Gold Star

I was at transplant clinic yesterday and got an all round great report. Blood pressure was fine, chest x-ray clear and lung function up to 104% (fev 2.94l) which is 1% higher than last time. They call it "stable" - I call it an improvement :-) Everything else was looking ok - kidney function has been stable and I am now down to the maintenance steroid dose and it doesn't seem to have rocked the boat at all. I need to phone on Wednesday to check this weeks blood tests and drug levels but I am sure they will be all as before. I completely confused the lung function lady by putting down my maiden name on the arrival sheet and then responding to that when called only to then looked confused when she couldn't find any case notes for me! We worked it out in the end but no idea why I did that - I do use it at work so perhaps being in a hospital I just thought I was at work ;-)

I have to go back in 3 months which is not bad. I was hoping for 6 months but it was a different consultant I saw this time so I didn't want to argue it - and to be honest I would rather be kept a closer eye on especially when they are still adjusting medications at this stage.

We has a busy weekend with a wedding reception on Saturday night in Hawick. We headed down on Friday to stay with Andrew's mum and dad so at least got a wee catch up. Saturday was quiet during the day and we took Seb a long walk in the autumn leaves which he loves. The wedding reception was nice although we didn't make it a late night as I was heading to Newcastle the next day. On Sunday morning we managed to catch up with Andrews good friend who has been away travelling for 18 months and just arrived home last week, so that was really nice.

At the wedding

Seb was pretty confused my everything - arriving in Hawick but not being left by us, then mum arriving on Sunday and taking me away and then Andrew taking him home again. He is getting a lot better though and starting to take all this moving about and swapping and handing over in his stride. I think as long as one of his 'pack' his around then he is ok! I did get a lovely welcome yesterday which I was not expecting so he is definitely growing up.....maybe ;-)

Seb loving all the leaves!

Me and my wee boy!

Autumn Wedding

The wedding last weekend was lovely and the weather could not have been better. It was a perfectly still sunny autumn day - perfect for photographs and guests mingling in the gardens of the hotel. The wedding took place in Alloway - the church was next door to the lovely Brigadoon hotel where the reception was held. The bride of course looked amazing and she had obviously paid a lot of attention to detail, with everything coordinating on a theme of gold and maroon. The first part of the evening was a celeidh and the second part was disco music, so everyone was catered for. It was great to catch up with all my flat mates again - some of whom were staying with us in the house in Ayr, which was even better as we managed to go for lunch on the Sunday as well. One of our other flatmates, Al, also announced that he is getting married next year - so that will be another wedding to look forward to. We are obviously at that age where all our friends are getting married. I guess it will be lots of christenings next..

Sunset in Ayr

The Happy Couple

Us...but you get a week peek at the room

Our old flatmates and their partners

Jenny looking lovely!

I wasn't feeling too bad during the wedding weekend and I have been feeling better this week - I am still taking the antibiotics although I suspect it was more viral. A lot of people at work have been unwell so I probably picked up something there. Coincidently I say the facial pain doctor this week - we have decided to stop the first drug I tried (dosulepin) as it wasn't really helping, and to increase the gabapentin. The idea is to slowly try and get it to maximum dose so we can know for sure whether this helps or not. I am not sure how quickly I will manage this as I was really knocked off when I first started it, and to be honest am still much clumsier than normal. I have increased it to the next stage and so far I am ok. He is also referring me to a more general pain specialist as he doesn't really think this is facial pain syndrome - and more a chronic pain issue that has developed on the background of acute sinus pain which went untreated for a long time. The doctor he is referring me to is apparently quite innovative so goodness knows what I might end up on ;-) I will try anything to be honest -it is not so much the severity of the pain, but the chronicity. Although I can work, and go out, and get on with life, it is always just there - sometimes in the background and sometimes much more to the fore -but I would love for it to play a much lesser role in my life. I know it probably cannot be cured but if it can managed then that is all I am asking for.

I am in Hawick at the moment as we are going to an evening wedding reception tonight! It is good because it means we are able to stay with Anne and John and get a good catch up. I am also going to Newcastle on monday for my review so my mum can just pick me up from here and we are only about an hour away. It is three months since my last review and in that time I have reduced my steroids from 10mg to 5mg so I am hoping there has been no negative impact on my lung function. I feel as if it is fine - not been breathless at all -so fingers crossed I excel myself :-) I am also hoping if all is well that he might suggest a 6 month gap but I am perhaps being optimistic!

I will have to report back soon with a Newcastle update and more wedding photos..

Feeling a bit sorry for myself..

I've not been feeling too great this week - mostly sinus related I think. The pain has been getting worse and worse all week - I thought it was quite bad at work on Monday but by Wednesday it was the sorest it's been for ages :-( I exhausted all my painkiller options, stuck some cool gel pad things to my face and in desperate attempt starting raking my cupboards for some dihydrocodeine. Always a bad sign. I went to bed really early last night to see if that would help but still felt ropey this morning so gave the CF team a call to see if they thought some antibiotics might help. The consultant called me back and we agreed on Ciproxin (which I had earlier this year) as we do still need to cover the psuedomonas bug that I no doubt still grow in my sinuses. The down side is that it makes me feel sick and last time made my joints worse - but he has given me some anti sickness tablets to take with them so hopefully that will help. I am generally feeling quite off colour, have lost my appetite and feeling quite sorry for myself but at least I have done something about it so fingers crossed I will pick up asap.

It was weird feeling not well today and I didn't go into teaching because of it - so although I was up quite early I was just sitting about all morning which takes me right back to how I used to feel. It all comes flooding back and I hate it! After 30mins of morning TV I had to switch it off - it made me feel horrible inside as if in one fell swoop I had lost everything I have gained in the past year. Totally overdramatic I know - but memories can be very powerful and it also makes me realise how fragile we all are (even me). I ended up getting into bed for a couple of hours and reading my book - something I didn't do pre transplant no matter how bad I felt. I had this odd notion pre transplant that if I started doing things like taking to my bed during the day then I had already lost the fight. I was a stubborn wee thing. But today I decided I deserved a lie down and Seb came with me ;-) This is very naughty as he is not even supposed to be in the bedroom but he is so cute and fluffy and like a hot water bottle! My mum will go mad when she reads this ...

I am actually going to a wedding this weekend so hoping that after another early night I will feel a bit more like myself. It is Kenny and Jenny's wedding - Kenny having lived in the flat at uni. They both live in London now but the wedding is in Alloway so a bit closer to home for me. My mums friend has kindly loaned me her holiday home for the weekend so we are heading there tomorrow with some friends. The wedding is on Saturday and it is forecast to be very sunny so fingers crossed that it's a lovely day for them.

I think I am about done with the moaning now so will report back when I have something cheery to say :-)

Signing up the students


So last week I went with my friend Lucie to spend a few hours at the student union with our little organ donor desk. I must admit it was really hard work! I had hoped people would approach us but although we were highly visible and positioned right beside the main door people would just walk on past in a hurry to get on with their day. We had to work hard to just grab peoples attention as they walked past. At first I started with 'excuse me, are you interested......" and that was as far as I could get before people said 'No!' without even knowing what I was talking about. So we eventually went for the more direct "Are you on the organ donor register?" shouted at people as they walked past. This usually got attention and we managed to chat with a lot of the students. I was surprised how many were actually already on the register, mostly through the tick box which is now on the driving licence application. I was also surprised at how many said "I'm not sure...I think I am!" possibly showing that not much thought had been given to the process, or perhaps that they just don't have strong opinion either way.

For those who said 'no' the majority said they had either not got round to it or just not thought about it at all. A few people wouldn't comment and a few people gave answers such as 'I don't want cut up' and 'I need my organs'. I did kindly point out to that guy that he did not really need his organs when he was dead but by this time he had lost interest in the conversation ;-) I suppose some of the very flippant attitudes really got me mad probably because the issue is so close to me. I was able to be non judgemental though and tried to gently point out facts such as them being much more likely to need a transplant than to ever donate - so what would they do if they needed an organ? Would they hope someone else had signed the register? Also pointing out that if a relative needed a transplant then, again, would they expect that person to benefit from someone else signing the register? It gave some people food for thought and I would give them a leaflet explaining more about organ donation so they can make an informed choice. Another interesting point was the number of people who would donate everything apart from their eyes. I don't think this is explained clearly in the leaflet - but just to emphasise that they do not take out your eyeballs and then just stick them in someone else's head. The donor recipient would only be receiving the cornea, which is the small clear layer at the front of the eye - so they would not look like they had your eyes!

So on the topic of peoples misconceptions about organ donation and transplantation - if you have any questions, no matter how small, about this topic then please post in the comments section and I will try to answer in next blog!

All in all I think it was a successful day and we handed out more than 150 leaflets and these were only given to those people who were genuinely interested so hopefully a good number will actually sign up. One of the problems we did have was people thinking we were promoting blood donation - I think because the donor card symbol I used on the poster looks very like the blood donor card (the same charity UK transplant runs both.) This can be remedied by simply altering my poster and I also think the new leaflets on organ donation which have just become available are a completely different design. My next project is setting up a stall in Glasgow medical school. They have a massive new building where all the medical students go to during the day and I have already been given permission to hold a stall in the foyer. The first years will learn about transplant at the end of this month so we are hoping to tie it in with these dates and get the tutors to tell them in advance that we will be there. Should be interesting to see if the medical students have different perspectives!

The rest of the week was just the usual work but at the weekend we went to a masked 30th birthday party. We had managed to get these great masks while we were in Tuscany - they had lots of masks hand decorated in Venice and they were lovely. I had a green mask to go with my dress and mum bought Andrew this massive gold and cream mask which according to the shopkeeper is meant to be Casanova! It was good fun getting dressed up with the masks although we didn't last very long wearing them. I think it would be fun to have a charity masked ball - I will have to get mum to do this as her next fundraiser. She is having an auction next month which should be great fun - this is what I am making some cards and also the butterfly charms for. I think she will have sold all the charms before the auction so any relatives reading this who want one, you better catch her soon :-)

Drama Queen

It's Seb's 5th birthday today - he didn't get a cake but he did get a really long walk off lead and a whole cocktail sausage afterwards ;-) It's hard to believe the wee guy has been around for so long. He arrived just as I started to decline health wise and although some people might think I was daft getting a dog at that time, I really think it was the best decision I ever made. He has been a life saver at times - as my health declined he gave me motivation to still try and walk every day and he kept me company through the long days when I had to give up work. He has been a great source of amusement with his hilarious antics and naughty behaviour - and to be fair he really is the cutest wee thing!

Last week was a bit mixed for me. I have still been feeling a bit down at times and this does make work very difficult as I spend the day listening to other peoples problems. One of the major problems just now is my sinuses which for some reason flared up when I got back from Tuscany and I have been popping pills like sweeties but there is not much relief. This does make it really hard to concentrate at work and makes me rather irritable (not to patients though!) By the end of last week I was feeling a bit better about work so hopefully I will have a good week ahead. I also facilitated a couple of sessions at the university so perhaps I over did things a little (not like me at all ;)) I do really enjoy the university work though as it makes me read up on topics I have long forgotten and I also enjoy interacting with the students - it is a nice change from my normal working day.

On a lighter note I forgot to mention the coffee incident that happened while waiting at the airport for the flight to Tuscany. We were sitting having coffee and I was perched at one of those really high tables where you sit on bar stools. I have been even more clumsy than normal since I started the gabapentin for pain. I am not sure exactly how it happened but I basically knocked over by cup of boiling hot black coffee, covering both Andrew and myself. I leapt off the stool and stood in the middle of the coffee shop shouting "It's burning, it's burning" (although my uncle insists I actually said "it's burny!") very loudly while jumping up and down. I did realise that everyone in the coffee shop was now staring at me, open mouthed waiting to see what happened next. I darted off to the toilets to try and get some cold water as I had scalded by hand and the hot jeans were sticking to my leg which was really quite sore. I then realised there was no cold water in the toilets - just one tap with hot water! I got myself into a cubicle to strip the jeans off while mum went off to try and find some cold water. She managed to get the cleaner to let her into the storage room beside the toilets which had a cold water tap - so I dived out into the toilets in my pants and then stood in this wee room surrounded by mops and buckets running cold water on my hand. The cleaner (who was male) took my jeans and dried them under the blow drier for me. It wasn't until afterwards I realised how bizarre the whole situation was! Of course when I got back to the coffee shop I realised I had covered Andrew more than myself yet he was just sitting quietly with his soaking wet and now stained beige trousers. No fuss. No drama. But maybe I should have been on the stage...

I think this week will be interesting - I have arranged to set up a stall in one of the university unions to promote organ donation. I spent yesterday making up a board with facts and information and I have lots of leaflets to give out with all the FAQ and a form to join the organ donor register. My friend Lucie is helping me so I am not too nervous about it and I will have someone to talk to if it is quiet. I have no idea if this will be successful but I do think students are a good group to target so fingers crossed :-)