Tuesday, September 28, 2010

Emotional Weekend

On Sunday I was speaking at a Family Donor Network event - a gathering of donor families in Scotland.   There was a massive turnout, with around 200 attending.  I was only present for the afternoon but it was very emotional.  Myself and a couple of other transplant recipients spoke about receiving such a gift - I just spoke about my life, what it was like before transplant and what life is like now.  They asked mum to say a few words also, which of course was no problem for her.  Like mother, like daughter.  I was overwhelmed by the warm reaction of the donor families, who felt hearing such stories helped them to feel positive about the decision to donate.  I spoke to a few different families and had some interesting conversations.   For those whose loved ones had previously discussed donation (whether or not they were actually on the register) the decision was very simple and they felt at peace with this.  For those who had never discussed their wishes, the families tended to struggle more with deciding what to do.  The feeling that their loved one 'had been through enough' was an emotion which made the decision to donate even more difficult.  It only strengthens the point that discussing your wishes with your family is by far the most important point.   Also interesting was the fact some donor families had never received a letter from the recipients.  I only spoke to a couple of people about this and one family felt upset about not receiving a letter, and another family spoke of how the letter had helped them.   I had offered that the main reason transplant recipients struggle to write a letter is probably a combination of factors, including the fear of upsetting the donor family, of knowing when the right time is and of course, the difficulty in beginning to express your gratitude.  It did bring me comfort that hopefully my family were helped by the letter I sent.   The rest of the afternoon was giving certificates and remembering each and every donor and as you can imagine this was very emotional.  I was very honoured to be part of the tributes to such special people.

It seemed rather poignant that yesterday was also Frances Ann's birthday - she would have been 26.  Mum and Dad stayed on the Sunday night and myself and mum went into town for a while.  Frances Ann would have approved of any activity that involved shops, and even better, buying clothes.   It was nice to spend the day with my family and we always think of Frances Ann with happy memories which we can share together.
September is such a difficult month but as a family we always get through it together.

My house is a total tip now!  The utility room had to be cleared at the weekend so the contents (including appliances) are now in my dining room, which is also the store room for tiles, and flooring and a toilet and sink...and goodness knows what else.   Apparently we have to start clearing the current kitchen (which will become a utility area) this week before we head to Cambridge on Thursday.     Not quite sure where the contents of kitchen are going though as the new one is not quite ready for cupboards to be filled.  I have just accepted the guddle though and think cleaning is very overrated anyway. ;-)

Seb continues to be naughty.  Today I moved all the cushions and propped them on the back of the couch against the wall - so that Seb would stop lying on them and making them all hairy.  I came home to find he had been lying on them along the back of sofa instead!!  So they were all mashed in between the sofa and wall, and covered in hairs.  I give in.   He also did a wee runner today.  He came into kitchen for a treat after his walk and then I told him to come back out - he looked at me for a second, then looked at the polythene sheet into extension, then just ran for it!!  The joiner got the fright of his life when this high speed fluffy tornado flew into the room and ran round and round in circles until I caught him.  Chancer.

I have spent the afternoon trying to decorate a mask for the ball -it is just plain and then I had some ribbons and a butterfly to decorate it with.  Can't quite decide if it looks good or just totally rubbish - at least no one will have the same mask :-)  I should probably have spent the afternoon clearing the kitchen but this was clearly a more pressing issue.

Friday, September 24, 2010

Week 4

Phew - the end of another week, although a busy weekend lies ahead! The plasterer was here on Monday and the entire extension has been plastered so gives a better idea of size and space. We got a little surprise on Wednesday when they said the joiner was going to start fitting the kitchen - and we had to point out we hadn't ordered the appliances yet because the kitchen was supposed to be further down the line. Queue mad panic, lots of googling and now the range cooker, dishwasher and fridge will arrive on Sunday. The joiner has fitted the units, which are looking really good and I am very pleased with our choice. We had a minor issue when we noticed last night that the wall units were lower than we wanted - especially for Andrew who thinks everything is small from his lofty height. It was only the carcasses up so we decided to say now and get them moved because it would probably only annoy us later - also I think there should be a slightly higher gap from the range cooker anyway. I was bit scared about seeing the poor joiner again this morning as he seemed to be having such fun yesterday, singing along loudly to his music and making good progress and we now wanted the units moved!! I did explain that as a midget I had not noticed they were low while he was working yesterday because I think everything is tall, whereas Andrew is the opposite. He was totally fine about it and was here at 7am this morning moving the units around. When I got back at lunch time I am not sure what came over me because I wandered in, saw he had repositioned units and added the doors, and casually said 'oh sorry to tell you but can those units go another 50mm higher'. His face was rather priceless and very relieved when he realised I was joking. I thought it was hilarious. Not sure he did. The work tops arrived today also and look nice - they will be bit darker once oiled, as they are solid wood so need to be treated first. This weekend they want us to clear the current utility room, which will become a small shower room - so of course dad has been recruited to come and help Andrew with that task this weekend :-) Me and mum will supervise.


 Kitchen area - integrated dishwasher to go in that gap and sink under window



Big gap is for range cooker and hood

Other side of room - will be dining table and hopefully little sofa on far wall looking out into garden
(those are french doors on left)



Tomorrow I am speaking at the organ donor network as I previously mentioned. This will involve talking as an organ donor recipient to around 200 people, mostly made up of donor families. I hope I can get across the message that this is such a priceless gift and one of the most selfless generous acts on the part of the donor and their family.

I am pleased with my new PBL group as they all seem very nice and enthusiastic. It is the first block of 2nd year and is quite overwhelming because there is a sudden jump in how much information they are expected to learn in one PBL (they do two a week). I am trying to keep them chilled about this - I remember 2nd year so well. It is renowned as the hardest year at medical school because most of the physiology, biochemistry etc have to be covered here. I loved 3rd year because that's when we really got into diseases and treatments, but you can't do this without the foundation. It's a shame I appear to have forgotten anything that doesn't involve the head though ;-)

Myself, Victoria and Kirsty have now got a blog for our fundraising - Team Glasgow. The link is at the side of my blog. We would like to work together to do some events for the charities close to our heart - Live Life Then Give Life will benefit from the ball, but we also would like to raise awareness about CF charities - in particular the Butterfly Trust. The Willow Foundation is another fab charity who provide special days for adults with serious illness - this is very unique as most charities only provide for children. I know many people with CF who have enjoyed special treats through the Willow Foundation. Anyway, thanks to Victoria for setting up and designing the blog :-)

Seb continues to push his boundaries. I am going to remove all the cushions in the living room when I go out because today he had clearly had a shot on ALL of them. I have two sets of cushions on each sofa and he had them all flattened down and covered in hairs. Yesterday he was on the window sill when I got home which must have involved jumping from a side table. He has also been sleeping in the hall because there is now only polythene between the kitchen and extension. He was very good the first night but I woke up last night to the pitter patter of tiny feet as he wandered into our bedroom! I took him straight back downstairs and he did appear to stay there all night but who knows. Here as some pictures of the kind of thing that happens whenever he gets into the extension.

Decides to go exploring down the back of plaster boards


Emerges at other end and looks surprised to see me there!

Polythene sheet where back door used to be - hence Seb not sleeping in kitchen.  An internal door will go on this side of door way and there will be a partition wall on left of this picture - making part of existing kitchen a utility area and the other part the hallway leading into extension.  So no external walls come down - yay!


 Will update next week with progress..... :-)

Monday, September 20, 2010

Escape

Yesterday my dad and Andrew were taking down the false sloped ceiling in the hall and I didn't think it would be wise to expose my lungs to all that dust, so I escaped to see Mum instead.  My cousin Sarah came to visit yesterday so it was good I caught her for a catch up too :-)

As I briefly mentioned, the CT scan was fine.  I do still have a cough but I now have a bit of a cold so hard to tell if it's just viral again.  The doctor felt it had started with a virus and then my reflux might have aggravated the cough, because I have had some problems with the reflux recently.  I have increased my medication for that and will see how things go.  My lung function seems stable and no major issues have been detected.  I am just so relieved there was no evidence of chronic rejection.  

Building work is progressing well and we now have plasterboard on three walls. The electrician came at 8am on Sunday morning to finish some work!!! Apparently he can't come this week due to a major rewiring job but had to finish some work before we can get plasterers in.   That is dedication.   Things will move a bit more slowly now that the frame is up and all the more detailed work will need to be completed.    We have to move our BT line, which is very annoying because it is going to take BT about 3-4 weeks to come and do this - although the builders have said it wont hold them up.  It is getting closer to them needing to come into the house to work which I am dreading but it will be worth it in the end.  Andrew has been taking all the lining paper off the walls in the hallway, as the window there will be plastered up so paper needed to come off - so we are making so much mess anyway that the builders might as well come in and add to it ;-)

Tomorrow I am starting a new PBL group for the next 5 weeks.  I figured it would be better to just get out the house as much as possible and I might as well get paid for getting up early :-)   I haven't facilitated this particular block before so will need to do quite a bit of reading - I was reading the first set of notes while at the hairdressers this morning.  That is multi tasking for you.

Seb has been enjoying his time in the living room when I go to work.  I know he is lying up on the sofa where I normally sit, as he arranges the cushions into a small bed for himself.  He always jumps down before I come in though and gets into his own bed, pretending to have been there all along.  He still can't go into the back garden because one of the fence panels between our garden and the neighbours is down.  There is just a small gap but last week I let him out and thought I could just supervise - but he made a beeline for the gap and I had to dive after him just managing to grab his fluffy behind before he disappeared.  Cannot be trusted!

I was also in the Sunday Mail yesterday.   Under the caption 'Furious Jacqueline' hahaha!  I had emailed The Judge about my travel insurance company refusing to pay for the anti rejections I had to buy when our flight was delayed in Florida.  They were refusing to pay out because "prescriptions are not an emergency".  I had written to explain that running out of anti rejection medications was indeed an emergency!  Their reply was simply a copy of the original refusal letter, with same date and same typo!!  Anyway, within 2 days of The Judge from the Sunday Mail contacting the insurance I received a cheque for the £286 they owed me.  Result.  They are now getting onto to Air France who are still refusing to pay towards accommodation and food costs during the 6 day delay.  Would be fab if they did manage to get anything back from Air France - watch this space.   If you have seen the paper, please note that we were asked not to smile for the picture, although my natural non smiling face must look rather angry.  I must watch that..

Friday, September 17, 2010

Good News

CT scan was fine - no rejection or nasties.  Will update later but just in case the non reporting was making people think it was bad news.  ;-)

Wednesday, September 15, 2010

Sorry for delay in transmission...

Had a busy week so not had the chance to update yet!  The building work is progressing well - we have had a few days of torrential rain and high winds but the joiner was still there trying to build a roof!  Someone was supposed to come on Monday to seal the wood (or something) but wouldn't go up because of the wind haha - the joiner was scoffing at him and carried on anyway.  Yesterday insulation was going on the walls and the plumbers were doing the first fix.  That was a bit stressful because they were in and out the house, with back door wide open and cables trailing everywhere so I had to shut Seb in the living room with me, and leave him there when I went out.  I think he thought I had gone mad and clearly enjoyed himself by trying out both sofas and all the cushions :-)   Today the electrician came and there appears to be cables hanging down where spot lights will be, and there are windows sitting in garden, so guessing we will soon we wind and water tight.

 Insulation on walls...


How do builders work in small gardens?  My lawn is like a builders yard..


Wires hanging down today for spotlights..


I had a fairly quiet weekend which I was in desperate need of.  I was teaching medical students on Friday, although need to remember and take back some time for that, so was looking forward to a long lie on Saturday.  Needless to say I woke up quite early regardless.   We went to mum and dads on Saturday because Corey was still visiting and on Sunday bought some tiles :-)  I seem to have had a busy week at work for no particular reason and the middle of it all have been room hopping because Infection Control consultant has said I have to move out of the corridor I work in due to risk of moulds growing in damp area.   It's good they have acted quickly and are looking after me but it's also stressful getting shifted about.  I did have one of the consultant's rooms today which was nice and had plants and nice pictures - I think my patients thought I'd been promoted ;-)  The staff are being nice about the fact I am the cause of all this hassle and tolerating me phoning downstairs an asking them to come and see me because I'm not allowed down any more!

I am planning a trip to Cambridge in a couple of weeks to attend a Transplant Psychiatry Interest Group which is just being set up.  One of my consultants sent me the information as thought I might be interested in getting involved which I think is a good idea.  It's not great timing because I seem to have so much on just now (start PBL next week, LLTGL advocate weekend in October and ball at end of October, plus builders here all the time!) but I have convinced Andrew to come down with me so we can stay a couple of nights and make it a little break at same time.  He will have to go exploring on the Friday himself but I am sure there are lots of things to see around Cambridge.   Bizarrely I took a phone call from the transplant psychiatrist in Edinburgh today for an unrelated reason and randomly asked him if he was going to this meeting.  He was a bit confused until I explained further :-)  Apparently there is another doctor talking at the meeting (not psychiatrist though) who had lung transplant for CF so will be interesting to chat to her.

Ball plans are going well and tickets are selling fast.  If you still owe me money for tickets can you try and get it to me asap please as we will have to pay Oran Mor early next month.   I am just going to start working on a programme for the evening so we can have a few on each table - just to explain the format and timings for the evening.  I will get Andrew to help me though as I feel rather busy!  I am thankfully finished the booklet though!!  I have the pdf sitting ready to go, but the pharmacy guy is on holiday at moment so not sure what time scale for printing will be.  It's exciting to have it finished though and I am really happy with the end result.

I had my CT scan yesterday - was waiting an hour in one of those wee gowns and was freezing.  You would think they could have let me stay in my own clothes longer if they knew they were running that late.  The scan itself was fine but obviously I don't get results at the time.  I am seeing the doctor tomorrow so hoping he will have a result by then.  I must be honest though - I am freaking myself out a bit.  I still have this dry cough and have managed to convince myself I have chronic rejection or something horrible.  Totally overreacting but I just don't want anything to be wrong.  I don't want my wee bubble to burst.  I am feeling otherwise ok though so they will probably just tell me there is nothing wrong and to quit the moaning ;-)  I seem to have had a bit of reflux lately which also could make me cough.  I will attempt to stop self diagnosis though and see what the proper doctors think :-)

September is generally a difficult month so I think I am just feeling the pressure a bit.  Lots happening and even more running through my mind.  Sometimes I would like to be able to switch my brain off!  I was supposed to be going to a course on Monday which is cancelled so I am taking the day as annual leave instead - I didn't have any clinics booked so might as well take advantage of that.  This will give me a nice wee long weekend to recharge and get back to full speed next week :-)


How cute is Seb here?  Note the little teeth sticking out :-)
 

Thursday, September 09, 2010

My Beautiful sister's anniversary

I can't believe it is six years since we lost Frances Ann.   Time flies although I guess I have been rather busy over those years.  I thought I would maybe show you some pictures - especially for those who never had the pleasure of meeting my rather charismatic sister (subsitute for slightly strange/funny at times).


With mum - looking very innocent!   She was one of the cutest babies I have seen - massive blue eyes.  Not like me with my chubby wee legs ;-)



Looking like a tiny doll...




True colours beginning to show.  She was never ever a tidy person.  She largely didn't care if her hair was all over the place - mum had to put her in pigtails for school or her hair would be wild.  The primary 1 photos mum has of us are funny - Claire is immaculate, I am quite tidy but tie sticking out, Frances Ann has half her hair falling out with a massive grin.



These were my costumes (banana in pyjamas) for a dance show - Frances Ann was so huffy about the fact she didn't have a costume (she didn't go to the class) so we had to dress up at home to please her and pose for a picture looking like a right eejit!  She did later attend drama classes - you would never have guessed ;-)


On holiday where the game was 'Jacqueline pulls Frances Ann around the pool while she sits like a little princess in the rubber boat'.  I thought older sisters were supposed to boss about the younger one??  She started this early though.  One day when mum went to pick her up from nursery the teacher said 'oh she is doing well, we take her the milk at break time and she always drinks it'  Mum was confused and asked why she didn't come and sit and the table with the other chidren  "Oh, she prefers to sit on the chaise long and we bring her milk and biscuit while she rests!" Mum quickly nipped that one in the bud - chancer.  I also remember a time at school when she was trying to get out of class.  She started with "my legs are tired" - the teacher said "well just sit down for a while".  "My arms are tired" - "well just sit and read for a while".  Frances Ann thinks carefully.  "You know what - my eyes are tired".  Teacher had to give in and tell her to go and lie down!!!  She hated getting up early and loved her bed very much.  Even when at nursery she used to ask "why can't I go to the afternoon session so I can stay in bed!"  


Frances Ann climbs into the mattress for z-bed and pretends to be sleeping there.  She would often pretend to be either sleeping or collapsed.  She once went into Biology higher class and lay down in the middle of the floor just to see if the teacher would panic and think she had collapsed.  Knowing her too well, he just prodded her with his foot, stepped over her and started writing on the board.


This is what happened to her hair when it had been in pigtails.  More interesting though it the t-shirt "I'm a little monster"  Very true.  Also reminds me of the fact she insisted the word for monster was actually "munster" and refused to say otherwise

Just liked this one (ignore my bright pink pj's!)

Dad and his girls on holiday.  I am wearing Frances Ann's skirt and she is wearing my top.  She liked to borrow clothes but was equally willing to share.  She gave me a loan of loads of tops and dresses for my honey moon - many of them still with tags on that she had just bought.  She was also known to borrow things and then put them in her drawer though and then pretend that mum had put it there and she hadn't noticed!


At Madame Tussauds she thought it was hilarious to pretend to get a fright from Alfred Hitchcock.  Then insists I take a photo because it is 'oh so hilarious'.  Total exhibitionist.


I still miss her so much but I know she is always here with me.   I read this quote some where recently  "We all die.  The goal isn't to live forever, the goal is to create something that will."  I think Frances Ann succeeded in this - so many people loved her and these people will never forget.



Wednesday, September 08, 2010

 Day 7

We are now on day 7 and things seem to be on track - bricks are being laid and the joiner is due to start on Friday on the timber frame.  I was really impressed that a guy turned up yesterday in the pouring rain and was working away in the relentless downpour.  He did have to give up after about 5 hours because he was totally soaked through but I was surprised he had turned up at all.  Good effort!  I escaped to my friend Lucie's yesterday afternoon to get away from building works, which was lovely.  She is likely to be seeing rather a lot of me in the coming months :-)

Ticket sales are going well for the ball and I think we have around 200 tickets sold. We would like an approximate final total by end of this month so we can let the venue know and finalise plans - so if you haven't contacted me yet but would like a ticket - do it soon!  Also keep us in mind for small donations to use at tombola - bottles wine,  toiletry gifts etc - the usual :-)   Sherlock the cashmere bear is still doing the rounds and mum currently has the diary so expect to be harrassed in the near future.  Lastly, can any people waiting on transplant or who have received one (pre and post picture) send us some pictures for our slide show (to be shown at ball) to lltgl.glasgow AT gmail.com.  Any kind of transplant - funnily enough we have more lungs than anything else ;-)

Here is the picture of my latest painting as promised.  I decided I liked it after all and now it's on my living room wall.  I do love little birdies.

Monday, September 06, 2010

Day 5

I guess the weekend doesn't count in the building days so now onto day 5.  On Friday they had poured concrete into the founds and today they seem to have laid bricks in the foundations - progressing well I think.  It's forecast heavy rain tomorrow so not sure if that will hold things up.



The weekend was nice and sunny so we had Seb at the country park on Saturday which he loves!  The first picture is Seb watching me because I have treats and the second one is staring intensely at Andrew. 


Seb always runs ahead then looks at us as if 'hurry up!'



Sunday was Uncle Hughs garden fete and there was a massive turnout this year.  He usually does get good weather though and clearly has some deal with God regarding this.  It was a nice afternoon and little Seb came along too. I am sure the grand total raised will be very impressive.

I have also been working on a new canvas - this time for myself!  Pictures to follow once I decide if I like it or not...

Thursday, September 02, 2010

Day 3

Yesterday the hedge was taken out and another skip arrived, and today there has been more digging of the patio area.  It is being dug by hand and has been really hot the last couple of days, so I am impressed with how hard they have been working! They even took my package that arrived today which was rather handy :-)


Hedge has gone!

Seb is finding it all very interesting and I let him out this evening under supervision (otherwise he will just go into the neighbours garden).   He spent about 5 minutes working out how to get over to the grass and has found if he jumps in the trench there is a shallower part he can jump back out of at the moment.  He also is so cute because keeps going to the side of the trenches and digging delicately at the soil - maybe I should just leave him out during the day and he can help the workmen.  He would really be like the site manager I think - just keeping an eye on things.

Paws gently at edge to check quality of workmanship


Walks around the trench to assess whether all dug to correct depth

Yes, it must be deep enough because I can't see out!


Survey complete - jumps out and head inside for dinner

I have a date for my CT scan - 14th September - so not long.  I am feeling ok though and I think the cough has been better the last couple of days so hopefully is nothing at all.   I took Seb a really long walk at the country park this afternoon and I think I would have struggled had there been anything going on with my lungs.

I had a letter back from my travel insurance, still refusing to pay out for the medication I had to buy when we were delayed in Florida.   They just reiterated that prescriptions are not deemed to be a medical emergency, even though I explained at length about how much of an emergency stopping anti rejection medication actually is.  I am just so angry because of how much I paid to make sure I had travel insurance and they are quibbling over a few hundred pounds.  Needless to say Air France have also refused to pay out for any of the hotel/food costs either - we have written to the AUC but have not heard anything yet so I must try and chase that up again.  Mum thinks I should write to the Judge in the Sunday Mail about the travel insurance - I might just do that because I am sure bad publicity would be more of a problem for the company than me writing to the ombudsman.