Wednesday, September 24, 2008

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....

Monday, September 22, 2008

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!

Thursday, September 18, 2008

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....

Friday, September 12, 2008

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!



Tuesday, September 09, 2008

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)

Monday, September 08, 2008

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!)

Wednesday, September 03, 2008

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 :-)