DAY 1

So there is now a trench in the back garden and a skip in the driveway.  Seb is not very impressed.  He was actually pretty good - I wasn't in when they arrived this morning but the guy said he only barked when skip arrived and then appeared to have settled down.  He seemed quite relaxed when I got home mid morning although obviously I couldn't let him out while the men were working.  I went round with him on the lead to tell them I was going out and Seb immediately tried to climb into the trench (on extended lead).  This is why he must stay in the house at all times!!   So far the skip is nearly full with all that earth - what looks like a small channel equates to a lot of loose soil.   They at least seem very tidy and had swept the patio and tidied up their tools before leaving so my first impressions are very good.

I did go up to the hospital yesterday and am going to get a few more tests.  There was a fungus called Aspergillus growing in the sputum sample from last week but they aren't sure how to interpret this. It can appear in sputum quite commonly, especially in CF because we all inhale the spores from the environment (it grows in damp areas and rotting leaves etc).   You breath in the spores and then your immune system deals with them - it doesn't mean the actual lung tissue is infected.  Prior to transplant I had something called ABPA (allergic bronchopulmonary aspergillosis) - which basically means you are allergic to the aspergillus spores.  So when you breathe them in your body reacts, causes a bit of inflammation in airways which can cause cough and chest tightness.   There is a known risk of it returning post transplant because after all I have the same immune system so this could be causing the cough - however it is still entirely possible the cough is just post viral and they have only grown this because I actually managed to give a sample (I never really cough now).  I have therefore had lots of bloods taken, including ones to check levels of my antibodies to aspergillus to see if reacting and will also get a chest CT scan to make sure lungs look shiny and in working order.  The chest x-ray looks perfect as always so this is just a belt and braces approach and will hopefully provide much reassurance.  This should be done within 2 weeks so at least will be all done and dusted soon.  I think its encouraging that I was able to take Seb on a long walk today and didn't feel breathless

Finally I will leave you with the latest painting I have done for mum - for her living room.  The brief was 'something with orange and red and quite bright - maybe a scene'.  I therefore have chosen a Tuscan scene as a reminder of the big family holiday we had last year.  I added in some poppies in the foreground for a splash of red to tone in with her new living room :-)  

Let the building work commence...

I can't believe we are starting the extension on Tuesday - I am excited and scared at the same time.  I can't wait until it is all finished but not so sure I will enjoy getting there.   We have chosen the kitchen and finalised designs for this - just need to source our own appliances because we weren't keen on the ones included.  We have decided on tiles for the kitchen and have a rough idea for the shower room (which is the utility at the moment).  I can't order these things too soon as I don't really have anywhere to put them - the dining room currently has boxes of flooring alongside all the raffle prizes I am collecting!  It all coming together and it will be good just to get started.  We had a quote for changing the doors in the house (not the ones I have just painted, the other chipboard ones) but the costs for fitting seemed quite high - so dad and Uncle Francis will now be landed with the job of changing all my doors.  They must love me a lot :-)

I had fairly busy week and spent Tuesday doing lots of work on the CF booklet as hoping to get this finished soon - need to make room for all my other plans!  I made good progress though and am really pleased with how it is looking.  I also have been working away on ball stuff and joined Victoria for a meeting with Santander about how they can help us.   On Friday we went into town for Victoria's New Lungs party which was fab :-)

I have been pretty tired the rest of the weekend so not being doing too much.  My cough seems to have reappeared and I found it really hard to get up this morning so think I will give the hospital a phone tomorrow to let them know things aren't quite right yet.  My temperature has been ok though so hopefully its all just post viral nonsense.

Seb has been up to his usual antics this week.  On Wednesday he hid in my bedroom when I wasn't looking and I was forced to leave him in there when I went to work.  When Andrew got back (before me) he was shouting on Seb and couldn't find him - that's because he was in such a deep sleep curled up on our bed that he didn't even hear Andrew come in!  He is a total chancer.  He was also really embarrassing when the guy came to service the boiler.  First of all I hadn't noticed him disappearing from the living room and then found he was in the front hall cupboard with the guy, watching what he was doing!  I shouted him through, which was fine until the guy went upstairs to check the radiators and Seb insisted on following.  Seb then came down the stairs ahead of the guy and stood across the bottom step and wouldn't let him past!!  The guy had to shout me to come and move Seb because he couldn't get him out the way.   Seb was also in the huff on Friday when he realised we were going out and he did his usual thing of lying upstairs with his head sticking through the bannisters in a forlorn way.  I have taken some pictures so you can fully appreciated the ridiculousness of his behaviour. He totally pretended not to see my taking pictures even when I stuck the camera right in his face..

A small caged animal  (note my nice painted staircase!)

Finally I will leave you with a Just Giving link.   For those who have known me a long time, you will also know the Gilchrist's, through my best bud Claire.  Anne Marie Gilchrist is doing a 70ft abseil to raise money for Bosom Buds which is a charity supporting breast cancer.  It is a great cause and something personal to me and also very personal to Anne Marie.  If you can spare a penny, have a look at her page HERE

6 Year Anniversary

It was our 6 year wedding anniversary last Friday  :-)  Andrew had the day off so we just had a relaxing day - looking at tiles and showers hahaha.  Seriously.   We did manage a lunch out and on Saturday went into town for the afternoon.  6 years has flown in but so much has happened in that time - ups and downs that many people don't go through in a life time of marriage but I am sure we are stronger because of it.  Hurray for us :-)

The tile viewing was because we now have a start date for the extension - a week tomorrow.  Eeek!  I think we have more or less decided on tiles and cooker etc but haven't made any purchases yet.  I am converting all my tesco vouchers to Tops Tiles vouchers because you get four times the value which will be a good wee saving.  I like to get a bargain where ever possible!

John managed to get me a Hawick cashmere teddy bear for my ball - he is so cute (the bear that is) and is called Sherlock.  These wee guys are mostly exported and worth a pretty penny (about £100).  I am doing a 'Guess Sherlock's birthday' because I think he is too cute to just give away in the raffle.  He needs a loving home :-)  If you want to guess his birthday then send an email to weejaq@hotmail.com to check if the date is available and I can mark your name in.  It's £1 a guess so if you are likely to see me or mum then you can pass the money on or you could also donate online at the Just Giving site (although £2 is the minimum donation on just giving so you would have to have two guesses).  Not such a bad thing...

Click HERE for direct link

Express Check Up

I was getting a bit worried over the weekend because my cough was starting to sound quite crackly, which is never a good thing.   I did go into work today but phoned the hospital to arrange a check over which they tried to arrange over the lunch period.  It was rather impressive...I arrived at 12.05pm, nurse took obs at 12.10pm, lung function took me in at 12.20pm, Xray took me at 12.35pm and doctor saw me at 12.45pm.  Now that's service for you!!  Reassuringly my lung function was fine and chest xray looked good so no major issues.  Probably a bit of infection secondary to having viral infection last week - although it could just purely be down to remnants of viral infection.  I've got some oral antibiotics for a week just to be on safe side and hopefully will be feeling back to full health within a few days :-)  

I had a fairly quiet weekend, at last.  Our building warrant has been authorised online but we still need the documents, however hopefully we can get started on the extension within a month :-)  So we were getting some kitchen plans drawn up at the weekend which should be ready sometime this week for us to look at.  Very exciting!!  Yesterday was the first really warm day in a while so I just chilled in the garden most of the day and then met some friends for dinner that evening.  A nice Sunday :-)

Andrew didn't think it was so nice because is a bit traumatised after he thought I had collapsed.  We were food shopping and I said I wasn't feeling very well and wanted to get back to the car, so I went ahead.  I got into the passenger side but since I had been driving, decided I better try and alter the driver seat so that Andrew could get in.  So while he went to put the trolley back, I was leaning over but couldn't quite reach, so ended up more or less lying across the driver seat, face down and pumping the wee handle to lower the seat.  Apparently if you approach the car and see someone draped over the front seats, seemingly with jerking limbs, you would think they had collapsed and were having a seizure.  So the car door flew open "Jacqueline, JACQUELINE!" and then when I sit bold upright saying 'What?" it's followed by "what the HELL are you doing???"   After realising what it had looked like, I then couldn't stop laughing for ages.  I'm not sure Andrew thought it was quite as amusing though..

I'm not working tomorrow so will try and have a restful day. Honest.

The Sun is Shining

At last, the sun is shining outside.   We have had non stop rain for all of July and most of August so I am hoping we get a few days at least - I really need a sunshine boost!  My cold is lingering and I have a slight tickly cough, which is just weird because I have got used to not coughing!  It is rather pathetic compared to the great crackling cough I had before but is annoying all the same.  More so because I worry about the wee lungs but I am otherwise feeling ok so clearly just remnants of viral infection, which incidentally is being blamed on Andrew who dared to breath near me when he had the cold last weekend.

Last weekend was very busy but great fun.  We had the big family party for my Uncle Hugh's 70th Birthday on the Friday night, so it was a mad dash to get home in time.  It was a great party with a nice mix of dancing and chatting - I was mostly dancing I must admit.  Mum had also written a fantastic ode which she read out after the cake cutting, and this went down well.  I decided just to stay at home for the weekend because my aunt and uncle were up from Grantham so it was nice to all catch up.  Saturday was pretty chilled although another quite late night and then on the Sunday we headed through to Rosewell for the party his parish had organised.   It was really good and they had clearly gone to a great deal of effort.    We had to leave a little early to get back home for a reasonable hour as we both had work the next day.  I was totally shattered!

Uncle Hugh with the cake

 It's me!

Work has also been rather busy this week for various reasons so in between I have not being doing a lot and just trying to rest up.   On Tuesday (my day off) I accidentally fell asleep for 2 hours in the afternoon just sitting on the sofa and only woke when my ipod, which was playing on shuffle, started playing 'working 9-5'. This is also my phone ring tone so my subconscious thought my phone was ringing.   I woke to find that Seb was no where to be seen, until I found him curled up on my bed fast asleep.   There is something not right about me sleeping awkwardly on the sofa and Seb snoozing in my bed!

He has been quite naughty lately (well, more so than normal).   When we left him at mums to go out on Friday he had managed to jump from a chair onto the kitchen work top, where he then wandered round, clambering over the cooker, until he found a bowl of blue berries and raspberries to stick his snout into.   He also knocked over 2 glasses (which smashed) and I suspect drank the dregs of Gin and Tonic because he really wasn't feeling too well the following day and didn't eat a thing!   No matter how Seb proofed we think the house is, he still finds something to get up to.   This morning I went out of the living room for 5 minutes and came back to find him tucked in behind the ornament on the window sill.   He tries to stay very very still in the hope I don't notice him.  It is hilarious.  I can't imagine it was even comfortable...

Stares straight ahead and avoids eye contact with me...

 Lies down and still tries to avoid eye contact...

Daddy's Boy - this is how Andrew carries Seb around the house - he sits there like it is a special ledge for him and then looks down on me from his perch!!

Ball preparations are coming along nicely and we do have a fair few confirmed ticket sales.  We are still waiting on the bank account to be sorted which is taking a ridiculous amount of time, so that we can start taking payments.   We have a band confirmed to play now, and also a few other interesting parts to the entertainment which I will keep as a surprise.  I am still pushing ticket sales so if you are interested please let me know so I have an idea of numbers.  Equally the just giving page will be running along side (link at top) so please feel free to pop a few pennies on there if you can't make it and therefore feel so guilty you are compelled to donate to my cause regardless.....!!

Victoria rises to fame...

My friend Victoria (main instigator of this ball) will be on The Hour at 5pm today on STV - watch it!  It should be available online if you miss it.  They said she can advertise the ball  :-)   For those who get the Daily Record, then yes, that was her last week with the bright green dress.   She is trying to outdo me in newspaper coverage and the TV thing is really taking the biscuit..

I will be back later to update on my adventures, although I have ground to a halt with a sniffly cold at the moment - think my body is telling me to sloooooooooow down.   Which is why I am blogging at 7.30am ;-)

A Week of Escapades

Wow, I have been busy and I am shattered!   After the wedding last weekend myself and Andrew headed down to London on the Monday.   We had a couple of nights in the city, met up with Corey and Monika and did a spot of shopping (obviously).   This spot of shopping involved me getting a dress for the Masquerade Ball.   Sadly it doesn't match either of the two masks I already have so I will now be forced to purchase a third mask.  It is tragic.

On the final night we went over to stay with Emily and her husband, which was fab.  We had a lovely afternoon and evening - and would have had a lovely morning I am sure had Emily not been admitted to hospital in the middle of the night!   She has been feeling really sick and although was discharged yesterday is now back in because they are not sure what is causing it.  Her chest is fine though so that's a big relief but hopefully they will get to the bottom of this asap and she can hurry home and enjoy her summer holidays.

 Peeking through railings at Westminster Abbey (because I wouldn't pay the £15 to go in!)

On our return I had a mad scramble day of meeting Victoria to check out the Oran Mor venue for the ball - which was amazing, and tanking through to Bathgate to pick up my little pooch.   He was SO huffy.   He would not make eye contact and when I lifted him up he deliberately turned his head away to face the other direction!  He was pretty keen to get in the car to come home though.

Here are some (blurry) pics of the venue:

 This is set for a wedding - see the vaulted glass ceiling and arches down sides - nice :-)

Tables will look something like this - but with our decorations (secret!)

Then on the Saturday we had lots of friends (Andrews school friends, but considered my friends too now - especially since it's always me who organises the get togethers!)   There were 11 of us and 7 people staying over (not including me and Andrew).  I had blow up mattresses in every room but it was great fun.   We were supposed to be having a BBQ but it rained on and off all day and we ended up having to fry the burgers and sausages instead.   Not quite the same but it was all demolished never the less.  Seb was quite well behaved and did not steal any food - however when he decided it was bedtime he did go round everyone huffing, sighing and staring intently in an effort to get everyone to bed haha.  He is so rude sometimes.

Sunday was another wedding!  After making breakfast for everyone I had to then kick them out by late morning so we could get ready.  It was our old flatmate Al's wedding - it was a lovely day and we really enjoyed it.  The service was really different as they had written their own vows and had a lot of personal touches which were nice.  It was good to catch up with friends and I think everyone had a great day.

Al and Clare

 

 

 With some of our old flatmates

I had Monday off but it wasn't really enough to regain my energy and I am still quite tired, funnily enough.  Probably because in every spare minute I have been doing 'ball stuff' - trying to get prizes (some good stuff but secret just now!), trying to get people to buy tickets, setting up just giving pages etc etc.  Victoria and Kirsty are the same so it can't be said that we are not enthusiastic at least :-)   I do somewhere in the middle of this have to try and finish the booklet as well, but annoyingly I had to go and do that thing called 'work' as well.   Not got time to be going to work haha! 

So of course I am having a quiet weekend to recover.  NOT.   It is my uncle's 70th birthday so there is a couple of things happening over the weekend, so I am off to mum and dad's until Sunday.  I might go for a nap just now and start building some reserves....

Just Giving

We have made a Just Giving Page so that people who cannot attend the ball but would still like to support this event can make donations - these go directly to Live Life Then Give Life.   There will be no escaping me and my fundraising hahahaha....!

Promoting!

This company has very kindly offered to give us a hamper for our masquerade ball auction/raffle and I in return have offered to display their link for all you people who might like to browse some scottish gifts.  I will also leave the link at the side for future reference

http://www.scottishhampers.co.uk

Full blog updating on my escapades to coming soon.....

Lady Bug

I had a lovely day on Friday at my friends wedding.  It was a great day, the weather was beautiful and there was a fantastic atmosphere at the reception with everyone on the dance floor all night.  I had my new shoes with the tiny ladybirds on them, with a polka dot dress.  A lady said to me that she had been admiring my shoes all day and that in fact she thought I just looked like a 'little lady bug'.  I took it as a compliment haha.

        

I have been really busy with ball organising this week and we have a few things more organised now.  It's taking shape nicely :-)   I am a little anxious about selling enough tickets but I am sure we will manage it and it will be a fab night.  Remember and keep raffle prizes for me and let me know about tickets asap!

I have also been working on the booklet and the drug company are happy to print whenever it is ready - I have said 2 months, so by the end of Summer.  Emily doesn't know this yet so guess she will be reading it here hehe...    I am going to see Emily this week  - I have not seen her since the walk last year!  Myself and Andrew are heading down to London for a couple of nights and then going over to Emily's for a wee visit.  We are both on annual leave so thought a few nights away would be a nice break - at least the weather is nicer down south after the constant rain we have had.  It will at least stop us painting for a while.

I did manage to finish the big canvas for mum although now she wants one for the other bedroom...

Book Your Tickets Now!!

Masquerade Ball

Friday 29th October - Door open 7pm, Meal at 7.30pm

Oran Mor, Great Western Road, Glasgow

(amazing venue - old converted church - check out their website - we have the auditorium)

Tickets: £50 each, includes 3 course meal, wine and entertainment.  Also raffle, auction and more...

It is only 3 months away and we need to start confirming numbers and collecting monies soon (deposits etc to pay) so tickets are officially available for booking now.   Details of payment will be available shortly.

For my personal friends and family - please contact me direct as I have an allocation of tickets to sell.  Tables seat 12 so if you have a group of 12 then an entire table can be reserved.

For interested readers of my blog please email us at lltgl.glasgow @ gmail.com  to purchase tickets or enquire further.

We need your support to make this event a big success  -  we can guarantee you a fantastic evening!

Masquerade Ball

My friend Victoria, who just had her transplant 2 months ago,  came up with the fantastic idea of a Masquerade Ball in aid of LLTGL.   Myself and Kirsty, who had her lung transplant last year and is another Scottish LLTGL advocate,  have joined forces to make this a huge success.  We have Team Glasgow in action :-)

There are tentative offers of a venue in Glasgow but this is to be confirmed. It will be a formal ball, with sit down three course meal and entertainment provided.   We are planning on a silent auction and a raffle and/or tombola for smaller prizes to maximise funds raised.   We have been contacting various companies looking for prizes over the last couple of days and have had a few positive responses so far.  We have a Walker short bread hamper, two tickets for Scottish Opera and I am just heading out to Glengoyne Distiller to pick up a 17yr single malt and 4 tickets for their master blender session which normally costs £30 per ticket.  Not bad for a days work ;-)  I think the unique point is that we are three double lung transplant recipients teaming up to raise awareness and I am hoping people will respond to this.

So, can you help???!!  If you work for a large company who may donate a prize or if you have anything yourself you could donate, then please get in touch.  We are looking for any prizes, no matter how small, as we will need lots of smaller things for raffle and tombola/lucky dip.  Of course if anyone wants to help by approaching local shops or businesses then please do so - we welcome any addition to our task force!    If you want to email please use weejaq AT hotmail.com.

Apart from all the ball planning I have mostly been painting.  Oh how much I hate painting wood now!  The doors with glass panels are proving the most tedious as I am either scraping or touching up or sanding down until they look presentable.  Hopefully we are nearly finished downstairs and upstairs should be quicker as it is just skirtings and facings.  I also need to get cracking with the other type of painting as I have some canvases to do for mum, who is changing her decor.  I have bought one giant 100cm x 50cm canvas to go behind my bed at home (it is of course still MY bedroom).  I had to get this in the art shop in town and carried it home myself....on the train.   I took up 4 seats on the train and then had to walk up the town centre with it under my arm, swinging it dangerously about.  It was nearly the same size as me and I am pretty sure people were staring.  It's too hard to park in town though so needs must and I was basically feeling a bit dare devil haha.

Work news is just busy, busy, busy.  I ended up doing a home visit scheduled for 3.30pm at 5pm, even though I finish at 5pm.  I could have just cancelled it but it's not really fair on the lady.  Luckily it is on my way home so I just went straight home after and probably got back at much the same time as usual.   I have also agree to be the staff grade representative at medical division meetings at work - basically sit and listen to the consultants chat about management issues and take forward any staff grade issues.  Myself and Jamie from work are going to share the responsibility and also organise the medical student teaching programme together.  This is good stuff for my CV though!

Well I better go and do something useful.....maybe a drop of painting.

Ten Lessons of Painting

1. Make sure you haven't got paint on your slippers before wandering around the house
2. Make sure you don't have paint in your hair before going to work
3. Make sure you don't have paint on your glasses before going to work
4. Do not use blade from dissection kit (you got at med school) to scrape paint from glass.  It will snap in two.
5. Try to limit the amount of volatile paint substances you inhale.  You may not sleep. At all.
6. Limit the amount of volatile substances the dog inhales.  The dog might not sleep.  At all.
7. Do not allow dogs with ridiculously large and fluffy tails to wander through newly painted doorways
8. Do not avoid changing into old clothes because you are "just going to touch up this bit so wont spill any paint"
9. Do not use fingers to "blend" paint. You are not doing a piece of art work even if the brushes do look similar
10. Make sure the door can shut easily before adding another inch of paint around the edges. It might jam.

Yes, we have been painting and I have learned a  lot through the process - which is far from complete.  There is lots of dark stained woodwork in the house and we have been talking about painting it since we moved in.  We did paint the skirtings and windows in the dining and living room but I really couldn't tolerate the paint fumes pre transplant - to the point I would be coughing up blood the next day.  However we took a notion at the weekend to start work on the hallway which has a stair case, three glass panelled doors (with 15 tiny panes), lots of skirting boards and, including upstairs and downstairs, 10 doorways that need facings painted.  It is a mammoth task!  The wood is stained dark mahogany and makes the hallway very dark so we are priming all the wood and then painting it white/cream satin.   I have given up on the primer because it made my chest feel a bit funny, so Andrew is priming and I am painting with the satin (it's water based so low fumes).  So far I have finished the staircase, which took ages, and one panelled door.  There is a long way to go but already the hall looks brighter and bigger, so we are really pleased with how it is looking.  This is the start of house decorating which has been put off for so long and since we are going to be doing the extension, we thought it best to get started.  There is still no word on building warrant but it can't be too much longer..

It seems to have been a really quick week, probably because been busy painting when not at work.  I caught up with my friend Alison on Thursday which was great and tonight we are going through to Edinburgh for Jennifer's birthday.   Yesterday I met with a psychologist from the sleep research centre in Glasgow whom I arranged to me to discuss a patient, so that was really interesting and I now have a pile of articles to read.  I am rather keen doing that on my day off but I plan to take back the time when I get the chance -probably go in later one morning because the chances of leaving early are pretty remote.  I also had my consultant at work fill in a citation explaining why I should be an affiliate of the Royal College of Psychiatrists, so that was approved and I can now get the journal and attend meetings etc.   You are automatically a member once you sit all the membership exams but my route through psychiatry has been different because I haven't been able to sit the exams yet have been working in this area for a long time and would benefit from membership.  They therefore have the affiliateship to the college as an alternative.  Still costs me a pretty penny though..

Anyway tomorrow is the end of National transplant week so it will be interesting to see what statistics are on the organ donor register sign up rates.  My little poll showed that most of my blog readers were already registered - only 2 said they weren't and one signed as a result of the post.  It is not surprising that readers of my blog are more likely to be registered (I go on about it enough!) but there was also a large proportion of doctors signing the poll after I posted in on the doctors forum - so encouraging to see we at least practice what we preach.  I am probably preaching to the converted via this blog but will consider some other ideas of reaching people who have not been educated about organ donation.  Any thoughts welcome :-)

National Transplant Week

Today marks the start of National Transplant Week so I thought  I would go over some of the reasons people don't sign the donor register and see if I can change a few minds.  If one person signs up after reading this post, then it was worthwhile :)

General Facts

• You can donate kidneys, liver, lungs, heart, pancreas and small bowel - saving up to 9 lives
• Corneal tissue can give someone eyesight
• You can choose not to donate particular organs/tissues
• 94% people agree with donations, 96% would accept an organ - but only 28% are on the register
• 8000 people in the UK are waiting for transplants but less than 3000 are carried out each year

"I have just never got round to it"

Probably the most common reason.  It's not something we tend to talk about in day to day to life and can be a uncomfortable topic.  We are usually too busy to even stop and think about this topic, especially if it not something that has affected your personal life.  New statistics have shown that 96% of the population would accept an organ if they needed a transplant.but only 28% of people have signed the register.  You need to consider if you are willing to accept an organ, are you willing to give? Transplant is not something that happens to "other people" - it is something that could happen to someone close to you or even happen to you.  So don't put it off any longer - sign up online in 2 minutes and make a decision that could change someones life forever.

"I have a donor card already"

The old donor card is not linked to the register - you need to do this online or via telephone.  The card is still useful but cards can become lost or damaged and you may not be carrying it at the time.

"My family would know what I wanted"

Would they really?   40% relatives do not agree to donation because they weren't entirely sure what the person wanted.  Even more important than signing the register is making loved ones aware of your wishes.

"I am too old anyway"

There is no cut off for age - people in their 80s have successfully donated organs and tissues.  The doctors can decide on individual cases so let them make that choice.

"I am too young"

Anyone can sign the register - there is no 'age of consent'.  Relatives would always be consulted in every circumstance, so again discussing with loved ones is the most important factor.

"I have a medical condition and/or take medication"

Most people with medical conditions can still donate - professionals will decide which organs would be suitable.  The only conditions which prevents donation is HIV and CJD.

"I wasn't allowed to even give blood - surely I wouldn't be able to donate organs?"

The criteria for blood and organ donation are completely different so don't let this put you off!

"They might not try and save me if I could be an organ donor"

The doctors first duty is to care for you - the treating doctors will not even be aware whether you are on the organ donor register.  This information would only become available after you died, at which point a different team of medical staff would assess for organ donation.

"My organs might go to someone in another country"

Organs would only be offered to other European countries if there is no match with anyone in the UK.  This ensures that organs are not wasted, and that UK patients are also offered organs from other countries under the same circumstance.  Believe me, as someone who waited 2 years for my lungs, I would accept organs from any country!

There are lots of reasons affecting peoples decision to sign the register so feel free to ask any questions you might have.  Could I ask people to click on my poll as to whether they have signed the register, have not or have now signed as a result of this post.   Can I also ask people to leave me a comment with reasons they have not signed the register (you can do this anonymously) so I can get a clearer idea of peoples concerns.   I am not here to talk people into signing the register - my aim is just to make sure you have all the facts in order to make an informed decision.  I do not believe people should be forced to donate - it is a gift that must be given freely and there cannot be a more important gift than this - the gift of life.

Click HERE to sign the register

Foxes....(and other ramblings)

Andrew took this video clip from our upstairs window a couple of weeks ago. He had looked out at 7am and saw two adult foxes with two fox cubs playing in next doors garden! The cubs were really cute and were rolling around with each other, enjoying the early morning sunshine. Of course with all the bad press foxes have had recently mum was horrified by the video and would like me to batten down the hatches ;-) Despite the fence I know the foxes can jump into our garden because I have seen them during the night and they also leave evidence of large foot prints in the vegetable beds where they jump the fence! I therefore don't let Seb out early morning or late evening on his own (he probably does look like a tasty rabbit) but I still think it is fascinating seeing these animals so close up.

fox (click image for video link)

I had a quiet weekend after a rather hectic week. The weather was quite overcast but we did manage to do some garden tidying which seems a never ending task in the summer and visit mum and dad for some free dinner.  We have not had any news about the building warrant yet but hopefully it wont be too much longer and we can get started on the extension this year!

Friday was a very reflective day as I attended the funeral of a fellow colleague with CF. He was in my year at university and we both ended up in the field of psychiatry. He had been doing well on this path, having passed his membership exams last year and also getting married. I heard the sad news about his death from my friend, who is also a psychiatrist, and we both attended the service along with some other colleagues. We did not know each other very well, and in fact, were kept segregated at university due to cross infection risks but of course I also knew him through CF clinic and I always thought it so unusual that we should both be in the same year at medical school. It gives me a stark reminder of what a devastating illness CF still is and how lucky I am to have been given this second chance. Life is indeed short and I am so glad to be still living it, loving it and sharing it with the amazing friends and family around me. (and seb :-))

I am Alive!

As predicted in my blog the last 2 weeks have been super busy and this week has so far continued on a similar thread. I had a conference on Bipolar disorder a couple of weeks ago, which was really interesting although took up my days off - need to try and get some time back.  Then last week I had a 2 day course on suicide prevention which actually wasn't very helpful because it was covering things I already do in every day practice.  It has been rolled out as an initiative to meet government targets of reducing suicide rates by 20%.  It is a great target and we should work towards this - but the course wasn't really aimed at people working on the front line with mental health.  Anyway, I did attend for the full course and got my lovely certificate and I wont say any more on the matter!

The last weekend was rather hectic as it was Johns (my father in law) 60th birthday party.  There was a bit of a Beatles theme going on with an amazing Beatles cake (made by mums cousin's daughter - see her website) and myself and Andrew had made The Beatles themed invites with John's head photo shopped on the Abbey Road album cover.  We wanted to do a comedy sized head but he wouldn't let us ;-)   He also had CD coasters with The Beatles album covers (although people would be sadly disappointed if they took them home thinking they actually had The Beatles music on them haha).    The party was a big success and everyone had a great night.  I danced away, despite stupidly high heels, and had a fab time.  John of course had an even better time :-)

Birthday boy speech - with banner looking like a giant arrow pointing him out!

It was a 1am finish so we were pretty tired the next day, especially after I didn't sleep too well.  But then I got a text from my friend offering myself and Andrew spare Paul McCartney tickets for the Sunday night at Hampden!!  I couldn't really turn down such an offer so we headed back home asap (not so subtledly hurrying up poor Andrews gran as we were giving her a lift home) got organised and managed to work out a train route to avoid trying to park.  The train was mobbed and some guy wearing a waterproof jacket (it was about 21c!) was completely stuck to my back as we stood just beside the doors - I had to literally peel myself off - euggggh!  Anyway, the concert was fantastic and a great experience.  He played for over 2.5 hours solid and covered all his most popular work, including a lot of earlier Beatles songs that he had written.  Given what I said above about John's love of The Beatles we did feel a bit guilty, especially in his 60th birthday year.  Guilty enough to send some picture texts telling him how truly awful it was ;-)

This week was off to a bad start with what I think was food poisoning on Monday.  I thought I was dying!!  I had been fine all Sunday but about an hour after going to bed I woke up absolutely freezing cold and shaking violently and couldn't stop.  I knew I had a fever but couldn't move to get paracetamol so instead took the sensible decision of crying quietly to myself (and then gradually getting louder) until Andrew woke up.  I don't know why I didn't just wake him - this didn't seem to occur to me at the time.  My temp was nearly 39 which is really high for me (even in my pre transplant days) so I was quite worried.  I was telling Andrew to look for a rash in case I had meningitis (I am a complete drama queen) but then was shouting at him for pulling back the covers because I was so cold.  I am a nightmare ;-)  Clearly I did not have meningitis but did feel lousy for the next 24 hours with bit of dodgy stomach and ongoing temperature, but then equally as quickly as it started, it then stopped and I woke up on Tuesday feeling fine!!  Just as well because I had an 8.30am appointment with the diabetic nurse..sigh. 

I have since been feeling fine other than being more tired this week.  The appointment with diabetic nurse went ok and she thought my sugars weren't too bad.  We are having another joint appointment with the dietician tomorrow to work out my insulin to carbohydrate ratio.  Fun fun.  She did give me another two blood monitors though because my one was being dodgy, and then I phoned to report the dodgy one to the company and they are sending me another two as well!  I suppose I could have told them I had extra but thought I could maybe leave one at work and one in the car.

So this weekend I need to finish making my uncles birthday invites and also make some power point slides for audit presentations next week.  And maybe get some sunshine too :-)

Where did the sun go?

I was just starting to enjoy all the nice sunshine when it disappeared again!  Saturday was a lovely day and we were at my friends fundraising BBQ.  Lee and Ali are taking part in the Caledonian challenge this year which involves walking 54 miles in 24 hours with hills amounting to having climbed Ben Nevis twice.  I am tired even thinking about it.   The group is called Gin'll Fix It  - although I am not sure gin will be enough after that kind of challenge.  The money raised is for the Scottish Community Foundation which funds community groups and initiatives throughout Scotland - a lesser known but very important charity.   The BBQ was a big success and the sunny weather certainly added to the day :-)

I have been steadily working away on the CF booklet and have finished three chapters now and Emily is also working on a couple at the moment.  There is still a lot to cover although I have tackled some of the larger topics first and I certainly am much quicker than last time as I more used to the publishing programme and have learnt from the many mistakes I made!  I have spent a lot of time researching topics but my CF team have also been very helpful in proof reading and contributing to the booklet - making sure I am not away on some tangent ;-)

Work has been busy and I really do need to look at my ever expanding case load and see if I can discharge anyone.  I see two new people a week and often some crisis patients - but I don't discharge 2 people per week so it keeps growing and growing!!  It can be difficult because most of my patients have chronic illness but it can be argued that they don't all need followed up and instead could be referred if further problems develop.  It's difficult to strike the balance.  I have also been doing an audit at work on rates of non-attendance for first appointments which are somewhere between 30-50% each month!  That is a lot of wasted hours on our behalf and only serves to lengthen the waiting list due to rebooking people who miss appointments.   There are many reasons people don't attend but most commonly it is non engagement with the idea of coming to clinic - eg. the GP has suggested it but the patient really wasn't that keen.   An opt in system where the patient is invited to phone and book an appointment can help with this problem and is something I think we could consider.  We have audit presentations next month so I will see what the other resource centres are doing and what experiences they have with this system.  Maybe I should just start running the whole show ;-)

The next two weeks are really busy because I have a conference this thurs/frid and then training the following thurs/frid so my days off have disappeared.  I am off today however and although I needed to visit the hospital for some routine bloods this morning, I am now heading off to meet my friend for lunch - it's a tough life indeed :-)  I will leave you with some pics when I have been out with Seb recently...

There is quite a drop down to the river from this bridge - Seb likes to jump onto the bridge and peer over...

Action shot:  Seb running back after having a wee drink in the river!

Lovely woodland - only 5 minutes from my house..

Seb being asked to sit and wait while a cyclist passes - he is rather intense!

At the country park at 9.30 am on a Saturday ..... I think I might be solar powered :-)

Perfect Patient

I had a glowing report at transplant clinic so now have a 6 month reprieve until my next visit - can't believe it will be nearly Christmas when I go back!  My oxygen levels were 100%,  blood pressure spot on and lung function was exactly the same as last time at 107% (2.99L).    For some reason my lung function is always lower at CF clinic  - probably just a different machine and also at transplant clinic the lady turns the monitor round so I can see the graph as I blow which I think helps me do even better.   It does however make me quite anxious as I am never sure if there has been a drop or if it's just the machine - I hadn't realised how anxious I was until after the lung function tests were over!  When I went into see the Prof he had a visiting surgeon from Barcelona with him and he said they had just been sitting admiring my chest x-ray.  It's quite sad when I take that as a huge compliment haha.   I also asked about pain meds for the joints and there are some anti-inflammatory I might be able to use if it gets really bad but I would need my kidney function monitored at the same time.  I am just going to stick with the regime I use for my sinuses but good to know I have other options as they are being rather troublesome at the moment.  

Anyway, overall I couldn't have asked for a better report so am more than happy and continue to be amazed by this wonderful gift.  I also managed to pop up and see Victoria on the transplant ward and she was looking great!  She is progressing really well and is now moving to the flats so will hopefully be heading home soon.  Great to hear another success story and it does illustrate the need for more donors and the dramatic change it can make to someone's life.

The Adventures of Seb

I am heading down to Newcastle tonight for clinic tomorrow morning, so thought I should do a quick update before I go.  I am hoping for good news and in light of the fact I got on well at my CF annual review last week, I don't anticipate any problems.   I got a gold star for walking further in the 6 minute walk test this year and my chest sounded A1.  I am going for a bone scan to check the osteoporosis situation as I have not had one for several years, and I am also meeting up with the diabetic nurse and dietician next month to try and work out a more accurate insulin to carbohydrate ratio as I am still having quite a few hypos (low sugars).  My joints have also been playing up this week and are pretty sore but I know it will just settle down on its own again. Otherwise everything was fab :-)

This week has been eventful for little Seb so thought I would share some stories.   It all started last weekend when I decided once and for all to stop him barking in the garden.  Now I don't mean stopping him having a wee woof now and again - I mean stopping him going beserk and barking his head off for no apparent reason.  The dog trainers suggested a super soaker to spray him when he barks - we used the same method of spraying him with water when he barked like a lunatic at dog training and it was very effective.  I don't have a super soaker and with a 90ft stretch of garden it wouldn't reach him anyway.   But I do have a hose.  So last weekend I was out in the garden in my pyjamas at 8am spraying Seb with the hose every time he barked.  He very quickly got the message and for the next couple of days there was blissful silence.  However he was clearly not happy with this power struggle so has just decided to be naughty in other ways to get his own back ;-)  It started with him refusing to come in one evening which ended up with me and Andrew chasing him around the garden at 11pm until we trapped him behind the greenhouse!   We then realised that the next door neighbour was in his garden and could see us running around like eejits (me in my pyjamas again).  Unfortunately he was also out the following morning when I was out in the garden again with the hose - this time fully dressed for work but with my dressing gown on top as it was quite chilly.  Andrew did point out when I came back in that it looked as if I was just wearing a dressing gown with black high heels.  Oops.

Things calmed down a little until we went to visit my friends Lee and Ali for dinner this week.   They have a big garden down a private road so I was confident that Seb could run around off lead.  This was fine until he decided he was very interested in the next door neighbours garden and pretended not to hear me calling as he darted up their driveway.  I had to go after him and was slightly embarrassed to find the neighbour was standing outside with some guests who were just leaving.  In a bid to escape me Seb even tried to get into the car with the people leaving!!  I caught him and came back indoors - but the naughtiness did not end there.  Over the course of the evening he had jumped on the kitchen table twice, stealing a biscuit the first time, and also tried to climb into the bath, for reasons unknown to myself.   It is like having a small child at times.

He did also have an unfortunate incident of falling down an embankment this week.  I shouldn't laugh but it was quite amusing - he was there one second, then he was gone!  He had tried to climb down this almost vertical embankment to get down to the river but had obviously slipped and I could hear him scrabbling around - he is like a tiny mountain goat and got back up no problems but must have pulled a muscle because he has been slightly hobbling since.  I decided however that if he could jump on the kitchen table and run off at high speed then there wasn't that much wrong with him!

I have also been working hard on the CF and Body Image booklet and have completed the first couple of chapters, which were fairly involved.  I think it is looking good so far and would aim to get it all written up by the end of the summer - at which point we need to see if the drug company will still sponsor it (looks promising though).

Well I am going to go and enjoy the sunshine today and will report back once I have some Newcastle news.