On Film

Emily has put together a wee video montage of the Team Jac walk!

Make an on-line slideshow at www.OneTrueMedia.com

News Just In...

A wee article in Edinburgh Evening News today about the walk - click here
I only spoke to the journalist yesterday (who covered the story before walk) so I didn't expect it to appear so soon! Apparently there is a photo in the paper but not online - I haven't even seen the paper yet.

I have 2 extra sessions at work starting from this week (so 16hrs/week now) plus I somehow signed myself up to facilitate 3 PBL sessions...and have CF clinic somewhere in the middle of all that. That was sensible planning for the week after the walk ;-) Seriously though, I feel absolutely fine now and also wasn't too tired after my first full day at work in a long long time!

Might not be saying that by the end of the week though haha...

We did it!!

Saturday was the big Team Jac walk and I am pleased to say that myself and Seb made the whole 10 miles :-) There was an excellent turn out with around 160 team members and all plans went really smoothly - everyone being on time and the buses (thanks to McKechnies of Bathgate and Jack Simpsons mini buses) leaving promptly, which was great as we had to do a couple of runs to get everyone to the start point in Elie. The weather at that point was cold but dry and we got off to a good start - however the predicted showers turned into a continuous downpour! Spirits remained high though and I just saw it as an extra challenge to be overcome. The Crusoe hotel in Lower Largo had kindly set up a room for us to use while catching a coffee/pint and a chance to dry off a little before the last few miles. I have been assured by those wearing pedometers that it was probably closer to 11-12 miles in total, so that's even better! I managed the whole route without too much difficulty - I didn't feel too tired, my lungs were top notch and gave me no trouble but my back was a bit of a hindrance. We were walking on sand for a good part of the route and this played havoc with my back, which resulted in a very sore hip the next day. Even by today though I am much better and walking (almost)in a normal fashion again.

Seb was a total star and trotted the whole way, closing his eyes against the rain and wind, but never stopping. He was still hyper when we got home and appears to have had no ill effects at all....clearly fitter than I gave him credit for!

Another high light of the weekend was finally meeting my friend Emily. As Emily was staying with us we got plenty time to catch up, and 10 miles of talking non stop was surprisingly easy. Emily astounded herself by also completing the walk, so we were a very happy pair. Amusingly Seb took a real like to her and followed her around for the entire weekend. During the walk he insisted on walking at her heel, even though I had the lead, and he wouldn't go on if she was behind. I like to think he knew it was hard work for her and was just making sure she was ok :-)

On the money front we have now smashed the £10,000 mark and money is still coming in from offline collections. I will be adding this all to the Just Giving site as we get it, so keep an eye on the page for the latest total. I cannot believe the generosity shown and I hope this money will go a long way to helping others in my situation.

I have been looking back at some old blogs to see what I was doing at this time last year. I was a couple of weeks post transplant at this stage and a one of the quotes from this time seemed rather apt;

"I also had my lung function repeated today and it was 50%. I must admit to feeling quite disappointed as I am desperate to see a big improvement and just dream of having near perfect lung function. I just wish I could see into the future and beyond this immediate recovery period because at the moment I am still finding it hard to imagine myself doing 'normal things' like taking Seb out for a walk. I think the difference will be when I get back home into my own environment and start to discover all the new things I can now achieve".

If only I had known quite how far I would come! It's almost too easy to forget what it was like last year. Even after I got home from the transplant I could still only walk a few minutes down the road. It has been a great year - some ups and some downs, but more of the ups - so maybe this time next year I can look back and see how far I have moved on again. 20 miles next year anyone? ;-)

I will leave you with some pictures of the walk - I have all my pics uploaded to a website, so if you want the link please email me (weejaqAThotmailDOTcom) as I don't want to put the link in the public domain, as other people are in the pictures.

Before the walk - waiting on everyone to arrive

My group ready to start the walk in Elie

Arriving at the end...rather wet!

4 days until big walk.....what have I done???

I cannot believe the Team Jac walk is on Saturday - it seems to have suddenly come around and I don't really feel ready! In fact, I have very helpfully just put my back out moving plant pots on the patio at the weekend. I was fine at the time but woke up yesterday and was largely unable to move. I have been walking bent over all day and looked a complete state at work - fortunately I just had a meeting, one home visit and journal club - but tomorrow I have a full clinic so will be hobbling back and forth to waiting room like an old lady. From past experience it does usually improve over a few days so I am hopeful that I will be recovered by Saturday. Otherwise the walk might take me a bit longer than planned ;-) I am really looking forward to the big day though and am just tidying up last minute plans now - printing of team list, maps etc. I popped into my chemist today and he had got me a big supply of blister plasters for first aid kits I want to make up so that was really good - it's definately who you know. I am also looking forward to Emily coming up for the walk - we were never allowed to meet pre transplant due to cross infection risks but now we can meet properly, in person, for the first time :-)

I have also been shopping already with my birthday vouchers and I am impressed with how much I managed to spend in a 2 hr period. I then had to return to the shops the following day after deciding the jeans I bought were too tight. I came home with 2 pairs of shoes. Not sure how that happened really. I still have Debenhams vouchers, as does my mum from her birthday, so we will plan a joint shopping spree soon - I do love vouchers, as it really is guilt free shopping :-)

Apart from putting my back out, I did have a really productive bank holiday weekend with lots of things done in the garden. I am really pleased with how it is looking - most of the plants have grown back in the rockery and all the ones in pots are doing really well. I think we are going to try and sort the side part of the garden, which is a bit redundant. I want to move the bench over there and put some slate down - but first we have to get rid of the ton of top soil sitting in a bag (came from leveling ground for hut last year). So if anyone needs some top soil, feel free to come and help yourself. I am being serious!

Tomorrow mum is coming through for a catch up after my work - I seem to have hardly got a chance to see her properly in last few weeks due to all the buzz. She was in Amsterdam at the weekend but what she hadn't know was that I had organised for 5 other couples to go with her and dad! She met 3 couples at the airport here, then her sister and her husband in Amsterdam airport, then Andrews parents were at the hotel. I don't think she could have taken any more surprises!! It was well worth all the organising though because I think they had a fantastic weekend.

I will leave you with some pics of the garden...

Violas in greenhouse
I think I was only meant to put one seed per pot. I blame my tremor for the fact there are clearly about 2o plants in each pot ;-)

Marigolds

I have forgotten what this is called - it's very nice though!

One half of the rockery

Other half!

Annual Review...results now in!

No rejection detected at bronchoscopy, everything looked fine. Lung function was 2.73 litres, which equates to 99.7%!! I am going to get 100 one of these days ;-) X-ray looked fine, BP was perfect and oxygen levels 100%. Can't really ask for a better report!

The bronchoscopy itself was not too bad - I don't remember a lot. I do remember the 3 attempts to take blood and the 4 venflon attempts - but it still doesn't beat the 10 venflon attempts last time! She said I should wear gloves in the waiting room to keep hands warm - I told her I was wearing 2 jackets, gloves and a scarf in the waiting room!! Might try those hand warmers for next time. I believe I may have had 18mg of midazolam which is an all time record. It was given in 2 lots, which would suggest I became a bit chatty mid bronchoscopy. This sounds familiar. I was probably just making small talk ;-) I slept for a good few hours (funnily enough) but when I woke up was desperate to escape the ward. I asked the nurse looking after me, who said that was ok - so we headed to Pat's and spent the afternoon there before coming back about 7.30pm. I went to see Louise and mum took my stuff up to the ward - where she met the doctor. The very angry doctor. I was supposed to have had an x-ray (oops, forgot about that) so the nurse shouldn't have let me go. They had been looking for me all day! Mum then ran down to the ward Louise was on to send me back up, but when she got there the doctor was also there -who then thought I had been in Louise's room all day. I then totally enraged her by asking if the porters could not just get me from Louise's room so I could stay and chat! After a rather incredulous look, she did actually phone radiology and tell them where I was - I think she realised it might be nice for Louise to have a visitor hehe. It was lovely to have a good chat with Louise and we talked about all sorts and the time flew in. She is still struggling a lot just now and back on 24hr oxygen and having problems with her heart at the moment, which they are trying to treat. Keep the good thoughts coming and I hope a period of stability is not too far ahead now.

My CF doctor had written to the transplant consultant about restarting one of my antibiotics (azithromycin) because it has anti inflammatory properties which may help the sinuses and joints. The transplant doc was a little reticent as they tend to keep this drug in reserve should I later develop chronic rejection (very different to acute rejection, and tends not to occur until after the first year). He decided however that I should trial it at a low dose because there is a balance of relieving my current symptoms and thinking about the future. If it doesn't work, then I stop it but if it helps I can carry on long term. I asked about reducing my steroids but they are not keen to do this at the moment (mainly due to having rejection in past) so everything is really to continue as before.

We then had to dash over to the other hospital to see the surgeon about wound pain. He is sure there is no hernia but is a bit puzzled by me. There are a number of possibilities - he can feel the permanent stitch under the wound and it appears to have become knotted, but he didn't think that should cause as severe pain. It could also be due to adhesion's (scar tissue) or the pain might be getting referred from somewhere else - abdominal pain is hard to localise as you often feel it in an area remote from the problem! My peg tube wound is a likely suspect as he tells me that it was extremely inflamed around the stoma so he removed copious amounts of muscle, which he would expect to be sore! Alternatively it could be pain from stomach. Because the pain comes on after eating, the first step would be to do another endoscopy and look into the stomach. He could do this very soon but unless the pain gets much worse I am going to wait until my next outpatient appointment in 3 months because I just need a break from procedures at the moment and I am kind of hoping it all just settles down (as is he!) I can just call if I want it made sooner though.

So, I am now back at mum and dads and Andrew is coming to pick me (and Seb) up after work. I am so so tired after a hectic few days and getting virtually no sleep in hospital last night, so straight to bed. Then work tomorrow.... !

Party Weekend!

I had my big celebration party on Saturday night - to celebrate both my 30th birthday and 1st transplant anniversary. It was also my dad's 65th birthday so I allowed him a small piece of the lime light. Just a small piece though ;-)

I treated myself to a french manicure on Saturday morning before heading to mum and dads for lunch time. My aunt and uncle were up for the party, as was Corey - so we all had a nice lunch/dinner in the afternoon. It was then a bit crazy as we all tried to get ready - myself and mum having to go to the Vigil Mass before the party as I was doing an appeal for the Team Jac fundraising. I had all my make up done before Mass and did wonder if the glittery green eye shadow was appropriate for getting up on the altar ;-) It was a quick dash to finish getting ready and then dad dropped me down at the party, with everyone else walking down. I might be able to walk without getting breathless now but I still can't walk far in high heels!

The party was great and the time flew in - I hope I managed to speak to everyone and I did try my best! I wanted to spend so much time with all my friends and family and there just wasn't enough time. I did however manage to dance....a lot :-) No breathlessness, no tiredness and no coughing. At uni I loved going out dancing but even then I didn't have nearly as much stamina and would need to sit down between songs. On Saturday I hardly sat down at all! It was a lovely night and hopefully everyone enjoyed it as much as I did. A wee thank you to all those who travelled so far to come as well - you know I really appreciate it :-)

Me and mum before the party

Me looking strangely excited about cutting the cake!

Dad getting his cake!

Me getting my tuppence worth in...

Me with Andrew and his mum and dad (Anne and John) and my brother in law Ross

Once back home it was about 2.30 am before I got to bed, and I still hadn't even had time to open all my lovely presents! I had to be up for 9am Mass though as I was speaking again and also at the following Mass. I think that gives me Holy brownie points for quite a while. I felt the talks went well and there were a few tears in the congregation. I hope I also got across the important points about organ donation, so that perhaps another life can be saved from someone making that wonderful gift. From donations made at the 3 Masses we raised an astounding £2125 which I have added to the offline total on the just giving page - taking us well over the £7000!!!!

Following Mass, I caught up with Andrews friends and then by the afternoon I finally got to open my presents! I am overwhelmed by all the lovely gifts and I also received lots of vouchers so am building up to a massive shopping spree. It's going to be a good one!! I think I should start clearing my wardrobe now in preparation. I had lots of helium balloons from the party so we stood on the veranda and let them go....I think you are allowed to make a wish so hoping that everyone's wish comes true.



We then had some dinner and headed down to Newcastle - we were so tired that I just had a shower and headed to bed as soon as I could. Up at 6.30 am this morning to get to clinic for 7.30am...talk about an early start. The bronchoscopy went well but I will not get results until tomorrow at clinic so will do a full update once I am back home. It looks promising so I am hoping for the all clear and a glowing report to round of the celebrations.

First Anniversary

Well today is a huge mile stone - the one year anniversary of my transplant. At 3.45am on the 25th April the call came and I started on this amazing journey. Although I have so much to reflect back on I will leave that for another blog. I am looking forward to the celebration tonight and feel so grateful and so happy to have reached this stage.

I would like however to leave this entry as a remembrance of my donor. Without her generosity I would not be here and for that I am eternally grateful. I planted an azalea last year in her memory and in the last few days the buds have appeared and it is ready to flower. Please spend a moment to think of her and her family today, and to think of those who have not been as lucky as myself. I also pray that the call comes soon for all those waiting on that gift of life.

Wicked

We all had a great weekend down at my aunty's and it was a lovely way to round off mum's birthday celebrations. We had quite a long drive down on Friday but arrived to a fantastic meal - everyone had Beef Wellington but because that has pate in it I had steak instead....first time I have had it since my fundoplication and it was bliss!

On Saturday we headed into London for lunch time and Corey came to meet us as another wee surprise for mum. Lunch at Harrods (of course!) was lovely and we then went to the matinee performance of Wicked. It was a fantastic show (it's the story of the wicked witch from The Wizard of Oz) and everyone really enjoyed it. I think dad only fell asleep a few times ;-) On Sunday we did a bit of shopping and I managed not to get carried away. I did buy some new make up with my birthday money so I can glam myself up for the party on Saturday.

I picked Seb up on Monday - he gave me the cold shoulder and was very huffy! He did however have a great time at Gillian's and was up to all sorts. I think the worst incident by far was the stealing of her dad's salmon fillet. Yes, you read that right. Her mum had put the plates out on the table which was left unattended for a few moments and Seb was up on the table and grabbed the whole fillet - then ran. How embarrassing.

I have now found the link the online version of the local newspaper article. Embarrassingly when I went for the ultrasound today the nurse asked if I was the lady from the paper haha. Then I went into work and found the article photocopied and sitting on the reception desk for everyone to read - all good for awareness though! The money is still coming in for Team Jac and we are flying over the £4500 mark....go Team Jac :-) Click here for article.

I had my ultrasound scan this morning and they couldn't see anything wrong at the scar site. This is good news but in one sense is rather annoying because I am still getting lots of pain at that site when I eat or walk. I am seeing the surgeon on Tuesday though so will just have to wait and see if anything else has to be done. I am getting a bit nervous about going down to Newcastle and getting my year bronchoscopy - the apprehension that they will tell me something is not right when I am feeling so good! I would rather carry on in blissful ignorance. Hopefully there will be nothing but a glowing report but I will just have to go with the flow and take it as it comes. I am however looking forward to hopefully seeing Louise, as she will be at clinic the same day. She hasn't been doing very well and has been in her local hospital for the past few weeks - her liver is now playing up which is something she could do without just now. So keep the prayers going please.

I have had some good responses about the CF booklet - one of the consultants has contacted me about getting more printed copies because he thinks all his patients should have one! Also one of the doctors who helped with the booklet is hoping to link to the online version in a journal article that is due to be published. It makes me feel like all the hard work was worthwhile.

Well it is set to be a manic weekend so I may not be able to update until after I get back from Newcastle (hopefully Tuesday night if all goes well). I am heading to mum and dads for lunch on Saturday and the party at night, before heading to Newcastle on Sunday. In between all that though I am speaking at three Masses about the walk - the vigil and two morning Masses, so I am going to be busy busy, and rather tired!

I will leave you with a picture of Seb looking angelic...

Birthday Girls

Wow, it's been a very hectic few days! I had a lovely birthday weekend and although I am now 30, I still don't look anywhere near that age - a patient at work called me a 'wee lassy' the other day ;-) On my birthday I went out for lunch in Edinburgh with some friends, which was lovely. We went out for a family dinner on Easter Sunday and I am having a 'double celebration' party next weekend - to celebrate my birthday and also my 1st transplant anniversary which will be on the 25th April (also my dad's 65th birthday!) I can't believe it has nearly been a year since the transplant - the time has been flying in but it has been a fantastic journey and I am looking forward to what the next year will bring.

Andrew had Monday off work so we went on a long walk in preparation for the big day. I did really well but I was very sore the next day! Not so much the muscles but my knees and hips really flared up, which was a bit annoying. It has eased off again though so no pain no gain eh? The walk was lovely - we really only have to walk about 10 mins from my house to get fantastic scenery. Seb of course had a great time and seemed to manage it no problems, so I am hopeful he will be able to do the 10 miles. Maybe he will have to carry me :-)

Saw this plant on our walk - anyone know what it is?

Tuesday was a special day - my mum's 60th birthday! We headed to mum's in the afternoon and she opened her presents, which she was really pleased with. One of my gifts was a photo album I got made up with the story of mum's life - photos from when she was a child and then through the years - I think it brought back some good memories :-) We had quite a few surprises lined up too! We had a big family dinner booked but what she didn't know was that her sister had come up from down south (mum thought she couldn't make it) so she was so happy to see her at the restaurant! I had also made little paper gift bags for everyone at the meal with small gifts, so that went down really well. She also found out we are all going down to her sisters this weekend, with a day into London to have lunch at Harrods and go to the west end show 'Wicked'. Not only that but she also got a surprise weekend in Amsterdam for both her and dad, which we had been making lots of lies about to make sure she had kept that weekend free! There has been a lot of secrecy - I am worried by how well I have been managing to lie. After the meal we had lots of family and mum's friends at the house and a great night was had by all :-)

I finally have a date for my abdominal ultrasound which will be next Wednesday, so hoping that will shed some light on the pain in my wound - it is now getting sore after I eat which is not a good incentive for my gaining weight! I will be seeing the surgeon soon so should know a bit more after that.

Other news is that the article on Team Jac was in the local paper and I thought it was pretty good (apart from the error where they said I founded the Live Life Then Give Life' charity ;-)) I couldn't see it online so will try and scan it when I am back from the weekend away.

So, off to bed now as have an early start to drop Seb of at my friend Gillian's - she may regret agreeing to Seb-sit! The heading down south for what I am sure will be a lovely family weekend!

I will leave you with a picture of my new ring (since some people asked me to post it!)

Catching Up

The organ donor day campaign was a big success and there was a 15 times increase in the normal daily sign up rate with 3222 people signing up! I tried to do my little bit by handing out some leaflets and transplant UK pens at work. I did manage to interrupt a meeting though - bursting into the room shouting 'free pens' before realising there was actually a meeting taking place. Oops. I perhaps should have apologised and left immediately - instead of apologising then going round handing everyone a pen ;-)

Tomorrow I am meeting with the local MP, Jo Swinson, so that the local paper can take a picture of us together. I spoke to the journalist on the phone so there should be a little feature in next weeks paper about Team Jac - I will post link if it's online. Hopefully it will raise some local support...and sponsorship :-) I have been sorting out action plans, group lists, maps etc for the big day so hopefully everything will run smoothly. It is rather like a military operation now - I think I will take a whistle on the day ;-)

The printed copies of the booklets arrived and I am really pleased with them - they look great (if I do say so myself). It is worrying that am generally more excited about my little stick men illustrations though ;-) I have made a start today in sending them out to CF units in the UK - there are about 23 large centres and also some smaller units so I am a bit googly eyed printing out online postage but should get that done by the end of the week - I started this project before I had my transplant so it is nice to be completing it in the run up to my first year anniversary.

It's my 30th birthday on Saturday - I can't believe I am nearly 30. The average life expectancy for CF is 31 years old - I intend to blow that one out the water and for the first time can seriously believe that to be true! I am going to have lunch with friends, then dinner at mum and dads and going out for dinner on Sunday with family. My ring arrived early but Andrew won't let me have it until Saturday - not fair!! I am looking forward to a good weekend though:-)

I will leave you with some pictures of Seb. He was being very quiet in the garden so I opened the back door to see what he was doing - he was sitting up in the chair like this is a very normal thing for a dog to do. He isn't really a normal dog though..

Donor Day - Tuesday 7th April

Holly Shaw received a kidney transplant in October last year after waiting 4 years on the list (receiving dialysis three times a week). While recovering from her transplant in hospital she heard the news she had won the Battlefront campaign. This is a Channel 4 programme allowing young people to fight for something they believe in. In this case Holly chose organ donation, and so the 'Gift of Life' campaign was born. She has done so much work already but one of the larger campaigns is for tomorrow - "Donor Day" - where people are setting up stalls all around the country to educate and sign up people to the organ donor register. The theme being "Become a 2 minute hero" - because that's all it takes to sign the register - the same amount of time as it does to boil the kettle for a cup of tea...





So, go on.....put the kettle on and sign the register!

Click here for donor register
Click here for Holly's blog
Click here for Gift of Life webpage

Booklet is online!!!

The 'CF and Relationships' booklet that myself and Emily have been working on for AGES is finally available for download at the CF Trust website (click here). It has also gone to print and I should have the actual booklets by next week to send out to the CF units. So much time and effort has gone into this project and I am delighted with the final outcome. We have had good initial feedback from people with CF and I hope it is a useful resource for many people - it certainly covers lots of topics not dealt with elsewhere.

I have also been doing lots of work on Team Jac - making up groups and an action plan for the day. If you are walking you should have got an email today - so if you didn't, let me know! I can't believe how much we have raised so far and we are not finished yet :-) I also had a call from my local MP's (Jo Swinson) office in London - she is keen to help with publicity and we are going to set up a 'training walk' together and they will invite local papers to attend. You know how much I love being in the paper....

I was facilitating again last week and still really enjoying it! I don't mind reading up all the information before the session because it's strangely enjoyable re-learning medical topics I used to know and probably still should. I am sure the novelty will soon wear off! After the session I had coffee with my friends, which was lovely. One of my friends is about to have her first baby and I am so excited for her - I plan to be like one of those pretend aunties who the child later discovers is not a real aunty haha :-)

I had a busy weekend catching up with some gardening things - we spent Saturday buying and planting seeds for various vegetables, so fingers crossed we don't get a hard frost now. Maybe nothing will grow but it's good fun trying! I might post some photos if anything starts growing :-) I am also currently growing some bean sprouts in my study - apparently you just sit the seeds on wet kitchen roll and they grow. We will probably end up with about three bean sprouts for our stir fry....

We took Seb for a long walk at the park on Sunday but I didn't cope too well. All my joints have flared up for some reason and instead of my knees this time it's my hips and elbows - weird combination! I am also still getting this stitch pain in my wound when walking, so have left a message for the surgeon in Newcastle to see if I can get a sooner appointment. Hopefully it's nothing to worry about and probably just some adhesions from the healing - very annoying though! At this rate I may need carried most of the way around the walk - but there are 174 people - so I'm sure they can cope ;-)

Andrew also took me shopping for my 30th birthday present - he is getting me an eternity ring :-) It was quite hard to find something that looked good with my wedding and engagement ring but we did find a lovely ring. Only downside is that because I am a non standard ring size it will take a month to come in!! It would have been nice to have it before my actual birthday but I think it's worth waiting to get the ring I want and I am rather excited.

Prayers for Louise

I am posting this separate to my Berlin post for obvious reasons. I just wanted to ask people to keep my friend Louise in your thoughts and prayers at the moment. She had her lung transplant towards the end of last year and you may remember she had a very rocky time, with weeks spent in ITU on several occasions afterwards. She has not been very well lately and they finally did scans and biopsies and now realise she has "Post Transplant Lymphoproliferative Disorder (PTLD)" which is a serious condition which can occur in people post transplant. She is currently undergoing chemotherapy treatment for this in hospital, so please keep her in your thoughts and pray for a positive outcome of this treatment. She has been through so much already - with the new lung already severely damaged from post op complications so needs immense strength to overcome this latest hurdle - but I am sure she can do it.

Berlin

Well, we got back from Berlin last night and had a great time. Apart from the weather - it rained, it snowed, hailed, sleet, wind ....and then some more rain. At some points I have never felt so cold - and I was wearing a waterproof ski jacket, gloves, hat and 2 pairs of socks haha! Not that we let the weather stop us and we had a fully packed 3 1/2 days of being out all day seeing the sights and sheltering in various coffee houses :-)

We started off with the main attractions - below is picture of Brandenburg Gate (previously the gate to the city). Just around the corner is the Reichstag building, which is the German parliament. It was damaged during the war but has since been reconstructed - they added a glass dome at the top, which you can go up to and walk up the spiralling ramp which gives views across Berlin. We tried to visit three times in total - the first twice, despite it being early and pouring with rain, the expected wait was at least 1 1/2 hours to get in and we weren't daft enough to stand outside for that long! Eventually we turned up at 8.30am on the last day and walked straight in - hardcore tourists that we are ;-)

Inside glass dome of Reighstag (it is open at the top, which is why I still have hat on!)

The first afternoon we did the tour bus so that we at least got to see the main sights of Berlin from the dry and warmth of a bus. It was a hop on hop off but we just sat for the whole tour. Afterwards we visited the holocaust memorial (see pic below). It is a construction of concrete blocks which represent the lives lost. Once you walk in between the blocks they get taller and taller until you feel like you are in a maze. It had a very eerie atmosphere. There is a small museum underneath the site, which was interesting and horrifying at the same time. I am embarrassed to admit that I don't remember covering the Holocaust at school and much of what I read was an eye opener to say the least.



The next day we visited the DDR museum, which depicted life for Germans living under the DDR. Again very informative and one of those museums where you get to pick things up, open things and generally play. I think that part is for children but I am still a child at heart so I am allowed. We did of course visit the shops but didn't buy much -largely due to the exchange rate on the euro. I found the whole trip very expensive with entry to museums and my need for frequent coffee breaks ;-) The main shopping streets were home to lots of designer shops, which are not my scene. I like a bargain and there were none to be seen. We did stop for a coffee in KaDeWe, which is the Berlin equivalent of Harrods.


Berliner Dom is the Cathedral and was very impressive. You can climb the stairs to the top (all 298 of them!) and the view is impressive. It was a bit windy though...

No trip is complete without a visit to the Zoo and Berlin has a very large, and very old zoo. It is home to the famous Knut the polar bear, who was in the news over the controversy of hand rearing him after his mother rejected him.

Knut

Andrew and the penguins

On the last morning we had time to visit Checkpoint Charlie, the crossing point between East and West Berlin during the war. Finally the sun came out...

Inside Checkpoint Charlie museum - a tiny car used to smuggle people across the border!

So all in all we had a lovely time - but to be honest I would never recommend going in March! We saw everything we wanted to see but we were rather cold and wet for a large proportion of the time - especially since Berlin is so massive that even using the brilliant public transport system, we still did a lot of walking! At least it is good training for me. It was just nice to get away for a few days and not think about work, the booklet, Team Jac or anything else for that matter. Sometimes you just need a change of scene and although we didn't relax in the physical sense, we were able to relax mentally which is more what I needed just now.

Now I am home it is back to reality. I was welcomed home to some dinner last night though, as mum and dad had brought Seb back and made us something to eat for arriving home. Seb was rather over excited by our return and surprisingly there was no cold shoulder treatment. He was more interested in the fluffy bunny toy I brought him back though :-)

I have a meeting about psychiatry training today, I am faciliating tomorrow at the university, I have finalised the booklet pdf and it is being sent to the printer asap and the CF Trust will be uploading the booklet immininently. It's all go, go, go....but I am ready to get back into the race.

Annual Review

I had my annual review at CF clinic on Tuesday - kind of like a yearly MOT. In some ways I didn't see the point because of the shiny new lungs but then I still do have CF and all it's other problems! My lung function was 90% (it always reads lower on their machine) and chest sounded great. I did well on my exercise test and didn't get out of breath at all! The main issues we chatted about where the problems swallowing and stomach issues. I am eating solid food again but still finding food sticking at least a few times a day, which is irritating to say the least. I had lost a bit more weight (I was 48.4kg the day of surgery and am now 43kg). Facially I don't look as if I have lost anything but I had to go and buy some kids jeans the other day because even my size 6 ones were loose. Now that is just wrong! However despite the eating problems I have also started to get reflux symptoms again...so there is no way the surgeon will want to slacken the wrap off. So I have been restarted on my anti-reflux drugs but at a lower dose than before - that seems to be helping with the reflux and I just hope with time I can eat a bit more normally again. It has just become a chore again which is frustrating. In the meantime the dietician is restarting some of my other supplements - bleugh - but better to nip it in the bud before I become a tiny rake again ;-)

We also discussed the sinus pain which is still pretty bad - and although I started on that other tablet I am still taking a lot of heavy duty pain killers every day. I am seeing the pain specialist next month again, but the CF consultant wondered if my sinuses had got worse because one of my pre transplant antibiotics had been stopped (azithromycin). This drug also has anti inflammatory properties and anecdotally appears to help quite a few CF people with sinus problems. It can also help with Cf related joint pain - which has also got worse since my transplant. So it might all be related. He is writing to Newcastle to see if they have any objections to be restarting this - so fingers crossed I get the go ahead and it actually helps!

Seb is acting very oddly this week (well more so than usual!) I had to go to CF clinic straight from work and since it was the annual review I didn't get home until 4pm - so he was on his own all day. He refused to greet me when I got in and was rather huffy all night. Then the next morning when I was leaving he hid behind the unit in the living room and refused to come out! I had to move all the furniture and physically lift him. Then yesterday when I went out he hid under the bed - so far under than neither me or Andrew could reach him, so we had to eventually lure him out with a sausage. Clearly he really objects to being left for more than a morning! Amusingly though when I got home yesterday there was no Seb at the front door. I came into the hallway - no Seb. I went upstairs and a very sleepy little dog was bumbling out of my bedroom. I must have left the door open and he had clearly had a lovely morning in my bed. I do mean actually in it - he had pulled back the covers to make sure he was well and truly comfortable. I made up for leaving him alone all day by taking him to the country park for the first time this year - it was such lovely weather today and so warm. He had a great time running around and sniffing and I felt much calmer and less tired spending some time in the sunshine.

The other thing I have been thinking about is that it is one year to the day that I had my false call (or pretend transplant as I like to call it). Click here for last years blog post ( 19th March 2008. ) That was one of the worst times in my life but it now seems like a distant memory and sometimes I think it didn't actually happen. It is so hard to believe the difference between that date last year and today. It is a million miles apart. It is good to look back from time to time and see how far I have come but even more important to keep looking forwards....

Here I Am

Thought I would do an update before the next week starts! It's been quite non stop for a few weeks and I am feeling really tired - although I think I am superwoman I have to remember I am not...and probably still need a bit more rest than the average person. I have possibly been doing just a bit too much of late but my mum likes to say 'a busy mind is a healthy mind'. Apparently.

I mentioned that last weekend I was speaking at Mass (the vigil and morning mass) in South Queensferry and the donations were so generous, totalling £700 for Team Jac. I was overwhelmed with the reaction and so delighted. After Mass on Sunday we headed up to Leven to have a look around at car parking, where the bus could park etc. There does seem to be quite a lot of car parking so fingers crossed that works out ok for people. I also spoke to someone in Leven bus station who gave me a contact to discuss using the bus station for parking our own buses. They didn't think it would be a problem so hopefully we will get that sorted out soon and I can give everyone some more information about the exact meeting point. I will be sending out teams imminently and hope to be quite organised by the end of this month. Caps are ordered and after a last minute run on grey (although this was rigged I think) I just decided to get half of each. Keep everyone happy I hope!! We were also going to walk up the only hill during the walk (Kincraig point, which is near the beginning) but when we got to Elie it was so windy we could hardly get out the car! So we just went to visit my friend in Fife instead :-) I hope we get nicer weather on the day...

I enjoyed work again this week and kept myself busy as usual. We did also have a team lunch on Tuesday which was nice as I got to know some of the nurses a bit better. I was also facilitating at the university on Friday, which again I enjoyed. The last time the scenario the students were looking at was acute confusion/dementia so I was familiar with the material but this week was digestion and absorption which I can hardly remember anything about, so had to do a lot more reading before the session. I only got the notes on Thursdsay night, because I had an appointment in Edinburgh for most of the day, so that was nice bedtime reading!

I also caught up with some other bits and pieces including making invites for Andrews Gran's 90th birthday - I made quite a mess and got glue all over the glass desk in the study. Mum and dad came on Friday and mum spent ages cleaning the desk for me, as well as helping me catch up with other chores as I was starting to feel a bit stressed with everything catching up. The CF booklet was meant to be uploaded to the CF Trust website last week but on proof reading they noticed quite a lot of errors - nothing major, just things like the wrong length of hyphen for different uses, which I didn't even know made a difference! So I have spent a lot of time fixing these problems but am now waiting to get some more information on the medical contributors and then it will be uploaded - yay! We can then go ahead with publishing 100 copies to distribute to CF teams in the UK. The printing costs are being covered by the Gary Torrance Memorial Fund. Gary was a very close friend of Emily's (who I am working on the booklet with) and he sadly lost his battle with CF a few years ago. It is very kind of the charity to support this venture but I am sure it will be worthwhile and prove helpful to many people with CF.

It is Andrews 30th birthday today so we had friends over last night for a race night (one of those DVDs you can buy with horse racing game). Some of them came to watch rugby during the day but I am not a rugby fan so I just pottered about getting dinner ready etc. We had a nice dinner and then played the racing game - I lost all my money so just as well it was fake! Quite a few people stayed over because his friends are all spread out now - coming from all parts of the country. It's nice that everyone makes the effort :-) Seb was getting a bit fed up because we had to use his tiny leather chair and his foot stool for sitting on - so he spent quite a bit of time padding up and down staring at people in the hope they would move. Not sure if I mentioned the tiny leather chair - dad sent it through for him! It was mum's chair when she was young and is basically a miniature leather arm chair. I must get a picture of him sitting in it. In his usual attention seeking behaviour he managed to get himself shut into the spare room twice during the evening (where he is not allowed) and had to be rescued.

Anyway my most exciting news is that we are going to Berlin on Saturday!! It is my present to Andrew for his 30th and it was a secret so I couldn't mention it until now. It will be our first holiday out with the UK since the transplant - we last went abroad in 2005 before I became more unwell. We are going for 4 nights so should have plenty time to take in the sights (we have never been before) and hopefully we will get some nice dry weather. Surprisingly I did manage to get travel insurance to cover my CF and transplant (and everything else) but it was really quite expensive and there was only one company who would even look at me! Costs should come down the further down the road I get and once I have been free of hospital admissions for a year. At least I got it though and we can go without worrying :-)

I will leave you with a picture of Andrew's home made birthday cake. I would never be good at cake decorating but the cake tasted nice which is the important part!!

Manic

This is to say I am still alive but having a manic week. It's Andrews 30th at the weekend so organising things for that, finalising the booklet for the CF Trust to upload and working tomorrow facilitating. The jump in the Team Jac fundraising total is largely due to the £700 from the appeal I did at church last week :-) I will update more fully when I get the chance!!

Another good week..

I have enjoyed another week (or 2 mornings rather!) at work and it is really nice to get back into some sort of routine. Makes me feel more normal (if I could ever be described as normal). Only thing is that I feel frustrated by is not having more hours at work because it is hard to get all I need done in the time I have. On a Tuesday morning there is the team meeting and then I usually do a home visit and anything that needs doing in the day hospital and on Wednesday morning I have clinic. So it doesn't leave much time for dictation and tying up loose ends etc. Who ever thought I would complain about not having enough time at work?!

I have been trying to take Seb for longer walks this week in preparation for the walk but must admit to being a bit worried about managing the 10 miles. I would like to have started walking more at an earlier stage but couldn't because of my foot.....but I am sure the adrenaline on the day will see me through :-) The foot has been better with these insoles but does still get quite achy at times. It has now started aching when I am driving when in that start stop traffic. Perhaps I need a chauffeur...

I have been feeling very busy of late so have made a conscious effort to include some relaxation time, which has largely been spent making cards. I used to make hand made cards quite often but while I was waiting for transplant, although having the time, I just couldn't be bothered. I have got back into it lately and find it a good distraction. I am pretty messy though and end up with glue everywhere. I also never measure anything - just stick and hope for the best. I get that from my dad - he is very good at DIY but I can't say a lot of measuring or preparation work goes on. Just hit it with a hammer and see what happens.... ;-)

This weekend I am going to St. Margaret's church in South Queensferry to speak about Team Jac. The priest there is a good friend of my friends mum, so at the time of my transplant his parish were praying for me. He has now very generously invited me to speak at the vigil and morning Mass this weekend and his parish will offer donations towards the walk. I think I better write down what I am going to say or I could end up going on and on and on! After the Mass on Sunday we are hoping to drive up to Leven to further investigate car parking etc for the walk, and also to attempt part of the walk called Kincraig Point. I am led to believe this is the only hill during the walk, so we are going to check it out and make sure it's suitable for everyone. Basically if I don't think it's that bad, then anyone will be able to do it. I hate hills!!

Oh, and it looks like purple is winning for the Team Jac hats....if you haven't voted yet just click on the poll on the top right corner!

It is Venice 1947 and there is a gathering at the house of Romeo Bechini and his widowed sister Alessandra Macaroni....




Confused? We hosted a murder mystery at the weekend and although it took me a while to work out how to actually play the game, we soon got into the swing of things and had a great night! I insisted on trying to speak with an Italian accent all night and be as dramatic as possible at all times...I did not sound Italian but it was foreign enough. Andrew spent most of the evening saying 'I know nothing' (said with accent). I would post some photos but my friends may actually kill me (check facebook though haha). Seb wore his bowtie since we were having guests and embarrassingly was later found lying in the dark on the bathroom mat (this is his attention seeking behaviour) - it was rather disconcerting for the person trying to use the bathroom at the time.

I am still recovering from the late night - I was in bed around midnight but then had a hypo (low blood sugars) at 2am so was up bumbling about in a confused manner trying to find a packet of dextrose. I have bought 3 packets today - to leave in every room! Today is not a working day but I was up early because I was doing some PBL facilitating at the university. Some of you will remember me doing the course before Christmas, so this was the first time I had done it for real. I am signed up as a 'casual facilitator' so they can ask me at short notice to fill in for people, so I only agreed to this on Friday. I don't have to accept but I wanted to get some experience in this so was glad to take the opportunity. It was really strange being on the other side - I have done so much PBL as a student but never from this side. For those who have know idea what I am talking about...PBL (problem based learning) is the way most medical schools run now. Students meet in small groups, discuss scenarios presented to them and decide what learning objectives they need to meet to understand the scenario. It's all about self directed learning. My job is to make sure they don't go off track and that they assimilate the correct information. I really enjoyed it so would be happy to take on more sessions in the future.

I also have some feedback regarding staff grade jobs. There may be some flexibility in the experience needed part, if I am able to show I have the same competencies as someone who has worked full time. The job I was looking at has not been advertised yet but I have also heard of some other posts available, so things are hopefully looking up. I must admit it is rather stressful just being back and already thinking about my next move....I would rather have had time to just settle in and enjoy being back without feeling this pressure of uncertainty. However, at least I am back, I am coping well and I am enjoying it - I think these are the most important things at the moment.

Team Jac is coming along well and I am organising everyone into smaller teams - we cannot walk en masse so smaller groups will need to leave 10 mins apart to spread out the walkers!! I am also about to order my team jac caps but am having problems deciding on colour. I am avoiding all football colours haha and I'm trying to suit men and woman. I ordered samples of purple and charcoal but I get mixed opinions on them both. Purple is brighter and more fun....but would anyone use the cap again(they are good quality so don't want to waste money) and would men wear the purple (it is quite bright)? The grey was more mid grey than charcoal - better for men and more wearable but is it too dull or just more classy? The caps will say Team Jac on the front (white on the purple, or black on the grey). Another option is to get half of each colour and let people choose but maybe it is better to have all one colour. Anyway I have added a poll on the side bar - please choose and answer and help me decide!!

I have been a busy bee again over the past week or so and am really in need of a wee rest. Last week there was a lot of preparation for the murder mystery, meetings about jobs and I also went out for dinner with friends from my old place of work. That was lovely and great to catch up! I managed to buy another pair of shoes when I was in Tesco doing food shopping. I don't know how it happened. I don't think supermarkets should be allowed to sell clothing and shoes. It's just reckless really...

Anyway, it is now dinner time and I am attempting some roast ham so better go check on it. I have been managing some solid food now - things like chicken if I chew well. Sometimes things are still sticking but it is getting better so hopefully I will be back to normal (or near normal) soon. I do see large juicy steaks when I close my eyes....is this normal?!

Back to work... and loving it!

Well you will gather I have been really busy this week which is why I am only getting around to updating now. I started back at work on Tuesday - just 2 mornings a week at the moment - and it already feels like I have never been away! I was really quite busy actually, which is good as I don't want to be wrapped in cotton wool and am ready to just get right back in there! I sat in on the Wednesday morning clinic as I am working with a different consultant so wanted to see how she likes to run things. Next week however she is at a conference so I will be doing clinic myself, so I guess it's a baptism by fire ;-) I am sure I will be fine though.

I also went to see another consultant about a part time Staff Grade job which may be coming up. Staff Grade is basically a non training post but you require quite a lot of experience to apply for one. This is the sticking point - apparently you need 3 years full time experience in the speciality but I have 4 years part time in psychiatry, which is not enough. The consultant is going to look into this to see if there is any flexibility on this rule, but I suspect not. It is rather frustrating because part time work is never half time work in the sense that you tend to have a more intense experience, with lots of work squashed into a shorter space of time. If this is a set rule then I am going to have some problems finding work after this 6 months unless I go back into training - which would mean being put back virtually to the beginning as I don't have my exams, working full time usually, doing on call work and the risk of being sent anywhere in Scotland. That's not really practical at the moment and not really what I want to do! Hopefully there is another solution and I am always a great believer in things somehow always working themselves out. Anyway, at the moment I am back and I am loving it :-)

I have also been busy sorting Team Jac stuff and have really reached maximum numbers now, with around 160 walkers!! I have arranged extra transport so we should be ok! I will be popping up to Leven myself soon to have a look around and work out best place to meet and note down car parking facilities etc for everyone. It is set to be a fantastic day :-) If you want to sponsor the team, then click on the Just Giving link at the top of the page.....we are flying along with sponsorship and I couldn't be more pleased!

I have also finished the CF and Relationships booklet (I did say I have been busy!) so have sent it to the CF Trust for them to pass onto the Medical Advisory Committee for review. Hopefully they will then be able to host it online and I can also then go ahead with printing some copies to send to each CF unit in the UK. I am getting some pricing done for this at the moment and we have some charity funding to hopefully cover those costs. I am so excited to finally get this going!

On the medical front, I had the MRI of my foot and there is NO fracture....yay!!! So I don't need a cast. Of course that doesn't help with explaining why it is still sore, however as long as I know I am not walking about on a fractured foot then I am happy. I have some special insoles to try which will take the pressure of the painful area and these do seem to be be helping so far. If it continues to be painful then I can get some custom made insoles which may help, so still other options available. Hopefully I can now start to get some training done for the big walk. I am also eating better over the past two days so hoping I have turned a corner with this. If I have to eat mince or fish for much longer I am going to go crazy!!! No tablets got stuck yesterday though, so things are definitely looking up. I will soon be back to eating my usual (unhealthy) diet...

Back from Newcastle

I will get straight to the point - lung function is up....to 99.5%!! Wow! I was trying so hard to get that other 0.5% that I pulled the mouthpiece out of the machine and we had to start again ;-) My oxygen levels were 100% and blood pressure fine. I had unfortunately lost over 1/2 stone due to difficulty eating but we can tackle that. The consultant was delighted and in view of how well I am doing I don't need to go back down until my year bronchoscopy in 3 months time! I must admit I was more relieved than anything else, because having that dip in lung function post op really set me back a bit, but now I seem to be back on track. I wont get my kidney functions back until tomorrow but I have to reduce my anti rejection dose for this week, based on last results, to give my kidney's a wee rest, so hoping that keeps them happy and they start working hard again :-)

I also saw the surgeon this morning and he was also pleased. He felt that the difficulty I am having with some foods at the moment will gradually settle and in some people can take several months. He was rather excited to hear that the annoying little cough I used to get lying down has now gone completely, so was clearly due to acid refluxing into the lungs (which is exactly what we are trying to avoid). This means that the procedure probably will be successful at protecting these new puffers. It is so annoying not being able to enjoy my food properly but as long as I know this is normal and will hopefully get better then I can cope. I will definitely have to start taking more supplements because I can't afford to lose any more weight. I don't look that thin actually because I still have my wee steroidy hamster cheeks but I know my jeans are hanging off me and I am feeling cold all the time which is always a sign I have dropped below an acceptable weight! The surgeon also said I could go back to the gym now as long as I don't over do it. Shame, was hoping he would say I had another few months off ;-)

I am getting a bit nervous going back to work next Tuesday but am also rather excited. As the post is only for 6 months I have been looking into other options but I won't say too much in case I jinx any opportunities. I am feeling more positive about it overall though, largely because I am now physically feeling better. Amazing how feeling physically unwell can really make everything else seem ten times worse. Gaining perspective is rather important.

Update

My friend kindly scanned the article so if you want me to email you please leave your email address in the comments section or email me at weejaq@hotmail.com

p.s Seb did make it into the photo, although looks rather bored :-)

Online article

The Evening News article is available online - click HERE

Sadly they don't publish the photo online so you can't see that. I haven't seen it myself so I don't know if Seb managed to make the final cut or not ;-) It will be the exact same article in the West Lothian Herald next week but maybe a different picture.

I will try and scan the article anyway once I get a copy!

Evening News

Just to let my East coast readers that I will be in tomorrows Edinburgh Evening News - a wee story about the Team Jac walk! A girl I went to school with is joining Team Jac with her partner, who is the editor of the West Lothian Herald (where I am originally from, for those that don't know!) He wanted to do a wee article about the walk so we could maybe raise some more funds - so this will be in next Thursday's Herald. However the Evening News is part of the same company so he also sent them the article, which they were keen to run - especially because the paper is having a 'good news' day tomorrow.

So, the photographer from the Evening News came today and took some pictures of me and then quite a lot of me with Seb (since he is the team mascot!) Seb was unusually obliging and sat on my knee nicely - apart from the fact he kept looking around in a bored manner then yawning widely at the camera. This was after he has sniffed and licked the camera to ensure it wasn't in fact edible. He was quite suspicious of the photographer, although did "allow" him to take some pictures ;-) We also took some of me walking Seb outside (this is where his walking to heel came into its own!) so I am sure all the neighbours will be having a good gossip about what was going on.

I don't think I will get the paper through here but they are going to send me a copy and I am sure mum will buy one or ten...

I am still alive!

I think I might have worried a few people by saying I wasn't well then not updating my blog. Oops - apologies for that!

I am feeling a lot better this week, especially since I stopped my antibiotics. Within 12 hours of stopping them all the aching muscles and sore joints disappeared so I think that was a large part of the problem. My chest seems much clearer although I will feel a lot more reassured once I have my lung function rechecked at Newcastle next week and it (hopefully) has gone back up again. I have still found it a little harder walking Seb but I think this is just some deconditioning from over the Christmas holidays and then not being able to move much post op. I am back to taking him out every day again so I am sure I will quickly rebuild my stamina!

The eating is a bit better but I am still having problems swallowing some of my tablets and eating anything more substantial than mince. I think he said six weeks to heal fully and it's only been just over three, so hopefully there will be some improvement yet, as clearly I cannot live of mince forever. I have a review next Tuesday anyway so can discuss it then. I must admit it's rather frustrating not being able to eat what I want after so many years of having no appetite. I am managing the home baking though, which in the grand scheme of things is much more important than anything else ;-)

I have been quite busy this week with various crafty type things. I finished the canvases for Anne and John, I have been making invitations for various things (including a Murder Mystery I am hosting this month) and also making some birthday cards. Andrew would probably say what I have in fact being doing is generally making a mess.

I also have a concrete back to work date now - Tuesday 17th Feb. I am going to work Tuesday and Wednesday mornings to start with and possibly some other work at the university, depending on whether they need extra facilitators. Unfortunately my funding for work is only guaranteed for 6 months and I don't know what the chances of extending this are. It's rather complicated and I wont go into the ins and outs, but I should probably start looking at other options fairly soon. I had been hoping for a years funding to give me some breathing space and a chance to work out how many hours I can cope with, however sometimes things are supposed to happenfor a reason and I am sure it will all work itself out in the end. I am excited about going back although cannot believe it has come around so quickly. I feel as if I only had my transplant recently...not 9 months ago! Where has the time gone??

I have also been trying to finalise some numbers for Team Jac - we are currently sitting at 114 members but I still have some more people to chase up. If you have not replied to the email I sent looking for confirmation and whether you need a place on the bus, please reply. It is difficult for me to chase up 114 people individually! Lecture over now ;-)

I will try not to leave is so long between blogs this time :-)