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

Saturday, 29 November 2014

Fright Hike DONE!!

Almost a month ago, my mum, our friend Lyn and myself completed the Epping Forest Fright Hike. We were dressed in hospital scrubs (over our warm attire!) with bright pink/purple owl hats and wearing false beards.
At the start line in lovely November sunshine
The route itself was tough, particularly around mile 3 where there was a mightily steep and long hill that seemed to go on forever! I knew if I stopped at all I wouldn't get myself going so I plowed on, sounding a lot like a steam train and eventually got to the top of it, turned round to find I'd powered on quite a way ahead of mum & Lyn! Eventually (having got our breaths back and heart rates under control) we were able to carry on. By the time we reached the first checkpoint (around mile 5) we'd all shed our beards & hats due to being too hot (mum had lost her beard somewhere along the route & was devastated) The last mile of that all that was keeping them going was the thought of a cuppa... upon arrival we were told that the hot water urn wasn't up to temperature, but would be ready for us at the next checkpoint! They weren't happy about that, but I was content raiding their haribo tub and picking up an assortment of snack goodies which I stashed in my pockets for later on. (incidentally I brought most of it home again as I strangely didn't feel like eating!)

We carried on going for the next 8 miles (until checkpoint 2) as it got into full darkness and the long crocodile of people that started out ended up being very spread out, so at times we were walking just the 3 of us with the pitch black surrounding us. We were all on the lookout for anything slightly spooky or out of place, but it was a very strange thing, that one of the country's most haunted forests felt so calm and peaceful at this point, we were all a little disappointed (especially when Lyn tried to call something out to give us a scare!) The route was gradually getting muddier, wetter and harder to follow directly, so we were finding alternatives by climbing over and through all sorts of trees, logs and bushes. Around mile 11 I had to stop and take some painkillers as I was getting my old hip pain starting... knowing how far we still had to go I had the drugs to keep me going, which did help get me through to the 2nd checkpoint. About 5 minutes before reaching the checkpoint I looked down, and found.... Mum's wandering beard! She was a very happy bodysnatcher at that point! We arrived at checkpoint 2 approaching 9pm. I found a seat and promptly scoffed some savoury food and had a cuppa soup as I was starting to get the shakes from lack of food/sugar etc. We were told that the checkpoint closed at 9 and if we didn't leave before we wouldn't be allowed to continue. As I stood up, something in my foot went 'twang' and it hurt like hell. I tried to persevere in silence (shedding the odd tear along the way!) but mum & Lyn soon realised something was wrong and then as well as trying to navigate the route and the ever increasing mud swamps, they were on the look out for large sticks to help me along... when 2 failed attempts with different sticks, mum helped to support my weight for a while... but I ended up having to seek refuge on a very handily placed fallen tree trunk (almost shaped like it was intended to be a seat!) We waited for the team 'sweepers' (organisers who walked at the back to pick up stragglers and the route markers) to come to my rescue... I needed someone to look at my foot to see if it was something obvious- it wasn't!! Mum & Lyn continued on (and even overtook people who had long passed us!) and I was helped to the finish (with a slightly easier route so not as much pressure on my foot) by the lovely sweepers! We all crossed the finish line ... and I was determined to cross it unaided so very slowly hobbled/hopped over the line to claim my medal (and much welcomed cup of champagne!)

Our team with our medals on the finish line

By the end of it, I felt kind of a let out down as I didn't finish it all in full unaided.. I felt defeated! however I think this was the tiredness and general emotion of what had happened over those 6 1/2 hours. By the Sunday morning I was starting to accept the accomplishment achieved and realised that hurting/injuring a foot could have happened to anyone, even people who were professional runners/trekkers so not to feel bad that it was my foot that let me down. Ultimately, my chest, heart and general body fitness held up (and I think enjoyed the challenge!) my lovely shiney puffers did it! 
By Monday (not at work) I was still struggling to walk so headed to the walk-in centre for it to be looked at by a professional. I took my sock off in the car to show mum the swelling and it was rather colourful! The nurse took a look at it and questioned about it. She started to give me a lecture about using the correct footwear, wearing them in enough etc etc... at which point i told her my footwear, and how long I had been wearing them in and everything, explained that there was no moment of impact etc... all she could suggest was that it was a severe soft tissue injury, keep it raised, ice it for 20 mins a few times a day and keep weight off it as best as possible... which is what I'd been doing since Saturday night. Eventually (about 10 days later) I was able to walk completely normally again with it being back to the right colour!

All in all it was a fantastic experience and I'm so proud of not just myself, but mum and Lyn too. Our team were awesome and we've raised over £600 .. haven't got the final amount figured out as haven't received all 'by hand' donations. Now I can have fun creating activity and craft packs for Papworth CF Unit along with donating much needed money to Clarks Farm right as the weather gets colder, and Santa Paws is due to visit each of the doggies in their care. As soon as I have a final total it will be shouted form the roof tops!

Thank you to everyone who donated and showed their support to each of us... it really helped to know that so many people (some completely unexpectedly) were happy to part with their hard earned money and sshow their faith that we would complete this challenge. It means SO much to know people have believe in me when I set my mind to something!

Lastly, the biggest, most thought about thank you goes to my donor angel. Without my lovely shineys I probably wouldn't have got to the end of mile 1 in 6 1/2 hours!! It's approaching what is going to be a very hard time of year for her family, and I hope that she was looking down on me that night and was happy in the knowledge that her gift has led to this... and all the goodness we can share with our donation!

*You can still donate if you wish to by going to 

Monday, 27 October 2014

Less than a week to my Fright Hike & I'm feeling not quite right

So for the first time since my transplant (just over 8 months) I had a proper coughing fit last night which ended with me coughing up several lumps of gunk. I know not the most pleasant thing to share... but I haven't had this for sooo long it wasn't very welcome!

I've been back to work 3 days a week for 2-3 weeks now and enjoy being back into a routine & having a use etc, but I do worry about the whole germ issue and how being in a large open plan office with so many people (most of whom don't really care about others and spreading their germs if they get a slight cold or anything). I've had a 'risk assessment' done for my part of the office, but other than being given lots of sani-wipes and hand gel/foam not a lot else came of it.

Since mid last week I've noticed a slight drop in my sharp blows, but so small a drop each day that it's not really noticeable until you look at it over a few weeks. My overall capacity is still ok and remaining around the same point it's been for months, which is good, but the fact that my sharp blows are down would point to wards some kind of restriction in my airways- i.e. most likely, an infection.

My throat is also not liking this sudden bout of coughing, it's had so long without the pressure etc it is really quite sore, like I've been swallowing lots of sharp, dried crisps or something... it feels all scratched up :( It's hard to imagine that these new shineys of mine (one day I might stop referring to them as 'new') don't know how to cough properly... my old lungs, although pretty useless, knew how to deal with a good coughing fit, and if I knew where I was getting the issue (strange concept, but I could feel exactly where the issue was in my old lungs and almost be able to clear from that section) I could get a good huff and cough behind it and clear it... I can feel that it's my top right where whatever is sticking, but these lungs just haven't got the 'cough power' to fully get behind the gunk and get rid of it. I was really surprised when I did finally get a few chunks up last night, and I do feel a little clearer now... but the past few days have generally got worse and more uncomfortable as the day progresses.

Anyhoo, I've called Pappy like a good girl (under orders from Mum & Glen) and got a GP appointment later this afternoon to have a general check over. Pappy are happy (lol, that rhymes!) with GP checking me over & listening to my chest etc and if it sounds like infection then they can communicate to sort out some anti-biotics.

I may well be over-reacting as it's the first time post transplant I haven't felt quite right and the first proper coughing fit in relation to my old cough-fests was nothing really worrying... but combined with tiredness, a slight reduction in my interest in food (I'm still eating but not with quite so much vigor as we're all used to now) and the gradual drop in my sharp blows, we all thought best to ask for advice.

I can't afford to let myself get proper poorly... this week ends with my 30km Fright Hike and I need to be well enough, and have the energy to complete that. I didn't do much walking/training over the weekend as figured a rest was more what  I needed. We probably should have managed more than a 9 mile walk as our longest training session, but we're kind of out of days now! Ho-hum, we'll just have to force ourselves through it so that every lovely person who has faith in us and sponsored us isn't let down! - If you feel like checking out our team page, and even more so if you want to sponsor us :)

Below is my 5 minutes of fame in the local paper about our hike & my story etc

Friday, 26 September 2014

Seeing my CF team again & back to work

So this week has been quite a milestone (for me)... I had my CF annual review review.... and started back to work!

So I started the week with a trip up to Papworth for my CF Annual Review review- I had all the tests done about a month or so ago, and this was the session to go through all the tests and see what needed changing in my regime and make a plan of action for the following year. Now, due to my transplant and how good I've been feeling, I wasn't entirely certain what they could offer as a plan other than 'carry on'... So off I trouped back to my old Monday afternoon clinic spot. Generally in the past, the Monday clinics were busy and took forever... we generally found that we wasn't leaving till well after 6pm, so I wasn't being too optimistic about getting home sensibly- I was wrong!

The clinic waiting area was pretty empty and very quiet, there only seemed to be a couple of people waiting for the other clinic, but no CFers lurking around, and no sets of notes in the box behind the reception desk. I was shown into my room and after a few minutes the guy came in to do my lung function. He was a newbie and despite not having been to a CF clinic for about 8 months, I knew the routine of things, and how the computer programme worked better than he did. He hadn't grasped the timings of the system and kept telling me to wait, even though the onscreen prompt said to blow now... so I ignored him and read the screen and acted accordingly! I don't think he appreciated that, but the quicker I'm through my blows, the quicker the next member of the team can come in, and ultimately get me home quicker!

After he'd left we waited a few more minutes and the doctor (Nadia) and specialist nurse (Sam) came in. I was kind of expecting to have seen the physio or dietitian before Nadia came in, but it was deemed unnecessary. So we had a few minute catch up of all my goings-on post transplant (on a personal side, rather than medically) after this we got down to business. My lungs are now not dealt with by CF so we skimmed over that section (seems daft to make me do blows if they don't do anything with them now!) from a gastro point of view, everything is looking good- weight, vitamins, sugars etc etc all well within a normal range and nothing needs altering... same with pretty much everything else in my body! Ultimate conclusion, I'm doing well, to keep it up and to have a bone scan (Dexa) sometime after Oct 2015... and I'll see them again for my next annual review (unless I need them in the meantime!) Then we were out of there and back in the car before 5pm!

Thursday saw my return to work. I confused the dogs by getting up early and having a faster than normal morning routine... and really stirred them up when I headed out the door around 9am! So I got to work, had a bit of a chatty catch up with people on the team, then set about trying to get logged in. All in all, it took me about an hour and a half just to get logged in to all the systems I needed that day. Then the first spreadsheet hit my email and I needed to switch my brain into Patient Tracker mode again... a mode it hasn't had to run since February. It was always hard enough getting back into the routine after a few days off, let alone 7 months! I was pretty damn slow and had to keep asking questions- almost like I was completely new!- but bizarrely my hands knew the pattern of things for navigating the screens... so although my brain was thinking 'how do I get to that section?' my hands had already done it! Weird, but true! The PAS claw has returned.... I had to fight the urge of eating all my lunch pre midday, I got away with just the treat packet of sweeties I'd put in there... I did however find that my desk drawers had some Cadbury's Buttons so that made me happy... I know I have emergency choccie in there now, but I doubt it will last very long. I managed a total of 4 1/2 hours which I don't think is too bad for my first day back. Next week I'm going to attempt 2 full days of 6 1/2 hours... let's see how that goes!

So after work yesterday I took the dogs out for a stupidly long walk- I know I need to be walking longer distances in prep for the Fright Hike, but having been to work, I'd estimated doing about 45 minutes... practically double that we were out for. I decided to avoid the route that leads to Judy going paddling in yucky stream water, thinking that it'll just be a case of walking around those bits of tress, and coming out to another point... my thoughts were very wrong! It would have just been easier (and safer) to go the way I knew and clean the dog up when I got home... instead we walked an additional mile and a half, I fell down a hole and bashed Bella's head on the way down, making her not want to come near me for a while, The dog's thoroughly enjoyed exploring though, and we were all suitably knackered when we finally got home!

Today's agenda consists of housework, food shopping... and a nice meal out this evening with Glen's brother and his wife. We try to get together every now and then for a yummy meal - which only seems be of the Indian variety, 3 of 3 get together's have been in an Indian restaurant! Looking forward to it as we always have fun conversations and talk about lots of TV shows, swapping ones to watch/avoid as we seem to have a lot of the same tastes. A nice end to a big week.

Tomorrow Glen is off to a game's convention and so me and mum decided we should go out for the day too... so we're off to Madame Tussaud's and who knows what else we'll get up to?!!

Remember to pop along to my Fright Hike sponsorship page and donate/sponsor me to help spur me on through longer training walks. Thanks to Glen's fantastic work colleagues, our target is really close to being achieved already! Dig deep and help us to help Papworth & Clark's Farm :)

Thursday, 11 September 2014

Time for some reflecting

So today is 200 days since having my life saving double lung transplant... doesn't time fly when you're having fun (and breathing easy!) Over the past month or so (really since hitting the 6 month mark in August I guess) I've been doing quite a bit of thinking about how my life has changed... but also just how things were pre-transplant. I wouldn't say this was entirely off my own back, I've had quite a few serious (ish) chats with people about what I can do now and how this differs to my life before and it's got me thinking a little more about everything.

Pre-transplant. (The early years!)
I wasn't diagnosed until I was about 5 1/2 years old (by today's standards that's pretty late) so I had quite a bit of scarring damage already sat in my lungs when the doctors first got their hands on me! Through primary and secondary school, I was very active, doing almost any activity available to me, which helped massively with physio, and chest clearance. The eating side of things was never a good topic, and was a frequent cause of arguments and unhappiness. As I got into college, my exercise regime diminished, to pretty much just walking to/from college etc. I did do a bit of swimming from time to time, but nothing regular. Throw in a change from GOSH to an adult CF clinic at London Chest (LCH) and my whole CF life was kind of derailed. I never felt that I could trust the team there, so although they were altering my regime (supposedly for the better) they never really took into account of what I wanted/felt... all in all I became a lot less compliant with things, especially nebulisers and physio sessions. This fell in perfect timing with me going to Uni and being away from home. I no longer had mum breathing down my neck to do my treatments, or to eat at set meal times etc. I was suddenly free to do as I wished! Que a decline in my overall health.
I had my first ever CF related admission during the first year of Uni (age 19) which was quite a shock to the system. My lung function  had declined and my weight was pretty naff, although I think I did manage to pretty much maintain it despite having to cook for myself! During my admission, the consultant (in her ever lacking bedside manner) strolled into the room and basically said "if you don't buck your ideas up, we'll be putting a port in your chest and doing a gastrostomy" then turned on her heel and left me reeling with these new terms and thoughts of impending surgeries. Quite rightly, this freaked me out and I had quite an emotional conversation with my mum (who was probably in the middle of her office) I outright refused both of these suggestions and promised to myself that I wouldn't let them happen, I was going to do better and get myself well away from those possibilities.
In a nutshell, I couldn't prevent my lung function dropping due to catching Cepacia (a nasty bug that is very clever and resists most anti-biotics. Once caught you need extremely rigorous treatment quickly in a vague hope of getting rid of it.) and my weight never really did much - maybe fluctuating by a kilo. By the time I was a year out of uni, my lung function was gradually dropping into the 40-50% range, and I was needing more regular IV courses. Having had long lines through my arms for the past 4-5 years I was facing weeks of pain and discomfort with each course. It got to the point that I couldn't even last 2 days before needing the line changed due to it getting blocked and painful, so I finally gave in and accepted I needed to have a port-a-cath put in. 
In the summer of 2010  I had my port put in my chest. It was pretty much a pain from the start. It was in a ridiculous place (right in the centre of my boobs) so I had to butcher all my bras and remove the underwiring, it was also very stiff to administer anything, so a lot of force was required to push through bolus syringes of medication, and I couldn't ever have a drip running without a machine to pump it through, oh and it never bled back- which was one of the big selling points to me was that I'd no longer need to have blood taken through my arm, it could come out my port. Throw in the fact that it had to be flushed every 4-6 weeks and there was suddenly a lot more to take in than first thought... and now it was in me, there was no going back! In hindsight, it was the right thing to do, it did make doing IVs so much easier, and when it wasn't accessed it could be well hidden as I didn't (still don't) have the habit of revealing my boobs to all and sundry.

Pre-transplant (23 onwards)
I think my health did start the downturn when I went to LCH, but having had a few even worse experiences with some of the staff etc, I decided to change my care to Papworth. This decision was based on 2 key points- it made sense logically due to travelling, and if I ever got to the point of needing transplant (wasn't something I'd ever been talked to about, or even considered as being a route for me) my whole care could be managed by one hospital... and if it was good enough for Royals, then it must be good enough for me :)
Even on my first appointment with Papworth I realised how my care could be maintained and looked after in such a different way. Although within a few days of my first appointment, I was admitted for a couple of weeks, I had gone into my Papworth life with a more open way of thinking. They wouldn't admit me so urgently if they didn't see the need for it.  I had a heavy dose of new anti-biotics (they were actually trying new things with me, this was novel!) and had a strict regime of physio and saw the dieticians regularly who organised more food than I could shake a stick at. I saw more people before lunch here, than I did in an entire stay at LCH. I got out after that admission and did genuinely feel better. They were going on the basis of having semi regular 'MOT' admissions in the first year in order to try to kick my bugs into touch, with the hope that it will prolong the need for more intense admissions in the future.
Ultimately my lungs, although getting a fraction better initially, just couldn't carry on under such harsh abuse from the nasty bugs having fun and games in there. My lung function kept dropping to the point of now being around the 35-40% range. Now transplant was brought up quite seriously. This was a shock to me (and my family) as I'd always been so well, transplant was for sick people, so it didn't seem right for it to be considered for me. At this point I said it was something I'd consider in the future, but not even worth considering now. 
Next suggestion was the point of tube feeding as my BMI was never getting above 18 (into the normal range). I'd had a bad experience with a nasal tube at LCH and wasn't keen to try it again, but this was better than the alternative- a permanent stomach tube. So begrudgingly I tried the nasal tube on one admission. I got it down on the second or third attempt, but the tube itself only stayed down for a maximum of 5 minutes, but it was a good start. Next admission I tried again, got it down and even managed to tape it to my face and start watching TV... about 30 minutes later, a slight throat clear and hey presto! Tube back up. After numerous talks, demonstrations and my body's unwillingness to put on any weight we all decided it was time to have a PEG (stomach tube). The op went well, the post op phase started off OK, but soon took a turn for the worse when my oxygen levels refused to go above 80%, and one day I ended up as an emergency admission into Papworth as my oxygen levels (sats) weren't even above 60% - I'd turned a funny colour of grey/blue, and basically had no energy to even move, I was ready to curl up and just let what was going to happen, happen. Luckily, Mum & Glen got me to Papworth quick smart and within about 10 minutes of being put on a high level of oxygen I was my normal colour and back to being myself. This saw the start of my 24/7 oxygen needs. After this, I was permanently on oxygen- I had more portable cannisters delivered to home, along with a machine for when I was at home (and later got one for work too).
Although the oxygen obviously helped with my energy (and colour!) it was the start of me pulling back from doing everything that made me me. It was such a gradual decline, I don't think I ever really noticed (along with those that saw me daily) just how bad things were getting. It was only when people who only saw me rarely would make a comment (mostly to mum who then relayed them to me) that it would strike home how things had changed over that intervening period between visits. By the August of 2013 I was seen in the transplant clinic and it was felt that it was time for the assessment. My quality of life was majorly impeded by my oxygen and lack of lung function (now sitting mid 20%) despite still working and doing everything possible, I was permanently tired, and even only working 5 hours a day, I'd come home and normally be asleep on the sofa when Glen got home from work, I'd wake enough for dinner, then be dozing again until bed. Even after 12 hours sleep I still felt tired. My body was running on empty. My weight however was starting to increase thanks to the tube feeding, and I even had a form of a natural appetite, so I didn't have to tube feed as often as originally thought as I was actually eating like a normal person (some of the time!) I think just having it there as a back up took away a lot of the stress and pressure that had always accompanied meal times- we were now able to enjoy what I did eat, and if it wasn't a 'normal' adult amount, then I could feed overnight and not lose out on the calories/nutrients I needed. A weight had been lifted (no pun intended!)
September 2013 I had my 3 day assessment for transplant, and was followed up around November time. The doctors all felt it was time for me to be listed for double lung transplant. It was kind of what I was expecting them to say, but me being me, I refused to go on the list until the New Year- mostly because I had my holiday to Antigua booked, and I didn't want to go on the list before that and potentially miss out on the holiday if a call came in before! Silly I know, but you can't stop this girl having her holidays! As it turns out, the holiday was where Glen proposed so I would have missed out on having the holiday proposal and maybe wouldn't have even got the proposal yet depending on what happened!) So end of January I saw the team again and it was D-Day. I signed all the documents to put me on the active waiting list, was told it would be a few days before everything was 'official' but I was now waiting, and should be ready for a call anytime (although realistically it'll be months!) My lung function was now about 23%.
February I was started on a course of IVs (a week in Princess Ward, then finishing off at home) as I was feeling quite buggy and lethargic (more so than normal). Less than a week after finishing this course I got my call! Everything seemed to line up nicely for me- having just come off the back of an IV course, I was in a relatively stable position chest-wise. Obviously it was quite a shock (as told in previous posts) and everything seemed to go really slowly on one hand, but whizz by on the other!

How was I pre-transplant?? I was tired all the time, I had permanent back/rib ache from constant coughing, my hips were hurting (I was obviously holding myself all wrong due to the coughing), I was getting a lot of stress headaches from coughing, I was grumpy and fed up. I hated the fact that I was an imposition to my family, nothing could be done spur of the moment, it always took a LOT of planning to make sure I had enough oxygen, extra tablets, spit pots, places and provisions to rest if needed etc. Even a 'quick' trip into town seemed like a massive expedition that I needed accompanying on in case of emergencies. I was dependent on other people just for me to exist. Ultimately I was unhappy and fed up- not that I let on to others around me... well not consciously, but I'm pretty sure they all could tell.

It's only from sitting now, and looking back that I can admit just how unhappy I was. I wouldn't accept or admit it to myself back then. It was almost like if I ignored those unpleasant feelings then they didn't exist, and therefore couldn't do me any harm.... but in reality I think bottling them all up just made me feel even worse as I wasn't sharing my true feelings... I wasn't being true to myself, or those around me. Not a good thing!

200 days post transplant
I can honestly say that things are going great! I had a review appointment on Tuesday and they're really happy with how things are going *touch wood*. My x-ray is clear, my weight is good and most importantly my lung function was awesome- the total amount I can breathe out is ABOVE 100% and my FEV1 (how much I can blow out in 1 second) is at 96%. Compared to about 7 months ago when neither of those were above 25% I'd say that's bloody brilliant!! My exercise tolerance is amazing, the thing that holds me back is generally my limbs not being strong enough to do everything my mind and chest wants to do. I generally do feel so happy! Honestly, the only thing that I am a bit fed up with is that I'm sat at home doing boring housey things all the time, and not really having too much of a life purpose. I'm in the process of sorting out a staggered return to work (Drs gave me the OK to start back now I'm post 6 months) so hopefully I'll start to feel a bit more like a 'normal' adult again going to work. Although I'm sure once I'm back into the working life I'll miss all my free time!
I am now no longer dependent on anyone, if I want to go out for a wander, I just go. If I want to go swimming, or for a bike ride, I get my bits and go. Planning time away more than a week in advance is now possible as I can pretty much rely on the fact that I will be well enough, and have enough energy to cope with whatever is planned. Days out can be done spur of the moment, I don't have to worry about only having x amount of oxygen cannisters until my next delivery.
I can cook my own dinner without fear of blowing up the house, or having to come off oxygen for time in order to cook using gas. In our new house, I wouldn't have been able to be in the kitchen, dining or conservatory (all open plan) while Glen was cooking due to the fire risk so I would have been confined to the living room only.
I now have such an appetite and interest in food that I want to get into baking/cooking properly, whereas previously I had no interest at all in anything food related. I was tempted to make Glen a birthday cake, but after my first attempt fell a bit flat, I thought it would be more of an insult to serve him something pathetic... so I defrosted a bit of our wedding cake for us to munch through! Much nicer.
Obviously June saw us get married and go on our honeymoon. Although we'd planned it with the thought I'd be on oxygen and very tired, the fact that I got to that important milestone with nice new shiney's was beyond amazing. It probably was the best wedding gift (lovingly sent from my donor angel!) we could have received. I was able to be part of every second of the day without having to take time away to rest. I enjoyed walking down the aisle unassisted (by person or oxygen), I could have my first dance unimpeded by wires and I could generally float around the venue in the princess dress that was sooo me! None of that would have been possible if I hadn't got my op. Our honeymoon, we barely stopped! We walked sooo much, I could run, play, climb, dance etc... (yes I'm a big kid!) and generally just enjoy being with my husband in Disney, practically without a care in the world (I was missing my Judy obviously!)
Since then, I've been building up all the exercise I can do- starting off with support from the gym trainers, or family/friends, but now I'm off to fitness classes, going swimming, doing epic walks with the dogs, going for bike rides etc... none of this I really saw myself being able to do again... even the thought of having the transplant didn't really compute just how much my life has changed.

When a 'normal' person has to take the dog for a walk, or force themselves to the gym after a particularly 'foody' weekend they see it as a chore 'I suppose I'd better take the dogs out for a walk'... or even a trip to the supermarket to do the weekly food shop. For me, although sometimes the timing isn't great, or I have to juggle things around in my day, the actual act of going out and doing whatever is a happy thing... because I CAN do these things for myself now! I'm sure over time the novelty will probably wear off and dog walking, exercising and food shopping will be seen as a pain in the bum, but for now I'm grateful for them. I appreciate just what living is, and I'm doing just that... I'm LIVING my life now, not just existing.

200 days on for me being able to live, means it's been 200 days that my donor's family have been without her.Thank you to my wonderful donor angel. She was a brilliant and kind lady who even in death was able to give the most wonderous of gifts... she gave me back my life!