5 Wonderful Years!
 

Yesterday was my 5th transplant anniversary - what a fantastic milestone if I do say so myself ;-)  These are the lovely flowers Andrew got me.   I was at work in the morning, running around telling everyone how important the day was haha!  In the afternoon I was giving a talk at the Regional Collaborative Meeting - this is essentially key players in organ donation, ITU and A+E consultants - all the people involved with identification of donors and dealing with donor families in Scotland.  I was really there to give them the recipient perspective as they never actually hear what happens to the organs afterwards or meet anyone who has been saved by their good work.  It was great being able to give this insight, while also being able to emphasise how grateful transplant recipients are to their donor and families.  It put a face to a process that many of the doctors find difficult.   I tried to keep things fairly light hearted as well - I noticed they had made an organ donor card cake (to celebrate the increase in donors over past year) so my opening quip was to thank them for baking me an anniversary cake  :P

It just seems like yesterday that I had that call.....but looking back now, I have also done so much since then! 

Back to work in a permanent post for past 4 years (only few days sick leave and that was 3 yrs ago!) and becoming much more involved with projects at work, knowing that I am going to have the energy to see them through.  

Lots of holidays with Andrew - Paris, Berlin, Sorrento, Cyprus, Cape Verde, Nice....to Florida with family and big family holiday to Tuscany, to Copenhagen with my best friend, to London with Victoria and lots of sneaky weekends between.   13 weddings ( and being Maid of Honour for Sarah), several Christenings and becoming a Godmother to Caoimhe.

Countless organ donor desks, talking to schools, to NHS Staff, pulmonary rehab teams, CF teams..and goodness knows who else :P  Lots of fundraising - the big Team Jac walk raising over £26,000 for LLTGL and then as Team Glasgow, our posh balls, halloween parties, swap shop - together raising £26, 240 to date for LLTGL, Butterfly Trust, CF trust and Gartnavel CF unit :-)

We somehow managed to build an extension in the middle of it all and redecorate the whole house - madness ;-)   Have also met so many lovely people over the past 5 years!

So, yes where did 5 years go?  I know exactly where they went!  It's great that I have been well enough to do all this and I hold onto how lucky I am every day.  Yesterday we were thinking of my donor and her family - and celebrating the gift they gave us all.

It's been an emotionally taxing week - I also gave two talks at George Heriot school earlier in the week.  So to be honest, I plan to not talk about organ donation for a little while!  I think we will just chill out and enjoy ourselves this weekend  :-)

Birthdays and Organ Donation Talks

Seems to have been a busy few weeks for organ donation work - and people will no doubt have read the great news this week that donations have increased by 50% in the last 5 years.  This is largely due to the amazing work of donor coordinators working in hospitals.  These nurses are independent of the transplant team and are able to speak with families in a sensitive manner about the idea of donation.  Allowing families this opportunity has led to a marked increase in those agreeing to donation.  To increase this even further, we do still need people to sign up and make the decision even easier for their loves ones.  I am actually not pro opt-out (being introduced in Wales) because I do think that removing this choice could paradoxically increase the number of relatives refusing.   There are many changes to infrastructure and management of organ donation that can make a huge difference, all of these issues currently being tackled by the organ donor task force.  Finally though, from the recipient perspective, it is important for me to know that my donor gifted these lungs to me and that her family agreed.  I would not like to think that they had been just taken, as it is not my right to receive them.  It is an honour!

I helped out some media students last week, who were creating a short film about organ donation as part of their module.  Victoria was planning to meet them for a video interview but unfortunately became unwell with the 'flu virus, so I stepped in at the last minute.  They filmed me answering various questions on the topic and will be editing this within the next couple of weeks.  I will get to see the final project but whether I share it will be dependant on how cringe worthy I am!!  I also met with another student doing a masters in Design who is completing a project and dissertation around organ donation - with more emphasis on the link between recipient and donor/donor family.  It sounds a fascinating topic and I look forward to seeing the final work when it will be on show at the art school.   I have two upcoming talks  - one with George Heriot School and another with at the Regional Collaborative Meeting (main people involved with organ donation in Scotland).  It is all rather fitting given my 5th transplant anniversary will be on the 25th of this month.....although after that I think I might not want to talk about it for a wee while!!

On a lighter note it was my birthday last week and I was 34 years young!   I had a lovely day :-)  I did have to go to work in the morning but I left at lunch time and went into town to meet Andrew for a wee lunch.  Then mum and dad came in the afternoon and brought dinner and cake!  I got lots of lovely gifts with a dominant theme of animals, mainly owls haha!  There are so many owl themed gifts in the shops just now that I now have a wide selection of owl products ;-)   

Panda card from andrew!!

New shoes!

Hotty Hooty (for microwave ;-))

Owl things

Cake!

Seb eating my nose!

The last few weeks have also been nice and dry, so Seb has been on lots of long walks at the park or river.   Seeing him running around like a fluffy mad thing does make it very worth while!

After his bath!

More snow!!

After dad digging me out of the snow in Bathgate, we have had lots of snow here since yesterday.   I can't believe this is supposed to be Spring.   I love the snow when its leading up to Christmas, but I am sick of it now and just want a bit of sunshine.  Even Seb seems depressed and he is Tibetan, so should like the snow ;-)

The talk to the pulmonary rehab team went well and fuelled some good discussion around the issues.  It was quite informal and I managed to get Seb into a couple of slides ;-)  It helps to lighten the mood haha.   I also had a chat with the pulmonary rehab psychologist, who was really surprised that the CF team does not have a psychologist.   We used to many moons ago, but not had anyone for at least the last 10 years!  It is something that needs to be addressed, because apart from the pre and post transplant journey, just having CF (at whatever stage) can throw up a few problems that being able to talk through would help.

I am feeling a bit sorry for myself today because I woke up stuffed with the cold, and Andrew had to go into work...on a Saturday!  So me and Seb are moping around.  Hopefully it wont turn into anything worse and I am sure some rest will get me back to normal for Monday.   I am only in work on Monday and then have some days off, to tie in with Easter weekend - which gives me a whole week off :-)  Yay!

Snow and Surgery

I was supposed to be giving an organ donation talk at George Heriot school in Edinburgh this morning but the snow scuppered those plans!  I made it to Bathgate last night but there was very heavy snow overnight and the roads to Edinburgh were really bad this morning. The school had contacted me to say it would be safer to reschedule than to try and make it there  - especially as I was due to speak at 9am!  A bit frustrating but better safe than sorry.  Poor dad then had to clear the driveway so I could get my car back out!!  I really can't believe this weird weather so close to Easter!

I had an appointment with orthopaedics at the start of the week about my shoulder.  It's been sore for about 18 months now and I have had a couple of steroid injections into it - the first one worked really well for a few months, then the pain came back and the 2nd injection made no difference.  It's an impingement syndrome, which means the tendon is thickened/inflamed so certain movements which narrow the joint space cause pain - e.g putting arm over head.  I can cope without putting my arm over my head but I also haven't been able to lie on that side for about a year now and it really getting to me!  I am waking up several times during the night, having inadvertently turned over and I think it might be why I have generally felt more tired.  Anyway, the only remaining option is surgery - which will be arthroscopic (keyhole).  It does need a general anaesthetic but I am hoping this can be kept fairly light.  It's normally done as day surgery but they would keep me overnight because of my medical history.   After the surgery there is about 3 months of physio to get the joint moving, at which point 90% will have recovery.  He said the physio is very important so will need to work hard at that.  I have to get it moving as soon as surgery is done though and it's my left shoulder (I am right handed) so hopefully wont cause too much trouble with activites.  Probably couple of weeks off work - I can always get train if driving is awkward!  Although I am a bit nervous about prospect of surgery (think I have had enough to last a life time!) I am also looking forward to hopefully getting rid of this pain and having a good nights sleep :-)

Tomorrow I am giving a wee talk to the Pulmonary Rehab team with my chest physio.  I went to pulmonary rehab classes before my transplant to try and keep some level of fitness, so I was strong enough for the transplant surgery.  Those who have read my blog for a long time may remember me talking about these classes, which were full of old people and me in the middle :-)  It was really important though and the team are interested in the patients perspective of what support we find helpful.   I think its also important post transplant because at that stage we are pretty much left to our own devices, and I think I would have appreciated some guidance on how to progress with exercise after so long being unwell.

Last week it was Andrews birthday - he had to work but I did cook him a steak when he got home and made him a cinnamon and nutella birthday cake - yum!

 

Mutual Respect

I was given a massive bouquet of flowers by a patient, who knew it was likely to be her last appointment before discharge and I was really chuffed!   Most mental health conditions are long term and we don't often get to discharge someone because they are fully recovered.  I don't mean that in a negative way but many mental health conditions are chronic in nature (certainly the conditions in secondary care as opposed to people treated by GP) so it's always so lovely to see someone through a period of illness and back to full health.   This was pleasure enough, but it was also lovely to be appreciated for that help!


Had to split them into 2 vases :-)

I think many people underestimate the impact of mental health conditions on peoples lives.  I might have suffered from a lot of physical ill health in my life but in all honestly I would not swap this for mental health problems.  Many of these conditions make it difficult for people to understand themselves and the world around them, and the stigma that still exists around mental health is astounding.    This is not just within the general public, but within medical and allied health professions.  More recently there has been a spike in patients attending because of difficulties with the benefit system (due to the new equivalent to income support) because they have been turned down, being left financially in crisis and emotionally unable to deal with this.   This can be after a 10 minute interview with someone who has no psychiatric training and makes a snap judgement about that person.   I guess many people with CF have similar problems, because we can look so 'normal' so I can only imagine this is magnified for those with mental health issues.  There is an unfair assumption that some people are lazy, work shy or just not trying hard enough when unable to work.  I wonder if any of us could cope with work if we were struggling to concentrate, to think, to sleep, and to just be?

I know I have gone off on a bit of a tangent  but it's something that is increasingly annoying me lately, especially with all the government changes to benefits.  The people who need the most help are often the ones most vulnerable to this stigma and lack of understanding.  I just hope that I can continue to remain non-judgemental in my career and listen to each persons personal story with the respect and compassion they deserve.

This is what the patient who gave me the flowers thanked me for.  That makes me feel good :-)

Days out!

I am not sure what happened to the rest of February, but here we are in March already!  The weather has been sunny for a couple of weeks now which does make me feel slightly bouncier ;-)

Last week Seb had a day out with Barney the poodle!  They hadn't met before but got on really well and there was no barking or biting - always a good thing ;-)  Barney was very tolerant in letting Seb into his house, especially when Seb proceeded to bring through biscuits, from Barney's bowl, one at a time into the living room to eat in front of him!  Seb also went exploring and when we heard a clatter from upstairs he was found standing in the shower cubicle having pulled out the shower trap!  I have no explanation.  He did however have a great time at the beach and even got his legs wet in the sea, which is a first.

We went to visit some friends this weekend and had a lovely day out at the aquarium!  Their children are so super cute which made the day much more fun!  Normally I am wandering about acting like the child by myself so it was nice to have other children to play with hahahaha!  Andrew took some good pics with our new camera.

Work has been busy and we are making a lot of changes to cover for crisis and emergency work.  I like crisis work but find it hard to cover this and do my own case load when working part time.  I have voiced my concerns about the amount of time I was scheduled to be 'on call' during my working day and this is getting reviewed.  I think part time workers definitely do more than part time in their hours and it is hard to get the right balance to make sure I am doing all parts of the job effectively without having a nervous breakdown ;-)   It all seems to be in hand now though so I am less worried about the changes.  Will just have to see how it goes!

Well I am off into town with my mum now - yay!  Happy shopping to us!!

Let Love Live On!

LLTGL have launched their new campaign Let Love Live On to coincide with Valentines day.  You may be aware that ITV have been covering organ donation all week in their From the Heart campaign, which has been excellent awareness and seems to have provoked much discussion about organ donation.

The LLTGL campaign is aiming to create a positive message about organ donation and the fact it is not just the recipient who is affected.  They have created an amazing film advert portraying a young couple in love, with the twist at the end of showing the young man's transplant scar with the slogan 'Let Love Live On'.

I think its a lovely clip with a positive message.  I also have the song Falling In Love Again stuck in my head and keep singing the intro over and over!  Andrew said last night I had "the voice of an angel.....angel of death".   Charming husband I have ;-)

As part of this campaign, some VERY brave couples also posed naked (tastefully!) together, with their transplant scars showing.  I know some of the couples involved and it was a difficult thing for them to do but they knew this would get coverage in the media - showing normal loving couples who are still together through the gift of organ donation.  It was covered in the Daily Mail and I was appalled with some of the comments left by ignorant people online who have completely missed the point of the photo shoot.  Knowing the people involved made me even more enraged but I guess that is to be expected with anything in the media.  It also means the photo shoot has created a stir, has got people talking and in this way has once again got organ donation at the forefront of peoples minds (even if some of those minds are rather tiny ;-))

Article in Daily Mail

You Tube video interviews with couples


And of course, if you haven't already signed up....(and if read my blog and aren't on the register - shame on you!) then sign up via LLTGL website please.     You can also help by sharing the video above on your facebook, with your friends, on your blog.....spread a little love :-)

Talking....what's new for me?!

The body image presentation went really well.   I flew down to Southampton early on Friday morning, so I arrived in time for the meeting starting.  I listened to the morning presentations about liver disease in CF and other complications - it was actually quite interesting and I had to stop myself from asking questions on a few occasions, remembering I was there as a CF patient, not as a respiratory doctor ;-)

My slot was after lunch and I was sharing 1.5hr slot with a CF dietician from Leeds, who has previously spoken on the topic.  We had never met before but had a quick catch up at coffee to decide how to hang the presentations together - talk about last minute haha.  It worked really well as Alison did the introduction and presented studies and evidence base behind body image issues (mostly relating to weight and eating patterns) then I did the middle 40mins talking about the patient perspective, before Alison finished with clinical implications.  I based my slides on the booklet - trying to keep it quite light hearted and chatty but emphasising particular areas.   I did talk about weight and diet, but when we developed the booklet lots of patients brought up issues about posture, enlarged rib cage, looking young etc which were not related to weight.  I was able to speak about this spectrum of issues, which would be relevant to different members of the CF team, and also gave some of my personal experiences to make it even more real.   One of the topics was about CF people have very salty skin and how this can dry like crystals and white marks, which affects body image.  I told them about my friend Victoria, who has a tattoo down her arm saying "salty girls taste better" with a wee salt shaker.  They seemed amused at this, and can at least see that most CF people don't take life too seriously!  I am getting  picture of the tattoo if I ever present this topic again.   I felt overall it went well, and considering I haven't spoken on this subject, I don't think I seemed too nervous.   I got lots of lovely feedback at the coffee break and spoke to a few people, who commented on changes they might make to clinical practice as a results of this.  I felt it had therefore been worthwhile!

For those who didn't ever see the booklet, it is hosted on the CF Trust website (as well as the original relationships booklet) under external publications  HERE

I was pretty shattered yesterday due to the long day, but must admit to a long lazy morning!   We then went to visit Andrews Gran in the nursing home.  She is stable but very frail.  I gave her a manicure and painted her nails in a nice neutral pink - I am not very good at manicures but I think she enjoyed it anyway!  We then went to get Seb from mum and dads - he had been staying there for a couple of days because the dog walker was at a wedding, so he would have been on his own for 2 long days.  We can't have that for little Seb ;-)   He seemed pleased to see me, although its sometimes hard to tell haha!    

Next weekend we are going to visit some friends in Manchester, and on Sunday are catching up with my friend Sinead, who lives just outside Manchester.  She had her lung transplant about 8 years ago so is way ahead of me :-)

I plan to chill out for the rest of today, before it's back to the grind stone tomorrow...

Helloooooooo!

Hello and Welcome to Jac's secret blog ;-)  I hope I haven't made it too much hassle for people checking in, but at least I don't feel quite as exposed now!  The decision was largely fuelled by some boundary issues with one or two patients at work.   I use my maiden name at work to maintain my privacy and my blog was never set up with my full name.  However over the years I have added various links so that by googling my my maiden or married name it would only be a few steps to finding my blog.  In many ways I don't really care who reads it and have always hoped my journey would help other people with CF or awaiting transplant, even if I didn't know them personally, but at the same time I should perhaps be more aware about how open my blog really was.  

Life has been fairly quiet in recent weeks, January always seeming a rather long month.   Today was sadly my great Aunt Nancy's funeral.  I couldn't get away from work but was able to attend the service last night receiving the body into the Church.   Aunty Nancy was quite a character and led a busy and varied life!  When I think of her, the word Bingo! springs to mind - one of her favourite past times hehe.  I am thinking of Faye and Catherine at this time and hoping the happy memories are keeping them strong xx

Andrews gran has also been quite unwell over the last week and is spending most of her time in bed (in the nursing home) now.  She is comfortable and settled though, so that is all we can ask for.

Andrew has been really busy with work and was down in Salsbury for a few days last week, leaving me and little Seb to fend for ourselves.  We managed quite well (and the house stayed very tidy!) but we are glad to have him back.  

I am going down to Southampton on Friday for the day - to speak at an area CF meeting.   They have invited me to come and speak about CF and Body Image as they have found the booklets really helpful!  I have prepared slides based on the booklet but having never actually spoken on the topic, I am quite nervous!  It will be an exhausting day as I am getting a 6.45am flight and flying back that evening.  Better doing that and being in my own bed though :-)  The rest of the weekend should be quiet though so I can catch up on my snoozing.

I will leave you with some cute pics for Seb on a recent walk...

Seb sees an Alsation he knows and bombs off to see her!  

Seb away out on front - doesn't really like to walk 'with' me!

I was thinking Seb could maybe be their mascot?

Testing Log in!

Thank you to those who have sent me their email addresses for the new blog log in - I am collecting these and will send people details on how to log in once I make the change.  I know it's a bit of a pain all round having to log in, but I think better in the long run it will allow me to keep blogging safely!

I hope none of my readers feel they can't contact me to get added - I am happy for anyone to continue reading who has found it helpful so please do get in touch :-)  weejacblog@gmail.com.

While I am here, I will just post a link to my friends lovely little girl Georgia - she is getting her long hair cut and donating this to a charity who makes wigs for children with cancer.

Georgia's Page

Changing to sign in...

I am thinking of setting my blog to private where you need to sign in to view - so that family, friends, work friends, CF/transplant people can read it but it's not just open on public internet. 

Just been wondering recently that if a patient comes across the blog would I really want them to read my life story so openly and I think it being open makes me feel restricted in what I can say.

So if you would like to keep access then just send me your email and I will add this to the allowed list :-)   It doesn't matter if I don't know you well (mum and dads friends, Uncle Hugh's parishioners, friends of friends etc) - just drop me a line and I can add you no problem.  I'm not trying to make it very selective but just trying to be sensible about what I broadcast to the world!    You can contact me at weejacblog@gmail.com with your email to add.

I am leaving it open for a little while so people can get this message before I change it!

2012

January

To beat the winter blues, Team Glasgow kicked off the new year with a Swap Shop in aid of the CF Trust Holiday fund.  Although not as busy as we hoped, combined with a raffle and donations we still raised £760 which we were delighted with!

February

I don't have any pictures from February but I was clearly too busy relaxing at my spa break with mum.  We had a lovely 2 nights at Stobo Castle.  Team Glasgow were also on top form, booking a venue and creating a ticket site for the Hollywood Ball.    We then hounded people from February to August to buy tickets ;-)

March

 

Had a fab trip down to my cousin Kelly Ann's for Alana's Christening and completely fell in love with both Alana and wee Jake, who was super cute with his little doctors set!    I started Pilates classes with my friend Lucie, did some transplant awareness talks at George Heriot school and we had a mad weekend of gardening where I painted everything in site and Andrew built a wall.  Little did we know that the sunshine that weekend was it for the Summer!


April



My 33rd birthday and 4th transplant anniversary all in the same month!  Mum excelled herself with the 'owl cake' so I have high hopes for this year....  Also had my annual review at CF clinic with great results, spoke at an NHSBT conference for medical staff and went to see Derren Brown, which was amazing.   Also squeezed in was a quick trip to London and back for the 2nd day of the LLTGL advocate weekend.  Wow, it was a tiring month but amazing that I could do all this and still be smiling and healthy!


May

We had a fantastic holiday in Paris, with beautiful weather and lots of wandering around the pretty streets.  We decorated and signed a padlock with our names and date and hung it on the bridge, throwing the key into the water.  We also had the Butterfly Trust Memory day this month, which mum worked really hard to help organise.  I made butterfly keyrings for each family who had lost someone as a small token.

June

My lovely cousin (more like a sister) Sarah's wedding!  It was a lovely day and Sarah looked amazing!!  I made butterfly magnets as favours and we named the tables after British Butterflies.  I gave Sarah a locket with a picture of Frances Ann which she wore on the day, so we could both feel she was close to us on such a special occasion.

July

It's Where's Wally and Where's Wenda  ;-)  Andrew still hasn't quite forgiven me for this fancy dress outfit haha.  Team Glasgow started the big run up to the ball, collecting prizes, starting the big hamper raffle and organising details with the venue.    We made some money prior to the ball - I painted and sold miniature hollywood star paintings and mum made 300 bars of her famous tablet making us £300 to add to the total!

 August







A very busy month!!  Myself and Victoria ran an organ donor desk at Anders football tournament and made ourselves useful by serving fruit to all the boys!  Of course we had the amazing ball - hard work indeed but so worth it when we topped the £9,000 in aid of the CF patient fund at our local CF unit.  We were so pleased and the evening went just as planned, if not better :-)  It was also mum and dads Ruby wedding anniversary and our 8th wedding anniversary.   A busy but happy month!

September



I always find September a difficult month because of both Frances Ann's anniversary and birthday.  It was very apt therefore that on her birthday I was running an organ donor desk with Team Glasgow at the Freshers Fayre.  I felt as if this was a great way to remember Fran and hopefully make a difference to others in this situation.  There were also lots of fun times this month - the hen weekend with Nicola in London and Grant and Victoria's wedding in the borders.   I was also really pleased to have a letter published in the BMJ :-)

October

This was another lovely month!  We celebrated Nicola and Simon's wedding - a lovely day in Millport and Largs!  We also had a weekend away with Claire and Giuseppe in Copenhagen and had a fab time and a great laugh.  I especially enjoyed drawing a picture of us with crayons and putting it with the kids pictures in a cafe ;-)  It was Anne and Johns Ruby wedding in October so we celebrated with a champagne lunch.

November

Cape Verde - amazing!  We relaxed and relaxed some more.....what else can I say?!


December

Well as usual, we had a lovely Christmas and enjoyed lots of buzz in the lead up to the big day.  I had my annual review at work and was delighted with the colleague and patient feedback I had received....at least I feel as if I am doing something right at work!  We had a great time visiting some friends last week and look forward to our new year celebrations.

So here we are at the end of another year and when I look back over the past 12 months, I am reminded of what a fantastic family I have and what an amazing group of friends, and of course the best husband ever.  I realise how lucky I am to be able to live my life to the full and will always strive to make the best of life.  I will of course be thinking of my donor and her family tonight as we end another year and welcome a new one, full of promise and hope.

Wishing all my friends and family a very happy new year and a 2013 full of laughter and joy!

 Christmas!

We have had a lovely (and very busy) festive week!   We arrived at mum and dads last weekend so I had the whole of Christmas eve to run around getting excited ;-)  I met up with my friends on Christmas eve morning then got increasingly excited as the day went on!  We went to the vigil Mass then watched Muppet Christmas Carol (still by far my favourite Christmas film) then off to bed ready for Santa.

I have to admit to waking Andrew at 6.20am to open our stockings, then after waking mum and dad with 'morning has broken' on the keyboard, I had them up at 6.40am.  Oops!!   As usual I was utterly and completely spoilt, with mum choosing lots of lovely clothes for me...and a lovely little red riding hood duffle coat :-)   Myself and Andrew had decided to get ourselves an SLR camera as a joint present but we kept it until Christmas day so it was like the paparazzi when we were opening presents and Andrew kept clicking away..!  He had also chosen me other surprise presents including a really lovely leather bag with an owl and butterfly design...two of my favourite things ;-)    Mum and dad were really pleased with their presents and especially liked the 2013 Seb calendar.  Uncle Hugh then arrived and we had a lovely meal, opened my handmade crackers with selected jokes for each person,  and then ate my favourite pudding!  

 On Boxing day we went down to Anne and Johns as usual, for our Christmas dinner no 2!  Great to see everyone and just had a nice chilled time.  Anne always puts extra little presents on the table so I got some fab mavala nail polishes!  We all got into our jammies to watch TV...apart from John who refused to put on his superman pj's hahahahaha!

We were then visiting some friends in Manchester friday and saturday and had a lovely time before heading back to mum and dads!  We now have three days of new year celebrations ahead with Anne and John coming tomorrow for Hogmanay and New Year and a big family get together on the 2nd.  Then back to work on Thursday.  Work?  What's that?!!