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!

Florida Part 1: Miami


Well here I am, blogging from sunny Florida!  We are now at the villa near Orlando but spent the first couple of days in Miami so thought I would do a little update on part 1 :-)

Miami Beach

The journey was a little eventful but all worked out well in the end.  The minibus was picking us up at 3.40am on Thursday to take us to the airport.....at 3.50am we were still waiting so thought we better phone.  They had written down 3.40pm!!  So there was a minor panic as we waited on the now very late minibus which got us to the airport a lot later than planned, hence joining a very long check in queue.  We had tried to do online checking but the website was down, which has also meant we couldn't reallocate mum and dads seats in advance which were not together on the Paris to Miami flight.  By the time we got to the front of the queue all the seats were allocated so we were told to try and sort the problem in Paris!  We didn't have any time to stop before boarding for Paris but at least I can't complain about hanging around the airport.  Next drama was then boarding the plane to Paris when Anne realised the airport staff had torn her Paris to Miami ticket instead of the Edinburgh to Paris one!!  So aircrew had to call ahead to Paris to explain the situation.  Paris airport was a security nightmare - hundreds of people for various flights were being herded in a haphazard fashion through the scanners regardless of timing of connecting flights only to discover that at the gate all passengers had hand luggage searched and were frisked down regardless of the fact we had been through scanners twice already!  The guy opened my hand luggage containing 2 weeks worth of medication, syringes, nebuliser etc and looked at it all in despair, sighed loudly before just zipping it back up and handing it back over.  Clearly he thought it just better not to ask...


Again we boarded with minutes to spare before embarking on a 9.5 hour flight.  We then discovered that due to the seating issue they had upgraded mum and dad to premium class - the rest of us were somewhat jealous as we sat cramped in the poor people section!  Anne couldn't even open her paper because the lady in front refused to put her chair more upright and the guy next to her kept shush-ing every time she tried to turn a page!  Being so tiny I don't really have a problem with leg room so the flight was actually not bad and I passed the time watching a couple of films so it didn't seem as long as I expected.   Arriving in Miami at 3pm local time we endured the   immigration procedures and grabbed a taxi straight to the hotel.   The hotel was amazing!!!  It was a boutique hotel in Miami Beach which I had found on Trip Advisor and it was stunning  - very luxurious, comfortable and elegant.  Great start to our holiday!

Mum and Anne enjoying breakfast outside hotel

John having breakfast (the wee metal thing coming out his head is what we use to wind him up for the day!)

We headed out to Miami Beach for dinner and sitting there outside in the warmth, having just left snow at home, it was hard to believe we were actually here.  Everyone was shattered so we headed back fairly early and crashed in our massive super king size beds!   We had a lovely continental breakfast the next morning sitting outside and I thought I could maybe get used to this :-)   We headed out for our day in Miami and first of all went to take in some of the Art Deco architecture that Miami Beach is famous for, stopped for lunch, walked along Ocean Drive, wandered around some of the shops on Lincoln Avenue, went down to look at the beach and then booked ourselves on a Duck Tour.  I am tired just thinking of it!

Art Deco Buildings

Lunch stop

 The Duck Tour was on a 2nd world war landing craft which is a vehicle that also goes into the water so the tour takes you around Miami Beach and then down to the marina and into the water around the artificial islands where the filmstars have their homes.   We were only 10 minutes down the road, just getting into the tour when there was suddenly an almighty bang, the vehicle shook and the tour guide was knocked to the ground.  We sat in stunned silence for a moment wandering what the hell had just happened.  A car has just driven straight into the side of us and now had the bonnet right underneath us (our vehicle is raised off the road).  Luckily the people in the car weren't injured but I guess rather embarrassed having just driven into the side of a gigantic duck tour boat!  Of course we then had to just sit back and wait on the police -after hanging over the side of the duck boat taking pictures and video of the offending car first ;-)

Car crash

Police arrive..

Mum was peering over at the police car to see if it was the police cop she asked to have her picture taken with earlier in the day.   The poor man hadn't been quite sure what to say although did kindly oblige....although when I shouted over 'you could just pretend to arrest her as well' he started looking really worried and didn't quite get the humour intended...

Check the police mans body language....stay away scary lady!

After a busy day we had a lovely dinner in the hotel and sipped on Mojito cocktails (obviously) before another earlish night - especially after John fell asleep on our balcony.  I threatened to blog the picture but I still have the rest of the holiday to survive so I better not.   The next morning we had a leisurely breakfast before picking up our rental car, a big 8 seater Toyoto Sienna, which dad was nominated to drive.  Dad is used to driving various cars so he was nominated as the main driver, with Andrew as copilot - although we had bought the USA sat navigation maps so that if we did get lost it was no ones fault!  The drive up to Orlando was about 4 hours although we had a lunch stop and the journey didn't seem bad at all.  There were no incidents, we didn't get lost and we didn't hit any cars or pedestrians.  Always a good start.  We arrived at the villa (called Florida Palms) late afternoon .....and were all delighted when we saw it!  I had done quite a lot of searching for villas and the website had looked fab but you are always nervous that it won't be quite the same in real life - but this was even better.   I am probably saying that because myself and Andrew were awarded the master suite which has the most gigantic bed ever - it is also really high up and I have to take a run and jump to get onto it - no kidding!  There is another double room and two twin rooms, so a coin was flipped for the second double.  Anne and John lost and entering into the spirit of all things Disney, John decided they would take the Mickey Mouse themed twin room - clearly meant for any kids staying with its Mickey Mouse duvet covers and stickers all over the walls.  Anne later gave herself the fright of her life with the giant Mickey face on the shower curtain.  I always knew John loved Mickey Mouse and we all know he can hardly contain himself waiting on his trip to the Magic Kingdom ;-)  The rest of the villa was lovely and it has a small private pool with jacuzzi, and also the garage has been turned into a games room with air hockey, darts and a pool table.  Perfect.

And so the next stage of the trip began..

Half a sleep to go...

The taxi is coming at 3.45am so heading to bed shortly for the last 1/2 sleep before Florida!  I am all packed and ready so looking forward to some much needed sunshine now.  I will only be too glad to leave behind the snow we have been having - hard to believe it's nearly April!

Seb is at his Aunty Nan's and seemed fine when we left - I think he will have a great time!  He has been moping about for days after seeing the cases come out the loft but I know he will settle once we are away.  Hopefully he will behave himself :-)

Well I better go and get organised and try to get a few hours kip before the very long flight.  This time tomorrow I will be roasty toasty in Miami, then Saturday we drive up to the villa in Orlando.  The villa does have internet so might get to update but then again might be far too busy meeting Mickey Mouse and pals ;-)

Lots of pics to follow..

Tom the Goldfish (1984-2010)

My goldfish died today at the grand old age of 26! I got him at the pet shop when I was 5 years old after failing to win a goldfish at the Galaday that year. He was called Tom - I had another fish called Tim (I was very original with names ;-)) Mum has been caring for him in his latter years as I left him at home when I went to uni thinking he wouldn't be around for much longer. How wrong was I! Over the years he lost all his gold colour and was a pale silvery white and to be honest quite freaky looking. He was a tough wee thing though - there was one time I came home from school and found the shelf had fallen off my wall and the two fish tanks were lying upside down on the carpet. The other fish was lying dead but we couldn't find Tom. I was rather upset and mum came to try and help me look. After much searching we eventually found him under the wardrobe, presumed dead, but when I went to lift him out he flipped over! I rushed to the bathroom and put him into a sink full of water where he lay on his side rather lifeless. Clearly I always wanted to be a doctor because for some reason I thought it was a good idea to get a syringe and inject lots of air into the water to try and increase the oxygen content (fish do take oxygen from the water). Well it worked! A few minutes later and Tom was swimming round the sink quite the thing. It was something of a miracle as we were looking for him for at least half an hour (and I don't even know at what point the tanks fell down). I used to keep the tank in the bathroom after that - it was relaxing watching him in the bath. Visitors did complain that he was staring at them on the toilet though...

Actually we thought for a while he was blind as he didn't seem to notice food in the tank - probably cataracts and I think he may have been demented too ;-) I think 26 years is mighty impressive but he must have been rather bored looking at the same four walls for all that time. I do hope they are right about the 3 second memory. Dad felt too guilty to flush the wee guy so he is now buried in the garden beside our old dog Keisha.
I felt the wee guy was owed at least a blog entry in his memory, so goodbye wee Tom!

Jac is back...

I have been feeling a lot better this week ... at last! Hopefully this means I will be in fab condition for my holiday - less than 1 week to go :-)

Last weekend I had to get some new jeans because of the weight I lost. Any excuse eh ;-) I did just get some cheap ones though and luckily also had some smaller trousers stashed in the loft in case I did lose weight again so have these for my holidays. I feel very disorganised for holidays at the moment and have been too tired after work this week to do much sorting. I did get all my clothes out last weekend, tried half them on and then put them all back because I couldn't decide what to take! It isn't a huge luggage allowance and I want some room in case I buy anything over there - so need to pack carefully. I also need to iron most of the summer things but am trying to ignore that fact for the time being. I have made lists though and I do love lists. I met my friend for lunch today and we were talking about lists and how satisfying it is to tick things off. We also did both admit to the cheat of adding extra things to the list after you have done them just so you can tick them off haha! Worryingly my medication list is longer than my clothes list and I guess will take up my entire hand luggage allowance ;-)

We went to see Alice in Wonderland in 3D at the cinema which I really enjoyed.  The story is a mixture of the original two books but all the memorable characters are still there and the 3D technology allows for an even more magical experience.  I do keep saying that I should go to the cinema more often.  I used to go a lot more when I was younger then I stopped going when I was more unwell - largely because I couldn't get through a film without coughing loads - and then I never really got back into the habit after my transplant.  It is nice to go out and see a film for some total escapism because when I watch a film at home I am so easily distracted and will end up tapping away on my laptop at the same time and then missing half the film.  I don't find it easy to switch off so sitting my in a dark room where I can't do anything but watch the film is probably a good thing.

On Tuesday I got my hair cut and took Seb for another visit to Nan's. We left him for a couple of hours and he didn't seem that fussed to see me when we went back haha. I think I will miss him more than he misses me to be honest. I am dreading getting the cases out this weekend though as he will go all huffy and no one likes a huffy dog..

Anyway I better go and do something useful.   I think I will start by making a list...

On the Up?

I hope so!  I haven't updated because there was no change over the past week so nothing to report.  Yesterday however I did feel a bit better so thought I better let everyone know I am still alive ;-)

Last week the sickness had been better but it came back last weekend so I headed up to the hospital on Tuesday.   By this time the joints weren't as bad but I was back to just feeling non specifically 'unwell' with a borderline temperature and nausea.  I have lost about 4kg in the few weeks which isn't ideal as my weight is now below normal again but I am sure I will be able to regain that with some tasty treats.   When I saw the doctor it seemed like my bowel was obstructing again which might explain why the nausea came back - especially if I have had a virus and my threshold for feeling sick is low at the moment due to this.  In CF the sticky mucus is also present in the bowel (as well as lungs, sinuses etc) which can cause obstructions so I have increased my medication for this.  I also explained how bad my sinuses are at the moment because I am not sure if this is adding to the unwell feeling and might be causing the flickers in temperature.  The doc wants me to increase the antbiotic I restarted last month to a higher dose and continue the steroid drops for a few months.  He is going to refer me back to ENT again just to make sure we have exhausted every avenue as he is really worried about me taking any stronger painkillers (due to adverse effects on the bowel).  The pain is getting me down quite a lot as it is there every day when I wake up and never goes away.  It gets tiring after a while and I feel it holds me back from really making the most of these lungs but hopefully the new measures will help a bit.  

So since Tuesday the sickness has died down again and I am eating better now - trying to get some high calorie food in to build me back up again.  I am sure being underweight is not helping my energy levels!   Yesterday I didn't feel as 'unwell' and got on a bit better at work and managed to potter around the house in the afternoon so that was a move in the right direction.  I am hopeful that I will start to see some big changes over the next few days.

I have been at work this week and it wasn't too bad.  I know people think I push myself too much but after dealing with 30 years of ill health I know my own body pretty well.  I have become better over the years at accepting help and at pacing myself (honestly).  I have had a very quiet time over the past few weeks - hardly taken Seb out, watched a lot of TV and not a lot else.  This 'resting' is all very well in principle but it does nothing for your mental state.  If I can go to work then it is a good thing - it distracts me, it often makes me feel a bit better and gives me a focus.   Trust me, I'm a doctor.

It was also Andrew's birthday last week - poor boy didn't get much of a celebration with me moping about!  I did go into M+S on my way home and picked up some take away style things for dinner and a cake as a feeble gesture.   I will have to make a proper cake when I am fully recovered :-)   It will be both my birthday and mums when we are in Florida ( less than 2 weeks to go now!) so that will be very different.  I have told Andrew to let me buy something when we are there... lots of shopping malls :-)

I have a quiet weekend planned and then hopefully catch up with some friends next week before we go on holiday.  I have cancelled lots of plans to meet up in the past few weeks and have not seen anyone for about a month.  That is rather depressing.  I think I need some friend medicine to be honest!  I also have a haircut next week which is good for the soul (as long as it goes well haha).  It is through in Bathgate so I am also hoping to take Seb to Nan and Bob's for another visit.  This is where he is staying when we are in Florida so we are trying to take him for a few visits to make it seem more familiar.   He will be totally fine though - as long as he gets walks and hugs he is a happy boy.  In fact he probably wont be that fussed about coming home - he is really not that loyal ;-)   So a few things to keep me busy and hopefully my next post will be all good news...

Bit fed up now

So I made it into work yesterday and got through clinic and a pile of paperwork - unfortunately my secretary is on annual leave this week so I kept getting handed little notes from patients calling about appointments I cancelled last week! At least I have held the fort and not fallen any further behind. I didn't make it into teaching this morning but I think that is allowed given the circumstances. I am not feeling a whole lot better than earlier in the week though - I feel a bit stuck at the moment. The main problem is now joint pain and stiffness with a general unwell feeling which I just can't shake off. I decided this morning that I really needed to stop wallowing and try and get moving so I went to run a couple of errands - just a 5 minute walk to post office but took me ages to recover when I got back! It's fair enough trying to rest up but sitting about also can make you feel lousy and even more tired so I have to try to keep going. I haven't been sleeping very well with night sweats and waking up a lot so that is probably not helping.

I do feel a bit pathetic at the moment because I have several friends who are waiting on their transplant calls and here I am at the other side moaning and moaning. I keep trying to stay focused and not lose perspective. I was looking back at my blog and felt a similar way last January after the fundoplication surgery - but I did get better and back to normal so must keep that in mind. I think feeling unwell also brings back a lot of emotions and feelings surrounding the pre transplant journey which I suspect is what makes it harder. On a positive transplant note however was the good news that one of the LLTGL Patient ambassadors, Rachael Wakefield, got her lung transplant yesterday. She was very quickly running out of time when the call came. I wish her all the best in her recovery and hope it is a smooth journey with a wonderful outcome.

Small Update

I did go back to work yesterday and survived. Just. Luckily a number of patients didn't turn up for clinic which gave me time to spend two hours reallocating all the ones I cancelled. Can't really afford to be off again now as have no clinic spaces until May...argh. Anyway at least I got that done, saw a few people who did turn up and got through some paperwork. I have to do a lot of things like DLA forms for patients and try to get these done as quickly as possible - having been on the other side of benefit system I know that the it can seem a very long wait for people waiting on such decisions.

I did feel pretty rough by the time I got home and my appetite seems to have vanished again. Today has not been great and I went back to bed for a couple of hours this afternoon - much to Seb's disgust as he would much rather go a nice long walk! All my joints have flared up and I feel exhausted which are likely to all just be post viral symptoms but my temperature does seem to have settled so I am sure it's just taking some time to recover now.

Seb is a bit bored with my lack of enthusiasm but at least he has his dog walker tomorrow - last week they were away for over two hours up the hills and he seems to have a great time. They left him a wee present yesterday as a thank you for our custom and because he is apparently such a 'good wee boy' (is this the same dog?!). It was a pale gold collar with crystal letters saying STAR! He has been wearing it today and my mother in law Anne will think it is fab - she has been trying to get him into some glitz for years haha. Andrew on the other hand is not so sure..

I will keep everyone posted on how I am feeling later this week (hopefully good news!)

I got a wee fright..

I haven't been blogging because I have not been very well for the past 2 weeks and am only now just turning the corner. I think I have basically had a viral sick bug but due to being immunosuppressed it hit me like a ton of bricks and I really did think something more serious was happening. Andrew had a sudden onset sick bug lasting about 24 hrs a couple of weeks ago and a couple of days after I started to feel nauseas with a fever and general unwell-ness. I crawled in from work on the Monday went straight to bed and thought a couple of days would see me right. I was wrong. By last Wednesday I was feeling worse than ever and mum was dispatched to come and look after me - she only went home yesterday (although I did give her weekend leave haha). I ended up getting some tests at hospital last weekend because in case the persisting fever was a sign of something dodgy with my lungs. They were satisfied my lungs were ok so escaped home only to have to go back again on Tuesday as I was no better. Again it was a confusing picture because I still had a persistent low grade fever, felt sick but there was no evidence of bacterial infection and lungs seemed ok - so had to assume I was just struggling to fight off a viral infection. On top of this my bowel appeared to be obstructing (probably due to dehydration on top of painkillers for sinuses) so had to get some treatment for that which is bad enough when you feel well! The one thing I have discovered is that I am physically unable to actually be sick due to the fundoplication surgery I had last year (it tightens the valve at bottom of gullet to stop acid coming up). I had always assumed that if I really really needed to be sick I could - but I can't. This is not pleasant at all - although the positive side is that I keep my anti-rejections down because otherwise I would need admission for IV anti rejections. Every cloud and all that.

Yesterday was the first day I noticed any sign of improvement and actually got dressed and didn't spend the whole day lying in bed/on the sofa. I just feel pretty washed out now but hopefully this is me on the up now and the weekend may bring a big improvement. I spoke to the transplant team a couple of times and they said they have had lots of patients with the same symptoms and it is taking ages to clear up. I was reassured to hear this as your mind does start to wander along the path of all the weird and wonderful post transplant complications I could encounter. In the last couple of weeks I was really scared at times - I cried a lot - in retrospect that seems a bit over the top for a viral illness, but the point was that I didn't know this for sure. Pre transplant I knew my body so well and although I was often very unwell it was predictable. I knew when I needed antibiotics, when I needed hospital and how long to expect recovery to take. I knew my health inside out. Now I feel like I am always dealing with the unknown and it can be so unsettling. It is the fear that I am somehow always living on borrowed time and with baited breath you just pray the bubble is never going to burst.

Ironically I had also been about to blog that I had reached 1 year being back to work on the 17th February with NO time off sick! Not quite the case now having been off for 2 weeks - but still a year without time off was pretty good going and perhaps I can do the same again. Ideally another week off would be nice but if I can get back after the weekend then I will. My job before transplant was supernumerary so the work would be picked up if I was off - but this time it wont. I have cancelled 3 clinics so far which I need to reschedule and given that I was already booked well into April/May it might be tricky. If I go back I do promise to pace myself though and not take on anything I don't need to at the moment. At least my job is not a physical one so I do get to sit all day :-)

I just need to get myself better and strong for the big holiday now! I ended up having to pay nearer £2000 for the travel insurance because the policy had an error in the medical screening so original quote was wrong. If I get admitted to hospital I will invalidate the policy and can kiss goodbye to Florida - so thank goodness they didn't take me in last week and hopefully it will be onwards and upwards now. At least I have something nice to focus on and I really do feel I need a holiday - it's only 4 weeks away now :-)

I will update again soon with how the recovery is going and I am sure it will be all good news ...