Thursday, 5 March 2015

Planes, exam, party, zoo and leaving work.

Phew, already March!

I know February is a short month, but really, where has it gone?!!

My pretty flowers
So the month started pretty quietly, had a leaving meal for a colleague at the yummy Chinese that does veggie duck pancakes, om nom nom! Was sad to see her leave the team, but as the longest serving Tracker, it was certainly time she got to escape! Before she left, she suggested I talk with someone in finance about the possibilities that doing my course could lead to. I hadn't thought of that, so emailed a random contact from the internal phone-book to organise a chat about everything financial for the hospital.The day of the leaving meal (was actually after she'd left the team!) I went and had a chat about how it's made up and the roles etc... by the end of the chat, I'd been offered a 6 month secondment on the OK from my current manager. She agreed and eventually we got the finer details sorted out... and 27th Feb was to be my last day in Patient Access, exactly 1 month after George left us! My team surprised me with some flowers (purply of course!) chocs and a nice card. I wasn't expecting anything as technically it's only a 6 month secondment.... but Villa 10 does have a tendency of stealing Trackers and never giving them back... I'm the third!

On a plane at last!
I got to go on a plane at last! We had a short break up to Glasgow to see my brother & his girlfriend, and also to see Return to the Forbidden Planet. I was a little apprehensive about flying without any oxygen planned, but was also very excited to be able to be back in a plane, even if it was for less than an hour. By the time we landed I still felt fine, no problems breathing which was just amazing. The only side effect of the flight was a slight dryness the rest of that day, making me have a little dry cough. That I can deal with! Next stop, long haul flight!! (when I get the fit to travel permission). We had a nice few days, visiting Edinburgh and some touristy stuff around Glasgow. We went to numerous yummy eateries and a very cool bar after the show. It was nice to get away, but I did miss my girls those few nights.
Our cocktails in the Tiki Bar

The day that we went to Glasgow, the rest of my college class sat their first exam. Mine was scheduled for the following week, so although it gave me extra time to study (not really needed- or used!) it made me worry about it for an extra week, and have the knowledge that I would be the only one I knew in the room. This was my first exam since Sixth form, so over 10 years! Although I was confident that I would pass, it was still enough to make my tummy a little unsettled first thing. Needless to say, I got through it within only a fraction of the time allowed, and passed. I don't know how well as AAT don't give actual marks, but that's 1 of 5 completed. Woop!

February is a big month for us now, as it marks the anniversary of getting my new shineys! From around Christmas I had decided that I wanted to have a party to celebrate my lungiversary. Date and time were sorted, cake ordered from the lovely lady that made our wedding cake and guests invited. Although not everyone invited were able to make it, I had such a nice afternoon/evening with those that could make it. The morning of the party Glen was a busy little bee doing housework, I went to get the cake (nearly running out of petrol on route!) then I came home to get on with the rest of the food prep. In a few short hours the house had got a blooming good clean, cake had arrived, Glen had got balloons and made sandwiches and we were both ready to greet guests. Despite telling people that I wasn't expecting gifts, I just wanted to celebrate, I still got some choccies, some flowers, some awesome mickey mouse brownie cupcakes and a few pretty bits for the garden. My best friend even brought along a home-made Victoria sponge which was rather yum! It was so nice to be able to do all the prep and still have energy to actually participate in the party. I felt that I needed to say a few words but in my (very sudden) nervousness I forgot the main reason was to raise a glass to my donor!! Since then, I've started thinking about writing a letter to her family, but I just don't know how to start it off. I'm hoping that one day it will just pop into my brain and then the rest will flow!

After my party, I had the actual lungiversary day- where Glen and I went to the zoo. The initial plan was to go there to visit the new butterfly glade (butterflies are my representative symbol of the transplant thanks to a lovely pillow case that was made for me) however, it doesn't actually open until Easter! So we just went and enjoyed the day out. While out and about, I was releasing ducks for The Little Yellow Duck Project. I had 10 in total to release throughout the day- 2 proper ducks, 7 finger puppet ducks and 1 very special 'angel' duck. I'd sent a quick email to the local paper about my plan to release the ducks on my special day to commemorate and spread the importance of organ donation etc, and I ended up in the paper again! (3rd time since October!) As the photographer needed some ducks for the picture, I had held back my angel duck and 2 finger puppets. The puppets I then released outside 2 local schools in the hope that it might encourage some information sharing within the schools. My special angel duck I was carrying around for a few days as I wanted it to go to someone, and not just left on the off chance of someone finding it. I had him with me for an additional week, but at the start of this week I was back at Papworth for some tests and I decided to hand my angel duck over to my favourite res-phys, Rosie. Not only has she known me from when I first started to going to Papworth CF Unit, but we also share a birthday (which happened to be this week too!) For the first time, I was actually able to witness the happiness of someone receiving one of my ducks, she was very watery eyed and chuffed that I had given it to her. When I saw her the following day she proudly told me that he had pride of place on her mantelpiece!

I think that pretty much sums up my February! As mentioned above, March started with 24 hour ph test (if you're squeamish maybe skip a line or two!) which includes a tube with sensors on it going up the nose and down into the stomach, after about 15 minutes of it being moved a cm at a time with varying amounts of water to swallow, that tube was taken out. Now all the measurements were done a second slightly smaller tube went the same route, and this was a tube I had to keep in for 24 hours to see if I was getting any acid reflux coming up the oesophagus, which could potentially do damage to my very lovely new shineys. It was a tough 24 hours, as it was uncomfortable in my throat pretty much every time I swallowed, whether it was a dry swallow, with food or drink.... but I kept it in the whole time! Phew!! Now I just have to wait for the results to come back to see if I do get any acid reflux... if I do and it's going too high up then it could mean an op further along the line to try to prevent any damage in the lungs/airways occurring. Just have to wait and see. Keep your fingers crossed for me ;) 

Sunday, 1 February 2015

February already

So January has been and gone already!

I've decided to do the 100 happy days thing starting from January 1st. This has helped me to focus on
at least 1 good thing each day. I've also been trying to put together an album of photos to go alongside this... not necessarily to coincide with my day 'happy thing' but something which has made me smile or laugh on those days. From seeing people do it last year, I thought given how pessimistic I can be at times, that it would be a good way to try to change those thoughts and turn them into a more optimistic stance on life. So far so good... I've done it everyday through January! Some days has been harder than others to find something to note down... especially if it's been a quiet day of doing nothing in doors.... but typically the doggies will inevitably do something to make me chuckle, or just to allow me to take stock of how much better things are for me now compared to times before.

So... January: It's been pretty cold, we've seen snow in recent days- not enough to really be worthwhile, but enough to establish that Bella doesn't like it, and Judy still loves to loon around in it! I went back to work following almost 2 weeks off over Christmas- we're now set daily targets which are pretty harsh so we're all feeling a bit more pressure and having far less fun and communication! We've also had an office move around so I now have a new desk next to a window... so I actually have natural light again! Friday just gone saw the end of an era- our longest  serving colleague left to go to another department :( I am now the longest serving member of Patient Access, and although this is good in one way, I just hope it doesn't end up with everything being piled on me!
I've started my AAT level 2 course. Had 4 weeks so far, and got my first exam for the theory unit shortly. This is a little scary on one hand as it's the first proper exam I'll have sat since age 18, however I've done several online mocks, as well as ones in class and I've passed all done so far. :) The practical side of the bookkeeping unit has taken a bit more to get my head around but I think I'm grasping things a little better now. I just really hope that something comes out of this course with regard to my career- I don't want to be stuck in Patient Access for the rest of my working life! 

I've been up to clinic for my first transplant review of the year. Overall, all is still going well. My nebs have been stopped completely now, only to have them as a standby in case I get a cold or other bug- they will be my first port of call at any signs of feeling unwell! I've had a horrid and annoying dry cough for the better part of 6 weeks, initially I thought it was either a coldy bug, or response to coming off the nebs... however when I raised this with the specialist nurse she said it was a common side effect to the tablet I was started on in December, so I got that changed to a different one, and hopefully one day soon I will be cough free again. IT is very odd how much me coughing now disturbs people! When I was coughing almost constantly, with huge coughing fits and bringing up loads of gunk, I was very rarely questioned if I was ok... now a slightly throaty cough and I'm being grilled about how I feel, am I looking after myself enough, do I need medicine/tablets etc... the cough is even annoying me! However did I cope before?!!

Next month I have my lungiversary- already got a party planned for the weekend, and then Glen and I are going out for the day to celebrate. I'm working myself up to writing a letter to my donor's family
but it's such a difficult thing to actually put into words!
Glen and I are also off to Glasgow for a few days... my first plane trip with these lungs. I'm hoping that the short flight either way will go without a hitch ready for next clinic to be given the ok to fly longhaul... will have to wait and see!!

Friday, 23 January 2015

2014 Year review... what a year!

Right I'm going to start this post now... but more than likely not finish it all in one go.

2014 has been an epically manic and exciting year. Most of it you have heard through my earlier posts, so this is mostly just a recap, but I kind of feel like having gone through so much in a relatively small space of time (and bringing things up through catching up with family/friends over Christmas) I need to process it all in my mind properly, and what better way to do that, than by blogging!

First and foremost... this time last year - 
  • I was on oxygen 24/7, permanently connected to either my concentrator in the home, or carrying my 'jet packs' when out and about. Getting out and about was a huge military maneuver that involved loads of planning and nothing could ever be spontaneous.
  • We couldn't rely on my feeling good lasting more than a day at a time, so we could rarely make plans to do anything more than a couple of days in advance as infections seemed to either be just on their way out, or just setting in.
  • I had next to no energy, just the process of getting up and dressed, nebbed and breakfasted would generally leave me drained for a while. I was managing about 3 days a week at work (maximum of 5 hours a day, but often less) when getting home from work, I would need to rest for a while before taking Judy out for a very short (distance wise, but took a while in time) walk, then I would snuggle up on the sofa doing very little. Once Glen got home from work, I would barely move until it was time for bed. Having been dozing on/off all evening I would then struggle to sleep in bed due to laying down causing so much issue with my breathing.
  • Glen would get home from work and start the fun game of 'what have you eaten today, and what do you fancy for dinner?'... normally the answer wouldn't be particularly helpful and he would have to create and cook something in the hope that it would inspire me to eat! 
  • At least 3 times a week, (normally more) I would have to do a tube feed just to maintain my measly weight of between 6 1/2 to 7 stone. 
  • I was always cold and pretty much everything in my body ached through constant coughing. 
  • My IV anti-biotic courses were getting longer and with fewer weeks in between. This not only brought me down due to the restrictions the grueling regime entailed, I was even more tired (partly because of the drugs, partly due to the timings of the doses) and I was generally only ever back to work for a few days before needing more time off for hospital visits or admissions.
  • I was pretty depressed in general- despite trying to put on the happy outer shell. It felt like everything that a 'normal' person my age was able to do was just so beyond me, I felt like a mentally young person trapped in a 90 year old's body. This I mentally took on in the form of guilt for holding Glen back and also for mum always having to be ready at the drop of a hat for when I needed something. At times I couldn't make my own lunch, or wash my hair... or even get in/out of the bath by myself. I felt useless and a complete drain on those closest to me.
  • On the positive side- I had just got engaged and was looking forward to planning my big day - albeit with lots of restrictions due to health.
So January saw me back to Pappy for CF review, along with my transplant review. By the end of the month I had signed all the consents and waited to be told I was 'live' on the transplant list. I was still not sure what this would really mean for me, but I knew that transplant would end up being my only chance to carry on living. I had been bouncing around with regards to my weight and lung function, but even when I felt ok in myself, the results at clinic didn't really show the hard work I had been doing just to break even. The end of January saw me back for an admission. At least during this stay I had plenty to keep me occupied as I spent most of my waking time planning and organising things for the wedding. We had decided our venue, date and several other things by the time I went in, so I cracked on with buying and preparing stuff ready for my release. It was full of exciting times looking at pics and browsing for ideas, although I still hated being in and away from Glen.
We also found out that the house we had tried to buy the previous year was going back on the market and we had first dibs on it if we still wanted to... so we were back on the housing market- having just stripped the walls of our hall and stairs... Not really the time to be showing people around, but we did get a buyer and we thought the chain would complete.....

February we planned and decided several more big things like the catering. This included a nice trip to the restaurant of the caterers of our venue and had a lovely chat with them about our requests and my very fussy needs... veggie, nothing spicy, to exclude xyz, as high fat/calorie for me etc etc. They were lovely, very accommodating to both my needs but also my physical state (I wasn't feeling to bright that day, very tired and obviously lugging the jet pack around didn't help so Glen was carrying... oh and we had to relocate the meeting away from their lovely open fire!)
Mum had sold her house and was looking at places to buy, so I obviously went with her when my health allowed. One Saturday, mum, myself and her friend Anne went to view one she had put a provisional offer on, then on for lunch. For a rare time, I was actually quite hungry and very quickly (for me!) polished off my lovely veggie wellington and then dessert. Over food we obviously talked about the transplant listing etc, and Anne was asking questions about it all. On the way home I told her that I was planning on sorting out my 'transplant bag' the following day so it was ready for when the time came. We said goodbye and that was that.... until 11.50pm on Saturday 22nd. I'd had my customary Saturday night sleep through MotD, once that finished Glen woke me and I headed to bed. I was just putting my PJs on when the home phone went. I heard a few muttered curses about the time of night come from the living room then Glen answered, and went quiet, then 'I'll just get her'. I knew as soon as the phone rang it wasn't junk, and once I heard those few words I knew who it was. I won't repeat everything that followed as it was in great detail from my earlier posts... needless to say, that phone call changed my life!

March saw me ring in my 28th recovering in the general ward post op. I made some lovely friends with my 'ward nannies' and despite some ups and downs throughout my 2 weeks on that ward I was relieved to go home within 3 weeks of the op! Every little step post op was such a relief and exciting, I could already do so much that I had written off long ago, and it was just the beginning!! Despite being told to take things slowly, I just couldn't wait to get out and give these shineys a good workout, test them to see what I could now do! The physical pain was probably the worst part... my upper body was so weak, and my legs had very quickly forgotten how to work in the 5 days I was in bed post op. Things such as climbing the stairs into my home was hard work to start with as my legs were very weak. I couldn't do things like change my top, brush my hair or lift anything above chest height, but gradually things got easier, and I could do more for myself. I kept having to be reminded how soon after major surgery I was and to not push things, but hey... I'm not patient at the best of times, but coupled with the fact that I wasn't getting out of breathe, or coughing, along with the surge of energy I was feeling... I didn't want to sit down for more than a few minutes! I had stuff to do, places to be and I wanted to do everything NOW! 
Our house sale fell through, went back on the market, sold again then fell through AGAIN. I was getting to the point of just blow it, bigger fish to fry and more important things to focus on, but we figured to give it one last try.

April I met my Boys again, mum made an ass of herself in front of 'her' Kevin and we had an absolutely amazing time enjoying a sound check, meet & greet, play in the Sky Go area at the o2 then have a blast through the show. I danced as best I could given my chest pains. I sang my heart out and then some, even managing the long notes without even catching a breath! Before my op, when we booked the tickets, we had planned on how best to manage the day with the jetpack, my tiredness levels and travelling etc... none of this mattered now, I even ran up steps to catch the train home, ahead of mum!! Train home I expected to fall asleep, but I was wired... made even more so by the fact that Glen called to announce he had sold our house again to someone who promised to get it done in 4 weeks so we could still buy the house we wanted.
I had many trips back and forth to Pappy for transplant review, and several failed bronch & biopsies which was getting quite stressful and didn't help my migraines much at all. All in all though, my health was improving, I was able to do more for myself for longer etc. I think it was towards the end of the month that I really started being able to enjoy my new lungs again as my body had got back a lot of it's strength and I was feeling more confident in my abilities to function 'normally' again.

May was quite a hectic month... we moved house, I had my Hen Day activities and lots of wedding planning and prep work etc. It was very busy and tiring, and had I not had my transplant, I really think it would have been far too much and I would probably have ended up spending most of this time either/and on IVs or in hospital. I'm still quite amazed that we moved house on the Friday, then I was out doing my hen activities the following day and it didn't completely wipe me out. There is NO WAY that would have been possible pre-transplant.

June was obviously a big month with our wedding and subsequent mini-moon to Euro Disney. When we planned (and booked) this in January, we had factored in how to make it as easy and simple with oxygen/nebulisers/decreased stamina etc as we could... but when it came down to it, there was no stopping me (or us!) The wedding day was fantastic as it was purely about Glen and I, there wasn't any moment where my health had an impact on something... other than during the speeches which did make me quite tearful. The day was nigh on perfect, and I know for certain that it would not have been anywhere near had I still been on oxygen and in the state I was pre-transplant. It was a big worry of mine how I would manage to get down the aisle/through the ceremony, first dance and photos etc without having the tubing and jetpack getting in the way. I know it was a part of what made me, me... but I didn't want evidence of my failing health shown in anything wedding-y so that when we looked back on the day, there wasn't any reminders of how poorly I was etc. I'm beyond relieved that this issue was null and void due to my lovely shineys.... and forever thankful to my donor for allowing me to have my perfect day just how a girl dreams of when she's little!

Things suddenly got a lot quieter from July, the weather was more or less reliable and decent to boot, so I was able to get out and do more exercise, both at the gym/classes as well as with Judy (and subsequently Bella too) I got the ok to start swimming around the end of the month so Glen and I started going again and it was amazing (and a little scary) to be able to just launch off into the water without anything holding me back. It was like being a little kid again- I was splashing Glen, and diving underwater, seeing how far I could in one breath and just generally enjoyed myself in the water- I had freedom! Mum, myself and Lyn signed up to do the Fright Hike, so at this point the training started. My exercising became a bit more about overall stamina rather than pushing to achieve more. I was exploring the new area where I lived, exercising the dogs and gradually increasing how far, and how long in one go I walked for. We found some lovely places locally to walk and I got more confidence in just what my body could now stand. I did have difficulties with my calf muscles as they kept cramping (as a side effect of medication) so sometimes my activities were curtailed, not because of my breathing, but because of a physical pain/problem elsewhere in my body. Quite a novel experience that!
I also started going to an open circle this month. Having been to our local spiritualist church for a platform evening, we got talking to a couple of people and we came away considering the possiblility of going along to a circle to try to develop our own spiritual skills. The first circle was very relaxing and worked a lot on how to go into a state of meditation, but we went to the next one to judge how different people ran their circles and found that the second one was more what we were looking for.

August was much of the same, just increasing what I could do, getting more confidence and trust that my body wouldn't let me down. I met up with people who continually were shocked and surprised with how well I looked and how far I'd come etc Initially this bothered me as I felt that I must have looked like crap before but no-one was ever honest and told me I looked poorly... but over time I just took it for what it was- praise and admiration!

September I took Glen away for his 30th- up to Alton Towers for a couple of days. It was lovely to have this planned for a couple of months and not be concerned with whether I would be up to it. We did a lot of walking and swimming etc and although I was ready for my bed each night, I was able to keep going and going. I also made roads into returning to work, and by the end of the month I had done my first couple of days back (ok, only part days but I was still in work!) I had a use again and a reason to function other than for dog walks and cooking! It was quite a shock to the system to have to get my brain back into thinking and work mode again. The first couple of days I think I was purely keeping my seat warm rather than being useful!

October my return to work continued to increase, until I was doing nearly all my contracted hours. It was quite tiring both mentally and physically to start with and I realised the effect of 4 proper morning starts, being active at work, home to dog walk etc. My body was handling it, and although I got a bit of a niggly cough for a week, I managed to continue with my hike training as well as going to work and having a form of social life. Towards the end of the month I started to get quite panicky about the prospect of the 30km hike. I knew that my chest was up to the challenge, but was unsure how the rest of my body would take the strain. Mum and I completed a 9 mile (approx half the hike distance) walk/hike over one pleasant Sunday. I completed it relatively easily, but I was still concerned that the full hike would be in the dark and probably colder and harder given mud, tree roots, bushes etc. By the time it got to the few days before I was really regretting my decision to do this, especially to go so public by raising money for charity too. The pressure I was feeling at this point was compounded by a couple of members of the circle (who belong to another church too) donating £100 as they were inspired by my little speech at the halloween party. Now I HAD to go ahead with it!!

November started with the hike... I'd like to say with a bang, but it was more of a long, drawn out effort which ended with my very colourful and painful foot, and having to be off work for a few extra days! I felt a little disappointed with myself in the fact that I'd needed help due to my mysterious injury, but once the emotion had dissipated, I realised just what an achievement I'd made- both mentally (I wanted to quit so many times as the pain was getting worse, and it was getting darker and harder) and physically- 8 months on from my double lung transplant here I was completing something which a lot of healthy people would struggle to do.... not only that, but I'd raised a lot more money than I had expected for 2 very deserving charities. The grand total for everything collected is £735 (£787.50 inc. gift aid!) Simply mind-blowing that people were so generous to our cause!
The rest of the month kind of blurred into a pre-christmas prep. Glen and I had a nice day at Lakeside getting most of our presents sorted and yummy foods while out. We planned to host Christmas day at our house with both my parents complete with full dinner and dessert. We did a trial run of the mains in our new oven to check we could get everything right and where things would go (its a range cooker with 2 ovens) and luckily it turned out well :) So were were now ready to start planning what we needed to buy in... which I may have gone a little over board with things like snacks and fizzy drinks, but hey, it's stuff that keeps!

December saw in a bunch of festivities. Mum & I met up for mummy/daughter Christmas meal with Zoe & Lee which was lovely to catch up properly and have yummy foods. This was the day after my work night out. We had a nice time in a pub just outside of Colchester. Had quite a laugh and also yummy food... I had to help George out with her dessert as she was beaten. She was rather surprised by my appetite.... but I didn't actually feel too stuffed after a starter, main and one and a half desserts. The ever growing Karen tummy knows no limits!!
I also had a couple of different interviews, the most succesful being for the intense AAT course. I was offered a place on the course prior to Christmas ready for a January start. This was the new start for my job prospects that I needed.
Christmas came and went pretty quickly as it always does. Dad joined us on Christmas day and stopped the night then went home on Boxing Day evening. It was lovely to spend a proper amount of time with him, and even nicer that I got to see both parents on Christmas day, something which hasn't happened for a great many years.

All in all a pretty manic, busy but wonderful year. At times it has been stressful, brought myself and my family to tears but also brought us much joy and many many laughs! I look back to how I was this time last year (I wasn't even on the transplant list at this point!) how scared I was at the prospect that my body was failing me so much I needed to be listed... I felt so drained both mentally and physically and had just reached the point that I'd had enough fighting constantly. Fortunately for me, my donor angel signed up to be a donor and with all cards on the table, it was obvious that someone up above played a big part in making sure I was on the list just weeks before my perfect lungs were ready for me.

I don't know my donor, and I probably won't ever know her family, but I really hope that she can look down on me (and her wonderful shineys) and know that a) she did the right thing by being a donor & making her family aware of her choices, but b) I'm not letting her very special gift go to waste, and I'm certainly not taking it for granted!!

A collage of pics that show my Transplant journey