your cool and react quickly to unplanned situations. I like this sometime more than timekeeping!

This coming weekend I will be timekeeping for the London Games held again at Lee Valley (north London). This will be my first track event since September, so I'm a little nervous - but will be fun!

Last weekend was the British Liver Trust (BLT) Conference held at Walton House near Stratford Upon Avon. A very beautiful setting and it was great to meet some ex-LISTEN committee members, one whom I'd never met, and one who I haven't seen for quite a while. BLT had raised funds to cover the costs of our accommodation and dinner, and a few of the topics were quite controversial.

The NHS want organ donation to be transparent. Apparently it currently isn't. So in doing this they are investigating and discussing a National Transplant list as opposed to the current Unit List. The exception to the rule is the Super Urgent List which is already National but only the top 3 cases are allowed and usually with 48 hours to live. This was the list I was put on.

The major flaw that I see in this new National List for all liver transplants, is that due to the total lack of donors and of course people not signing up for the Donor Organ List, the organs that do become available will go to maybe not quite the sickest but those who will have the best chance of a long life. What's the problem here I bet you ask? Well, personally, and I have been given confirmation of this, it will mean that because of the lack of organs, there will be no re-transplants. A computer will hold all the information and will allocate the organ to the next on the list. No chance for re transplants because whilst you may get another 10+ years of life, on average this will not be so. The other issue is getting the recipient of the organ to the organ (or vice versa) which rather than local London and south, could mean transporting from Scottish islands, NW England etc, where a shorter distance to travel (ie going to your local transplant unit) would mean the organ would have a much better chance of "taking" as the period from harvesting to transplant is tight.

Enough! I'm really on my high horse about this right now and could go on for ever....I won't!!

Running. Have been doing quite a bit but 3 runs in a week equals needing sleep for a week. I am considering deferring my Marathon place until 2012 if that is a possibility. My running pal is in agreement for us both.

Tomorrow is a busy day. Thursday.

I have had a plaque made to take to King's tomorrow:

Todd Ward Relative's Room

Partly funded by

LISTEN At King's

January 2011

So tomorrow is the grand opening of the said ward room which LISTEN donated around £3,000, with the same amount again raised by a gentleman called Wayne Bowden. He is currently training to cycle from London to Brighton and hopes to compete in the Transplant Games which this year will be in Northern Ireland.

SO tomorrow. Group Support will start at 12.45 with a talk by the pharmacy about new drugs available, then the opening, then time for my bloods.

Happy bloods tomorrow please!