I am Alive!

As predicted in my blog the last 2 weeks have been super busy and this week has so far continued on a similar thread. I had a conference on Bipolar disorder a couple of weeks ago, which was really interesting although took up my days off - need to try and get some time back.  Then last week I had a 2 day course on suicide prevention which actually wasn't very helpful because it was covering things I already do in every day practice.  It has been rolled out as an initiative to meet government targets of reducing suicide rates by 20%.  It is a great target and we should work towards this - but the course wasn't really aimed at people working on the front line with mental health.  Anyway, I did attend for the full course and got my lovely certificate and I wont say any more on the matter!

The last weekend was rather hectic as it was Johns (my father in law) 60th birthday party.  There was a bit of a Beatles theme going on with an amazing Beatles cake (made by mums cousin's daughter - see her website) and myself and Andrew had made The Beatles themed invites with John's head photo shopped on the Abbey Road album cover.  We wanted to do a comedy sized head but he wouldn't let us ;-)   He also had CD coasters with The Beatles album covers (although people would be sadly disappointed if they took them home thinking they actually had The Beatles music on them haha).    The party was a big success and everyone had a great night.  I danced away, despite stupidly high heels, and had a fab time.  John of course had an even better time :-)

Birthday boy speech - with banner looking like a giant arrow pointing him out!

It was a 1am finish so we were pretty tired the next day, especially after I didn't sleep too well.  But then I got a text from my friend offering myself and Andrew spare Paul McCartney tickets for the Sunday night at Hampden!!  I couldn't really turn down such an offer so we headed back home asap (not so subtledly hurrying up poor Andrews gran as we were giving her a lift home) got organised and managed to work out a train route to avoid trying to park.  The train was mobbed and some guy wearing a waterproof jacket (it was about 21c!) was completely stuck to my back as we stood just beside the doors - I had to literally peel myself off - euggggh!  Anyway, the concert was fantastic and a great experience.  He played for over 2.5 hours solid and covered all his most popular work, including a lot of earlier Beatles songs that he had written.  Given what I said above about John's love of The Beatles we did feel a bit guilty, especially in his 60th birthday year.  Guilty enough to send some picture texts telling him how truly awful it was ;-)

This week was off to a bad start with what I think was food poisoning on Monday.  I thought I was dying!!  I had been fine all Sunday but about an hour after going to bed I woke up absolutely freezing cold and shaking violently and couldn't stop.  I knew I had a fever but couldn't move to get paracetamol so instead took the sensible decision of crying quietly to myself (and then gradually getting louder) until Andrew woke up.  I don't know why I didn't just wake him - this didn't seem to occur to me at the time.  My temp was nearly 39 which is really high for me (even in my pre transplant days) so I was quite worried.  I was telling Andrew to look for a rash in case I had meningitis (I am a complete drama queen) but then was shouting at him for pulling back the covers because I was so cold.  I am a nightmare ;-)  Clearly I did not have meningitis but did feel lousy for the next 24 hours with bit of dodgy stomach and ongoing temperature, but then equally as quickly as it started, it then stopped and I woke up on Tuesday feeling fine!!  Just as well because I had an 8.30am appointment with the diabetic nurse..sigh. 

I have since been feeling fine other than being more tired this week.  The appointment with diabetic nurse went ok and she thought my sugars weren't too bad.  We are having another joint appointment with the dietician tomorrow to work out my insulin to carbohydrate ratio.  Fun fun.  She did give me another two blood monitors though because my one was being dodgy, and then I phoned to report the dodgy one to the company and they are sending me another two as well!  I suppose I could have told them I had extra but thought I could maybe leave one at work and one in the car.

So this weekend I need to finish making my uncles birthday invites and also make some power point slides for audit presentations next week.  And maybe get some sunshine too :-)

Where did the sun go?

I was just starting to enjoy all the nice sunshine when it disappeared again!  Saturday was a lovely day and we were at my friends fundraising BBQ.  Lee and Ali are taking part in the Caledonian challenge this year which involves walking 54 miles in 24 hours with hills amounting to having climbed Ben Nevis twice.  I am tired even thinking about it.   The group is called Gin'll Fix It  - although I am not sure gin will be enough after that kind of challenge.  The money raised is for the Scottish Community Foundation which funds community groups and initiatives throughout Scotland - a lesser known but very important charity.   The BBQ was a big success and the sunny weather certainly added to the day :-)

I have been steadily working away on the CF booklet and have finished three chapters now and Emily is also working on a couple at the moment.  There is still a lot to cover although I have tackled some of the larger topics first and I certainly am much quicker than last time as I more used to the publishing programme and have learnt from the many mistakes I made!  I have spent a lot of time researching topics but my CF team have also been very helpful in proof reading and contributing to the booklet - making sure I am not away on some tangent ;-)

Work has been busy and I really do need to look at my ever expanding case load and see if I can discharge anyone.  I see two new people a week and often some crisis patients - but I don't discharge 2 people per week so it keeps growing and growing!!  It can be difficult because most of my patients have chronic illness but it can be argued that they don't all need followed up and instead could be referred if further problems develop.  It's difficult to strike the balance.  I have also been doing an audit at work on rates of non-attendance for first appointments which are somewhere between 30-50% each month!  That is a lot of wasted hours on our behalf and only serves to lengthen the waiting list due to rebooking people who miss appointments.   There are many reasons people don't attend but most commonly it is non engagement with the idea of coming to clinic - eg. the GP has suggested it but the patient really wasn't that keen.   An opt in system where the patient is invited to phone and book an appointment can help with this problem and is something I think we could consider.  We have audit presentations next month so I will see what the other resource centres are doing and what experiences they have with this system.  Maybe I should just start running the whole show ;-)

The next two weeks are really busy because I have a conference this thurs/frid and then training the following thurs/frid so my days off have disappeared.  I am off today however and although I needed to visit the hospital for some routine bloods this morning, I am now heading off to meet my friend for lunch - it's a tough life indeed :-)  I will leave you with some pics when I have been out with Seb recently...

There is quite a drop down to the river from this bridge - Seb likes to jump onto the bridge and peer over...

Action shot:  Seb running back after having a wee drink in the river!

Lovely woodland - only 5 minutes from my house..

Seb being asked to sit and wait while a cyclist passes - he is rather intense!

At the country park at 9.30 am on a Saturday ..... I think I might be solar powered :-)

Perfect Patient

I had a glowing report at transplant clinic so now have a 6 month reprieve until my next visit - can't believe it will be nearly Christmas when I go back!  My oxygen levels were 100%,  blood pressure spot on and lung function was exactly the same as last time at 107% (2.99L).    For some reason my lung function is always lower at CF clinic  - probably just a different machine and also at transplant clinic the lady turns the monitor round so I can see the graph as I blow which I think helps me do even better.   It does however make me quite anxious as I am never sure if there has been a drop or if it's just the machine - I hadn't realised how anxious I was until after the lung function tests were over!  When I went into see the Prof he had a visiting surgeon from Barcelona with him and he said they had just been sitting admiring my chest x-ray.  It's quite sad when I take that as a huge compliment haha.   I also asked about pain meds for the joints and there are some anti-inflammatory I might be able to use if it gets really bad but I would need my kidney function monitored at the same time.  I am just going to stick with the regime I use for my sinuses but good to know I have other options as they are being rather troublesome at the moment.  

Anyway, overall I couldn't have asked for a better report so am more than happy and continue to be amazed by this wonderful gift.  I also managed to pop up and see Victoria on the transplant ward and she was looking great!  She is progressing really well and is now moving to the flats so will hopefully be heading home soon.  Great to hear another success story and it does illustrate the need for more donors and the dramatic change it can make to someone's life.

The Adventures of Seb

I am heading down to Newcastle tonight for clinic tomorrow morning, so thought I should do a quick update before I go.  I am hoping for good news and in light of the fact I got on well at my CF annual review last week, I don't anticipate any problems.   I got a gold star for walking further in the 6 minute walk test this year and my chest sounded A1.  I am going for a bone scan to check the osteoporosis situation as I have not had one for several years, and I am also meeting up with the diabetic nurse and dietician next month to try and work out a more accurate insulin to carbohydrate ratio as I am still having quite a few hypos (low sugars).  My joints have also been playing up this week and are pretty sore but I know it will just settle down on its own again. Otherwise everything was fab :-)

This week has been eventful for little Seb so thought I would share some stories.   It all started last weekend when I decided once and for all to stop him barking in the garden.  Now I don't mean stopping him having a wee woof now and again - I mean stopping him going beserk and barking his head off for no apparent reason.  The dog trainers suggested a super soaker to spray him when he barks - we used the same method of spraying him with water when he barked like a lunatic at dog training and it was very effective.  I don't have a super soaker and with a 90ft stretch of garden it wouldn't reach him anyway.   But I do have a hose.  So last weekend I was out in the garden in my pyjamas at 8am spraying Seb with the hose every time he barked.  He very quickly got the message and for the next couple of days there was blissful silence.  However he was clearly not happy with this power struggle so has just decided to be naughty in other ways to get his own back ;-)  It started with him refusing to come in one evening which ended up with me and Andrew chasing him around the garden at 11pm until we trapped him behind the greenhouse!   We then realised that the next door neighbour was in his garden and could see us running around like eejits (me in my pyjamas again).  Unfortunately he was also out the following morning when I was out in the garden again with the hose - this time fully dressed for work but with my dressing gown on top as it was quite chilly.  Andrew did point out when I came back in that it looked as if I was just wearing a dressing gown with black high heels.  Oops.

Things calmed down a little until we went to visit my friends Lee and Ali for dinner this week.   They have a big garden down a private road so I was confident that Seb could run around off lead.  This was fine until he decided he was very interested in the next door neighbours garden and pretended not to hear me calling as he darted up their driveway.  I had to go after him and was slightly embarrassed to find the neighbour was standing outside with some guests who were just leaving.  In a bid to escape me Seb even tried to get into the car with the people leaving!!  I caught him and came back indoors - but the naughtiness did not end there.  Over the course of the evening he had jumped on the kitchen table twice, stealing a biscuit the first time, and also tried to climb into the bath, for reasons unknown to myself.   It is like having a small child at times.

He did also have an unfortunate incident of falling down an embankment this week.  I shouldn't laugh but it was quite amusing - he was there one second, then he was gone!  He had tried to climb down this almost vertical embankment to get down to the river but had obviously slipped and I could hear him scrabbling around - he is like a tiny mountain goat and got back up no problems but must have pulled a muscle because he has been slightly hobbling since.  I decided however that if he could jump on the kitchen table and run off at high speed then there wasn't that much wrong with him!

I have also been working hard on the CF and Body Image booklet and have completed the first couple of chapters, which were fairly involved.  I think it is looking good so far and would aim to get it all written up by the end of the summer - at which point we need to see if the drug company will still sponsor it (looks promising though).

Well I am going to go and enjoy the sunshine today and will report back once I have some Newcastle news.

Hurrah for sunshine!!

What lovely weather we had over the weekend and it makes such a difference to how you feel :-) I had a quiet Saturday spent sitting in the garden sifting through a box of old letters and keepsakes which I had left at mum and dads (and they are redecorating my old room!) It was lovely looking back at different parts of my life - letters from pen pals, cards from mum and dad sent to me during difficult times at university, funny letters from my best friend and lot's of cards and letters from Frances Ann, most of which are hilarious. I also had a few diaries written about specific experiences - one of these being the week I spent shadowing my paediatric consultant as a form of work experience needed to apply for medicine. It was interesting looking back at what I had written all those years ago. There were lots of detailed accounts of people we had seen and their medical issues which fascinated me at the time. However there was also a lot of reflection on how the patients were feeling, how their life was affected and how I felt about medicine. I was worried that I would not be able to physically cope but that I thought it was better to try and fail than to never try at all. I think that has been the ethos of my life and it is such a simple concept that I hope to continue to live by! I felt exhausted by the end of the day with all the emotions that memories bring to the fore. It is difficult looking back at letters from Frances Ann but they do also bring much joy. There was one particular card that simply said 'you are my best friend' and this simple phrase speaks volumes.

On a lighter note, we joined a few friends on Sunday to visit our friend who had a baby girl, Aiyla, a few weeks ago. She is a wee cutey and was so well behaved all afternoon allowing us to all have a wee cuddle without any fuss. It was also my cousins wee boy, Lewis' 3rd birthday so we managed to catch up with them briefly. Lewis is hilarious and has a completely wild imagination - he was telling me about giant monsters he had fought off and explained this all with a straight face. His mum was telling me that at a children's group they were reading a story about alligators and Lewis announced loudly "an alligator bit my head off once". I predict he is going to be a handful ;-)

I have had some fantastic news about my job. The clinical director has fought my corner with enthusiasm and I have been given a permanent contract - so my job is safe!! My contract had been due to finish in August and I was very concerned it would not be renewed due to the budget cuts. I still don't know whether I would like to move back to old age psychiatry in the long term but at least for now I can relax.

We have applied for our building warrant and have made some progress in finding a builder. We had a recommendation and viewed some extensions he had recently done - they were really similar to our plans and the customers couldn't have been more complementary. We have not seen the quote yet though and obviously we still need some other quotes to compare, but our first impressions were extremely positive. It's all rather exciting :-)

On a final note, my friend Victoria is doing very well following her transplant. I think pain is still a big issue but she is otherwise progressing well and hopefully will continue to do so!

Just a quick blog to say everything is fine...just been too busy to blog! Spent all last weekend in the garden getting things tidied up for Summer (if that ever comes!) Planted all my flower seeds in the greenhouse but it hasn't been remotely warm enough for anything to start growing yet but hopefully it will start to warm up soon (I have still been wearing gloves walking the dog!)

The other big news is that we have planning permission for an extension at the back of house, which will be for a new kitchen and dining area. We now need to get a building warrant...and then find a trustworthy builder. It is all very exciting and we have been looking at kitchens and spent all afternoon trying to compare prices of various ones we quite like. I am not looking forward to the building work but can't wait until we have this extra space :-)

This week has been bitter-sweet in the world of CF. A girl from my hospital, Nicola, sadly lost her battle with CF this week. She was only 27 and although she has been unwell for quite a while it was still very unexpected. Then this morning I woke to hear the good news that another CF friend from my unit, Victoria, got her transplant this morning - after 8 false alarms! She is already starting to wake up and everything is going smoothly so far. Please keep both of them, and their families, in your thoughts please - not to mention the donor who made the wonderful decision to give the gift of life.

I am so glad it's the weekend - I don't think I have quite caught up with lost sleep from last weekend yet!  It's been a fairly busy week as I am still taking a PBL group on my two days off at the moment.  I am enjoying it though and it gives me a nice contrast to psychiatry work.  I just got my students feedback from the last group I facilitated and I was really pleased with the comments and ratings.  Everything is rated on a 1-5 scale and they all gave me an overall 5 for facilitating and some really nice comments.  The only negative comment was that as a group they tended to rely on me too much, so I have taken that on board for this group and am trying to sit back more  - although I suspect they will then say that I don't help them enough! 

Seb seems to have forgiven me now for leaving him again last weekend.   He apparently spent most of the weekend lying in the hall looking at the front door.  Poor wee man!  To be fair he should appreciate me though - I mean, I saved his life last week.  I had to do the Heimlich manoeuvre on him.  Seriously.  He was getting wired into his dinner at high speed and I was in the kitchen with music playing.  I then became aware of this spluttering noise and realised he was choking on his dinner (which is dry dog food).   I gave him a couple of sharp slaps between the shoulder blades first but he continued to choke, so I turned him upside down and pressed sharply upwards on his stomach towards his ribcage - with that a big clump of dried dog food shot out his mouth!!   He looked a bit dazed for a moment but then went straight back to his dinner and started munching away again  - not even a thank you for saving his life!   I had read that you could do the Heimlich on dogs (was researching this after he nearly choked on a pigs ear once) but didn't really think it would work.   I think Seb is more like a cat with nine lives..

This weekend we can hopefully plant some vegetables in the garden.  Andrew spent all last weekend clearing up in the garden and digging the beds but he didn't plant anything because there was a frost forecast.   I can't believe it is May and we still had frost!  Today has been really sunny but it was still only 11c!  All the plants in the garden are lagging behind this year and quite a few don't seem to have survived the long winter so I really hope it starts getting warmer soon.  Having a taste of sunshine in Florida has made me even more impatient for summer coming round :-)

Hen Weekend

I have been on a hen weekend in the Lake District which was rather action packed - it was great fun although I am pretty shattered now.   There were 15 of us in a (large!) cottage near Eskdale and most people headed down after work on Friday.   We all had instructions the owner had sent and I had printed some maps and had my sat nav.  I had looked at the owners instructions and didn't think they were very good so didn't pay much attention to these - I was correct here as absolutely everyone got lost trying to follow them!  However I foolishly followed my sat nav instead.   Never trust a sat nav.  Ever.  The owner has said if you were coming from the south then the sat nav would try to take you over Hardknott and Wrynose Pass which should be avoided at all costs.  I wasn't too worried about this since I was coming from the North.   Well, I was coming from the North until the sat nav took my off the M6 much later than my road map suggested and then technically I was then coming from the south, but I didn't know this at the time.   I was driving myself and my friend Claire and we hadn't been able to leave Glasgow until 6pm so, factoring in a small break for food, we expected to arrive about 9.30pm.   We were making fairly good time until the dreaded moment when we realised we were about to cross one of the most notorious roads in the Lake District.   This route is apparently well known by motor cyclists and motoring clubs as a challenge activity and Hardknott pass is actually the steepest road in Britain, with gradients of 30% most of the way.  I have no doubt this is true because the majority had to be tackled in 1st gear!     It is basically a single track road with a series of hairpin bends and steep inclines and declines, with the added excitement of sheep standing in the middle of the road at unexpected moments.    The major problem was that it was now about 9pm, pitch black and as we climbed higher the mist also began to descend and even with full beams I could barely see 20 yards ahead.    At first we were amused and nervously laughed at our misfortune but as we progressed and the road got steeper and windier it really wasn't so funny.  The moment we both realised we also had no mobile reception was also not so funny.   For most of the way we were the only car on the road until about half way when suddenly headlights appeared behind us.  At first it was annoying me because they were driving very close and I wanted to try and let them pass - but then I got the notion that it could be some weirdo psychopath in the car behind (we had passed a stationary car parked off the road only 5 minutes before) and I didn't want to stop the car in case we were then trapped!  There was no way of turning round on this road anyway so we had no choice but to keep going.   Eventually I was forced to stop on a hairpin bend because I couldn't make it round in one go (close shave with a stone dyke wall) and we then saw into the car and there was a young woman and child in the back.   So we decided it probably wasn't a weirdo stalker (or the weirdo stalker already had kidnapped people so no room for us!) and we felt a bit better :-)  It took over an hour to get across this road and by the end we were both traumatised to say the least.   I had suggested we start saying some Hail Mary's about half way round so you get the idea of how stressed we were!   We had a bit of trouble finding the actual cottage but managed to ask someone and finally arrived just before 11pm by which time some of the other girls were out with torches looking for us.  Another few girls arrived at the same time as us having left Edinburgh at 5pm and getting lost finding the cottage, so we weren't the only stragglers.  No one else had gone over the same road as us though - typical!

The yellow line is the Hardknott pass road marked (stole pic from cycling website)

Another view

I noticed there are lots of video clips on You-Tube of people driving this road - this clip is what it was like!  Although sadly I wasn't driving a porsche....

The next morning we had to leave really early to drive to an activity centre and I did point out that we should avoid the above roads at all costs.  I wasn't driving that day (still in shock) and another car was leading.  You can guess what happened next...!    Yes, we ended up going over the same road although with the added benefit of daylight this time.   There were a few events on route where one car kept stalling on the ascent and was rolling back towards our car and we also did struggle with some of the slopes.  By the time we arrived at the activity centre everyone was in a state of shock and felt that we had had quite enough activity for one day :-)  The other girls couldn't believe we had driven that road at night, having thought we were just exaggerating when trying to explain it the night before!  I must admit it wasn't quite as bad during the day but it's certainly not a relaxing country drive!

Once at the activity centre we did quad biking and archery.  I was a bit nervous about the quad biking but it was actually really good fun.  You only had to worry about the accelerator on one handlebar and the brake on the other.   I did notice that everyone else had a wire connecting the ignition key to their wrist so that if you fall off you pull out the ignition key.  I didn't have one of these and pointed this out, but the guy just shrugged and said 'it will be fine'.   Oh well, better not fall off then!   We went round a small track first to practice then we had to follow him on a rubble path and then over fields going up and down hills.   We were out for about an hour and it was great fun - I would probably try that again.   I wasn't so keen on the archery, mainly because I was really rubbish!  I don't have the upper body strength to pull back the bow properly but it was still enjoyable.   We then headed back and relaxed for a while before dinner, which one of the girls kindly prepared.   We made cocktails and played some games where the hen (Gillian) had to guess which answers her fiance had given to set questions.  That was rather amusing!  We played on singstar for the rest of the evening.

On Sunday we did our own things -some people went for a walk but myself, Claire and Stephanie drove to Ambleside for the afternoon which was really nice.  We had a more relaxed evening and played some games and used up all the leftover food and made more cocktails :-)   Yesterday morning we headed home fairly early and made sure to avoid the dreaded Knotts pass so the drive home was somewhat less eventful!

 I am pretty shattered now from three late nights and lots of driving  but it was lovely to be away from everything for a while (I didn't even have any mobile reception).   It was back to reality this morning with PBL at 9am so I had to read up on the work last night and still felt a bit out of it this morning.  Hopefully the rest of the week will not be too hectic and I can just chill out this coming weekend.

Would like to leave you with a link to check out Corey's new fantasy mini series which has just been published called Magic of Myths.    When he becomes really famous Corey is going to give me lots of money and buy me a house (he doesn't know this yet though) so I though I should help publicise his work ;-)

2nd Transplant Anniversary

I am glad to be back home and am starting to recover from the jet lag now.  Yesterday I was a complete zombie and spent most of the day in a haze of confusion.  I somehow managed to order Tesco online and was relieved when it arrived today and I had in fact ordered some sensible items ;-)   Andrews case had gone missing but it turned up yesterday so I had a joyful amount of washing to do after that.  We have also been on the phone to Air France again but not much further forward really.   Apparently under EU law the airlines need to provide help with accommodation and food but Air France are refusing to do this - they are quoting a get out clause based on expectional circumstances, however this only applies to compensations claims and not to basic help with food and shelter.  They are not helping over the phone so I have completed an online form to customer services but am unlikely to get a response.  We do however also need a letter about the delay in order to try and claim travel insurance for 'travel delay' so I will need to keep chasing this up.  My policy will only pay out a maximum of £100 but it would be better than nothing.  I have also been organising all my medical receipts but noticed that there is an excess of £100 on medical claims so I am one step forward and two steps back!   It is a tiresome process but I think we need to make an attempt to recoup some of our losses.  The word is that NHS are making staff take the time off as annual leave or unpaid leave - that would wipe out my annual leave until August, so probably better taking unpaid leave or asking if I can make time up.  I will find out more when I go back on Monday!

Seb is happy to see us home, although is not too keen to admit it ;-)  When we picked him up from Nan and Bob's he looked a bit confused at first but once I picked him up he did snuggle on my knee - although refused point blank to make any eye contact!  Once back home he was straight outside to bark his head off and tell everyone he was back in town.   He has been keeping a close eye on me since!


Tomorrow (25th) is the 2nd anniversary of my transplant - so hard to believe that two years have passed already.   So much has happened that it becomes easy to lose sight of quite how far I have come.  Health wise my lungs seem to go from strength to strength and have allowed me to experience and achieve more than I could have ever hoped for.  I have been back in work for over a year and now hold much more responsibility than I did pre transplant but feel able to take on this challenge.  I am also enjoying working at the university and am thankful I have the energy to fit this in.  I enjoyed lots of holidays last year and two years ago the idea of jetting off to Florida was a mere dream - I can hardly believe it came true! 

As always please take a moment to remember my donor at this time.  My lovely azalea is ready to bloom and somehow managed to survive the unusually harsh winter.  I am always grateful for her generosity and hope she is proud of all I have achieved since the transplant.  I have no idea what my 3rd year will hold but I am sure there will be even more opportunities, experiences and fun times ahead and I will continue to strive to make the very best of this new life :-)

Jac has landed.......

we have just arrived back at mum and dads after landing in Edinburgh at 11am.    All back safely (minus half the luggage) and so glad to be back in Scotland.  Will blog more later but just to let everyone know we are safe and sound :-)

Optimistic?

Just a quick update.  It does look like flights to Amsterdam are going at the moment so we are hopeful of getting at least that far by Thursday morning.   Tomorrows Amsterdam to Edinburgh is cancelled but lets just hope the wind changes for Thursday, otherwise we might be having another holiday instalment in Amsterdam.   We might have to buy a jumper or two in that case ;-)

Mum prays for a miracle (and felt compelled to look the part...)

I got my medication this afternoon so at least have that should there be any further delays and then we chilled out beside the pool this afternoon as the weather was lovely (although it is pouring again now!)  We have loved Miami Beach though and the hotel has been fab - they told us tonight that "if there is any problem at the airport you know where to come - this is your home from home!"   We also had our complementary 'volcano Martinis' this evenings so maybe will get some sleep tonight!  Life really is tough in Miami beach...

Mum and Anne are forced to drink volcano martinis :-)

I am now off to pack (again!) and my next update will hopefully be from somewhere in Europe - preferably home!

Hope

Apparently Amsterdam is currently open to international flights so we are keeping everything crossed this remains the case for our flight tomorrow evening.   The current plan is that we fly to Detroit at 1pm USA time, departing for Amsterdam at 7.30pm USA time which means flying overnight and then hopefully leaving Amsterdam for Edinburgh mid morning on Thursday.   I suppose the worry is that we get stuck at another leg of the journey but even if we get to Europe it would be a step forward.   The big concern at the moment was the news that the volcano continues to erupt and another large ash cloud is forming - amusingly mum said this morning "so is our main worry this other wee puffy thing?"    Yes Mum, it's all down to that damned wee puffy thing ;-)

We had a bit of stress with medication again yesterday when I went to collect the anti rejections (tacrolimus) we had ordered at the pharmacy and it hadn't arrived!  I do have enough until I get home but we are worried we get stuck somewhere on route and then I would run out.   However we called this morning and it has now arrived so going to collect that shortly.  It is at times like this I really appreciate the NHS!!!

We also managed to get through to the British Consulate yesterday to explain our predicament and concerns about health.  They are actually trying to document how many UK citizens are in America at the moment so all six of us are now registered on their database.   They have noted my health conditions and given us a local number should we run into any more trouble.   They are not able to liaise directly with airlines at the moment so have advised us to head to the airport tomorrow and take it from there.   We tried all yesterday to call Air France with no luck but managed to get through to a London number this morning - they couldn't really say anything other than the fact the flight is currently still planned to go ahead.  Our insurance companies are saying that the Airlines are responsible for helping with accommodation costs but Air France are saying the volcano is not their fault so will not help!  I doubt very much we will get anything from anyone but will keep chasing this.

All the hotel staff know us now, so here is Armando with mum and Anne :-)

Thankfully the weather has brightened up again now and the sun is shining for our (hopefully) last day.  Yesterday was spent mostly chasing meds again but after I collect those today we can chill at the pool this afternoon and try to relax a little.   No one has been sleeping very well but we are still staying in good humour.  Last night I was saying to Andrew "I have this horrible churning feeling in the pit of my stomach, I think it is just stress" before adding on "...or maybe it's just wind!"    We fell about laughing for a while and that made me feel a bit better :-)   Humour has got me through a lot of bad times in the past and it is definitely the best anti-stress medicine around.

If there are any issues with the flight tomorrow we will have to re evaluate the situation and perhaps try and find another villa to keep costs down.  A doctor on a forum I use gave us an amazing offer - to come and stay at his house in the Cayman island until the drama passes!!  Now I have always fancied the Cayman islands...

I will try and post again tomorrow but we are heading to the airport early so may not be able to update.  Keep your eyes peeled for a Detroit to Amsterdam flight leaving tomorrow night and pray that we are on it!!

Brits abroad?!

Raining on our parade

So much for Miami sunshine- it's been raining for 2 days now!!  We decided yesterday we couldn't sit in our hotel room all day so decided to head out and get some culture at the Art and Design museum.   It was at least dry there ;-)   It was still pouring in the afternoon so we headed for the cinema and watched Kick Ass which was actually very funny and at least was a distraction for a wee while.  The taxi ride to the cinema was rather odd  - we hailed a 6 seater taxi only to find that he opened the boot and John and Dad had to sit in wee seats in the boot of the car haha!!

What happened to the sun?

Stow aways in the car boot...

We are still very unsure about what is happening on Wednesday - we know that tomorrows flight to Amsterdam has been cancelled so not sure what the prospects are of flying by Wednesday.  We have been trying to call Air France all morning  - Andrew has made 50 calls so far and it only rings 10% of the time and after that we gets 40 seconds in the queue before it cuts off!   I have emailed a couple of times but they aren't responding to that either.    The worry is that if we don't fly on Wednesday we can't get through to rebook.  The other big worry is that the Amsterdam flight is not cancelled until we are en route to Detroit so we should maybe start working out what to do if we get stranded there!    We are keeping up with BBC news and have heard that Royal Navy ships have departed for Spain with the idea that Madrid could become a central hub for UK nationals trying to get home.   Now that would be an experience and a half!   At the moment I would be happy to sail home in a rubber dinghy ;-)

It is still very unclear if we have any insurance for hotel costs, however even if we can claim my policy only covers up to a maximum of £100 per person total!  Better than a poke in the eye I suppose.  I have emailed them again to try and confirm if we can claim and what evidence I will require.   The medication would be covered for a much larger sum if I can claim so am keeping receipts for everything.   I was quite concerned that the doctor said my insulin type doesn't exist in USA but have since found out via UK doctors that it does but just under a different name - so at least I now know what to ask for if I run out.

We are trying to pay most things on credit card now and spin out any dollars we have left - luckily I didn't spend many of my dollars as everyone kept buying me birthday presents on credit cards!!  We have found a great diner across from the hotel which serves fantastic value food which is really nice and massive portions.   We are putting everything on Johns credit card - it is so kind of him to pay for everything ;-)

I am not sure what will happen with work when we get back - I hope some of the time can be taken as special leave as I hardly have any holidays left this year anyway.   So far they have cancelled all my clinics for this week and hopefully my colleagues are not having to pick up too much of my slack.   I am also due to facilitate a PBL group at the university from next Tuesday but hopefully will be home by then - they must have a lot of facilitators stranded as I have had multiple emails looking for emergency cover.  I think a lot of students are also stuck after going away for the Easter holidays.  It is hard to imagine how far the chaos extends and you can start to see how everything has so many knock on effects.

I am missing wee Seb very much although I know he is in good hands with Nan and Bob.   I hope he hasn't forgotten who I am by the time we get home.   I could do with one of his wee fluffy hugs just now :-)

Anyway, everyone is still in good spirits, albeit quite stressed and not sleeping very well!  We are just staying put today and hoping the weather turns again so we can get out and about again.  Will keep you posted on any updates.

Boredom sets in...!

Back to Miami Beach

We moved back to the hotel at Miami Beach today so at least we are no longer in an industrial estate!  The staff at the hotel were lovely and although our rooms aren't like the ones we originally had (apart from mum and dad who always seem to be getting upgrade!) they have said we can have breakfast included for no extra charge which is really helpful. However  I am not sure if it was amusing or just plain mean that they are offering a free 'volcano cocktail' today!

The CF nurse never called back yesterday so I went to a pharmacy for advice and they gave me a list of places to try.  She suggested a primary care doctor first and we headed over there but they refused to even see someone they didn't have on record which wasn't very helpful.  I called my insurance company to check if their was a specific procedure and they advised I try and see a doctor but would have to pay upfront and then claim back on return - but they have noted that I called.  So today we tried an urgent medical centre with a walk in clinic and they were helpful as a lot of holiday makers are finding themselves in the same position.  I had a letter from my CF unit detailing my history and medication which was helpful, as was the fact the letter also said I was a medical doctor.   It was $150 to see the doctor and he gave me scripts for my anti rejection drugs, the antibiotic and my main painkiller  - he wrote them for 7 days but with a 'refill' which means I can pay for another 7 days supply if we are still here.   Of course if we are still here in another week I will run out of other medication that I really need, like my enzymes and insulin but will cross that bridge when we come to it,   I went directly to the pharmacy after seeing the doctor and the medications themselves have cost me over $300 so far, on top of the doctors fee ($200 of that being for 7 days of one anti rejection which they have had to order for me). There were a couple of mistakes on the scripts - the doctor had written 1g instead of 1mg for one drug and 4 tablets instead of 14 for another and bizarrely they took my word for it that this was wrong and dispensed what I said was correct!  I was glad at the time although found the whole experience very odd as in the UK an incorrect script would always need to be rewritten.  Some of my other medications are non essential and a couple I managed to buy over the counter so I am getting by at the moment and just really keeping everything crossed that the insurance will pay out on my return!

Although the medication search took up most of this afternoon we did spend the hour before hand watching the Gay Pride parade ;-)  It is a big Miami festival and they have a parade along Ocean Drive something along the lines of the Mardi Gras with lots of floats, people dressed up and handing out freebies.  It was really well done with people having a great laugh and a good atmosphere.  Mum ended up with several pairs of beads, a sun visor, two neckerchiefs and a water bottle.   I also managed to catch a beach ball which is now deflated and in my case ;-)   It was certainly an experience and I can safely say that anything goes on Miami Beach.

Tomorrow we will just chill out and maybe plan something for Monday.  Tuesday will definitely be spent checking up on flights and keeping everything crossed that things start moving in time for Wednesday.  It doesn't look good at the moment as the volcanic ash is spreading with no sign that the weather will change any time soon.   Just keep praying that the wind starts blowing in the right direction very soon....

Extended holiday?

We are booked on a flight home……on Wednesday not arriving home until Thursday!!  We couldn’t get through to Air France this morning but thankfully another passenger handed over their phone once they finally got through.  They were not booking people back onto flights automatically - you had to call and arrange this yourself and Wednesday was the earliest flight we could get and this is via Detroit and Amsterdam!  We did see if I could get on an earlier flight due to the fact I will run out of medications but they had no spaces at all.   The other family we were speaking to had been given other options by their travel agent but these were not until Tuesday and at a cost of £9000 for their family so needless to say they are just taking the same flight as us.  We have also tried to call Expedia who booked our flights but can’t get through at all.  We have no choice but to accept the Air France flights so need to settle ourselves until Wednesday!

I have enough anti rejections until Thursday as long as the flights do actually leave but have run out of Septrin (prophylactic antibiotic) and will run out of painkillers.  I could spin out the painkillers but I called my transplant centre and they want to me try and get some Septrin if possible.  I called the CF centre in Miami and a nurse is going to call back so really hoping they can help me out as not quite sure how to go about getting medications here and what it might cost.  My travel insurance company will automatically extend my cover until I get home at no extra cost so hoping meds will be covered under this but will just have to wait and see.  Will feel a bit better if I can get meds sorted and then perhaps we can try and think of this as an extended holiday!

We do need to move from this hotel though as we are essentially in the middle of an industrial estate and can’t walk anywhere (hired car went back yesterday).   We called the hotel we stayed with on arrival and gave a big sob story explaining that we loved the hotel so much but could only afford the rate we stayed at (which was an offer).   After speaking to the manager they called back and said they would offer the same rate for the next 4 nights, which will only work out as £45 per person more for the 4 nights than if we stayed at the Holiday Inn at Miami beach, which has rather mixed reviews.  I think this is the best option because it was a lovely hotel with a great location.  It’s all on credit card though – think we will all be officially broke by the time we get home!  I think the plan might be to eat as much as humanly possible for breakfast and perhaps swipe a pastry or two for later.  We also have the whistles mum bought for my birthday so another option would be a spot of busking…

Florida Part 4: Stranded

When I was planning for any emergency situations that might arise on holiday, a volcano erupting and disrupting all flights to and from Europe was not on my list!  We were due to fly from Miami to Edinburgh, via Paris, this evening but needless to say we are going nowhere anytime soon.  We checked Air France this morning and flights were still scheduled so we vacated the villa and drove the 4 hours down to Miami – only to arrive at the airport to find that our flight was cancelled.  There was just a piece of paper stuck to the check in barricade telling us the flight was cancelled but nothing else.  We asked at the Air France ticket desk if they had any idea what would happen now – a shrug of the shoulders and a ‘no flights today or tomorrow…maybe in 3 days’ and were given a number to call tomorrow.   Another passenger had been called by his travel agent who has said it would be Tuesday before he should expect to get a flight!   We had no choice but to check in to an airport hotel for the time being until we hear some news.   We are in a Holiday Inn express which is clean, comfortable but pretty basic – not a patch on the luxury villa we have been just left!   At least we have somewhere to stay and aren’t lying sleeping in the airport.   Anne has her laptop so we are getting access to internet news and updates but there is no signs yet of when flights will resume – apparently the volcano is still erupting and the ash is spreading across Europe.  I think one of the biggest issues will be the backlog of passengers and I am not sure how they prioritise getting people onto flights.  

mum and anne still smiling despite the saga..

We are still in good spirits at the moment although understandably rather worried about how and when we will get home.   I am just hoping that if flights can’t go into Paris then they will start trying to work out some contingency plan.  If we were in Europe we could at least get a train but it is a little bit scary being so far away!  My other big issue will be medication.  I always bring a week extra supply of my anti rejection drugs, insulin and digestive enzymes – none of which I can survive without.   However I only have a couple of days of my other drugs, although I could manage without these.  If we were really stranded for a while I will have to get a prescription from somewhere though and not sure if finding a CF centre would be the best plan – surely we can’t be stuck for over a week though?!  I have also emailed my insurance because my cover was for a single trip and I assume if I became unwell out with those we have somewhere to stay, we still have dollars left and it could be worse – it could have happened on the way out and we would have missed the whole holiday!

On a cheerier note we have enjoyed the last few days since my birthday at Magic Kingdom.   Monday was a chill out day and we headed out for a belated birthday dinner at a steak house…yum!  

Birthday dinner

Tuesday was a day at Epcot centre which was great fun.   We got there for the park opening and got fast passes and onto the main rides before the immense queues formed - and they were all really good!  In the afternoon we wandered around the other half of Epcot ‘World Showcase’ where they have all the countries represented where you wander along streets which look like Italy, Japan, China, Mexico etc.  I really enjoyed wandering and not rushing around like a normal theme park and I think we all had a great day.  

In the Fairy Garden at Epcot

Andrew in 'China' with his chinese symbol of the sheep :-)

Yesterday was mums birthday and another chill day (and sadly some packing too).  Oh and a last minute dash to the shops where we all managed to come back with a little something :-)    Despite the recent events we have all had a fantastic holiday from exploring the hip Miami Beach, the alligator infested swamplands, the vast malls, the wonders of space and of course the Disney magic.   Quite an eventful holiday and certainly one filled with many happy memories!

The Gang!

Florida Part 3: The Magic Kingdom

Friday was a chill out day and another BBQ  - it gives the men something to do at least ;-   We are enjoying the pool and jacuzzi and I must say the grown ups (I count myself and Andrew as the kids for this holiday) seem to be enjoying the pool toys more than us!  Mum has been trying to talk in a southern drawl for most of the holiday and has given us all new names - John-boy (John), Jim-Bob(dad), Mary-Anne (Anne), Jackie-Ann (me), Betty-Lou (mum) and then she got stuck with Andrew and just decided to call him Joey.  Very random.   The most amusing thing however is her attempt at an American accent because invariably it somehow starts to sound Welsh ....

Children playing in the pool (object was throwing balls at dad)

...and dad manages to head the ball  (told you they were bunch of kids....!)

Saturday was a trip to the outlets for some more shopping bargains.  I was actually very reserved (for once) but did make a couple of purchases - would be a wasted trip otherwise!  Andrew wasn't feeling well so stayed at the villa - which gave John a good excuse to not come shopping either under the pretence of looking after his wee laddie.   Poor Andrew has not been feeling well for a couple of days now, with a fever and feeling sick.  At first I thought he has a bit of heatstroke from going for a run in the heat but it actually looks more like some food poisoning from a Chinese take away we had.  Hopefully after another rest today he will be feeling a lot better for the last couple of days.   I don't think he minded missing the shopping (and I got him some treats to make up for it) but Disney yesterday was hard work, which was a great shame.  Just means we need to come back at some point so he can fully enjoy the Disney experience....!

John tending the BBQ

Yesterday was my birthday and I chose to spend it at the Magic Kingdom at Disney!!  I think this is entirely reasonable thing for any 31 year old to do :-)   For those who have not been to Disney before The Magic Kingdom is the park most people think of and is Disney kitsch at it's best.   I guess it is really aimed more for the children but we are all really big kids at heart and anyone can enjoy the place 'where dreams come true'!  We were there for the park opening and with military precision I marched everyone round some of the main attractions so we could miss the queues which form later in the day.   We therefore managed to walk onto Thunder Mountain (roller coaster),  The Haunted Mansion, Peter Pan and Wendy and It's a Small World which I remember from our first visit to Disney 23 years ago!!    These are not high tech rides but they do bring out the inner child.   We had an early lunch before taking a raft over to Tom Sawyers island to escape the crowds for a while, where I was able to climb into a tree house for children 12 and under - I think I got away with it.   We sent John and dad into the Hall of Presidents for a bit of history while the rest of us explored the Christmas shop - not being as high brow as the old men haha.   We also went on a riverboat for a relaxing ride down the river to rest our weary feet.   We were glad to have done some of the rides early as the queues started to reach 40 minute waits and we could happily gloat to ourselves..

In the tree house

Anne and Mum with their purchases

Andrew on Tom Sawyers Island

One of the high lights of my day was watching the little show they have at the fairly tale castle where some of the Disney characters come out and dance around and tell a wee story about dreams coming true.  Mum had presented the ladies with fairy wands that morning (along with daft sunglasses and coloured whistles!) because of my birthday, so I happily waved my little fairy wand at the show.  Yes, I know I am completely nuts but you really do have to just go with the magic :)   I think John did like his wee whistle though for attracting our attention when we wandered off...

Fairy tale castle

Waving my wand at the show

We had a wee wander through some of the shops and headed out of the park about 7pm - pretty good going for arriving at 9am.   I can hardly believe I am able to keep up that pace all day - even 23 years ago I couldn't have done that.  The original plan had been to catch the light parade where floats and carriages are all lit up but I don't think we could have lasted any longer and didn't want to drive home in the dark.  We decided to leave my birthday dinner until this evening when we would be more rested and enjoy it more, so got in a some pizza before all collapsing for the night.    I wont forget that birthday in a hurry though - it's not every birthday you get to spend at The Magic Kingdom and although so so cliché, the slogan of 'dreams can come true' is actually pretty close to the mark when you consider that a few years ago the idea of me even reaching my 31st birthday was a dream in itself.

Florida Part 2: Rockets, Gators and shop shop shopping!

So we settled into the villa last Saturday night and the next part of the holiday began.   It was rather different waking up in Florida for Easter Sunday having never been on holiday at Easter before.  Mum, dad and me went to Mass on Sunday morning and then we had a relaxing day at the pool and jacuzzi.  It's a  hard life.  We used the games room at night playing a few games of pool and air hockey.  Mum has discovered a new found enthusiasm for air hockey which involves much squealing, hysterical laughter and jumping around - she gets a little competitive ;-)  It isn't really much surprise she now has a sore back!  We also bought a little BBQ and had some steaks for our Easter dinner...yum.  We had bets going on who would be the first person to walk into the glass patio doors - dad was favourite - but sadly I managed to beat him....twice!  I have a massive bruise on my knee and a small Jac nose print on the glass as evidence of my stupidity.  I can't guarantee it wont happen again before the holiday is over!

Mum, me and dad on Easter Sunday

Andrew feeling rather stressed...

On Monday the Discovery shuttle mission launch was scheduled at 6.20am from Cape Canaveral - it was supposed to be launched last month but delayed due to weather conditions.  Viewing stations were all sold out but we decided to get up early and watch from the villa, which is about 60 miles away.  We watched the countdown on the NASA website then saw the brilliant orange glow soaring into the sky before it gradually faded to a twinkling light leaving a smoke trail in its wake.  The fact we could see that from 60 miles is amazing  - you can only imagine what that would be like close up!  The launch was a success and the astronauts apparently docked at the international space station on Wednesday.  

Shuttle Launch  (video to follow when I can upload it)

Being up and about so early we decided just to head out and went for an air boat ride on Lake Tohopekaliga, which was great fun!  They make no guarantee of seeing alligators, although there are estimated 3000 in the lake - fortunately we did manage to spot a small one hiding in the reeds.  The highlight however was seeing an Osprey hovering directly overhead, and of course the ride itself was quite invigorating!  We then visited a town called Celebration for lunch.  This was purpose built by Disney to reflect American living in the 1920's with clapboard houses and an old fashioned cinema - but it is a real town with people living and working there.  It was a lovely town, with some quaint interesting shops and a lovely lake front pier - it has a atmosphere of having stepped back in time into a more sedate era - actually it reminded me a bit of Wisteria Lane from Desperate Housewives and there was a street with this name.  We had another relaxing evening and another BBQ :-)

Wrestling an alligator at the air boat ride park ;-)

I found a wee fuzzy friend in Celebration town

Mum, Anne, John, me and Andrew in Celebration

Tuesday was the mall - much to John's disgust, although he did manage to buy more than Anne- something not right with that picture!  Of course, I had the most purchases but even better was the fact I didn't pay for anything!  It's my birthday this Sunday so I had dollars to spend from Anne and John and mum and dad - and they got a lot further on clothes here than at home.  I got two wee dresses for the two weddings we have this year, a really unusual bag from Ross' birthday money and mum got me a Fossil watch which I love!  It was a tiring day but rather successful :-)

Wednesday was a day of recovery at the pool, although I find it near impossible to sit still for more than 2 hours so myself and Andrew went for a wee walk around the immediate area - it is mostly just villas but there is a lake with a small jetty, so we wandered down there.  There was a man with his son fishing off the jetty and as we approached he called us over to see an alligator which has been attracted over by the fishing bait!  It was much bigger than the one we saw on the airboat - about 7-8ft long - and we had a great view as it swam around the jetty right beneath us.  It was great seeing it close up in it's natural environment.  No one believed us when we went back to the villa but we had the pictures to prove it!   John would like to go down and feed it some muffins -  Anne suggested he should probably just wade right in....

Yesterday was another busy day with a trip to Kennedy Space Centre.  It was a very early start with a stop for an all day American breakfast - pancakes and syrup - very nice but could never eat that every day.  At the space centre we took the bus tour which took us to a viewing platform, where we could see the various launch sites, then a centre about the Apollo missions and the Saturn V rockets - they has a massive replica of the rocket which was very impressive.   We also saw what it would look like inside the shuttles - I spent a long time looking at the toilet area and still can't quite work that one out....!

I think that astronaut in the background looks rather sinister....

They also had a launch simulator where you get strapped into a shuttle and they simulate what take off would be like - it was really good and you got the feeling of being pushed right back by G forces.  I was sitting thinking that I could never have gone on something like that pre transplant as my lungs would not have coped and I would have probably felt really breathless - where as I could do everything without a second thought!

Full size replica of the Explorer space shuttle

Astronaut John and his crew..

We were shattered last night after a long day so today is going to just be a chill out day.  The two Disney days have still to come - we were waiting on crowds do reduce a little as this week is American Easter holidays.  Disney here we come!