Long time no see

I wish my lack of updating was due to lots of fun activity but I have actually not been feeling very well - and before anyone panics we now think it was a reaction to stopping my gabapentin suddenly. In summary, I stopped the gabapentin on the friday (on doctors orders) and by the Sunday was starting to feel unwell and by that evening I was aching from head to toe and feeling really sick. For all intents and purposes it felt like I had the 'flu but without the fever. I continued to go to work but whenever I wasn't there I was sleeping. It wasn't until the end of last week I suddenly wondered if it was related to stopping the gaba - so I reintroduced it (at a lower dose) and suddenly felt a lot better! I saw the new pain doctor and my CF consultant this week who both agreed it was the likely cause. Apparently you should never stop it suddenly and it needs to be weaned down or you can have a withdrawal reaction - which is clearly what happened. To be honest I am still not feeling quite right and still have a lot of muscle pain and feel so lethargic but I am hoping this might just be a bit of a hangover effect. I am at transplant clinic on Monday so will let them know if still feeling dodgy. I also came out in lots of cold sores so maybe am just a bit run down in general. The CF team checked lung function though which was still 100% which is very reassuring :-)

The pain doctor was very nice and has some ideas to try and help. He felt the pain sounds very much sinus related and made worse due to the amount of sinus surgery I have had (which would alter nerves etc). In an attempt to avoid introducing more medication we are trying a novel approach first. Based on the fact I said sticking cold strips (from those migraine relief cold patches) over my sinuses helps my numbing them we are going to try strips of patches which contain local anaesthetic to see if this helps. I have to put them on at night and see how pain is in morning (you can only keep them on for max 12 hrs anyway). I did try last night but sadly there was no difference this morning - but I will keep trying for couple weeks and see what happens.

So with all my drama other than going to work last week I didn't really do much! I had the last two sessions with my PBL group so I have my Tuesday and Fridays back again for the time being :-) I was quite sad to finish as they were a really good group - they have to assess me though so I might change my mind depending on what they have said haha.

I did have a really nice day out at the weekend though - mum and me went to Nick Nairn cook school for a day course. I had given mum vouchers for her 60th last year so obviously I had to go along too! We stayed at the beautiful Lake of Mentieth hotel on the Saturday evening and had a nice meal there.

View from dining room at hotel

On the Sunday we headed over to the cook school for the course where we were to learn a couple of dishes which could then be adapted for different purposes. The first course was potato pancakes with grilled vegetables and a poached egg on top. They used the egg just to demonstrate to us how to properly poach an egg, but you could use something like parmesan for a starter or chicken for a main course. We then cooked a fillet steak served with stir fry vegetables. Post transplant I need to eat my meat properly cooked so I was still cooking my steak when everyone was called back for the next demonstration (everyone else's steaks were 'resting') - so one of the chefs said he would take it off when it was ready after I explained why I was cooking it so thoroughly. Then when we were all ready to serve up and I cut the steak in half (for presentation purposes!) I realised it was in fact still very pink. By this time everyone else had gone through to the dining room to eat their steak and the staff had cleared away all our frying pans etc. I was in a bit of a dilemma but thankfully the head chef happened to pass by and realised I was meant to have a well done steak so got it properly cooked for me! Was a little embarrassing but better safe than sorry I think.


I will leave you with some pics of our mouth watering creations...

Mum's potato pancake with chargrilled veg, poached egg and pesto

My steak before it was cooked again!

Never enough time...

I have never quite got round to blogging as my time has just been swept away the last couple of weeks and I have never quite caught my tail.

At the weekend we had to head back to mum and dads again in preparation for my uncle's funeral. We had a rosary on the Sunday night with close family and the funeral was on Monday morning. There were people from all areas of his life and it was nice to see so many people gather together - many of whom also accompanied us to the graveyard. Afterwards people gathered in the church hall and then close family returned to mum and dads for a little while which was nice and gave us all a chance to talk about old memories - lots of stories I had never even heard before.

I also have to say with great sadness that Jessica Wales passed away this week, aged 20 years. She developed complications following her transplant and was just not strong enough to fight any longer. She had touched many people both in her personal life and also through the media work she did on behalf of LLTGL. She had made many celebrity contacts through a twitter campaign and Natalie Imbruglia even headlined a concert - Save Jess-tival - on her behalf. Messages of condolence flooded in from many high profile people including Sarah and Gordon Brown who had been touched by her story. I think this just goes a little way to show how much impact she had in her short life - and it is this work of campaigning that LLTGL are determined to carry on. No one should have to wait this long for a transplant and there is a lot of work still to be done to improve this situation. I think if we can all adopt even an ounce of Jess' enthusiasm for spreading the word then we will start to make a difference.

On the topic of trying to make a difference, myself and Emily are starting to move forwards again with our booklet. It is so hard for us both to find the time needed for this project but we are slowly but surely getting there. I designed a short questionnaire this week in order to get some rough statistics for our booklet and within 48 hours of asking the CF community to help complete it we have nearly reached the 100 responses needed :-) It's amazing the support you can get when you ask.

I have also been busy this week because I was doing some extra PBL at the uni so covered another group as well as my own. The groups were back to back and on the same subject matter so it wasn't too bad - although I am very tired now! The topic is on lungs at the moment which is somewhat ironic.

I managed to catch up with my friend and her husband - who was caught in an avalanche at new year. He had a lucky escape but has broken his leg in three places (all pinned and screwed together now) so will be hobbling on crutches for a while. Hopefully the recovery will be smooth and there will be no lasting damage. I think boredom might become the main issue in a few weeks time! Myself and Andrew are also going to visit a friend and her husband tomorrow for an overnight so I am looking forward to catching up as we have not seen them for a while.

Finally, I also had an appointment with facial pain guy who says he has now reached the limit of his knowledge so needs to pass me over to pain clinic. Unfortunately I have not received an appointment yet even though he did the referral was back in October. His secretary was going to chase this and re-send letter if need be. It is so frustrating!! I am also hoping that whatever they suggest might inadvertently help the joint pain too as this has been quite bad lately - largely pain in one hip which is making walking sore - but also having pain and stiffness in my fingers which is new. I suspect the finger pain might be weather related though so perhaps the milder weather will help (when it comes!) Not sure about the hip though - it's exactly what I had last year but in the opposite hip. I tried to run across a pedestrian crossing yesterday so I didn't miss the green man and I nearly fell over because it sort of gave way. I looked like some bumbling mad woman haha. Nothing new there then. Anyway hopefully the referral will get sorted and we can start a new plan of action for this year and then I will be raring to go :-)

Holidays are over...

I head back to my own house tonight and am working at the university tomorrow morning before I go back to my proper work on Wednesday. Andrew doesn't go back until Thursday - pah! It has been a very quick holiday and I am not quite sure where all the time went...don't seem to have achieved much and not very refreshed! However I did see lots of my family which is the most important thing over the festive period, and although the new year period has been tinged with sadness it was still lovely to gather together.

We had quite a few problems getting back from the family gathering on Saturday due to the snow. It started snowing heavily again and the roads home were pretty scary - we passed a car that had spun 180 degrees on the motorway and was now facing the wrong way on the grass verge. We then got stuck trying to get up the driveway and could neither go back nor forwards. Our neighbours had to come out and help Andrew dig a parking and get the car moving. We couldn't even park on the main road as it is lined with cars belonging to people up a the hill behind our house. The roads are hardly being gritted and there is more snow forecast this week. Apparently in Glasgow there is no snow so I will be leaving this winter wonderland and heading back to grey and cold...!

The gazebo looks like a wee snow covered gingerbread house..

Just a wee icicle we found..

The driveway at mum and dads...

Seb has been quite well behaved over the holidays and there were no incidents of food theft -although I think we have learnt from prior experience and nothing is left within reach! We did find him standing on the kitchen table this morning though and the worst is that he doesn't even care - he started wagging his tail when Andrew walked in. So bold! He also managed to escape from the garden this year and we were only alerted when we heard barking which seemed to be coming from the front of the house. There he was wandering about the front drive as if this was completely normal. By tracing his paw prints in the snow we worked out that he has simply climbed up the snow (which has piled up on a bush beside the fence) and just walked over the fence into the neighbours garden. Unbelievable.

Where Seb escaped..

Who, me?!

I also wanted to blog about the miracle that happened over Christmas. Jessica Wales is a 20 year old woman with CF who has been waiting 4 years on a lung transplant. She was taken into hospital before Christmas very unwell and on Boxing day deteriorated rapidly leaving everyone fearing the worst. Then at the 11th hour a miracle call came - they had lungs suitable for Jess. They feared she was not stable enough to be moved - but then it was her only chance so nothing was to be lost. She received her transplant on the 28th December and was finally able to come off the ventilator yesterday and is now breathing on her own! There is a long road ahead so please keep her in your thoughts and hopefully this miracle will have a very happy ending. To help someone else have a dream come true please also consider joining the organ donor register. Perhaps you can make it your new years resolution..

The Year in Pictures

Unfortunately we start 2010 with some sad news with the death of my uncle in the early hours of this morning. He had developed some complications following his heart attack and although moved to ITU with maximum support he was just not strong enough. I drove mum into Edinburgh last night and we saw him in ITU looking peaceful and not distressed. All my family, including his four children, always meet on the 2nd January so we are going ahead as normal as a celebration of his life.

From my own perspective 2009 has been a wonderful year with so many new achievements, new adventures - lots of hard work but an equal amount of fun and laughter. My health has gone from strength to strength and my lung function is at an all time high - and I reached that target of breaking the 100% mark. Where to go now?! The sinuses and joints are still a pain (literally) but I have appointments in the pipeline for getting on top of this in 2010. Then there will definitely be no stopping me :-) I thought I would again summarise the year in pictures - 2009 in snapshots.

January: we started the new year on a high - had a lovely celebration and were so grateful for the year we had just had. I had the fundoplication surgery and wasn't too well afterwards so I decided to scrub the rest of January and start my 2009 in February :-)

Me and mum new year 2009

February: A big month for me - I went back to work after 18 months waiting and recovering from the transplant. I was so nervous - no need to be because I loved it from the second I was back. We also had the murder mystery party - going back in time...

March: Andrews 30th birthday and his surprise trip to Berlin - the first trip abroad since my transplant. It was cold and wet but we enjoyed ourselves never the less! We also had a race night for his birthday - first time I have been able to organise any celebration for Andrew. I also started working a casual PBL facilitator which I have found is something I really enjoy. It is a job where I am meant to be quiet and not talk much though - this has been a new skill I am still trying to learn ;-) March was also when the CF and Relationships booklet was published - after 3000 copies being distributed to all the CF units in the UK I have recently heard they had to do another print run because it was so popular - I think that makes me a published author or something?!

Me all wrapped up at Check Point Charlie

April: A big big month of celebration!! Starting with mums 60th with lots of surprise trips for her including a trip to see my Aunty Rose down south and a day out in London. Followed by my 30th birthday and 1st transplant anniversary which of course called for a big party! Then also my dads 65th birthday on the same day as my anniversary - what a celebration we had. I was also delighted when my good friend Lucie had her first baby - a wee boy called Reuben to whom I will become one of those pretend aunties :-)

30th cake - me as a little person

Transplant party (one of the cakes is dad's!)

Mum with Corey on her surprise trip to London

May: The biggest month of the year - Team Jac! 170 members of Team Jac walking 12 miles in the pouring rain - raising almost £26, 500 for Live Life Then Give Life. One of my biggest achievements to date! There was so much organisation but it was definitely worth it. It was lovely to have Emily up for the day and I was overwhelmed by the support of family and friends on the day - all showing up and creating a wonderful atmosphere despite the weather.

Myself and Emily at the bus station having a hot chocolate before the big walk!

Seb as Team Mascot

We made it - wet, cold but happy (honest!)

June: A wonderful trip to Nice - I loved it and I loved the fact I could relax and enjoy it - walking around, no problems coping with the heat and feeling well. I also had my job interview on my return from Nice and thankfully was offered the position - a big step forward in my working life.

Myself and Andrew with the 'petit' train in Nice

July: A trip down to London with my friends - we have been invited down to visit my friend so many times but I haven't been able to go before. We stayed an extra couple of nights and caught up with all my old flatmates who now work and live in London. I so much enjoy meeting up with friends!


August: Another big month for me - starting a new job as a Staff Grade which meant much more responsibility and a steep learning curve. I was very nervous but I feel I have risen to the challenge and although I am still learning I have come a long way since starting this new job. I also became the official Live Life Then Give Life Advocate for Scotland. I have some grand plans if only I can find the time to do them!

September: This was a difficult month with both Frances Ann's anniversary and birthday - on the background of settling into a new job I did have an emotional time and found myself missing her very much. However we ended the month with a family holiday to Tuscany which was a nice closure on a difficult few weeks - so many holidays this year with my ongoing excuse of making up for lost time ;-) I also ran my first organ donor desk with my friend Lucie - and I think it was pretty successful. If only one life can be saved through our efforts then it is well worth while.


October: A month of being a social butterfly - two weddings, a 40th birthday party and a
masked party - wow I was exhausted but so happy I could keep up the pace (almost!)

Kenny and Jen's wedding

November: Mum's first charity auction in over 10 years which was a huge success making nearly £3000 for the Butterfly Trust. I made lots and lots of cards and butterfly charms which all sold out. I also managed to somehow win the cashmere teddy bear! Also the fantastic news that my cousin Kelly Ann had her first baby - a wee boy called Jake.



December: Christmas celebrations began (although I started mine in late October haha). I went to my first work Christmas party in many years and also met up with friends for dinner and had the traditional meet up with my oldest friends on Christmas eve. The day itself was a wonderful day - and also a magical white Christmas!

Seb the poser

On top of the world!

So there it is - a snapshot of 2009 and I am pretty tired even thinking about it all! I have no idea what 2010 will bring but I will be grabbing every opportunity that passes my way. We have a big family holiday in April - myself, Andrew and both our mums and dads. We are off to Florida!! I have been planning this one since before my transplant and can hardly believe it is actually happening. I have not planned another walk for this year (need some more time to organise that one again!) but am mulling over some fundraising ideas. Who knows where work will take me? I have some more decisions to make this year regarding this but I have the feeling things will somehow just work out the way they are meant to. I have been working away on the next CF booklet and myself and Emily will be moving along to the writing up stage early this year.

Again, in this new year I always think of my donor and the life she has given me - please spare a thought or prayer for her family at this time of year. I am lucky and blessed and absolutely convinced I have two guardian angels. So on that note, 2010 here I come....