A Year in Pictures!

Well, 2008 has certainly been some year - a year of huge ups, downs and ongoing changes. This is a time when I reflect on the year past but for once, I am really lost for words. Where to even start? So I have decided to do a year in pictures...my journey of a life time....

December 2007 - trying to help decorate the tree (in PJ's and tethered by the O2). I managed about 2 bobbles before needing to lie down but at least I tried!

New Year 2008 - I spent all of New Year in that chair with that blanket - not exactly rock 'n' roll but at least I was at home with my family! Shortly after I was admitted to hospital with one of the worst infections I have had.


February 2008 - trying out the new stair lift! I find it hard to believe I needed to use that. I was so proud and tried to hard to keep going with the stairs, but by this point I was relying on Andrew to carry me up! Very romantic eh? ;-) Now I can sprint up them!


March 2008 - the month of my false alarm and 'pretend' transplant. The lowest month of the year and one of the lowest times in my life. I can never have disappointment like that again...to wake up thinking my new life was just beginning and it had not even come close. I have no photos from March funnily enough (other than a picture of my scar which I will not subject you to!)

April 2008 - 4 weeks after my false alarm (looking surprisingly well, despite feeling pretty rough and still being on IV antibiotics). This was at my good friend Anna's wedding and I am so glad I managed to make it. Little was I to know that the call was going to come only 6 days later!!



April 25th 2008 - view flying down to Newcastle for transplant. A sunrise; a new beginning.


April 2 days post transplant (ITU) - trying to smile but jeez, I was in pain!!


April Day 4 post transplant - moved to HDU and already looking better!


May 1 week post transplant - gosh, what a difference a week makes! Had been on the bike by this point, and now pumping iron ;-)


May 2008 - Back home and walking at the country park! I think it was 9 am on a Sunday haha (possibly still high on steroids ;-))


June 2008 - my dear friend Lucie's wedding weekend. Can't believe I was allowed to go. I somehow fitted my transplant around the 5 weddings I had in 2008 :-)


August 2008 - First holiday in a long time! Ireland - wet, wild, windy but fab :-) Ignore the crutches - that was a minor blip in the recovery process ;-)


September 2008 - 3 weddings in September! This was taken at my friends Lyndsay's wedding. It was a great day and I had a ball :-)


October 2008 - dressed up for Halloween party! Making the most of being able to get out and about....even if I am dressed as a bumble bee.


December 2008 -decorating the tree. What a huge contrast to last Christmas. At least I am dressed this year haha!

Hogmanay 2008 - about to bring in the New Year; the start of many more adventures!


I think that sums things up fairly well....a year that started with a fear that it may even be the last, but the glittering hope that it might just be the start. And what a start it was. I now look forward to 2009 where I hope and pray that my dreams can continue to come true! I am excited (and scared!) about going back to work in February but that really will mark another new beginning. Early in the new year I will be getting my troops ready and organised for the big Team Jac walk in May. In the meantime it will be back to the gym to try and get a bit fitter! It is also my own and Andrews 30th birthdays this year (and most of our friends 30ths!) and of course, April 25th will mark my 1 year transplant anniversary. I also have a few holidays planned - a couple of weekends and a family trip to Tuscany in September which I am very much looking forward to :-) Gosh, I am tired out just thinking about it all!

My New Years resolutions are simple. Enjoy each day, do not ever wish time away, try not to be fearful about what may never happen, and most of all, have fun, fun, fun!

Happy Christmas!

Wishing everyone a very Happy Christmas! I had a wonderful day and for the first time in a long time I actually felt well on the day :-) I was up at my usual 7 am, opening my stocking before waking everyone else. I sent Seb through in his little santa cape and hat to wake mum and dad and then the present opening began. I had the most enormous pile of presents to open and we were there for some time!! I got lots of lovely gifts and am so delighted with everything....I had given mum some ideas to choose from but she just got them all ;-)

Then, also for the first time in years, I actually helped mum with dinner! We did a lot of the preparation on Christmas eve and because I could help, we were ready to sit down and watch our movie soon after the Christmas vigil. I was really not very well at Mass last year and was struggling with breathlessness, where as this year I could even sing all the hymns (or try too haha). Only minor panic was taking a hypo (low sugars) just as Mass started - suddenly realised the priest sounded very distant and everyone looked fuzzy....luckily I had dextrose in my bag although I got a few funny looks as I sat munching on what looked like sweeties to everyone else! Christmas dinner itself was lovely and I ate all four courses without too much difficulty! My favourite part is always the steam pudding - it's a bit like Christmas cake but ten times lighter and tastes amazing. My gran used to make it and my mum has carried on the tradition...I guess I need to learn how to make it now :-)

At Christmas Dinner

I am now down at Andrew's parents, relaxing and chilling out. We had some friends over last night which was great - in fact one commented that I said more in the first five minutes of them arriving than I did all night last year, such is the difference in me. Today we have been out for a walk, down to see Andrew's brothers flat and also been trying out the game Boogie for the wii. You basically need to sing and dance at the same time in time to your character on the screen. I can do neither! Good exercise though ;-) I also have two new singstar games (karaoke style games) - summer songs and Abba, so much fun will be had at New Year. I need to start practising...

Seb has been enjoying the festive period and was rather excited by all his new toys on Christmas day - he thereafter thought every parcel was for him haha! This morning he totally traumatised Andrews gran when he burst into her bedroom (thinking he would find Anne and John) and jumped right on top of her! I am not sure which of them got the bigger fright as it was not who Seb was expecting to see ;-)

I am heading back to my mum and dads for New year but Anne and John will be joining us, so much fun and games to be had. Last year I spent a large part of New Year's day in bed and didn't even make it to the dinner table and the rest of the evening was spent lying out in the big recliner chair.....this year I am sure I will be joining in everything!!

Other news was that fracture clinic went ok. There was no evidence of new fracture, which is good news. I have been given a big walker boot to support my foot at the moment - just to wear walking outside, not around the house. It is like a giant ski boot which you can pump air into to make it fit like a cast. Very cool but very big! I will post a photo when I am back home :-) I am also going to get an ultra sound of my foot next month just in case it is a different problem entirely. It has not been too bad over the last few days but I have not been doing much walking since there are plenty of other people to take Seb out - at least this gives me a chance to rest it properly.

Although I am not sure if dancing to the Boogie game counts as resting.....

Nearly Christmas now...3 more sleeps!

I had a lovely weekend going out for dinner with Andrew's mum, dad and gran to a new local restaurant , which was very nice. I forgot to take my anti rejection tablets with me though so had to nip home afterwards and get them...silly girl. I still had them on time, so it was fine but just goes to show how easily these things can slip your mind when you are otherwise busy. I have an alarm on my mobile phone to remind me!

I can't believe it's only 3 more sleeps until Christmas! I am heading home tomorrow so have spent today trying to get organised. I am mostly packed and ready now, and I even gave wee Seb a bath for Santa coming...

Seb just out the bath!

Tomorrow night we are meeting up with friends for dinner which I am really looking forward to, and then Christmas eve it will be the vigil Mass and then a Christmas movie. I have three films to choose from this year, so not quite decided which one yet. Maybe all three!

Before we head home tomorrow I am popping to clinic to get my foot checked out. It's still been playing up a bit and starts to ache when I am walking. A good friend of mines husband is an orthopaedic doctor so is very kindly going to take a look at it as he is doing a fracture clinic tomorrow - at least it will let me know if everything is ok and whether I should be walking on it or not. Also on the medical front I heard from the surgeons secretary today - she showed him the barium swallow results and he has decided the surgery will still be going ahead. I am pleased to hear this and just glad I know what is happening before I go home.

Lastly I will leave you with some pics of Seb wearing his new coat. Now to be fair I am not really into dressing up dogs (apart from bow ties which are entirely different of course) but I am getting fed up of clearing up the mud he brings in on his underside when it's raining. Sometimes you have to shower him off it's so bad! So I was looking for a coat that covered underneath as well. This is the best I could find and I am the first to admit that he looks absolutely ridiculous....but very cute. It's the fact it has wee arm (?) holes like a real coat haha! You have to turn the collar bit down as it annoys him but I left it up for the purpose of the photos......I think he would like to be a model :-)

Only 7 sleeps!

I have had a fairly quiet week, which is nice for a change! I have caught up with a few friends for coffee and chat and that has been really nice. I think I will miss being a lady of leisure when I get back to work next year!

I also had the ultrasound scan on Tuesday which was fine. It wasn't as bad as they had expected so I didn't have to get any treatment in hospital (the plan had been to go up as a day patient for a few days). So I just had to up my normal meds and they also added in a drug (domperidone) to try and help my stomach empty quicker, in light of the barium swallow results. I have still not heard anything about whether the operation in January is still going ahead so I decided to phone the surgeon's secretary today - partly to pass on the information to him that some treatment had been started (too many doctors involved in my care and not sure how much communication between them all!) and also just alert him to the fact the swallow was abnormal in case he has not seen report yet. The secretary was very nice and thanked me for letting her know this information as she has been on holiday so he won't have seen the report! She said she would make sure he loooked at it asap and get back to me if there is any issues with the surgery. Hopefully I will hear soon so I know what's happening.

I went to the gym today - I haven't been for a couple of weeks because my foot has been sore again (the one I fractured). It seemed to start playing up when I started the gym so I think it is one of the machines I am using. I thought it was the rowing machine but I missed that out today and my foot was still quite sore when I got home, so now I am thinking it might be the exercise bike. So hard to know what to do - probably rest the foot, but then I quickly start to de-condition and I am desperate to get some fitness back, plus I have my walk to get training for :-) I will be taking it easy over Christmas anyway and then if I get the surgery in January won't be doing much exercise, so hopefully it will all just settle down again. Very annoying though!

Seb had to get his vaccinations this week and I was so stressed about it. The last couple of years have been awful with him having to be pinned down by several nurses and I could hear him screaming from the waiting room. This year we got on much better, so it was a huge relief. He was ok in the waiting room because there were other dogs and he wanted to meet them all so was very distracted. Once we got into the room he started playing up, trying to jump off the table and getting all upset but the vet managed to do the injection while he wasn't looking so he didn't even know it had happened! Thank goodness :-) Maybe the dog training has helped haha.

I can't believe it's only 7 sleeps until Christmas now! I am quite organised really - everything wrapped, been baking mince pies, cards written and posted and even packed all my medication for going home. I now just have to work out what clothes to take home and how many pairs of boots I need to go with them...

It’s A Wonderful Life

I went to see this at the cinema the other night – they were giving out free mince pies and mulled wine, so very festive indeed. I have seen this film a couple of times before and although it is an emotional film I am generally not someone who cries at movies...so....I didn’t. This time however I really got myself quite upset. I cried at the sad bits, I cried at the happy bits and I cried when I got home. I don’t think it’s really much to do with the film and more about the emotion that this time of year can bring to the surface, where something as simple as a good movie can set you off on a whole train of thoughts and feelings.

This past week I have spent a lot of time looking back over the last couple of years, thinking how difficult Christmas was and wondering just how different this year will be. I think especially of last year, where for the first time I began to wonder, with fear and sadness, if I would get my transplant in time to see another Christmas.

I have been thinking about my donor, and her family, and the fact that this will be a difficult and emotional Christmas for them and that my happiness could only come from their loss. I have been thinking about people I know who are still waiting on transplant and face the same questions that I wondered last year....will this be ‘my’ year?

I also spend a lot of time thinking about Frances Ann at this time of year. Mostly because Christmas is a family time, a time of fun and laughter and we all miss her so so much. Frances Ann loved Christmas (almost!) as much as I do and we both got high as kites on Christmas eve, making everyone watch “The Muppet Christmas Carol” before bed, and then refusing to go to sleep. In the morning I would open my stocking (which mum has to leave outside my door to pacify me in the early hours) and then I would go and waken Frances Ann and climb into her bed until she opened her stocking. We would then both wake mum and dad to see if Santa had been. I am not talking about when we were children here....I am talking about right up until her last Christmas when she was 19 and I was 24. Some people just never grow up you see. We then took turns at opening our presents from mum and dad so that we could each see what the other was opening and then we exchanged our own gifts. In fact ‘The Muppet Christmas Carol’ was a video Frances bought me when she was about 8, with her own pocket money. I always bought the joint presents at Christmas and Frances Ann always owed me large sums of money, knowing full well that on Christmas day I would be so excited and full of the festive spirit that I would always write off any debt. She was a fly one I tell you ;-) I so miss having her there on Christmas day (as I do every day) but I am also glad for the 19 years that we did share and the traditions we built as a family. Christmas can never be quite the same but it can still be beautiful, magical and my favourite day of the year. It’s still about family – my family have seen me through some very difficult times and given me strength when I needed it most...... and it is now time for them to share in the joyful times and know that sometimes, just sometimes, it really can be “A Wonderful Life”.

Professor Sebastian gets into the festive spirit...

"Can you see it better from this angle?!"

We went to visit mum and dad today, with Seb wearing his new bow tie. He went out into the garden when we arrived and five minutes later our neighbour rang the door bell....having just found a small dog barking at her back door wanting in, wearing a bow tie. Someone had left the gate open so he obviously thought he might just pop round and see what the neighbours thought of his new look...

Dog Parties

I had a lovely evening on Wednesday with my friends and the meal was delicious! We had a really good laugh and it was so nice just catching up with friends, which I always feel is especially important at this time of year and we really should do it more often!

Thursday was the last dog training session....and the Christmas party. Training went fine and we finished up quite early because the later class were joining us for the party. This meant a whole new set of dogs for Seb to meet and he wasn't too keen - he had only just got used to the first lot! I think there were about 22 dogs in total, flashing lights, music and children running up and down. Seb looked completely bewildered! I suppose he is used to a very quiet life really. He did well however and joined in all the games with a little persuasion ;-) First we had limbo with the dogs - getting yourself and the dog under the rope. Easy for Seb but I nearly dislocated my knee and woke up unable to bend my legs haha. Competitive you say?! We then moved on to 'musical sit' where we had to go round the room and then get the dog to sit when the music stopped. I thought we would be out first round as Seb likes to take his time when sitting but he did quite well and surprised me...until he decided it was now very boring and just point blank refused to sit one more time. The most amusing was where they lay out three rows of sausage pieces and you had to run down the hall, getting the dog to eat the sausage and try and beat the other two. Some dogs practically inhaled the sausage, some didn't seem to get the point and some just wandered off. Seb however was rather unique! He saw the sausage no problem, sauntered up to it, sniffed it carefully before picking it up for closer inspection. He then sat down so he could relax while carefully chewing his prize. I am shouting 'take it!!' 'hurry' and he just kept chewing before slowly getting up and wandering over to the next piece at a leisurely pace before repeating his ritual. Everyone else was finished by the time he finished the first piece and the whole place was in hysterics at him!! Lastly we did recall but this time they put a treat in between you and the dog and the dog was supposed to ignored the treat. We got into the final because Seb did ignore the treat first time - but that was only because it was a dry biscuit and he doesn't 'do' dry biscuits. In the final they put a liver treat so he was definitely stopping to eat that on route! Needless to say Andrew just watched and laughed while all this was going on -no way was he getting up to play dog games. I later discovered that the other dogs were from the advanced class, which runs after ours, so apparently we are able to go to that now if we want to. I am thinking about it! I am not sure what they do and it might be a bit advanced ...but it is good socialisation for Seb (since he is not that great with other dogs) and might be fun :-)

I've also been wrapping Christmas presents with Seb trying to help by lying on the paper and looking in all the bags. I had to wrap my presents in many stages last year as the bending over made me so breathless. This year I did it all in one go and although it took hours I was fine (other than a sore back!) It is looking a bit like Santa's grotto at the moment....magical.

Seb was told to stay out the way so sat himself under the tree, looking a bit huffy...


He slowly crept out from under the tree until he ended up in the middle of everything....

Ooooooh........Magical!!

Newcastle Update

I headed down to Newcastle on Monday afternoon with dad as I had clinic early Tuesday morning. Poor dad had to drive here and collect me as my foot has been playing up a bit so I thought it wise to rest it for a few days (I think it might be the rowing machine at the gym so am going to avoid this for a while!) We were in clinic by 7.15 am .....so were done and dusted test wise by 9 am but the doctors don't start until 10.30am! Luckily my friend Louise was at clinic as well so we got to sit and chat for ages and it was fantastic finally getting to meet the lady herself in person! She is looking great and making progress now, but it will take time to get back to full strength.

I had an excellent report once again! Lung function was the same at 97% - the doctor said he couldn't ask for better than that, although I suggested 100% might be even better ;-) Oxygen sats were 100%, BP fine and chest x-ray perfect. I had lost a couple of kilos but I suspect this is due to all the problems I'm having with my stomach at the moment, which is causing me to eat less than usual. The stomach cramps I had last week didn't settle so I had to go to hospital last week for some treatment. You basically get something called DIOS (Distal intestinal obstructive syndrome) in CF, which I used to get all the time as a child but not so often as an adult. There is mucus in the bowel, the same as in the chest in CF, which can cause an obstruction from time to time, so needs treated. It still doesn't seem to have resolved completely so I am getting an abdominal ultrasound next week to take a closer look.

On the subject of stomachs, I had the barium swallow yesterday also, which showed that the stomach is not emptying fast enough - this will be contributing to the reflux and could also be the reason my blood sugars have been erratic. It may be a pre existing problem, but might have been caused by the transplant surgery(it is apparently very common post transplant). The main problem just now is that it might affect whether I can get surgery for the reflux but I will just have to wait and see as the surgeon won't even have seen the report yet! It's quite frustrating having these issues at the moment as I am not really enjoying my food the same and getting a lot of discomfort, but at the same time as long as my lungs are working then I think I can cope with just about anything!

I went into work this morning to sit in on a clinic as I am feeling rather apprehensive about going back in the new year! I was reassured that I had not in fact forgotten everything and really enjoyed the morning. The current plan is to start back in February for 2 sessions a week, with the hope of securing some more funding for extra sessions soon after. I am also planning to do some work at the university as a PBL facilitator (the course I went on a couple of months ago) so I am looking forward to trying that! It might be a bit difficult juggling all these hospital appointments with work but hopefully both will be flexible and I can fit everything in.

I am off for a Christmas meal tonight with my friends so looking forward to that. I am definitely feeling a lot more festive this year and it won't be long until I am counting the sleeps until Christmas...

...14 I believe :-)

Snow Baby

So, we had our first snowfall this week and Seb was loving it! He gets rather excited about snow in the garden and tends to just run round and round at high speed with utter joy, although this year he took to rolling around instead...

My wee snow baby in photos:







I got the Christmas tree lights last weekend as planned and today we put the tree up! I know some people probably think that's a bit early but hey ho, I love Christmas. It's such a far cry from decorating the tree last year, where I was trying not to get the oxygen tubing caught around the tree as I hung the decorations....and that's all I did. Andrew put the tree up, hung the lights and tinsel and unwrapped everything and I just put some decorations on....yet it was such hard work! I remember last year being quite sad that I didn't feel very excited about Christmas but it is very hard to get into the spirit of things when you feel unwell. This year is very different and we had the tree up in a jiffy because I was there helping and, of course, organising. I also realised when unpacking the decorations that poor Andrew must have taken the tree down himself last year as I was in hospital unwell after New Year. I could tell by the way the decorations were packed haha - they were actually much neater than my efforts, which basically involve throwing them all in the box ;-)

In the spirit of the season I made little mince pie cakes today - not mince pies with pastry but little sponge type cakes with mince meat in them....yum! I still had some eggs to use so have also made some banana and pecan muffins and am just waiting on them to cool at the moment. It's mostly because I bought a new baking book and am currently working my way through the entire thing, much to Andrews delight.

Seb has his last dog training session this coming week - I can't believe that will be 9 sessions! He was a bit naughty last week and started barking and running at other dogs - he has never done this before in the class! Not sure if it was related to him getting a fright earlier in the week when a huge Rough Collie (walking off lead) ran at him bearing it's teeth. I ran at the dog (maybe not the wisest move but only thing I could think of) and it ran off. Clearly I am more scary than I thought. Anyway, not sure if this had put him on edge but he was acting really weird. Luckily we managed to nip it in the bud and he was fine for the rest of the evening. The trainer said she can't believe the change in him, and also in the way I handle him. She thinks I now realise he is a dog and not a baby. She hasn't seen me carrying him around the house rocking him gently though ;-) Seriously though, she is right in the sense that I am more consistent and assertive with him now. I was like this when I first got him (4 years ago now) but when I got more unwell I really didn't have the energy to battle with him over things and he got away with far too much, not to mention the fact he didn't respect me as much because I wasn't able to walk and play with him as much. He was more like a wee huggy bear to keep my company! I would say he now seems much happier because he knows who's in charge (although he still likes to test me!) and he knows what the rules are. Doesn't mean he always follows them... but then I wouldn't want him to stop being Seb!

I have a date - 9th Jan - for my fundoplication operation. At least that gives me time to enjoy all the festivities and at least I'm not going to be hanging about all January waiting, especially as I plan to get back to work early next year - hopefully start of February by which point I should be fully recovered (I hope!) I am down at Newcastle on Tuesday this week for transplant clinic and the barium swallow test so I will report back when I am home.

In the meantime I will spread some festive joy and leave you with some pics of my decorations:

Mr Reindeer - who has springy legs!

My Granda made this crib from an orange box and the little nativity figures were my mums when she was a child