Holly, an advocate for LLTGL, has had her "Gift of Life" campaign idea accepted onto the Channel 4 "Battlefront" website:

http://battlefront.co.uk/campaign/the-gift-of-life/

Channel 4 will pick the most popular campaign to then be featured on the Battlefront TV programme.

Please take 2 seconds to visit the site and click 'vote' - let's get the organ donation message out there :-)

You can visit Holly's blog here

Team Jac

I am planning to do a sponsored walk next year to celebrate these shiny new lungs! The proceeds will go to Live Life Then Give Life (LLTGL), a fantastic transplant charity that I am an avid supporter of and which was founded by two woman with CF.

.....but I don't want to do this on my own! What if I need carried? Is that allowed? So, I am putting the feelers out there now to see who would be interested in joining Team Jac and her bunch of merry men/women :-)

The plan is yet to be formulated but it will be a one day walk - probably somewhere between 10 and 15 miles - on non-hilly terrain (somewhere in Scotland obviously). Ideas for routes welcome! It will probably be around mid-May at a weekend - we would have some chance of getting nice weather and I will have passed my 1 year milestone.

So, who is with me on this?? Email me at weejaq @ hotmail . com (there are no spaces, that is to prevent spammers getting the email) and let me know if you fancy it. I will then keep everyone up to date via group emails and we can formulate a plan. If you want to join in but don't think I know you, then don't let that put you off. The more the merrier!!

Anne and John, I expect you to be the first to sign up. Mum and dad are already roped in ;-)

I think I need to go start training now....

Weddings and Vegetables

I had a lovely time at my cousin, Philip's, wedding at the weekend. I didn't quite last the pace this time though and had to head home about 11pm - I think the last few weeks are finally catching up with me! I did however manage a fair amount of dancing before I left, although sadly (luckily for everyone else) the macarena was not one of them. Audrey left a comment suggesting I may have been drunk last week...I am embarrassed to admit that I was driving that night, so not one drop of alcohol had passed my lips. I think my friends would be the first to agree that I do not require alcohol to dance. Not sure if this is something to be proud of though ;-)

The Church (this is also where I got married)

Philip and Lesley-Anne - cutting the cake

Eliott, Philip, Lewis and Lesley-Anne

Andrew and me

We stayed at mum and dads and since Corey is up visiting just now, we stayed all Sunday. Nothing to do with getting a free dinner. We took Seb up to the country park near my mums and he had a great time running around and meeting other dogs. There is a deer park and he was rather perplexed by the noises the stags were making. Luckily he didn't start barking at them, like he does with the highland cows at our park. I don't know if realises quite how big a highland cow really is.

I am trying to take it easy this week in preparation for my friends wedding, which I am really looking forward to! Myself and my other friends are also staying on the Friday night just to make a wee weekend of it. Any excuse eh?!

Other news in is that I had some home grown carrots from our veggie bed the other day. They were absolutely tiny but very very tasty :-) We still have some more to pull but I am going to see if they grow any bigger first. We also have a couple of tiny peppers and one chilli pepper haha. It's a start though. The chinese cabbages were doing really well until the slugs ate half of them! I have now put some gravel around them to see if that helps...apparently putting beer down is a good trap but I am a bit worried Seb might drink it! Actually I got a row in B+Q when I was buying the gravel. The gardening part seemed to be cordoned off with tape...but then I saw a couple walking about inside, so I thought oh well, what the heck and climbed over the tape. I then skulked about for a while trying to find the gravel - I had just located it when a man, who was watering plants, shouted over "You are not meant to be in here!" "Oh! really?" I replied in a surprised manner (despite the fact I clearly must have climbed over the barrier tape). I asked if I could just take some gravel first, and he said to hurry up. So I lifted the first bag - it was burst open and gravel came pouring out all over me. So I smiled nicely at the man as I tried to stuff this one back on the shelf and select a new one (I suppose he would have to come and clear it up). He just shook his head and carried on watering plants. At least it wasn't a wasted trip though ;-)

I have my MRI scan tomorrow although I won't get any results until I see the ENT next month. Good news on the medical front is that all my bloods tests from last week were totally normal, so that pain was obviously nothing worrying. Always good to make sure though!

Photographic Evidence of the Macarena..

Mum, me and Charlotte

Mum and me (me looking incredibly smug!)

p.s Kelly asked what the Macarena was - a very cheesy song and dance from the late 90's! Search youtube for a live example ;-)

Parties and Pains

I've taken a while to update because I've had a fairly busy week. I had a great weekend, as it was my aunts 50th birthday so we had a big party. It was a brilliant night - a lovely meal and then a good mix of dancing (disco and old time) and some singing as well . It has been rumoured that the 'oldies' had a sing song until 4am back home, but I wouldn't know as I was staying at my other aunts house. Just as well really ;-) I managed a fair bit of dancing and even had to get up with my cousins girlfriend to show everyone how to do the Macarena. Andrew said everyone would think "poor Jacqueline, it's been so long since she danced, she still thinks the Macarena is in vogue". Cheeky man. Unfortunately I forgot to take my camera, as did my dad, so I have no photos. Actually, if anyone reading this was at the party and has some photos, please send some to me!

The week then didn't get off to a great start as I had this niggling chest pain, which was really sore when I breathed in. It actually started last Friday but I was just keeping an eye on it. I suspect the dancing on saturday did very little to help the problem. By monday morning it was still there, so I thought I should get it checked out. By chance I was getting my routine bloods done by the nurse on Monday morning anyway, so I asked if the GP could take a quick look while I was there. He said my chest sounded clear and then took some extra bloods to exclude a blood clot. I was happy enough with this until I had a slight flicker in my temperature on Monday night, so I phoned Newcastle for further advice. They said I needed a chest xray and lung function tests done, so I thought it easiest just to contact my CF team. They were fantastic - told me to come straight up and everything was organised. The CF consultant came down to clinic to see me, so that I wasn't wandering about the wards. The chest xray was fine, and although the lung function was down marginally (2.62 to 2.47) this could be easily explained by different equipment. He was completely happy that it was no more than a muscular problem or due to some adhesions forming after surgery (the pain was over part of my scar). Incidentally the CF doc used to work in the transplant unit, so has a good knowledge in this area. My temperature has been fine since and the pain is easing off, so looks like it was all a big fuss about nothing. Better to be safe than sorry though! I did also mention the joint pain (knees are still really sore) but he said it was something that is still likely to flair up from time to time. Hopefully it will ease off soon though so I can start walking a bit more again.

Yesterday we went out for lunch with mum, dad and my aunt and uncle (before they head back down south). We had a lovely meal and I really did eat far too much. In fact all I could manage for the rest of the day was a packet of crisps :-) Last night we attended a concert which was being held in aid of CF. It was organised single handedly by a secondary school pupil from my uncle's parish. He talked about me after my transplant - getting everyone to pray for me - and because of this she felt inspired to raise money for CF. The concert was held in her school, although the teachers etc were not involved in the organisation. It was absolutely fantastic!! So much talent - there were people singing, dancing, bands, piano playing. It really was top class. I had to get up at the end to say a few words, and I must admit I was more nervous that I had been speaking at Scottish Parliament! I managed ok though - just told them a bit about myself and my story and explained the CF trusts need for continued support. I'm not sure of the final total raised but I think they must have done pretty well, as there was certainly a very good turn out.

Today has been much quieter and I am doing some more work on the CF and relationships booklet. I was working on this earlier in the year, before I was rudely interrupted by some transplant surgery. Myself and Emily are finally getting ourselves organised and are nearly finished writing the sections now. I then need to put it into a publishing programme so I can make a downloadable pdf....I think this may prove harder than I think, as I can't remember how to use the programme at all! Hopefully it will all just come back to me.

I am now preparing for another busy period, as it is my cousins wedding on Saturday and my friends is the following weekend. All go, go, go!

Seb is tired at the very thought of it....

Hopi Ear candles and other random thoughts..

I forgot to tell you all about the Hopi ear candling which I had last week. It was a somewhat bizarre experience. Basically you lie down on your side and they stick this candle in your ear. It's hollow and a bit bigger than a pencil, but quite thin. It has to burn down to a certain level, so the therapist stands there for 15 minutes holding it in your ear. You feel a bit of warmth and hear a crackling noise in your ear - this freaked me a little because I am funny when it comes to fire. I can't light matches and I could never hold a sparkler when I was young as I was too scared I would get burnt! Not that I ever did. Anyway, this candle is supposed to be drawing out all the 'impurities' (that would be ear wax then). There is a tube which runs from ear to your nose, so I thought this was the only possible way it might impact on sinus problems, and the lady said that it did really help some people with such issues. So, after the first ear you turn over and she does the same again and then finished off with a mini facial massage. I like the massage part but I'm not so sure about the ear candling part - it wasn't unpleasant in anway, just a bit odd. I certainly didn't notice any difference with my sinuses afterwards, although they have been a little better this week. Not sure if that's due to me using the pain killers regularly though, plus I also got my new squeezy bottle for sinus wash outs which seems better than my netti pot - I feel as if the saline gets into the sinuses better so am hoping that will help.

I also went to see the GP about the sinus pain but he wasn't too helpful -just told me to take more tramadol. Hmmm. I am getting the MRI at the end of this month and seeing the ENT at the end of October, so I will wait and see what the outcome of that is. If there is nothing they can do, then I will maybe ask for referral to pain clinic to see what my options are, but I am hoping there will be some surgery available to help the pain.

Other medical news this week is some random joint pain in my knees and ankles. I used to get this on and off before the transplant and it is related to CF - the cause is poorly understood but thought to be related to antibodies (made when you get an infection) sticking in joints and causing inflammation. That's a bit of a basic summary but you get the idea. I also sometimes get a rash on my upper arms with it and have this again at the moment - its hardly noticeable, just some tiny dots. The weird thing is that this was always associated with infection before the transplant and I certainly don't have any infection just now. Odd. It usually settles within a few days, so I am not too concerned and hoping it will ease off soon. It's not bothering me at all when sitting - only when walking Seb, although it is a bit annoying really. I will mention it to the transplant team next month but I suspect it is just the CF related joint problems, in which case there is nothing more to be done about it.

Otherwise I am feeling great and everything else is going well! It's my aunt Rose's 50th birthday today so we are having a party tomorrow night, which I am really looking forward to. Lot's more dancing :-) Although I may wear slightly more sensible shoes this time. I have been baking carrot cakes tonight for the buffet at the party....I've only made them once before so fingers crossed they turn out ok!! It will also be great to see lots of people who haven't seen me since the transplant. Just have to remember that this party isn't for me :-)

I will leave you with a picture of my giant sunflower. I planted some seeds when I got home after the transplant. I gave most of them to dad but I kept two and one of them has finally flowered - better late than never!

Today is my sister, Frances Ann's, anniversary. Four years today - that is hard to believe. There still is not a day goes by that I don't miss her with all my heart - her wise words, her sense of fun and her infectious laugh. Mostly I miss her most when something really funny happens because she probably is one of the few people who really 'got' my sense of humour. I hope she is somewhere, watching and laughing with me :-)

Fran and me!
(at my graduation party 2002)

Nearly recovered..

I got back from the wedding down south last night. It was actually in Suffolk, but we flew to Stansted airport on Friday morning and hired a car from there, which was probably the easiest way. We arrived at the hotel mid afternoon and caught up with some friends for tea and scones :-) In the evening we went over to another hotel to catch up with other friends who hadn't been able to book into our hotel. I had been trying to organise everyone so we could stay together, but there were only 10 rooms in the hotel (it was a tiny village!) so only 7 of us managed to get booked in, and another 3 had booked into a different hotel nearby. Perhaps they should count themselves lucky because on our way into the hotel this strange old man standing outside said to me "You're not staying there are you?! It's got ghosts and everything!" Luckily there was no evidence of ghosts or ghouls and I managed to sleep with the light off ;-)

The wedding was our friend Chris', who shared the big flat with us all at uni (the one I talked about when I went to the wedding in April) so it was great catching up with everyone again - the last time most of them saw me was in April at Anna's wedding, a few weeks after my false alarm, and the week before I got my transplant. I think they could probably see a big difference!

On the day of the wedding we all met for a bite of lunch then got ready and drove over to the church for the ceremony. Thankfully the sun came out at last, after the continuous rain since we arrived. It was a lovely wee church overlooking the sea and a lovely setting for a wedding. After the service we left the cars at the hotel and got a taxi to the reception - which was in a marquee in the grounds of the bride's parents house. We had drinks on the lawn and then settled into the marquee for a lovely meal and some dancing! The band were amazing and it was great being able to have a wee dance!! I did manage one dance at the last wedding but was still sore from the surgery so couldn't really join in much. This time I was able to dance away to my hearts content - the shoes were even removed at some point ;-) They were extremely silly 3 inch heeled sandals that I could barely walk in though - in the past few years it hasn't mattered because I have always stayed sitting down, but I forget how punishing it was on your legs and back to try and totter about in such shoes. Must pack an extra flat pair for my friends wedding at the end of this month, as those red shoes are mighty high!

We had a bit of a panic towards the end of the night when we realised that every taxi firm in the local area was fully booked- all collecting people from the wedding. In the end, my good friend Nic, did three runs in her car to get us all home. What a wee star!

We got back at tea time yesterday but headed through to mum and dads to pick up wee Seb. He was rather excited to see me, which was unexpected but very nice. Of course mum gave us some dinner (which was NOT our ulterior motive for going last night). I think I am just about recovered now, having had a rather long lie this morning but my legs are still sore from the dancing haha!


It was hard to get some photos I like because I think I look steroidy in most of them. Oh how I hate the fact steroids make your face round. I guess most people think it looks healthy or something. Anyway, here are a couple of better shots and one of Andrew in his kilt.. (again, I haven't added any of the bride and groom because I didn't ask permission - always a bit paranoid about putting other people's photos on the internet without their knowledge!)

Cars and Microchipping...

The garden fete on Sunday was very good, despite the pouring rain! It was one of the wettest days this month and the rain just did not let up...however that didn't seem to prevent a great turn out and they still raised an amazing amount of money. I bought some books (10 for £1..bargain) which will keep me going for a while and spent a silly amount of money buying tickets for the bottle stall. I did eventually win a bottle and then the guy asked if I was old enough to take it. Hmm...I'm 29.

Monday wasn't such a good day when I got up and realised I had a totally flat tyre! I phoned the garage and after waiting all morning on them to call back they finally told me to bring it in. I then waited 2 hours at the garage, only for them to come out and tell me they couldn't find a puncture!! The pressure had been at zero so the only other possible explanation is that someone let my tyre down. I was parked outside Andrews grans at the weekend and I suspect it happened then, as there are a lot of people walking past. I just don't get the mentality of some people. Ahh well, as least it's sorted now. They also took a look at my fan, as I didn't think it was working properly so they have ordered a new part. The joys of second hand cars ;-)

It seems to be otherwise running well though and I was driving mum all around town yesterday on various errands (my foot has been fine for driving). It was really strange actually, as for the past couple of years she has been my chauffeur when I have been too breathless to drive. Now it's me tootling about here there and everywhere, and I love it. I was out and about a few times today...just boring errands like taking the recycling and going to the petshop, but I still love the feeling of freedom when you can just jump in the car and go. Seb came everywhere with me and he loves the new car too....he likes the 5 doors as he can jump in the back himself, instead of being lifted (thrown) onto the back seat.

Speaking of Seb, he had a pretty stressful day yesterday. I decided to get him microchipped, especially in light of his persistent ability to escape. I had a leaflet in the door saying that the dog warden could do this, and I thought this would be ideal as Seb is very scared of the vets so I wanted to avoid that if possible. Well the warden arrived, and Seb greeted her with some suspicion. We weren't off to the best start. He then lay on the floor next to me and appeared to be quite calm, so she decided just to try and get the chip in from that position. It's like a wee gun that fires the chip into the back of the neck and should be quite painless. I was holding Sebs collar but as soon as she put her hand on his neck he went berserk - mouthing and squirming and generally thrashing about. He then screamed and screamed before finally breaking free resulting in a big mark on his neck but no chip! I had to put him on a lead to stop him wandering off and we spent ages trying to scan him to make sure the chip wasn't there...it wasn't. I couldn't believe we were going to have to try again. By this time she had decided it would be best to muzzle him, as he was getting very agitated. He has never bitten anyone in his life, but I suppose you can never say never with any dog. Well, he was having none of it...thrashing his head about and making it near impossible to get the muzzle on. At this point he threw a total tantrum and started screaming like a child...when I say screaming, I don't mean whimpering or howling, I mean actual screaming. Tibbies are renowned for doing this but you have to hear it to believe it. Ironically it sounded like he was saying 'mamma' and kept looking over at me, hoping I would somehow intervene and save him. At this point the warden simply lifted him by the scruff of the neck and held him firmly....he threw his head back and screamed louder but she remained calm and just kept holding him in her arms. He was not getting hurt at all but really was just having a tantrum. It wasn't pleasant to watch but I did understand what she was doing, and to let him go at this point would only let him know that this carry on works! After about 10 minutes he was calm and quiet and she let him down. I decided it would be best for me to leave the room and get mum to hold his head this time, as I think he picks up on the fact I am getting upset. Well, it only took about a minute - he just sat there and allowed them to put the chip in without another noise! A huge fuss over nothing. I was really impressed with the warden and it was a bit like Ceasar Milan (the dog whisperer) on the TV...the ability to get a dog to become submissive to you. She apparently runs dog training classes so I am going to sign Seb up for these, as I think he would benefit from this. He is generally a good dog and knows lots of commands, but he is very wilful and can choose to ignore them if he pleases. Embarrassingly I told the warden that he came on command, and then when I had to call him in from the garden he refused to come! Talk about being shown up. I think he needs to understand that I am actually the owner and he is the dog....we all know however that in reality it's the other way round ;-)

My sinuses have been a wee bit better the last 2 days. I was taking the painkillers as required before and I think because I was letting it get quite sore, it was harder to get on top of the pain. The last couple of days I have just been taking the painkillers every 4 hrs regardless of how sore it is and this seems to be working better. I don't really like taking so many though, but will see how I get on.

I am off to a wedding in Suffolk this weekend, so am flying down to London on Friday morning. I haven't been on a plane for about 3 years so it feels quite strange. I just realised today I needed a letter to explain that I am carrying a nebuliser, lots of drugs and insulin needles etc on the plane. The CF team are kindly sorting this out for me so I should be all set! Just need to get packed tomorrow...I hate packing, although it's a lot easier without oxygen and when you are feeling well enough to get organised. I'll be sure to blog about it next week and hopefully with some photos :-)

Sinuses....and cars!

Apologies for delay in updating but I've had a really busy week! I had the ENT on Wednesday and it was quite an interesting appointment. After some discussion and looking into my sinuses with an endoscope his verdict was "you have a very sick nose". I had gathered that much. He thinks I have something called "Empty nose syndrome" which has only been recognised fairly recently in the literature. It is effectively the result of far too much surgery on the sinuses (I have had around 10 operations over the years, the first being when I was only 7). Basically in an effort to improve drainage from the sinuses they have removed so much of the mucosa (lining of sinuses) that there is now not enough to keep my sinuses and nose healthy. The lining normally produce mucus to keep sinuses moist and lubricated, but instead mines is very dry and they cannot drain effectively. There is no treatment for this, other than sinus washouts to keep things moist, which I do daily anyway. He did suggest another device for doing the sinus wash outs, which is basically a squeezy plastic bottle so I have ordered one of these to try. He also suggested putting vaseline inside my nose, which should evaporate and help moisten the nose. However, he did also feel that although this syndrome can cause some pain, it is not usually the main feature - and pain is most definately my main symptom. He instead suspects that I have stenosis (narrowing) of the drainage pathway from frontal sinus, due to scarring. He is arranging an MRI scan to investigate this further and then I will go back and we can discuss the options. I think if there is narrowing then further surgery may help, but they would have to be very careful not to make matters worse. I'm not quite sure what to make of the consultation - I was glad to get some answers and felt he really knew what he was talking about, but at the same time I am terrified that there will be nothing else they can do! I cannot tolerate this pain for much longer - I am taking high doses of tramadol and codeine and still cannot get much relief. It's actually really dragging me down and it didn't surprise me to read that over 50% of people with empty nose syndrome also develop depression. Chronic pain is so frustrating, especially when I otherwise feel so well. My current plan is to pop down and see the GP while I am waiting on the MRI and see if they have any other suggestions for better pain control. There are other drugs that can be used and I think it might be worth investigating this. Hopefully following the MRI however, there will be something the ENT can offer. Fingers crossed!

The rest of my week was very busy because I was looking at cars ....so I am now the proud owner of a wee fiat grande punto in psychedelic azure :-) I didn't really want a new car but my old car was leased through the motability scheme and the lease ended this month. The normal procedure would be to order a new car, however because of the transplant all my benefits are under review so I wasn't able to do this. It was pretty bad timing really but these things happen and I had to say goodbye to my beautiful black megane coupe :-( I do really like the punto but the power difference is very noticable - its a 1.2 and the megane was a 1.6. Driving it home from the garage I kept thinking I had left the handbrake on haha! It's in great condition though (2 years old) and its 5 door which makes it easier for me to get Seb in and out. I think it will be ideal for tootling back and forth to work and I got a good deal.....I went to the garage without Andrew so I don't think the salesman was expecting me to haggle so much. He said he was very impressed with my persistance and boldness....and he really didn't see it coming ;-)

I also had fracture clinic yesterday morning, which went well. On xray the fracture is healing well and they are happy not to see me again unless I continue to have problems. I would say its more or less back to normal now - just occasional aching but nothing too bad. He did say I am at high risk of further fractures of a similar type but just to go back through A+E if I suspect its happened again. There is nothing really to be done prevention wise other than be careful when walking. Let's just hope it doesn't happen again!

So, it's been a busy few days and I am feeling quite tired. I am off to see Andrews mum, dad and gran tonight for some supper, and then tomorrow we are going through to my uncle's garden fete, which he holds in his parish every year. I will no doubt purchase lots of things I don't need, which I will then donate back to the fete next year...

Wood Pigeons and Ear Candles

We went out for an anniversary dinner on Friday, since I was in Newcastle on the actual day. We went to a very posh restaurant (we like to be good to ourselves) and it was a lovely meal. The menu was a bit strange for my liking though - for example - "Perthshire wood pigeon". Now the main problem I have with this dish is the fact I have a wood pigeon in the garden called Percy. He likes to come daily for a bath and Seb loves to chase him. It's a love hate relationship. Anyway, based on this fact alone I could never eat wood pigeon. But to make matters worse they told me the pigeon was from Perthshire. Now I have a mental image of the pigeon growing up on the streets of Perthsire, perhaps having a family there and raising baby pigeons of his own. Now I definately couldn't order that dish! I had steak. I like to play safe.

I met some work friends on Saturday for lunch and it was lovely to catch up and have a good gossip. It's so nice being able to make plans like that and know that I will be well enough to go along and enjoy myself :-) The rest of the weekend was fairly quiet - we went to mum and dads on Sunday for dinner and yesterday we took Seb up to the country park. My foot has been much better and I have been taking Seb short walks for the past week, so thought it was time to try out something a little further afield. I got on ok, and Seb loved it, having not been for several weeks. The foot has been fine today so there doesn't seem to be any repercussions from my exertions. Hopefully this means the high heeled shoes will be ok for all my wedding ;-)

Tomorrow I have my ENT appointment, so hopefully they will have something to suggest. In the meantime I am trying out Hopi ear candling next week. Andrews mum had heard that it was very good for sinus problems so I am going to give it a go. Anything is worth a try and it can't do me any harm. Unless they burn my ears of course...

Big Shiny Gold Star for me!

My appointment at Newcastle went really well yesterday. We turned up at 7.15 am to find a queue of people waiting already, so I think I ended up being last to get all the tests done! But then I was one of the first to see the doctor so we actually escaped by 11am - a record so far.

I first had bloods taken - it took 3 painful attempts and me sitting with my hands in a bowl of hot water for 10minutes, but we got there in the end. My practice nurse must be really good at blood taking as she always gets it first time :-) I will get the blood results later today but I am not expecting any surprises. I then had lung function and x-ray. Now this is the good bit.....I blew 90% on my lung function!!!!!! I have never had a result like that in my entire life. I have always been described as 'moderately to severely' affected lung wise when I was growing up, so although I can't remember the numbers I know that my lungs have never functioned at 90%. As an example, I do know they were 45% when I was about 15/16 (and I went hill walking on that!) Anyway, needless to say I was rather smiley with that result.

Then we saw the doctor, who seemed to be really pleased with me. He showed me the graph of my lung function since transplant and it shows a lovely steady upward trend at each visit. Obviously it has to plateau soon but to have reached 90% by 4 months post transplant is pretty good going. He asked if I was taking lots of exercise and I said I was - to the point I fractured my foot - but he just seemed to be amused by that! Not so funny really ;-) The foot it much better but is still twinging a bit, so I am just being careful with it at the moment. All my other test results looked good -oxygen saturations 99%, blood pressure spot on, last blood tests all normal, weight steady and pulse has come down a bit. It was sitting at 12o all the time, but is now 105 which is much better. So, he basically said he couldn't ask for me to be any better at this stage!

I did mention the fact the acid reflux is still bothering me but he didn't have the results of the study yet, so we will discuss that when he has more information. I also have been getting terrible sinus pain again - its just constant and I am popping painkillers all the time, but with little effect. I used to take ibuprofen with good results but am not allowed to take that any more, so its making things difficult. I am still doing the daily sinus wash outs but they don't appear to be making much difference. Anyway, I have an appointment with ENT next week so am hoping they have some useful suggestions. I asked the doc yesterday if surgery would be feasible. He said my lungs are fine to cope with surgery but the problem lies more with the fact I am immunosuppressed and sinus surgery will release bacteria into the blood stream, which is not ideal. The ENT would need to discuss any options with newcastle and hopefully they can agree on something - I can be given prophylactic antibiotics pre surgery to help, so it has not been ruled out. I just really need to do something -its seriously dragging me down. I am wondering about looking into alternative therapies such as cranial osteopathy (to try and help sinuses drain) -if anyone has any experience of this, or any other bright ideas please let me know!

Other issue at the moment is this leaking peg tube site, which is getting worse as opposed to better. It can be fine for hours and then suddenly decide to leak badly, soaking through several dressings and creating an embarrassing situation. I asked about getting it stitched but apparently the surgeon doesn't like doing this because it rarely stops the leaking and has to be done via endoscope, so isn't entirely uninvasive. At this point I don't care if it only has a 10% chance of success - something needs to be done! I can't just have this leaking hole forever. I have been investigating it myself and I understand there are other surgical options, so I think my best bet is to ask to speak to the surgeon himself. The nurse is on holiday just now but I will phone next week and take it from there. I am not willing just to let this go on.

Although these other things are annoying, hopefully they can be sorted out soon enough. As far as the transplant team are concerned I am doing great.....so we will just go with that assessment for now :-) I also don't need to go back for another 7 weeks now - record gap! - and at that point they will do my 6 month bronchoscopy, which is another huge mile stone.

I did enquire about Louise when I was down at newcastle, but obviously they can't really tell me anything as its all confidential. I asked if it would be appropriate to hand in a card to ITU and they said that was fine, so all I can assume is that she is doing ok at this point in time. ITU said they would give her the card right away so I can also assume she is actually awake now. All sounds promising! Keep up the good thoughts :-)

Happy Anniversary to Us!

Today is my 4th wedding anniversary. The last few years have been difficult, coping with the loss of Frances Ann, with my declining health, being on the transplant list and finally the major events of this year when the transplant finally came. What a roller coaster our married life has been! But without Andrew I'm not sure how I would have coped and at least I can say we have jumped these hurdles together and maybe that has made us even stronger. In fact, I know it has.

Maybe now we are due some luck and a smoother journey for a while. Here's to a great year ahead, with fun, laughter and love :-) Happy Anniversary to us!

Back to reality

Well after my five minutes of fame on Friday, it's back to reality. It's even back to reality with the hair, which I have been wrestling with all week. The hair dresser made styling it look pretty simple but unfortunately this is not so! The main issue is the fact my hair is actually very curly (believe it or not) so I have to learn to tame it more with the hair dryer. I have in fact even ordered a new hair dryer - one of those salon style ideas with lots of speed and heat settings (my current one has one setting only haha). It arrived this morning - there were 21 (!) colours to choose from and I thought I had ordered purple, but I had in fact ordered a horrible beige colour. Probably the worst one out of all 21. Ah well, as long as it works. Will try it tomorrow...

I've had a quiet time of it lately, mostly trying to rest the foot. It seemed a lot better yesterday so I took Seb for a short walk without the crutches and there did not appear to be any repercussions. I know I should probably rest it more, but I was literally going stir crazy being stuck in the house (as was Seb) and I would even say that it was beginning to affect my mood and I felt quite down. It was just like being back to pre transplant when I couldn't get out and about and was just stuck in the house all day feeling a bit sorry for myself. Anyway I felt a lot better after getting out in the fresh air for a short while so I think it was the most sensible thing to do - for my sanity more than anything. I went out again today and the foot seems to be ok so hopefully that means it is well on the mend now. It's probably a bit too soon to be driving again (he said to wait until I had been walking on it comfortably for a 'while') - but hopefully soon!

I went into my work last week to catch up with people and try and formulate a plan for going back to work. Newcastle had advised me 6 months to a year before I go back to work. I was originally planning on the 6 month mark and was hoping to go back in early November, but have instead decided that January is more realistic. This gives me time to get through my 6 month bronchoscopy, continue the rehabilitation and also to have a chance to enjoy my first Christmas and New Year post transplant :-) So hopefully I will be going back in early January - initially just a few half days a week and take it from there. These part time posts are funded separately, and there is very limited funding available, however I have been on the list since my transplant so should be ok in this respect. I will be going back to the same job I was doing in Old Age Psychiatry within the same community team (which is fantastic because I love the team and they all know about my transplant, so no need to explain anything). I don't know what my longer term plans will be though. I think possibly looking at staff grade jobs - these are non training posts, which basically means you are not under an obligation to sit the exams, although I probably will anyway, and there is no on call - but on the downside you are not then climbing the ladder to consultancy (although this might change in the future). I suppose it depends how much that title means to you! However as a staff grade I would still manage my own case load and make my own decisions, so I think this would be a good way forward for me. I feel that I didn't go through this transplant and be given a second chance at life, to then spend it in a training post doing overnight and weekend on call and being put under pressure to sit post graduate exams within a certain time frame. I love my job and I am ambitious, but I also have a different perspective on things now. I want to live my life as well!

I am back down in Newcastle tomorrow for clinic on Thursday. It's just a routine clinic with chest xray and lung function. I don't think there will be anything to worry about so hopefully will be straight back up the road on Thursday afternoon/evening. I will post with an update.

Also just to mention that a friend of mine, Louise, who has been waiting on her transplant for the past year, has finally had the call! I don't have any more news other than she is getting the surgery just now in Newcastle - so keep her in your prayers please.

p.s I think I have emailed the daily record article to everyone who asked - if I have missed someone please let me know, or if anyone else wants a copy just leave me your email in the comments or guestbook :-)

Five minutes of Fame

Click here for the article online (scroll down page after its loaded)

You can only see the photo's in the paper - if anyone is desperate to see them and can't get the paper, then leave me your email in comments or guestbook and I will try and scan the article.

I'm really pleased with the article overall - the diary part is what I wrote myself, and bar a little editing to make the word count and the adding of some headings, they haven't changed anything. I'm also pleased with the photo (thank goodness), although I have to admit my hair no longer looks so neat and tidy. I tried to dry it myself yesterday and it's sticking up all over the place! More effort and practice required I think ;-)

Article

The article should be in tomorrows Daily Record - unless some breaking news bumps me out the way! Eeeek....I'm all nervous now!

Pampering

So I headed off to Debenhams on Monday morning and met my personal shopper, Therese, who was to help me choose a new outfit for the daily record photo shoot. She had already selected some items to try and get an idea of what I liked and disliked - she said I was easy to work with because I was very definite about what I liked, haha. I had already spotted some trousers in the Principles part of Debenhams a couple of weeks ago but unfortunately I could only choose from Debenhams own ranges so those weren't allowed. Needless to say I bought them anyway ;-) I wanted a casual outfit so that it would be something I could wear again, as I am not much of a fancy dresser. We eventually decided on some jeans, a grey t shirt top with a grey pin stripe fitted blazer on top. I also got little grey tweedy ballet shoes, a matching grey bag and a necklace and bracelet! I was really pleased with the final outfit and I thought it was more interesting with the blazer but was still something I would be able to wear again. As it was now lunch time the personal shopper arranged for us to get a free lunch in Debenhams, so that was a lovely
way to finish the morning.

Yesterday morning we had to be at Taylor Ferguson's (top Glasgow salon) for 8.45am so it was an early start for us (mum came with me). I was delighted when I arrived and realised it was Taylor Ferguson himself that would be cutting my hair -nothing but the best! I think he was probably a little disappointed with my lack of adventure, as I clutched my hair and said 'not too short!' We decided on some layers, as it was all pretty flat before, and a side fringe that I can keep back into hair or bring forward. Colour wise we went a shade darker with some tiny blonde high lights on top. I think he wanted to do something a bit wilder and he said that I shouldn't be going darker in the summer - what summer?! However he also said it was my hair so my choice and I stuck to my guns and was really pleased with the final look. I think it's probably the best cut I've had, so now I need to save up to go back in future :-) The junior stylist came to blow dry it afterwards and she said "I think we will go big volume with bits flicking out all round" and I said "...errr...no, can you just dry it straight?!" She said that I had to tell Taylor Ferguson that I had asked for it like that! He came over afterwards to finish it off and he put this strange powder through it which immediately made it go really big. He kept lifting it up to show me how to "joosh" it up (meaning, make it big). After he left I flattened it all down again but unfortunately he came back to check on me before we left and saw what I had done. I think he despaired. He told the journalist that I had to 'joosh' it for the photos and that I knew how to do this. Needless to say I didn't joosh anything..

After the hair I also got my makeup done in the salon. She didn't ask me what I liked or anything - just got on with it. She appeared to use about four different eyeliners and I was rather alarmed with the end result. In fact when I opened my eyes and looked in the mirror I had a look of great surprise, so much so that she asked if I was ok. I paused before quietly saying 'do you not think the eye liner is a bit much?" I think she was quite annoyed actually and retorted that if I didn't have it like that it would look as if I had no make up on in the photo. So, i just went with it. I think it's because I am not used to wearing much make up so it was just so different - I got more used to it as the day went on, so hopefully it will look ok in the photograph.

After the hair and make up the journalist picked us up and we went over to the Daily Record studio. We had to wait quite a while as another shoot was taking place and they were running late. It wasn't too bad though and we has some lunch while we waited and then I had to get changed into my new outfit. The photographer didn't take too long with my photos as he was aware that my foot was sore so standing without the crutches for too long was a bit awkward. I had some shots taken standing up and then a few sitting on the floor. Then he asked mum to get into the photo. She was mortified and said "but I haven't had my makeup done!" but then she didn't hesitate too long before getting into shot. He took a couple of really cheesy photos of mum and me with faces together. Oh dear. I'm not sure which one they will choose but hopefully I won't be too embarrassed by the final choice.

The journalist thinks the article will be in the paper towards the end of the week but will hopefully let me know the day before. You will probably be able to see the article online but I think you will only get the photos in the paper itself. I don't have any pics of the new hair so you will just need to wait and see!

p.s speaking of the daily record, if you still haven't voted for wee Seb in the petchamp competition, then please do! I think it closes at the end of this month.
click here to vote for Seb...you need to register first and then you can vote in each category :-)

Daily Record

Article should be on thurs or friday - I will know the afternoon before so will post and let you know. Blog about shopping and new hair do to follow...

Back home..

I enjoyed the rest of my wee break in Ireland and although the weather turned against us, we still managed to get out and about and have a lovely time. On thursday we visited the Giants Causeway - I think they show this on all the TV adverts encouraging people to visit Ireland, but I must say it looks very different in the proper Irish weather.

It was a little wet..

...and a little windy!

Fortunately there was a wee bus that takes you down to the shore, as there is no way I could walk down there on crutches. Rather amusingly myself and Andrew got the bus for half price because mum had said to the driver "just us and the two young ones". He obviously assumed she meant two children - I know I only look about 15 but I think Andrew is pushing it getting on for a half fare, haha! On the way back up there were only three seats left on the bus so poor Dad was left to walk back up in the pouring rain. It's quite a hike up the hill and we all felt sorry for him as we browsed around the gift shop while waiting ;-)

In the afternoon we went into Derry for some shopping. We went to one of the big centres so we could get a wheelchair for me, as technically I'm not supposed to be walking about on this foot. I have tried to be good but it's quite hard when you are away on holiday. We managed to make a few purchases each (the men spent more than us!) although I was a bit huffy in my wheelchair. It took my right back to the frustration of pre-transplant and I hated the feeling - like I had just taken 10 steps backwards and was suddenly relying on everyone else again. I must say though, that despite the broken foot, I am still more mobile than I was before the transplant. At least I am not breathless and I am not tired and unwell, so it was still much easier to get about.

On Friday we went to Letterkenny for a look about and just did a bit more touring around Donegal. We also went to the cinema to see the new batman film "The Dark Knight" which was quite good. We did also go to the pub one night as they had live music. It hadn't started when we arrived and we thought we were clever taking a seat quite far from the speaker so it woudn't be too loud. Big mistake - we couldn't hear hee-haw! Although to be honest the pub was so noisy that I don't think the people standing right next to the band could hear much either. After enjoying a couple of pints of guiness we headed home, although I nearly forgot my crutches - funny how the guiness is a cure for so many ailments ;-)

So, all in all a great holiday was had by all. It's back to reality now though and already the foot is getting on my nerves because I can't just come and go as I please. Wee Seb is back home and has been giving me 'the stare' all day, hoping that I will take him a walk. I wish I could explain to him why I can't take him out...and I'm not sure how long it will be before I can. Very frustrating! On the upside though, I have my trip to choose a new outfit courtesy of the Daily Record tomorrow and then getting my new hair-do on Tuesday. I'm not sure how adventurous I will be but probably not very. Mum is coming to stay for a couple of nights as I can't drive to any of these places so she is having to be my chauffeur and dog walker again. Just when she thought she had her life back! Never mind, it hopefully wont be for too long. I think the article will be in wednesday or thursday paper but if I hear differently I will update the blog.

Leaving you with some more pics of Ireland...this time without the rain

Baby swallows in a nest!

Blogging from Ireland

It's me! From Ireland!

We set off early on Monday morning to catch the ferry from Troon to Larne - needless to say we were the last car on the ferry but we made it, so that's the important thing. We are staying in a small town called Buncrana which is a couple of hours drive from Larne, so it was late afternoon before we finally arrived. After the obligatory Irish 'cup o tea' we went for a wee drive around the local area, which is really beautiful, and then went out for dinner.

Yesterday we set off fairly early and spent the morning at the 'Famine village' which tells the story of life in Ireland over the past 200 years. It was really interesting and of course there was another 'cup o tea' at the end of the tour. It really is a shame that I don't actually drink tea! In the afternoon we drove up to Malin Head, which is the most northerly point in Ireland. We got out the car at the top of the hill, nearly got blown away and pretty much got straight back in! We then just did a bit of touring around in the car as I am pretty limited with walking at the moment.

Today I insisted on everyone going to a pet show in a nearby town called Clonmany. They have a festival at this time every year so the town was very busy. I enjoyed watching all the dogs in the show, although I think everyone else was pretty bored. I didn't however make them stay for the cats and rabbits ;-) It's a shame wee Seb wasn't with us as I am sure he would have loved meeting all the other dogs. I've heard he is having a great time at Anne and John's and they have sent us a photo of him lounging up on the sofa (which he is most certainly not allowed to do at home!) Amazing what he gets away with at his grannys :-)

My foot hasn't been too painful as long as I keep the weight off it although I am still hobbling about on crutches. I am getting pretty good at them now and can move quite fast - only problem is that my right hand is now hurting from leaning on the crutches and it's putting quite a lot of pressure through my breast bone (which is still healing from the surgery). I did want to do some upper body strengthening exercises though and I am certainly getting to do that so I won't complain too much! I did also have a bit of a minor panic before we left because I started to feel quite sick over the weekend and when I phoned Newcastle to ask about taking anti-sickness tablets they insisted I get some urgent bloods in case something else was wrong. I couldn't bear the thought of going to A+E for a second time that weekend so after a phone call to my CF ward they very kindly agreed to check my bloods on Sunday night. The main worry was that my magnesium levels were low again but they were fine. My kidney function was off slightly but this could be something as simple as not drinking enough, so I am taking lots of fluids and this can get rechecked once I am home. The other thing that could make me feel sick is the antirejection levels being too high - these bloods are processed by Newcastle though so I won't get the results until tomorrow or Friday. I have been feeling less sick as the week has gone on though, so hopefully it was just nothing at all!

Well, I will leave you with some pictures of my trip so far...

Glashedy Rock

View from Malin Head

Mum having a carry on (she may have been singing 'the hills are alive')