Back to Reality

Last week was busy busy, so had no time to post again! New Years day was lovely and Anne and John stayed with us for further celebration. We were a bit too tired for more sing star though....maybe not a bad thing ;-) The 2nd January is a big family gathering at my Uncles and was also a great day. I wasn't well enough to go last year so it was great being able to join in this year, especially with all the games! On Saturday we went into to Edinburgh to have lunch with my friends Claire and Giuseppe and had a lovely afternoon.....then of course I found out we were minutes away from a shopping centre so we had to make a wee detour. Christmas money is now spent :-)

We then headed back home on Sunday with a large proportion of the day spent packing up the car, then unpacking at the other end. It is always strange coming home to the Christmas tree, another pile of cards behind the door and all the decorations. We had one last night of Christmas tree lights before taking everything down on Monday - Seb is pleased because he can now see out the living room window again haha.

I also had a pile of appointment letters sitting - ultrasound for foot next Friday, appointment for surgery this week and an appointment at pain clinic yesterday (just as well we were back home or I might have missed that!) The appointment was in the city centre so Andrew had to come with me as there is no parking - bit awkward really. Anyway the consultant was very nice and listened to the whole story about my facial (?sinus) pain. I explained that this is by no means new - I have had sinus pain on and off since childhood, having my first operation when I was seven. Surgery would relieve the pain for a year or two, then it would just come back again. This time however there is no more surgery I can have. I managed before with a combination of paracetamol and ibuprofen, however I am not allowed to take ibuprofen post transplant (it affects kidneys) so am struggling to find something effective. The consultant did agree that this sounded very much like sinus pain (and not a facial pain syndrome which the ENT was querying). However he said that since there is not more ENT treatment to be done, then the main issue is now pain management. He is going to try me on a drug called Dosulepin which is similar to something I was on post transplant. It is traditionally an antidepressant drug but also used for chronic pain (don't worry, I am not depressed!) He did however emphasise that he is taking a rather pessimistic view of how much he can help, mainly due to the fact the pain has been going on so long. He cannot get rid of the pain (although I never expected this outcome anyway) but will try at least to find something to help a bit. Also because of the chronicity of the pain, he would not expect this to work quickly and will see me in 3 months time...and even at that point he is not sure that is a long enough trial. I am at least glad we are trying something new and keeping everything crossed that I see some improvement, no matter how small.

I am heading back to mum and dads tonight as mum is taking me down to Newcastle tomorrow for my hospital admission. The surgery is on Friday but I have to come in the day before. Please keep the prayers going that this will be done via keyhole surgery so that I am back in home in a few days. I probably won't be able to use my laptop (it's a different hospital I am going to) so may not be able to update until I am back home. I am a bit nervous to be honest. I wasn't nervous before my transplant because I had nothing to lose.....but now I am so well I don't want anything to rock the boat..

Lastly, I have heard some very bad news from my friend Shelley (who had her transplant the month before me). She has been unwell recently and has just found out she has chronic rejection. This is when the new lungs become scarred (the process is not well understood) and lung function starts to drop again - her lung function has dropped from 4L to 1L in a very short space. There is no cure but some options to try and slow the process so they are starting some treatment at the moment. Keep her in your thoughts and prayers - she is staying very positive and fighting this hard!

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

Flying past the target!

Well the Team Jac sponsorship has been flying along this past few days thank to my very kind colleagues at DNUK. This is a doctors forum I use and I rather cheekily posted on the general chat forum about my sponsored walk and have since been inundated with sponsorship (all from people I don't even know) which has sent me flying over the £1000 target! I haven't really started my harassment campaign for sponsorship (which will come much nearer the time) and most of my team members will not collect sponsorship until after new year.....so looks like we need to set a new target! Go Team Jac!!

I have been to the gym twice this week, so have increased the treadmill to 15mins at 5.5km/hr (which is quite fast for my wee legs!), still 10 mins on bike, as I find this really hard and 10 mins on the rowing machine. I am so far enjoying myself, although it's finding the motivation to get yourself to the gym when it's cold, dark and horrible outside!

Dog training this week went very well and Seb got a lot of compliments :-) The head trainer (who microchipped him) said she couldn't believe it was the same dog she had first met. She did see him at his very worst though because to be fair he was fairly well trained to start with...I think she just got the impression he was a wild, unruly spoiled brat. The spoiled bit is pretty much true though ;-) He did a fantastic recall, stopping right in front of me to sit and then going round to end up on my left side in sitting position -he was the only dog who could do the whole thing, so I was feeling incredibly smug. I am rather competitive though and have been working hard at it! We now have to introduce randomly asking the dog to sit when you are walking - the idea being that by now they dog is quite complacent but they have to remember to pay attention to you at all times, as you might give a command. So far Seb is looking at me like I'm nuts - we walk along and I say 'sit' and he looks around as if thinking 'Who is she talking to?!' I said it again and he lowered his bottom, realised the ground was cold and stood straight back up! So at the moment I am having to push him into a sit even though he knows the command. He will soon get the idea though...he is just so stubborn.

I also had joint CF/Diabetic clinic this week. It was the first one since my transplant so it was a very strange experience. CF wise, everything was ok. They reckon the joint pain (which has got worse since started the gym) will ease off as my muscles strengthen and support the joints. I've had a few GI problems with cramping stomach pain but they upped my meds for that, so things should settle now. My lung function was 90% (was 97% in newcastle) but this is using a different machine, which also read my result as lower than Newcastle when I was up regarding the chest pain in September, so I am not worried at all about this. I was rather amused at the doctors response to seeing me for the first time though - she got so overexcited by the way I spoke, which is apparently very different to before. I speak much faster and use longer sentences but she said it was the most marked difference she had ever seen post transplant and she has know me 11 years!

I then saw the diabetic team who were a bit concerned about the random hypo's I am having (low blood sugars) coupled with unexpected high sugars. I have to monitor some fasting blood sugars to see if I need any long acting insulin and also rotate my injection sites more often as this can affect absorption of insulin and might explain some of my unexpected results. My friend Audrey had told me about a course where you learn to count carbohydrates so you can calculate the amount of insulin needed so I asked about this. They do have a 2 day course so are going to set me up on that, which I think will really help me! I am eating more than I did before and now have no idea how much insulin to take at times. The doctor did emphasise that I have NOT to follow a diabetic diet...I have to stick to the high fat CF diet and adjust the insulin accordingly, otherwise I will probably start losing weight again. This was good news as it means I can keep baking and then eating it all!

Yesterday I was at my friends wee girls 1st birthday party, which was fun. Orla is so so cute! She was pushing herself around on a wee wooden tricycle before deciding she would try and stand on it instead....I am sure she is going to be trouble when she is older! It was so lovely to be able to just pop along to something like that with no problem and no worries about how I would manage the stairs etc. These wee things just keep reminding me how far I have come.

Today I am off to buy some Christmas tree lights...I think the tree will be going up next weekend. I know that's quite early but I go home for Christmas and New Year so I have to get the benefit before I go! That's my excuse and I am sticking to it :-)

WOOOOHOOOOO!

For those who have been following my Just Giving donation page for Team Jac - the latest donation from Sarah and Gordon Brown is actually from THE Sarah and Gordon Brown. The Prime minister and his wife have donated to my team...how utterly fantastic is that :-) :-)

To explain, I may have written a wee letter to Sarah Brown to tell her about my walk - obviously she can relate to the issue of CF but it was also due to the fact Fife (where the walk will take place) is where Gordon Brown's constituency is and I hoped she would be able to support the team in some way. I am so so chuffed and very grateful for her help with this.....apart from a wonderful donation, just having that kind of backing is a big boost to the walk. Go Team Jac!

Back Home

I got back home on Wednesday night, after stopping at mum and dads for dinner (obviously!) and picking up my wee pooch. Dad has been continuing the heel work so there was no rest for poor Seb, although I am sure he gets more treats when I am away ;-) Dad has discovered that Seb LOVES corned beef (after he stole dads sandwich) so this is a new found motivational tool when I don't have any chicken to hand. He had dog training on thurs night but I had to go myself this week as Andrew has been working late every night, and today - Saturday - as he has a deadline to meet. Seb was acting up a bit at class and I'm not sure if it was because Andrew wasn't there watching - maybe he likes having spectators (like children wanting their parents on the sidelines!) He did really well at heel work, apart from the fact he has taken a dislike to one of the trainers and refuses to walk if she stands too close to him! She tried feeding him treats and although he took them, he then walked off before she could even pat him. So so rude. He was then very good at his sit stay, and down stay and would just lie there for as long as I asked I think. He finds this part rather boring though.

I then had to go to a room next door for a wee talk (we get dog ownership talks every week) so had to leave Seb with one of the trainers. Two minutes later and there is a wee knock at the door, and the trainers standing there with Seb under one arm and his collar and lead in the other - apparently he was so desperate to go out he slipped his collar and then wouldn't let anyone put it back on! He has never done this before! He does however have a terrible fear of anyone touching his neck after an awful experience at the vets where 4 people held him down for his vaccinations. It is very stressful as he gets so agitated when anyone 'comes at him' as if to hold or touch his neck and he gets hysterical. Fortunately the trainer was aware of this so just brought him to me before he got too worked up. Apparently he was fine after that, but I suspect it was more to do with the fact he has seen where I was and knew I hadn't left the building!

Lastly it was recall and this week I asked if I could get him to sit and wait, rather than being held by the trainer as he hates this. He does this perfectly at home but at training decided he no longer understood what the word 'sit' meant and stood there looking around as if rather confused. He did eventually sit and wait and then come when called, but it wasn't a very elegant performance so we must work on that for next week! Only 3 sessions left now..

I have received my appointment for the barium swallow, which is to look at how fast my stomach is emptying, This is the 9th Dec in Newcastle, but this can be tied in with my transplant clinic appointment so isn't really an extra trip. Fingers crossed the results are ok and don't interfere with the surgery. Strangely my reflux has been really bad lately as if to reassure me that I have made the right decision! Funny isn't it.

I also got my blood test results back from GP - everything was normal. They do a test (Hb1ac) which gives an indication of blood glucose control over a 3 month period. It came back at 6.4% which is really good (less than 7 is normal), although a few months ago it was only 5.6%. I am aware that my sugars are much more random now but am doing my best to control them. Unfortunately this means I have had a lot more low sugar episodes (hypoglycaemia) which are quite scary when they happen outside. I had one at the dog training and I had on in Tesco a couple of weeks ago, which was rather scary as I was on my own. I usually become light headed, shaky and confused. I had my dextrose tablets with me but even after half a packet my sugars were still rather low. I suppose the sensible thing would have been to ask a member of staff for a sugary drink instead of continuing to push a heavy trolley around ;-)

I had my second gym session this week, after my induction on Monday. They have set me a programme of 10 mins on treadmill at 4.5km/hr, 10 mins on bike (no resistance) and 8 mins on rowing machine, and then I can gradually increase times but have to just stick with these 3 machines at the moment. I already started increasing the treadmill as I find this one quite easy (due to walking seb) but the bike is really hard! I could do 10 mins shortly after the transplant but can't do any more yet - I thought it would be easier but I obviously haven't been working those muscles. I quite enjoyed myself and hopefully I will continue to go twice a week and start to see some big improvements soon!

My friend is coming for dinner tonight so that will be lovely to catch up. No where near as hectic as last weekend when 5 of Andrews friends came for the afternoon - to stay overnight. So I had fold up beds, blow up beds crammed into the most unlikely places! It was a really good night though and I think everyone enjoyed themselves. This get together has been cancelled twice already because of me - once because I was really unwell and then again when I had my false alarm. So thankfully it went ahead this time and I was able to help and make food and be the perfect hostess ...or something :-)

Good news is that my friend Louise finally got home from hospital last week after her transplant! It will be a slow recovery and lots of work still to do, but fantastic to have made that all important step :-)

Now, I'm off to work out how many days it is until Christmas.....

p.s Can't believe I forgot to mention this last week but I have some GREAT news about Team Jac. I was looking for sponsorship so that I can get (probably caps) something for the team to all wear so we are a 'group'. Anyway, the company Moy Park, who my aunt works for are sponsoring the team £500 to buy anything needed!!!!!!!!!!!!!!!!! How fantastic is that???!!!

Live from Newcastle

I'm still in Newcastle tonight following my endoscopy this afternoon and we will just head home tomorrow. I met with the GI doctor first to discuss what was happening (since I had just received this random letter in the post with no explanation!) As expected, he said I had been referred due to the results of study I took part in, which showed significant acid reflux. Basically there is a sphincter at the bottom of your oesophagus (gullet) which opens when you eat to allow food down, and closes afterwards to prevent acid coming back up. During transplant surgery the nerve which controls this can become damaged (the nerve runs down the chest) so the sphincter doesn't work properly - hence acid refluxing back up and causing symptoms. My case is a little different as I had severe reflux pre- transplant (common in CF) and am already on the maximum medical therapy (in fact I am on doses above those normally allowed) - this worked quite well pre transplant but since the transplant the symptoms have all returned. Based on this alone, I am a very good candidate for surgery - an operation called Fundoplication - this involves wrapping a small part of the stomach around the oesophagus to create a new sphincter. So the reason he is recommending the surgery is to help alleviate the symptoms, but as an aside, it may help reduce my risk of chronic rejection (although this is not reason enough to do surgery on someone).

He did explain the possible side effects post surgery, which did make me feel a bit more worried about it all! The sphincter will be very tight to start with and at first I will only be allowed to drink and then take sloppy food for first few months (not liquid, but things like mashed potatoes etc). Then I start introducing more normal things like pasta, fish etc. However it is quite possible I will always have problems eating heavier foods such as red meat, crusty bread etc. I may in fact not be able to eat them at all.....and I LOVE steak! Most people however can return to a near normal diet. The other issue is that the air from your stomach (that you swallow) can't escape so you get quite bloated. I don't like this one bit! I get this enough due to GI problems with CF. However on the upside, 90% of people have significant improvement in symptoms and usually come off their medication (although I might have to stay on it due to rejection risk issue).

The actual surgery itself is normally done using a laparoscopic technique - this involves 4 small incisions for them to put instruments through but scarring is minimal and I should only have to stay 1-2 nights. However he also took a look at my peg tube site - which is still leaking after 6 months!! He said that the stomach is adhered to the abdominal wall where the peg was and this might make laparoscopy impossible - in which case he will have to proceed to open surgery, which clearly is much more invasive and would be around a 6" scar (judging by the hand motions he made!!) I would have to stay in hospital around 5 days if this was the case. I will have to consent to both and will only know once I wake up which has been done. Normally the risk of needing open surgery is 1 in 40 but my risk is about 1 in 10. It would be really annoying if this happened as it would be a big setback for me - I probably wouldn't be allowed to go to the gym, to drive, lift things etc for few weeks but I will just have to take it as it comes. On a positive note though, he is going to staple the peg tube site from the inside to stop it leaking - as he said if it hasn't healed by now, then it's not going to. It will be great to get that sorted once and for all.

So, after all that discussion, I had the endoscopy this afternoon, which was just to check there was no reason I could not have surgery. He said that they found the sphincter was sitting wide open, when it should have been closed, so there was clearly a problem. Also however, he found food in my stomach and I had been fasting for 5 hours. This indicated that my stomach is emptying too slowly (another post transplant issue) which might affect the surgery. Therefore I will have to go back for some tests to investigate this - I think it involves drinking a radioactive fluid and then being x-rayed. Nice ;-) This should be done fairly soon. There are medications which increase gastric emptying speed so there should be something to help if this is a problem.

He did offer me the first date available for surgery, which was 19th Dec. However if I ended up getting open surgery then I might be in hospital at Christmas! No way!!!! So, I politely declined and will be getting it within the first 10 days of January instead. At least this means I won't be eating mashed potato for my Christmas and New Year dinners. Especially after I missed both of them last year due to being too unwell to eat, so am really looking forward to a great Christmas this year :-)

So, I'm not sure how I feel about all that really. I think he has painted the worse case scenario so that I am clear about risks - but hopefully it will all be plain sailing. It would be lovely to get rid of all the reflux symptoms and to be honest, if I didn't get this surgery and developed chronic rejection, I would never forgive myself. There must be a reason that I took part in this study...

I have other stories about starting the gym etc but will have to save them for later in the week. Enough for one night I think!

Spring Cleaning ....in November

So this week I have been on a mad clearing spree, which has seen me empty nearly every cupboard in the house! It started with a clothes clear out, which was well over due. I have been wanting to do it for a while (largely due to the fact I needed to make room for new clothes) but was waiting to see what kind of weight I stabilised at before I started throwing things away. I was fairly ruthless and a good few bags were filled. But that was just the start...I have worked my way round the whole house and found so many things I had forgotten I had! I also created an amazing amount of space in my hall cupboard when I finally got round to throwing out several boxes of overnight feeds and supplements that I no longer need. It's amazing how much space all my medical stuff took up. I do still have an entire (large) cupboard full of drugs but I can cope with that. It's very cathartic having a clear out...I have this notion that I need to get everything in order before January so I can start next year afresh. I like being organised :-)

Other big news is that I have joined the gym. Yes I did say gym. My physio referred me on medical grounds so I join a programme for the year and get a discount on fees. I had a consultation this week to discuss what I needed/wanted to do and on Monday I have my induction. Scary! I have never used gyms (bar the hospital ones) so it's all very new and intimidating. Everyone else always looks so fit! I have to start slowly and only do cardiovascular for the first month, and she suggested I attend the supervised sessions at first, so I can get some guidance. I will be reviewed at certain points to see if I want to add in anything else, like swimming (not keen) or classes. I really hope I enjoy this but the thought of my 10 mile walk is enough to spur me on!

Seb had his dog training tonight and he was really good! We had a different trainer tonight and she said that his walking to heel was excellent and that he must be a pleasure to walk!! I said he was, apart from the fact he runs barking at joggers. The suggestion is squirty water again - to take this on the walk and when he runs at a jogger he gets squirted! They will think I am mad but it's worth a try. It is so embarrassing because they probably think he is going to attack them, but I think he maybe just wants to run along with them ;-) He was great at his sit/stay and down/stay apart from the fact he gets bored after a while and starts looking round at all the other dogs, yawning widely as he does. So rude. We also started to learn 'the finish' for recall - where the dog is meant to come from sitting in front of you, round your back and end up sitting on your left side. We had to use treats to lure the dog round...but I only had to do it twice and he realised what I was asking him to do. I am not saying it's perfect yet but for the first go he was pretty amazing. I am rather bias though. The other thing we tried at the weekend was taking him to the country park with a 30m washing line (dog training suggestion) for practising recall. We were in a really quiet area with loads of grass, so he had free run to the end of the 30m. He loved it!! He was diving around all over the place but did come back each time I called ( I had treats obviously) so perhaps there is hope for him yet. I would love to allow him off lead in safe areas so maybe one day :-)

Here is a video of his recall efforts at the weekend (I am dressed like I'm on a trip to the Arctic because it was FREEZING)



On a different note, I had an unexpected letter this week telling me I was booked in for an endoscopy (camera test to look at stomach) in Newcastle for mid December. I phoned the transplant unit and the nurse said it must have been triggered by the results of the reflux study I took part in. I'm not that surprised because I still have bad symptoms of reflux despite maximum medication. Anyway, I then got a phone call today from the doctor who was doing the research and he said the consultant thought December was too long to wait, so could I go to Newcastle on Tuesday next week! I was a bit surprised but I suppose it's better to get this looked at sooner than later. The concern relates to the fact that reflux is a known risk factor for chronic rejection of the lungs (theory is that acid refluxes into lungs, which causes inflammation and scarring, which reduces lung function) so I do need to get this looked at. I suspect they may want to discuss surgical options for helping with this but I will find out more next week. I am not looking forward to the endoscopy though - I will take the sedation on offer, but if my bronchoscopy was anything to go by I will probably still be wide awake! However, I have had a few endoscopies in the past so I know roughly what to expect.

And for some cheery news - my friend Louise is doing much better now! She finally got out of ITU last week and had her tracheostomy tube taken out earlier this week...and they were talking about allowing her home at the end of this week! I have not yet heard if this is definitely happening but either way it looks like things are moving forwards at last! The other CF lady I wrote about just came off the ventilator a few days ago and has moved out of ITU to the transplant ward and is doing much better. I think she still has a way to go but is, at last, starting to improve. So good news all round :-)

Naughty Dog

I went upstairs and left Seb asleep on the footstool (he is allowed on this):




I came back down half an hour later and found him in my seat on the sofa, perched on top of a cushion! (this is definately NOT allowed!)




It's the way he is looking at me with such distaste.....seems like I disturbed his nap or something.

Trains and Fireworks

I had another post transplant first this week....I got on the train myself and went Christmas shopping in the city centre! It's been a long long time since I went on a train anywhere myself, and I'm not sure when I last went into town for Christmas shopping. The last few years most of it has been done on the internet, and last year mum wheeled me around the shops for some last minute pieces. What a completely different story this year! I wasn't even planning to go but my car was in the garage (again!) this week so I was sitting at home feeling a bit bored...then I suddenly thought, '0h, I can actually walk to the station and get on a train somewhere!' I was so excited I felt like telling the train conducter that I had a transplant this year and did he know how cool that was?! Only downside is that I spent more money (especially since I was on my own with no one to keep an eye), however I did get quite a few presents and I walked around for hours (carrying all the bags) and then had to walk back from the train station.....and I was still able to take Seb out!

This was especially impressive since on Monday I had been rather silly. I went out to put some bin bags out and saw the state of the patio...all covered in leaves. So I decided to sweep it all up and tidy in general, which involved a lot of moving around of garden furniture. I then progressed to raking the leaves on the lawn (the lawn is about 90ft long!) and after about 2 hrs I was near to collapsing and sadly it didn't look like I had done much! I had however filled the entire garden waste wheely bin - which I insisted Andrew look at when he got home to prove how much I had done! It was good exercise though and although I felt completely exhausted that evening, by the next day I was fully recovered. Amazing!

On a similar note, I was sitting here thinking about where I was this time last year, and I must say that last October was one of my worst months ever. I had a couple of admissions and one of them was the worst I have ever felt. I remember mum wheeling me into the hospital, me crawling into the bed and then refusing to get back out for the next 2 weeks. For anyone who visits me in hospital they will know that I usually get up and dressed no matter how bad I feel, but this time I just didn't move. I could hardly get to the bathroom with the breathlesness and mum had to wash me as I couldn't go in the shower or even stand at the sink. Half way through my IV's the infection markers started to climb again and I can remember how scared I felt, wondering if this was going to turn around. Obviously it did, and I am still here and still standing...but have come so far. It's weird to think that I have not had a chest infection since April now - longer than ever in my entire life!! It's a nice thought for such a dreary day :-)

Seb had quite a stressful week with the fireworks. He was ok last year, but this year he was out in the garden when one went off, and he got a huge fright and came diving back into the house. He then hid behind the curtain, in a corner, behind the sofa before finally curling up beside Andrew (even though he is not allowed on the sofa, and technically he was mostly on the sofa!) I did ignore all his antics, as apparently by reassuring the dog you are making them think there is something to be worried about. However I was quite bad and let him sit up beside Andrew, simply because he looked so sweet (Seb, not Andrew) and I felt really sorry for him.



Things are progressing well with Team Jac and I have a feeling numbers will be closer to 100! I will need to get these finalised fairly soon so I can work out places on the bus, which is taking us to the starting point. I do have the bus organised though (free of charge!) I am currently trying to sort out the toilet situation, as public ones half way through the walk are closed due to vandalism. Great. However, I am looking into this so hopefully we can find a solution. I also wrote to all the local businesses looking for sponsorship but sadly have had no response, which is disappointing. The only person to help was the lovely lady who runs a local beauty and health shop and she is giving me a gift voucher. I think I will have a wee competition locally with this as the prize (it will only benefit those who live nearby). I had no idea there would be quite so much organisation required, but it is all good fun and keeping me busy.

I will leave you with some pics of Seb wearing my hat...just because it is cute :-)

A Bumble Bee, Indiana Jones and some nuns....





I had another busy weekend! Friday night we popped round to Andrews gran's as Anne and John were coming up for a quick visit. I very helpfully offered to bring some dinner round, as they would be arriving quite late. I decided to try a new chicken casserole recipe. Cooking for other people is never a good time to try a new recipe! It was looking pretty good until I started reducing the stock and it just got saltier and saltier until I could hardly bare it - something to do with the entire packed of smoked bacon that I put in. I had a minor panic, until I decided to pour an entire carton of cream in...worked a treat and probably only added about 1000 calories or something ;-)

On Saturday we took Seb to the country park, as it was a lovely sunny day for the first weekend in ages. Everyone had the same idea and the park was the busiest I have seen it all year! This meant meeting lots and lots of dogs, but Seb got on really well and I think mixing with the dogs at training has really helped him. We were practising recall by allowing the lead to it's full extent, waiting until he was busy sniffing something or other and then calling him and rewarding him with a treat. He was doing really well, especially when he realised I had treats! I am hoping one day he will be reliable enough to be allowed off lead in safe areas. Maybe wishful thinking though.

We were at a Halloween party on Saturday night - me dressed as a bumble bee, Andrew as Indiana Jones and mum and dad were a pair of nuns ;-) It was rather amusing! My mum drove us to the party, so there was a pair of nuns in the front and me and Andrew in the back. Dad kept telling her to drive faster when we got into well lit areas in case anyone saw us. I was almost hoping we got pulled over by the police just for some comedy value.






We played that game where you wrap people in toilet roll to make them like a mummy - I had to be the victim for our team, since I am the smallest. I must say, it's rather claustrophobic being entirely wrapped in toilet roll - especially when they got me to spin round and round to make it quicker, and at the same time mum decided to wrap my head up so I had no concept of where I was spinning!



We also did douking for apples - i had a go at this, although could hardly get my head into the bowl because of the other lady's costume! This is me looking rather wet, and Andrew being force fed vodka jelly by the lovely Alison, because he didn't win his douking contest!




Yesterday we went to a new outdoor shop and I bought some walking trousers, waterproofs and Andrew got walking trainers...so we are all set now for some practice runs! Just need to find the time and the energy :-) There are lots of nice places to walk near where we live, so we really have no excuses. Speaking of walking, I am off now to take Seb out to practice his walking to heel and turns, haha. He is getting pretty good now and performed really well at his class last week. He did veer off to the side when doing recall though and at the last minute turned back and came right to me....I think he was just playing with us! Got a sense of humour that dog...