In Memory of Louise

I received the very sad and unexpected news yesterday that my friend Louise had died at the weekend, three years post transplant and 31 years old.  I have spoken about Louise many times on my blog (she posted in the comments as LouLou).  Louise had a really difficult time with her health from a very young age.  As a child she has Wilms tumour, which is a type of tumour on the kidney.  She had her kidney removed and underwent radiation therapy.  Unfortunately it is likely that this radiations therapy is what led to her developing Pulmonary Fibrosis in her twenties.  At this stage she had a degree in psychology, worked as a primary school teacher and also worked weekends as a manager at Thomas Cook.  That was the kind of girl Louise was - into everything!!  Her lung disease declined dramatically over a short period of time and she was turned down by the London transplant teams as being too unwell for transplant.  Freeman in Newcastle however agreed to take the risk.  She did undergo a lung transplant in summer 2008, shortly after my own transplant.  Unfortunately she had many post op complications and an extremely turbulent recovery in ITU.  This left her new lungs badly damaged but she was determined to carry on and make the most of her new life.   In the following years Lou developed many post transplant complications to further challenge her positive attitude.  She had post transplant lymphoproliferative disorder, a kind of cancer that can occur after transplant, for which she needed chemotherapy due to it affecting her liver.    To just add to the mix Lou only had one kidney, due to the childhood cancer, so her renal function started to decline due to her immunosuppressant medication and her already weak heart pre transplant started to suffer badly and she was diagnosed with end stage heart failure.   Essentially she had failure in every organ but somehow she just kept going.  

You might think that someone with all the above problems (and many more I haven't even mentioned) would hide herself away and feel bitter about the cards she was dealt.  Lou was the complete opposite!  She had managed to get back to doing some part time work in the school again, taken up a photography course (which she passed with distinction) and ran her own craft shop online.  She was an advocate for Live Life Then Give Life and was always coming up with fundraising schemes, which extended to other charities she supported.  She would be the first to send a home made card with words of encouragement to anyone going through a hard time, despite her own difficulties.  She was awarded Thomas Cook employee of the year and worked hard to represent them this year.

I think in many ways we often forgot how ill Lou really was because she rarely complained.  Her attitude to life was one that we could all take some lessons from.  Only days before her death she had posted on facebook that she was making up boxes for underprivileged children for Christmas.  Her blog was called Happy to be Me, and one of her sayings was 'It's not about what you have got, but what you choose to do with it',  which essentially says it all.  We will all miss you Lou  xxx

It seems to have been another busy few weeks!

Last weekend I was delighted to be Godmother at Caoimhe's Christening.  Caoimhe (pronounced Keeva) is my friend Lauren's wee baby - completely adorable, like her big sister Orla.  It was a lovely day and we had some nice sunshine for a change.  Caoimhe didn't wake up during the entire service, other than opening her eyes briefly when the Baptismal water was poured over her head, then going promptly back to sleep!   I wish I was as chilled as that :-)

During the week I had taken an annual leave day to help out at a schools symposium, being organised by NHSBT.   6th year pupils from across Scotland who were interested in studying medicine, or related health care subjects, had been invited.  There were 7 stations for them to work through - from meeting transplant surgeons,  donor coordinator nurses, labs staff to our station, which was myself and a wonderful lady whose 3 year old son had donated his organs and saved 5 lives on his death.   We had 7 groups for 30 minutes each, so it was quite hard going - talking about both our stories with each group.   I think it was a powerful message though, and allowed the students to see the real life side of organ donation and of medicine in general.

Friday I had a good catch up with Claire....whose wedding is only a week away now!  Then in the evening myself and Andrew were at the Alabama 3 concert in Glasgow.  Most people have no idea who I am talking about but if you have seen the TV show The Sopranos - they did the theme tune for that.  They describe their music as acid house country rock and I guess that pretty much covers it!  There was a really varied crowd of all ages so it was a really eclectic mix.  We really enjoyed it and also had caught up with our friends Clare and Al, who were also going along. 

Yesterday was not so much fun, as I ended up at A+E getting my foot xrayed!  It started on Tuesday with a really acute sharp pain that came on when I was walking.  I had been limping for the rest of the week and it seemed to be getting worse as opposed to better.  Although standing at a concert didn't exactly help!  Some of you might remember that a similar thing happened shortly after my transplant and it turned out to be a stress fracture (because I have osteoporosis).  Anyway the xray didn't show any obvious fracture so it is likely to be a soft tissue injury and just needs a bit of rest.  I am not very good at rest!  I have however been good today and hopefully it will clear up soon - especially before Claire's wedding next week so I can wear nice shoes for dancing!!!

I have now uploaded some other pictures from the halloween party, which shows of the decorations more.   You can check these out HERE.

Now I am off to start thinking about Christmas.  Count down will be starting in couple of weeks....

Fundraising

I was holding off blogging about the Dead Famous Halloween party until we had a final total, but I thought I better write something before people thought I had been eaten by a monster ;-)

Better to say it in pictures (more to come, but this will give a good idea!)


We had a coffin (yes, it's real) set up with a ghoul in it (whose head lit up).  We got people to pose in front of the scene for photos and then they could buy the picture in a keyring, which we were making up on the night!

Work friends.  Jamie won best fancy dress for the shower (replica of the scene in Karate Kid when he goes to a fancy dress party)

Whole team of helpers - Kirsty and Dougie, Victoria, Gregg, Harminder, Obie, Mandy and us

Kirsty doing everyone's makeup before we started!  Below she makes up Lauren (professional photographer who took pictures for us)

Andrew as Edward Scissorhands!!!

Gillian and Pip

Some of the fab decorations we had donated!!  The place looked amazing with lots of gory heads, spooky ghouls, tombstones and cobwebs everywhere.  I got lots of LED black and orange tealights and put them in jam jars with spiders stuck on them, so we had these on the tables. 

Everyone had a great night and we have raised almost £1000 from the night and donations!  We are still waiting to hear about a possible large donation through a contact so will keep you posted on the final total!  I must admit it was probably more stressful in some ways than the ball because quite a lot of people let us down on the night and didn't come along and it was much harder to sell tickets than for the ball -despite the price difference!  I think if people decide to come to a ball they will commit but for a smaller party they are more likely to pull out.  Luckily we had arranged with the venue to allow members of the public on later on, so it was actually very busy and got donations and sold raffle tickets to these people too!  We also had a lady reading Runes for us, which went down really well and Kirsty had made up lovely sweetie bags which we sold on the night.  All in all I think it was a big success, although I think I might still be recovering!

I then spent the rest of the week trying to make cards to sell at mums charity auction - again for The Butterfly Trust.  This was last weekend and was a massive success - she raised almost £2000 in one night - professional!!  It is always a fab night :-)

Will be back soon with my general chit chat :-)