R.E.S.P.E.C.T

It is me again! I am trying to update more often so that I don't have to write epic entries when I do finally get round to it. I have said this before though and it never lasts (or I just write epic entries more often).

I had really horrible couple of days at work this week and it is at these times I wonder why I do the job I do. I can't really talk about the specifics of work on my blog (confidentiality and all that) but it was basically about having to take abuse from patients. One involved a torrent of very personal insults and the second was a very angry threatening behaviour incident where I was rather scared and did half the consultation standing beside the clinic door, hand on handle. In psychiatry I am used to seeing lots of illness driven behaviour where people are really not responsible for their actions and it goes over the top of my head but these particular incidents were nothing to do with illness. I suppose it is actually the same for anyone working with the public and doctors are unfortunately not immune. The time of people having some respect for doctors is long gone and there is even less respect for psychiatrists (in fact most people don't even know we are doctors). It's not that I think doctors should have special respect but just the kind of respect anyone would expect to be treated with - after all I am doing the job because I care about people and I genuinely want to help them. It's not all bad though and I guess it all makes for a varied working life...or something.

I also managed to have coffee with my friend this week and Seb was very embarrassing. 10 minutes after her arrival he appeared with her boot from the hallway as no one was paying him any attention. I took that off him and gave him a toy. 5 minutes later he appeared with the other boot. I shut him in the room with us and gave him another toy. He then got out his toy phone and started ringing it then looking around to see if we were looking (it is a soft toy phone that rings instead of squeaks). This is what he does when he is really attention seeking. Eventually he fell asleep but on wakening he decided it was dinner time and disappeared to the kitchen where he started rattling his bowl loudly as a signal he wanted dinner. I ignored this but then two minutes later he was drumming loudly on the utility room door where the food is kept and then came back into the living room and stood and stared....and stared....and stared. He likes to get his message across. It is like having a small naughty child in my house.

Anyway that is a long enough update I think :-) I have a quiet weekend planned so hopefully can just chill out a bit before another week begins..

Hammer down on £1, 298

Ah well, the deal is done - I have actually forked out the above sum for travel insurance. I never thought I would see the day! I spoke with another specialist broker who did reassure me that as long as I stay out of trouble in another couple of months (once over a year since last admission) I will be eligible for the normal Fortis policy which is under £100 worldwide. Galling to miss out by only a matter of weeks but at the same time I am reassured that my travelling days are not over. Anyway my family have rallied round to help me with the costs so I have not been left to sort this out by myself. Families who love you are rather good things to have...

So now I can start to get seriously excited! I have pre booked tickets for Kennedy Space centre and 2 days passes for Disney. I am thinking probably Magic Kingdom and Epcot would be my choices in those 2 days. I am not really into roller coasters etc so Epcot more my style...and you can't seriously go to Disney without seeing Mickey Mouse at the Magic Kingdom haha. The tickets arrived last week and the Disney ones are like plastic swipe cards with Disney characters on them. My first reaction was to point to the Pluto one saying 'that one is mine, that one is mine!' which was perhaps a little childish ;- )

I am doing a lot of work on the CF Body Image booklet. We have completed our survey with over 150 respondents, so I am now looking at the results of this and trying to pull out some useful statistic from them. It is really quite interesting so far - especially around weight issues. I would love to do a proper study comparing CF people and their weight/eating issues with a control group from the general population - maybe one day I will get to do this through work perhaps. So this little project will fill some of my days off for a while....in between meeting people for coffee of course. The other big project is my father in laws birthday invites. These are top secret however although production has now begun....

Trials and Tribulations

The saga of the last two weeks has been travel insurance. I have phoned around 15 companies (all who specialise in pre existing conditions) and was refused cover by all except one who would cover me for ....£2,400. More than the holiday cost! I had looked into insurance before we decided on Florida and had a policy sussed out where I would pass the initial medical screen thereby not needing to answer in more detail. However one of the questions was about seeing a specialist in last 3 months other than regular check ups. Of course I was at the new pain consultant a few weeks ago and although this is for a chronic problem they did not accept this as a regular check up (this was after much to-ing and fro-ing and discussion with managers etc). What really makes me angry is that I was referred back in October last year but the referral got lost...which is the only reason I had that appointment within 3 months of my trip. Grrrrrr!! Also what I have found to be very ironic is that the transplant is not what causes the insurance problems - it is the CF! The condition that is now least likely to cause me to claim on holiday. Freeman transplant unit are also the only ones in UK who do routine bronchoscopy in the first year - so all those 1 night admissions are counting against me even though it was for testing only. Anyway after some more phone calls the broker I am using has managed to (hopefully) get the £2,400 policy for closer to £1,200. I have yet to see this policy in writing though. I cannot believe that this 2 week saga has altered my perception so much that I now think £1,200 is actually a good quote!!! I think I will be holidaying in Europe for the foreseeable future ;-)

After all that stress it was just as well me and mum had a wee trip to Stobo Castle booked last week as part of our Christmas. We headed over on Thursday afternoon, got straight into the fluffy white bathrobes and floated about the spa for the rest of the day. I had an Indian head massage on the Thursday and a french facial on the Friday morning. The facial was nicer actually as you are lying down and they also do a face/head massage, where as you are sitting up for the Indian head massage which actually started to hurt my back (kind of defeats the purpose). The therapist said my shoulders were so tight she couldn't really make much headway with them but they also had these amazing water jets (like a very very strong shower) in the spa area which really helped my shoulders and neck - although I did keep getting knocked over as it was so strong. I kid you not. The food was lovely and you get to go down to breakfast in your bath robe which I liked :-) I would definitely go back again and would love to stay two nights next time for the ultimate in relaxation. We might start saving now..

Last week we went to a play (The Ching Room and the Moira Monologues) at the Citizens Theatre - it was being directed by someone I went to primary school with so we thought it would be nice to go along. This friend left for Canada at the end of primary and I have not seen her since, until she added me on facebook! We caught up for a quick catch up after the show and it was really nice to see her again....and really strange to find that I recognised her immediately. Apparently I have not changed much since primary school either haha....apart from not having the pony tail with the white ribbon any more ;-) When we were at primary school we spent an entire year making a series of Vampire plays, enrolling various classmates and then performing them for the teacher. Sacha was a key instigator in this so I wasn't surprised to hear she ended up doing theatre studies. Clearly I wasn't that shy at primary school either.

Seb has been getting better when I go away now although still gets huffy when he sees me packing. I actually toyed with the idea of getting another Tibetan Spaniel to keep him company when I'm at work - the breeder is looking for a retirement home for her 7 year old female Belle. I thought it would rather cute to have 'Belle and Sebastian' :-) However I guess it is twice as much work, twice as much cost and maybe he is too old and set in his ways now. I will leave you with a picture I took this morning. The washing pole was lying along the bench and Seb appears to be performing some acrobatic tight rope walking exercise.....please note the small back leg hanging casually off the side of the pole.

"Yes...is there a problem?"

The Sky's the Limit

I had my transplant clinic yesterday and achieved an all time lung function high of 107%! This is just over 3 litres - which can be compared to less than half a litre before my transplant. I never thought in my entire life I would get over 3 litres :-) They were also pleased that my blood pressure was fine (it is common to get high blood pressure due to meds), oxygen levels were 99% and x-ray looked good. An all round good report so I am allowed 4 months reprieve this time.

We discussed the problem with sinus pain and the fact I am looking at some serious pain medication now. The CF team have always wondered if my sinuses and joints have become worse due to stopping Azithromycin - this is an antibiotic but in CF people seems to have some anti inflammatory effect in the lungs and anecdotally the CF consultant has found it helps CF people with sinus problems. However it is also used as a treatment for chronic rejection post transplant so it was stopped so I could have it in reserve. The balance has seriously tipped in favour of restarting this now as my quality of life is suffering significantly, so we have decided to restart at a lower dose for a trial period of a few months - if it doesn't work then I will stop it but I can continue this if it helps. I really hope it has some effect on both my sinuses and joints as I do feel like I am destined for a life of chronic pain at the moment, which is not a pleasant thought. If it doesn't work then I have to keep in mind that I will be getting reviewed at pain clinic again so all is not lost.

I have been looking into things for us to do on our Florida trip in April - not long to go now! I have booked a mini van for dad to drive us all around :-) I have also been looking into pre booking some tickets for Disney World as you can't really go to Orlando and not visit Mickey Mouse - as I keep telling my father in law. He is not convinced but is going along with my plans hehe. I have been to Disney when I was younger - about age 10 I think - I am sure it will have changed a lot in the past 20 years but I am sure it will be great fun even as an adult. We are also looking at the Kennedy space centre and a trip to the Everglades. Ideas for what to do in the Everglades and elsewhere in the Orlando area would be much appreciated (leave message in comments section).

Not too busy a week planned. In fact I might just get time to start using my meditation CD. I am being serious. My next blog might be seriously chilled...

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....

Merry Christmas!

I had a wonderful Christmas day and am now relaxing at Anne and Johns for a couple of nights. Lovely to spend time with all my family....and I still have all the New Year Celebrations to come. I do tend to spend some time thinking of how life used to be before the transplant because it is at this time of year that the difference becomes so much starker. I think of the Christmas before my transplant and how unwell I was - I had to have my presents handed to me while I sat in the chair tethered to my oxygen and really struggling to even open a parcel. This year I bounced around the house chattering non stop and basically behaving like a small child. It was fabulous.

Scene from window on Christmas morning!

I went to bed around midnight on Christmas eve but I was so excited I had to take a Nytol to get to sleep. I am not kidding. I woke around 6.30am but I am not allowed to wake anyone until 7am so had to lie there for a while. Andrew and I opened our stockings and then dressed Seb up in his Rudolph antlers and reindeer hooves so I could send him in to wake mum and dad :-) It is a tradition that I have to wake them with a Christmas tune on the piano so this year they were woken to 'we wish you a merry Christmas' - unfortunately there were several bum notes so I must practice for next year. Mum and dad then get their stockings from me - this is a new tradition I started a few years ago but in my opinion no one is ever too old for a Christmas stocking. Then some fresh coffee and mums pancakes to give us some energy for the present opening! I was thouroughly spoiled (as usual) and mum has basically revamped my entire wardrobe so I will need to do a little clean out when I get back. Andrew got me a shiatsu back massager - it covers an entire chair and you sit there and get your whole back massaged. It is brilliant! I suffer from a lot of back and shoulder pain so this will be fantastic. I was also treated to a lovely jacket and boots. Frances Ann used to say 'you can never have enough jackets' and I have tagged boots onto the end of that. Myself and mum are also going to Stobo castle for a treat which I am really looking forward to. There was a general theme of clothes, pampering and de-stressing! I don't know where anyone got the idea I like clothes...

Having a shot of Anne's new head wear..

Me and mum on Christmas day

Christmas dinner was absolutely perfect as usual and the special sago pudding was my favourite (Granny's recipe never fails). We had it a bit later this year as we had popped up to visit my uncle in hospital as he had a heart attack just before Christmas and wasn't allowed home. He was doing ok though and it probably is the safest place to be at the moment - they are also hoping to do some surgery so fingers crossed this will be allowed to go ahead.

The sago pudding being lit before serving

Seb seems to have enjoyed Christmas and has been enjoying his new toys. I gave him a parcel first to keep him amused but then he thought every parcel was for him and had his nose in everything I tried to open haha. He also sported his little bow time all day and looked very dapper ;-)

Seb relaxing with all his new toys

I am now chilling out at Andrews mum and dads before heading back to mums for New Year (although have to go to work on Wednesday - bah humbug) but I will have another few days holiday after that. Although it is a busy time of year it is nice to have some time away from work and all the worries. This is just a time to think of family and friends....and be thankful I am here to enjoy it all. Please spare a thought at this time for my donor - she has made all my Christmas wishes come true and I cannot be more thankful.

One More Sleep!

I didn't quite get time to update in the past week so this is just a quick update before I go to bed for one last sleep before Santa comes!

Last weekend was my work Christmas night out. It is the first work Christmas party I have been to in several years so it was nice to be able to join in for once! I had a great night and lasted to the very end - still dancing :-) Andrew and I were also supposed to be meeting up with my friends for a Christmas dinner on the Sunday but none of us could make it to the restaurant because of the snow! We made a pretty good effort but when the road markings on the motorway disappeared we thought it better to turn around. I was really disappointed we missed it but I did still catch up with everyone today as it is a Christmas tradition that we all meet at mums house and exchange our gifts, which we have been doing this for well over 10 years now :-)

The weather has been extreme but I am rather excited that it is going to be a white Christmas. Mum and dads garden looks like a magical winter wonderland with frost laden branches, icicles hanging from the windows and a blanket of powdery snow. I know it creates havoc on the roads (I had to get the train to work this week) but it does look rather beautiful.

Icicles!

My garden

Chaffinch

Goldfinch in the snow!

Seb quite likes the snow (being Tibetan and all) but we have recently learned that he isn't so keen on the slush. Mum took him a long walk yesterday and about 1/2 mile down the road he decided he didn't want to walk any more and mum was literally dragging him along. So she had a brain wave. She stopped at my cousins and asked for 4 freezer bags (they actually only had orange nappy bags) which she then tied around Sebs paws like little snow shoes. He did actually start walking again but the bags didn't stay on long enough. So then she had another brain wave. She had a canvas shopping bag.....and in Seb went! He sat down in it quite happily and allowed himself to be carted around - all 1 stone weight of him. I have never heard anything quite so ridiculous. I think perhaps I should get him some wee welly boots instead...



Well I am off to watch our Christmas film and then off to bed and try to sleep. I am 30 and still can't sleep on Christmas eve. I know I must though or Santa wont come.

I would like to sign off by wishing everyone peace and joy this Christmas!

Final Countdown!

Where this week go? I can't believe there are only 7 sleeps until Christmas! I have had a busy wee time of it over the last week and am so tired - but looking forward to a well earned long lie tomorrow :-)

Last weekend we had mum and dad over for dinner and a trip to see 'A Christmas Carol' at the Imax (3D cinema). I had a go at making mulled wine which turned out quite well for a first attempt so we had with mince pies in the afternoon. We then had roast ham for dinner and I tried a new recipe for individual pineapple upside down cakes which have coconut in the cake mix - yum :-) By this time we were all so full we couldn't even fit in any popcorn at the cinema! The film was really good and worked well with the 3D effect. I had a very embarrassing moment though when my phone alarm (to remind me to take anti rejections) went off half way through the film! I had my phone on silent but I forgot that the alarm will still go off regardless. To make matters worse I had this giant bag where you can't find anything so I was raking about for what seemed like an eternity before i found the phone - and of course the alarm gets louder and louder until you switch it off. Very embarrassing.

On Tuesday I had a great afternoon as it involved clothes and buying clothes. My friend Alison has just set up a business as an agent for clothing stores - mostly supplying those small quirkier style shops. She also has a website with vintage style jewellery and purses - click HERE to have a look (5% profit goes to Live Life Then Give Life and Cancer Research). Anyway she was selling off the autumn/winter clothing samples and since they are all small sizes she invited me over for a look. I could have happily bought most of the stock but had to try and curtail things a little. I say a little. I got a few tunic style tops which I like at the moment and a couple were quite quirky - one grey tunic covered in little owls and another top with russian doll print which is really popular just now. In between trying on clothes I was playing with her 5 month old Boston Terrier - Elvis - who is so cute! We then met Andrew and her partner Neal and had some dinner at an Italian which was really nice. So that was a lovely day out for me.

Last night I also met up with my friends Lucie and Lauren for dinner, which again was lovely. I am sure I am going to put on quite a few kilos over Christmas! I was a bit upset later though as this pain has been worse again in one of my wounds from the fundoplication surgery last January. It comes on if I eat anything more than my normal and then is like a stitch pain when I walk. It is so so annoying but I think I will have to learn to live with it. The surgeon wasn't sure what was causing it other than perhaps scar tissue - either from the laparoscopy or the peg tube repair. It's a shame that after I get an appetite for the first time in my life I then feel like I can't eat very much in case I get this pain. At least the surgery should help protect my lungs though which is more important in the long run!

Today was the last PBL before the Christmas holidays so I am glad to be having a short break. I am still enjoying it but it has been quite hard work so far. I am facilitating on topics I have long forgotten so am doing a lot of background reading so it's nice not to have any 'study' to do for a few weeks. My last day at my 'proper' work will be Wednesday so I can't wait - I think I deserve a wee holiday now :-)

Parcels, trees and exhaustion!

The parcel arrived! End of DHL saga :-)

The Christmas tree is up! We spent last Saturday morning putting it up and I am really quite pleased with the finished article. I decorated it with gold and red beads instead of tinsel and then just added all the ornaments. I think it almost looks old fashioned like something from the Victorian era (although we don't have actual candles on the tree!) I like sitting in the evening just looking at it and thinking of all the memories associated with each ornament. This year we were able to add a little glass angel from Nice, a wooden angel from Berlin and a glass beaded heart from Tuscany - another three memories from my post transplant adventures. Just as well the tree is 7 foot because I have so many more memories still to collect :-)



I spent Sunday wrapping up presents but unfortunately didn't feel very well by the evening and had to go to bed early. I think the bending over all day had gone for my sinuses and my head was so sore! You should have seen the room though - it was like Santa's grotto. I tend to get carried away at Christmas but it's half the joy :-) I am not sure if I triggered things off but my head/face has been so sore this week. I haven't heard from the pain clinic yet although my CF consultant was also going to drop them a note explaining how much it is affecting my post transplant health so I hope that might hurry things up a bit.

I got to the end of last week in one piece and am really enjoying the PBL facilitating! I have a great group of students who are making my job much easier. I am feeling pretty exhausted though as I am not used to getting up and out the house every day. I think it just feels extra busy because it's Christmas time so lots of organising and general busyness other than work and my wee body is not quite sure what I am up to :-)

Little Seb has to get his yearly vaccines today and I was dreading it. As expected he did make a drama - dancing around the table, trying to jump off and tossing his head around - while wagging his tail at the same time! He insisted on being examined while standing on his hind legs with front paws on Andrews arm and the vaccine itself had to be administered while I mashed his head into my face to distract him. The vet said that his heart rate was actually quite slow which would indicate that most of the dancing around is Seb putting on a show for us and he is not as anxious as he might seem! I have said it so many times before...drama queen.

Seb's foot stool had to be moved so he has moved into the tiny leather chair!

Losing the plot: My DHL saga

I made a purchase online, to be delivered by DHL. I tracked the order and waited in on the expected delivery day. I waited and waited. I saw a DHL van in the street but it turned and went away... I logged in at the end of the day to see the update 'attempted delivery - no one home'. I was outraged and a series of irate emails ensued. I was reassured an attempt is always made the next day. No such attempt was made. I received an email from DHL telling me to call and rearrange delivery - I called. The number was no longer in use. I phoned customer services and was given an email address for the local depot to check they had correct address (no card had been posted through door). I emailed. It bounced. I went onto the online chat on DHL and spoke to Colin. He was very nice and said he would get the depot to call. The depot called when I was out and when I called back it rung out. At this point I said to Andrew that I felt like I was going mad and this was all some elaborate hoax for You've been Framed. He did comment that I seemed to be the only person to think this parcel existed. Shortly after I tried to call the depot again. I accidentally keyed in the tracking number instead of the phone number but it rang and someone answered 'switchboard'. I said they had a package for me - he said "I sincerely doubt that..this is a psychiatric hospital'!! I think someone is trying to tell me something...men in white coats coming for Jac...

DHL aside, I am nearly at the end of a busy week - only one more days work before I can have a wee long lie! I have been really tired but have still really enjoyed the week. My head is a bit 'buzzy' just now with work things and PBL things flying around at the same time, not to mention Christmas trees and fairy lights. I am not good as switching off and do really need to learn some relaxation techniques. I would like to look into types of meditation....but I don't have time haha. Seriously though - suggestions on a postcard welcome.

I have been restrained and not put the Christmas tree up yet but I did set up the crib last night. Luckily Seb doesn't seem interested this year - I have to keep an eye on him after the crib raiding incident a couple of years ago. He used to get really excited with the decorations going up but now he is getting old and grumpy and doesn't like anything that interferes with his routine! Just wait until I put the tree up and he realises he can't see out the window ;-)

I will leave you with a video clip of Emily - talking about organ donation. It may be selected for a 3 minute wonder on channel 4 and I think it would be a fantastic way of raising awareness. You might need a tissue..
Video

Working 9-5....what a way to make a living!

This week (and until the end of January) I will be working every day. Why did I think this was a good idea a few weeks ago?! I already mentioned that I have agreed to facilitate a whole block at university which starts tomorrow. We had the briefing meeting last week to give us the notes and some general information on the block - it's hearts and kidneys before Christmas and lungs in January. I am looking forward to it but am a bit nervous about working every day (albeit half days at uni) but it will be a good challenge and some extra pennies for Christmas shopping! So tonight I will be reading about heart anatomy and physiology - of course this is clearly relevant to my current work in psychiatry ;-)

Last week I was talking at the carers group at work - they meet once a month in the evening for support and information, so I was wheeled in to chat about medications. It was interesting to meet some of the carers who play such an important role in the lives of our patients, yet are often left on the sidelines and I think they found it helpful to have the chance to have some questions about medications answered. It's all good experience for me in learning to talk for different types of audiences so I think it was worthwhile going along.

I had a mad cleaning thing over the weekend - last weekend I was 'sorting' but this weekend I was moving sofas to hoover behind them, washing windows and all sorts of other things. I was totally shattered and went to bed at 9pm last night! Andrew went out to tidy the hut but I am sure it was to get away from me in case I gave him any more tasks haha. It was very cathartic though and it's nice to get all sorted before Christmas - especially since it's nearly time to put up the tree :-) I can't quite decide when to put it up yet but probably this weekend, if I can last that long. Since I go home for Christmas I feel the tree has to go up as early as possible so I get plenty enjoyment from it before then - which I think is fair play. Only 25 sleeps :-)

I will leave you with a Seb picture. This was taken driving back on the motorway after buying the 7ft Christmas tree. We had to fold the seat down so Seb managed to get himself up on the raised seat beside the tree so he could stare out the front window. It was SO disconcerting having a back seat dog driver peering over my shoulder!

Update

Some good news - Emily is home from hospital to finish her IV's there and they were pleased that her lung function is going back up again. Phew!

Sadly I also heard that another young lady (known via CF forums) has lost her fight with CF - her transplant call did not come in time.

Another friend from my hospital has just had another false alarm for transplant today - this is her 6th false alarm now and I cannot imagine how that feels. Here is hoping that her real call comes soon and brings her the best Christmas present ever!

If you haven't already signed the organ donor register -please take a couple of minute to do so today. You could save a life.

Click here register.

Weekend indoors

I am so glad I was at home this weekend as it has been pouring for the entire time - some flooding but not as bad as most other areas. A good excuse to stay indoors which is sometimes quite nice! When I have gone out Seb has been forced to wear his little rain coat - a passer by commented that he looked very smart haha. Despite being indoors I have not really relaxed much as I was in 'sorting' mode yesterday and ended up clearing out the two big hall cupboards along with lots of those 'stuff' drawers where you just pile in everything and anything. I was actually looking for 2 particular items, neither of which I found...although I did come across lots of other interesting things I didn't know I had ;-)

I went into town with my cousin Sarah on Friday for some Christmas shopping - we were very efficient shoppers and didn't hang around long as it was stressfully busy. Unfortunately I got home to find I had left a carrier bag in Debenhams - which I had put down when looking at something. Argghhh. I had to go via a call centre to get redirected to the store - the first time I got cut off, then the lost property department rang out, then I got the department where I left the bag but they didn't have it. I tried again yesterday and after three calls via call centre eventually convinced someone to give me the lost property number - which was constantly engaged for 3 hrs (off the hook more like!) Eventually I got through and they did have the bag (along with several others left my people). I then got a 5 minute lecture from the lady about leaving my receipt in the bag as someone could have returned the item and being more careful in future and I was a very lucky lady blah blah blah. You would think I had left a million pounds lying in a bag the way she was going on!

This week is quite busy as I have a meeting to brief me on the PBL block I am facilitating, which I need to fit into my lunch hour on Wednesday. Then in the evening I am talking to the carers group at work (carers of people with severe mental health problems) about drug therapies. I have spent this afternoon looking over some information but to be honest I think it's quite informal and it's more likely they will just want to ask me questions about various worries. I am not really sure how it works but will be interesting to see. Then I had a letter as there has been a recall on my car - something to do with the steering shaft, which doesn't sound good to me! So that has to go to the garage, and somewhere in between I have the dentist and my second swine flu jag. People who are immunosuppressed have to get two jags as the response to the first one might not be sufficient (since my immune system will not respond the same as a normal person). I felt ok after the first one although my arm was really sore compared to the normal flu jag. However this week I had a bit of a temperature (and it flickered last week too) so I think this might be a delayed response to the vaccine. I am otherwise ok and didn't have any other symptoms so not sure why else it would happen. It has settled down now so hopefully I will be fit and ready for the 2nd jag at the end of the week. Lucky me :-)

The BIG news in this week is that I have purchased a 7ft pre-lit Christmas tree. Oh yes. It is rather magnificent(don't worry, it is still in the box). Post transplant I am not allowed a real Christmas tree due to bugs that can grow in them so I feel quite entitled to a special fake one. Not long until I get to put it up :-)

Lastly can you have a special thought for my friend Emily who is in hospital at the moment. She had her transplant before me and helped me through the journey - the same Emily who I am doing the booklets with. Her lung function has dropped recently and she has had a cough for a while now so she is in getting some IV antibiotics and they will see if lung function has improved tomorrow before deciding on next step - so some good thoughts her way that all goes well tomorrow. In her own words 'I am in hospital being mendificated'. I might try using that word at work next week..

Butterfly Trust Auction

Mum's charity auction last week in aid of The Butterfly Trust was a huge success raising over £2,300 on the night! Everyone had a great time and the double act between Carol Ann (auctioneer) and her mum, my aunty Agnes, was first class as always. The night really would not exist without them. There was also of course a stampede for mums tablet (with Granny Monaghan's famous recipe) and mums well known fruit loaves - hands were flying up all over the place trying to get some :-) I had made lots of cards so raised nearly £90 from selling those and another £100 from the butterfly charms - although we managed to sell most of those before the night. We also had a raffle with Watson the Hawick Cashmere teddy bear as first prize. I have had my eye on Watson since the day I first saw him via email - a photo of a lonely (but rather expensive) little bear in need of a very good home. I joked all night about how mummy had come to take him home and bought a good few raffle tickets - the only thing stopping me buying more being the fact we had run out! Helen the Butterfly Trust chairman drew out the ticket - which gave first prize of Watson to my mother in law who promptly handed him over to his rightful owner. Me :-) Anne, I can assure you that he is being very well looked after and it well out of Sebs reach. Oh how Seb would love to get his paws on such a squishy soft teddy bear! I know he is a posh dog but he isn't quite posh enough for a cashmere teddy quite yet...

Watson

Speaking of Seb and his teddy bears. After the demise of 'Mr Moose' which he chewed the face off he now has a floppy rabbit I got in some pound (euro) shop in Berlin. He LOVES this rabbit. Well, in a chew to death, jump on top off, shake the stuffing out of kind of way. I came into the living room the other day and saw the poor thing lying on the carpet and seriously thought 'that does actually look like road kill lying on my good rug.' I have been hunting for a replacement and have found 2 different toys for his Christmas which I think might fit the bill - I stood there in the shop squeezing them for 'pad-a-bility' factor (where he pads on the thing like he is performing CPR -for those who missed it first time round click HERE), shake-ability and likelihood of head to fall off. I do these tests quite surreptitiously.

Seb's bunny road kill

I have been offered my own PBL group to facilitate at the university for the next block which runs from Dec to end of Jan. I am really pleased as casual facilitators don't often get to take their own group (we usually just fill in) so it will give me a chance to work at getting to know a group, how to organise this group and also carrying out their assessments at the end. Unfortunately the block is on 'Cardiovascular, Respiratory and Renal Systems' which, apart from maybe respiratory, I have forgotten a lot about - and to be honest i am not sure I even got 'kidneys' the first time round ;-) It is however twice a week on my two days off so I will be working every day until end of Jan - oh how I will regret this on the cold mornings! It will be good to see how I cope with this level of work though and it is only in the mornings so I am still factoring in plenty time for coffee meetings and shopping. Got to keep things in perspective...

So off to another party this weekend and then I think we might finally have a weekend in our own house - can't wait! Just in time for me starting my Christmas preparations......40 sleep to go :-)

Been rather busy..

I have been meaning to catch up on my blog for days now yet somehow the time keeps escaping me! Work has been fairly busy but I am coping much better with it now. In fact I would go as far as to say I am starting to enjoy it ;-) It is always hard moving to a new job and this was always going to be a challenge - more responsibility and a completely different cohort of patients. I am however really enjoying that challenge and I am learning a lot of new things. In particular I am starting to gain some confidence in dealing with more emergency type situations, something I missed out on earlier in my training due to not doing the on call work. I am trying to progress training wise and am currently applying to do the mental health act training, doing a couple of audits and somehow managed to agree to speak about 'why medications' at a patient support group held at work. As if I wasn't busy enough :-)

I had my second organ donor stall this week held at the medical school. It was quite interesting to see the differences between this and the one we held at the student union. Mostly we found that more of the students were already signed up (which I would hope for from medical students) and the ones that weren't seemed keen to do so. The people who tended not to be signed were members of staff! There was again some misinformation - about being too old to donate and about not being able to due to other medical conditions. There is no upper age to donation (the oldest person to donate their corneas being over 90!) and most medical conditions don't prevent donation - and anyway it is better to sign up and let the doctors decide if your organs are good enough! Lucie helped me out again and it was quite strange as we bumped into a few members of staff who were around when we went to uni and I think they were quite pleased to see some former students back doing something useful :-) We also had some help from a first year medical student who has followed the work of Live Life Then Give Life due to knowing someone with CF. It was great having the extra help as at some points we were all dashing off to catch different groups passing. On the topic of organ donation some of you may have noticed the new TV advert (which incidentally features someone with CF) - this is a new hard hitting multi media campaign launched by NHSBT which hopes to bridge the gap between those who support donation in principle but have not signed the register. You can see the advert here - would be interested to hear what people think of it.

Last weekend we were at a 40th birthday party and I also started my Christmas shopping - seriously. The countdown will start quite soon :-) This weekend is the auction mum is holding in aid of The Butterfly Trust so hopefully it will be a huge success. I have been making more cards this week to sell and she has already sold all the butterfly charms I made - so that's a good start to the funds. It's a small but much needed charity providing support to people with CF in Scotland - you can read more on their website about the various services on offer. Fingers crossed for a great night .... and also that I win the raffle featuring Watson the Hawick cashmere teddy bear :-)

Gold Star

I was at transplant clinic yesterday and got an all round great report. Blood pressure was fine, chest x-ray clear and lung function up to 104% (fev 2.94l) which is 1% higher than last time. They call it "stable" - I call it an improvement :-) Everything else was looking ok - kidney function has been stable and I am now down to the maintenance steroid dose and it doesn't seem to have rocked the boat at all. I need to phone on Wednesday to check this weeks blood tests and drug levels but I am sure they will be all as before. I completely confused the lung function lady by putting down my maiden name on the arrival sheet and then responding to that when called only to then looked confused when she couldn't find any case notes for me! We worked it out in the end but no idea why I did that - I do use it at work so perhaps being in a hospital I just thought I was at work ;-)

I have to go back in 3 months which is not bad. I was hoping for 6 months but it was a different consultant I saw this time so I didn't want to argue it - and to be honest I would rather be kept a closer eye on especially when they are still adjusting medications at this stage.

We has a busy weekend with a wedding reception on Saturday night in Hawick. We headed down on Friday to stay with Andrew's mum and dad so at least got a wee catch up. Saturday was quiet during the day and we took Seb a long walk in the autumn leaves which he loves. The wedding reception was nice although we didn't make it a late night as I was heading to Newcastle the next day. On Sunday morning we managed to catch up with Andrews good friend who has been away travelling for 18 months and just arrived home last week, so that was really nice.

At the wedding

Seb was pretty confused my everything - arriving in Hawick but not being left by us, then mum arriving on Sunday and taking me away and then Andrew taking him home again. He is getting a lot better though and starting to take all this moving about and swapping and handing over in his stride. I think as long as one of his 'pack' his around then he is ok! I did get a lovely welcome yesterday which I was not expecting so he is definitely growing up.....maybe ;-)

Seb loving all the leaves!

Me and my wee boy!