2017 in Pictures

January

I went back to work after a years leave.  Estelle started nursery.  We spent the rest of the time inside the playhouse built in the living room..

February

I was permanently exhausted this month - being back at work (which was pretty full on) and juggling being a mummy and a doctor!   Inevitably things happened like leaving the freezer door open and having to cook its entire contents.....

March

A mixed month!  Both myself and Estelle had parainfluenza virus - I was off work and Estelle ended up with pneumonia!  She has since taken a keen interest in listening to peoples lungs with her stethoscope!  On the positive, we had a lovely trip to Manchester and Estelle has never stopped talking about her friend Marco since...;-)

April

Birthday month for me, mum and dad!  Also celebrating 9 year transplant anniversary.  Lots of cakes were eaten.  Then we jumped off all the calories on the new trampoline (Estelle's belated 2nd birthday present!)

May

Had a lovely family holiday in the Lakes - Estelle had an absolute ball!   Lots of outdoor fun.  Also some lovely weather at home - picnics in the garden :-)  Newcastle clinic noticed a slight drop in lung function, but I wasn't worried as it was still within range at that time.

June

Estelle loving the Bathgate galaday parade, then cheering Andrew on at the Fathers day 10K.   I had my 15 year university reunion!!!  Poor wee Seb had some health problems and needed blood testing - sporting his wee tractor bandage!

July

Had a lovely wee mini break in Hawick!  Some great weather this month- lots of garden fun!

August

Estelles first time on a ride, with her friend Rhiannon.  At Seth's baking party!  Me and Andrew having a day out in Edinburgh for our 13th wedding anniversary.  Another newcastle trip which showed another drop in lung function - I was pretty worried this time.  I was asked to come back in a month so they could do bronchoscopy if another drop.

September

Fantastic family holiday in Majorca.  Estelle is a total water baby and loved the pool and beach.  This photo was taken on Frances Ann's anniversary - both wearing out butterfly dresses in memory.  Was back in Newcastle at end of the month and unfortunately needed bronchoscopy due to further drop in lung function.   The biopsies found chronic rejection and I started on some new medication.  I was devastated with the news, but thankfully Andrew was with me, so that made it easier.

October

I was feeling quite stressed with the chronic rejection diagnosis, but tried to make some positive changes - starting pilates and also building up my weight.  Victoria's friend held a fantastic comedy night in her memory.  I finished off jewellery she had started making, which we sold in aid of the butterfly trust, and it was an honour to contribute in this small way.

November

Early start to Christmas festivities with a visit from the Levinsohn's!   Transplant clinic indicated that although lung function still a wee bit lower it looked to be stabilising slightly.   I made some changes at work to try and make sure I can stay as well as possible!! 

December

We had a lovely Christmas this year - with Estelle really understanding things for the first time. She loved singing at the vigil mass - clapping along!  Then she had great fun setting out her tray for Santa and the reindeer's.  What she doesn't know is that after she went to bed, Seb helped himself to the pancake and drank half the glass of milk hahaha!  She couldn't quite believe on Christmas morning that Santa had brought her the dolls house she wanted.  It was magical to see!

Looking ahead to the year ahead, I do feel anxious about my health and what might lie ahead.  However, realistically, that has always been the case - it's just that in keeping so well after transplant you almost start to become complacent and believe that you are indestructible!   I am grateful  to have an amazing transplant team who are monitoring me closely and making sure I stay as well as possible.   This coming year will mark 10 years since my transplant and I am forever in debt to my donor for this miracle!   Estelle has enriched my life beyond belief and makes me more determined than ever to stay well and to keep living life to the full.   I am surrounded my family and friends who provide more support than you can imagine.   I am very fortunate indeed and will go forward into 2018 with gratitude for what I have, and hope and faith for what is still to come.

Merry Christmas!

I was back in Newcastle for a pre-Christmas check up.  Results were ok-ish.   Lung function was down a little again (2.26 litre from 2.39) which was a bit disappointing...but could have been much worse.  The doctor felt that since I was feeling well and had also recently had sinus infection (which might have caused the drop) then he was happy to leave it for 2 months and review.   He didn't feel it was time to proceed to radiotherapy, which was good!  He said that the pattern of slow decline at moment indicates this is not an aggressive rejection, where things just plummet downwards.  Although the expectation is still for gradual decline, I might also have periods of plateau and they will still progress to radiotherapy if looks like my lung function is dropping to point I am becoming symptomatic.   At the moment it is still 86% (was 109% at start of this year) so I don't notice any difference on a day to day basis - I don't feel breathless at all.   I am very fortunate that I had such a high lung function post transplant as it is buying me more time in this process!

I have ENT appointment this week about my sinuses so will see if there any further thoughts on surgery.   The gastric tests so far have been fine - I've had a barium swallow and endoscopy.  I still have a PH test in January (they put nasogastric tube down for 24 hr which will measure any acid reflux).  I think it's looking like my previous surgery for reflux is still working, which is good news.

I have been feeling very anxious about the whole process though.   I think it's the sense of something not being in my control, and that no matter how hard I try, I have little influence over the progression.   Pre-transplant my CF lungs were unpredictable but my lung function varied day by day, depending on infection levels, so there was always a feeling that it might go back up at the next appointment.  I am finding it hard to accept the irreversible nature of this process.   However, the difficulty with CF lungs was how awful infection made me feel - at the moment my lungs are infection free and therefore I actually feel very well.   So I think all I can do is make sure I am otherwise as fit as possible, so that by body copes with any drop in lung function.  Within my control are the general looking after my self principles - I must remember to stick to these!  

I need to look at this whole process as just another part of the journey.  I don't want to spend the time between appointments getting  increasingly anxious and fretting about what the next result will be. At the moment I do feel well - and I really must make the most of that.   Life marches on regardless and I would hate to look back and think I spent far too long worrying!  It certainly doesn't achieve anything.  I have to concentrate on the fact that things might remain stable for a good while  and I will deal with each hurdle at the time.  

Health aside - it's only 6 sleeps until Christmas!!!!!!!!!   Estelle is very excited - but I think I am still more excited haha!!   She has asked Santa for a dolls house.   I quite like the idea of playing with a dolls house too.... :-)     I am looking forward to spending lots of time with my family over the festive period.   I am forever grateful for my wonderful friends and family who support me at every turn, and I am of course, forever grateful to my donor for giving me another Christmas to celebrate!!

Hope everyone has a  magical Christmas!