4 Year Transplant Anniversary!

Tomorrow (25th) will be four years since my transplant.  Hard to believe really.  So four years ago today I was sitting at home, spending my day as I usually did - sitting on the sofa, propped up on all my cushions, probably on my laptop.  This photo below was actually taken that evening - the balloon was sent to me by LLTGL (Robyns rainbows) when I had my horrendous false alarm and 'fake transplant' three weeks earlier.  I think it's rather fitting that the smiley face is rather deflated and looks like it's on its last legs - I think this really did reflect how I felt at the time.  I had managed to recover (as much as possible) from the false alarm but felt so desperate.  I felt like I couldn't go on much longer and the thought of 'the call' was in my mind all the time.  Although I do remember after that photo was taken that I thought it would be a good idea to inhale the helium and make my voice all squeaky haha.  This is clearly a sensible thing to do when you can hardly breathe ;-)

So I went to bed that night after my evening dose of IV antibiotics and a long physio session and connected up to my overnight feeding tube and oxygen.  At 3.45am the house phone rang but by the time I had disconnected all my tubing the phone had rung off.  2 seconds later and my mobile started belting out 'working 9-5' and I knew that no one else would call my mobile in the middle of the night.  It was The Call.  I remember a feeling of calm washing over me.  At my false alarm I had been quite excitable and chatty - phoning a couple of friends and texting like mad.  This time I was more measured - I didn't want to get my hopes up but at the same time had a good feeling about what would happen.   I cancelled my online Tesco order, due to be delivered the following day and wrote two birthday cards - one for my friend Gillian, and one for my friend Fi (who sadly passed away since) as I knew I would still be in HDU and unable to send their cards.  I then added some last minute items to my pre packed suitcase, and climbed into the ambulance 10 minutes later.

The journey down was amazing as we were flown from Glasgow airport and as we came into Newcastle there was an amazing sunrise.  I knew all would be well.

And all was well.   Here I am 4 years later, healthy and happy.   Life has been jam packed over the last 4 years and I have enjoyed every second of it.  I plan to continue living life to the full and appreciating every moment I have been given. 

I always of course remember my donor and her family at this time.  The decision they made that night saved my life and changed it beyond my wildest dreams and I am forever grateful.   I came across this quote, which sums up how I feel.   My words can seem inadequate but hopefully I can show my gratitude through my efforts to spread the word and raise awareness.

"As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them. "
- John F. Kennedy

MOT - pass!

I had my annual review - or MOT - at CF clinic this week.  It's a long day but the good results made it worth while.  The morning started at 10am at physio department.  They run through their annual check list of questions and then we do the 6 minute walk test.  You basically walk as fast as you can between 2 cones for 6 mins and they measure distance covered.  It was exactly the same as last year, which was great.  I don't think I can actually cover any more distance as I am walking as fast as I can without running.   Then it was off to lung function for 11am for full tests, which involves sitting in a box and going over lots of different breathing tests.  I used to hate this so much as I was too breathless to cope with it - especially one where they put a shutter down and you breath against it.  I used to feel like I was suffocating.  Now, it's really not that hard!  I actually got the best results I have had at CF clinic (so matching my best at newcastle) so that was fab news.  Then I went for chest xray and round to clinic.  At clinic you get put in a room and all the staff come to see you (this is to avoid cross infection in the waiting room).  I saw the CF nurses for bloods, weight, oxygen levels, cough swab.   Then I saw the pharmacist who checks all my medications, then the dietician who likes to tell me to be a bit heavier (although my weight was exactly the same as last year, which is good).  Then I saw the doctor who goes over the tests.  So all in all, I had no complaints and all my results were great.  I can't ask for anything more!   It took over 4 hours in total but I had taken a packed lunch, so when people were coming to see me I was sitting munching on my sandwiches :-)  

Yesterday I was at an NHSBT organ donation conference.  I was speaking in the afternoon but I went along for the whole day as it looked like an interesting agenda.  It was being run for health professionals to increase awareness of the current situation with organ donation in Scotland and the roles of various team members.  The majority of the day was focused on the donor side - identifying donors, how this is dealt with, the procedures involved etc.  It was interesting to hear more about it from this side, as my experience is obviously very much from the other side.  In particular I learned more about tissue donation (cornea, heart valves, tendon, skin and bone).   There is not the same time pressures for retrieval or specific circumstances around death, so tissues can often be donated where solid organ donation wouldn't be possible.  It is becoming more common for families to be asked about this option after, for example, death in A+E setting. There was an overall feeling yesterday that organ donation should be an end of life choice for people - not an expected outcome but something that people should be asked about and that medical staff should not be afraid of discussing with families.  It is not about getting a 'yes' from a family but about giving them the option to consider this.  Myself and Erin, the mum of  a young boy who donated his organs, spoke at the last session.  Our aim was to bring together what had been discussed throughout the day and put it into perspective....to show why organ donation is important for both the donor family and the recipient.  I think the combination of our talks was powerful and hopefully helped to seal the messages from the day.

I am now rather exhausted but have an exciting night planned going to see Derren Brown!!  We saw him a few years ago and the show was amazing, so I am really looking forward to it.  The tomorrow I am flying to London very early (argghhh!) for the 2nd day of the advocate weekend, then back tomorrow night. I have taken Monday off to recover...!

Finally, I have been to my 2nd pilates class and trying to practice a little on my new mat.  Seb came to see what I was doing and tried out a few stretches himself....

Birthday Girl

Last weekend was of course Easter and we spent Sunday and Monday with mum, dad, Uncle Hugh and Corey - with a visit from Sarah too.  I also had a really lovely day out on the Saturday with Lucie, Lauren and wee Reuben, Orla and Caoimhe. We went to see Julia Donaldson (author of the Gruffalo) doing a reading at the Mitchell library in Glasgow. It was an hour long show and was actually really good (even for the adults!) I didn't realise her husband was a paediatric consultant though and was really confused when I saw this guy on the stage (pretending to be the 'rhyming rabbit' complete with ears) and realised he had been the examiner in my paeds clinical exam at uni!! Bizarre. Then when we came out my friend were queueing to get books signed and I was loitering a the side - and I meet the Clinical Director from work. I was trying to hastily explain that I was with friends who did actually have children and wasn't there on my own....not sure he believed me ;-)

Then it was back to work on Wednesday, which was my birthday! I did manage to do very little work and generally floated around telling people it was my birthday and avoiding any hard graft! I even got a free coffee in the cafe next door because someone had told her it was my birthday. It's a sign of being a hardcore coffee drinker when the cafe next door know who you are and exactly how you take your coffee without you having to speak.  I managed to skive away early and mum, dad, uncle and Corey all came for dinner. We went out to a local pub which serves really nice food and everyone had a lovely time. Mum made me an owl cake!!  We had been talking about when I was small and I could choose between a hedgehog or owl cake (she had a recipe book with these in it) and then I announced on facebook that mum was making me an owl cake. She said she had agreed to no such thing haha. I knew she would come out tops though!

I got lots of fab presents.  Andrew got me tickets for 9 to 5 the musical!!!!  Love it!  Also lots of great things for my pilates, so I have no excuse now.  Other pressies from people were a lovely owl pendant, lots of nice coffee things (including a recipe book so I can go pro with my coffee making) and also lots of pennies.  These will be partly spent on shoes and partly kept for my holiday to Paris.   Oh yes, did I forget to mention that?!  Last weekend me and Andrew decided to book a wee trip for next month to Paris.  As you do.  I think we are in need of a holiday and I suddenly took this notion about Paris in spring.  How romantic am I?  It will probably rain.

Tomorrow is mum's birthday, then it will be dads and my transplant anniversary the following week (on the same day).  April is determinately a month of celebrations.   Also my birthday week still has to continue until next wednesday...

Sorry!!

Just got a row from mum for not updating my blog, so apologies all round.  It is usually a good sign that I have been super busy :-)

I will start with the most recent and work backwards haha.  We are just back from a lovely weekend with my cousin Kelly Ann and her husband Andrew.  It was their wee girl Alana's Christening on Saturday so we travelled down with mum and dad on Friday.   Alana is such a cutey and although there was a few tears before the Baptism, she then started giggling when the Holy water was poured over her head.  I don't think I have seen that reaction before :-)  Jake, who is 2 and 4 months, was great fun.  I guess we were a novelty for a couple of days and he most enjoyed getting out his doctors kit so he could 'check you out'.  His vocabulary is amazing for a 2 year old and he chatters non stop.  Very cute for us visiting but probably not so cute when Kelly Ann wants a rest.  It was lovely to see everyone and I do wish we were able to see them all more often.

Last Thursday I started a pilates class with my friend Lucie.  I really enjoyed it, although couldn't do quite a few moves because of my dodgy shoulder.  I went for a steroid injection into my shoulder joint today so am hoping this will ease things a little.  At the moment it is affecting my sleep and I think one of the reasons I might be feeling so tired at times.  I wasn't too sore after the pilates class but Andrew said this just means I wasn't doing the exercises properly!!

Last week I was speaking at George Heriot school again.  I was asked to do this last year and they invited me back, so it must have gone quite well haha.  I spoke to two different 4th year classes for 40 minutes each - they are learning about organ donation so I was to give some background on the patient experience.  I usually just stand and talk but I decided to make a slide show with some photographs from various stages in my life to have running as I spoke.  I think this helped people visualise my story and also gave me a good framework for keeping to time.  I do find it exhausting though and I took a migraine later that day - might have been the drive to Edinburgh in rush hour traffic though, so next time I think I will get a train! 

Last weekend we made the most of the fantastic weather and spent the entire weekend in the garden (another reason for lack of blogging).  I spent one day rubbing down and repainting all the patio furniture and the next day weeding the rockery.  Andrew did the heavy work of moving slabs, cutting up the old shed etc.  The end result is the garden looks less like a nature reserve/demolition site and more like a garden again.  Once the weather is more settled we are hoping to get the rest of the rockery planted up (where the tree originally was) which is a much bigger area than I realised.  I think we will be able to split some of the plants from the other side, which are massive and in need of some trimming.  Roll on the real nice weather (now that we are back to forecast snow tomorrow!!!)

The ball plans are coming together.  It is hard going trying to sell tickets as people just don't have a lot of money to spare, and also don't really like to commit too far in advance.  We need to pay a good chunk of money to the venue in May, so do need as many people as possible to pay their tickets in full before then, if possible.  The link to ticket site is at top of my blog, or you can contact me to arrange payment.  If you are thinking of coming please feel free to spread the word and invite some friends along - makes my life a bit easier ;-) 

I will leave you with some photos of Seb - I post them on facebook then forget to share them here!

Seb has been spotted trying to jump the hedge 2 seconds earlier...

Who, me?!

Feed me!

Spot the Seb