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!

www.virginmoneygiving.com/team/beardedbodysnatchers - 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

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 :)
www.virginmoneygiving.com/teams/BeardedBodysnatchers

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! 

Surprise 30th birthday trip

So I had a busy few days...

Last Thursday I took the doggies to the kennels (for Judy the first time in about 8 years she has been left in a kennels- I was a very worried mummy!) I went for an assessment at the local adult education centre for possible enrolment onto an accountancy course (passed with flying colours, and even scored better than the tutor on the maths section!) and then went to pick up Mr Glen from work ready to start his mystery 30th Birthday trip.

We stopped the night in a Holiday Inn in Corby, about an hour and a half from Glen's work. We had a lovely meal- albeit my curry was far too hot, even with the extra yogurt they brought to cool it down! The room was nice and comfy but we had to be up and out relatively early to get on with our day. Breakfast was nice (even got fresh eggs and pancakes cooked and brought to me personally due to the whole buffet/germ issue with my transplant). We then got on our way. Glen drove and about 45 minutes before arriving at our destination, Glen guessed where we were headed... and only because he saw the giant brown attraction sign. We were heading to Alton Towers!

Glen on the cable cars

When we arrived we parked up and headed into the park. I couldn't believe the cost of tickets now... luckily we got bogof otherwise it would have been practically 100 quid just to enter! Anyhoo, we had a lovely day round the park- experienced all the rides we wanted to with very little queue times. The longest we had was about 35 minutes for Smiler. As this was a new one for us, we figured it was ok to wait that long, although with the number of spins and twists my head did feel a little delicate afterwards. I know it's a world record holder for highest number of inversions-14- I do think it was one or two too many for me! Glen and I decided to bite the bullet and upgrade our day ticket to an annual pass for Merlin attractions in a bid to encourage more day trips to places.. we only need to do 2 more trips to theme parks in the next years to get our money back!

After our day we headed to our hotel for the night (about an hour away) We had a lovely trip through teeny tiny country lanes and eventually ended up just outside of Stafford. After we'd checked in and had a brief rest we headed into Stafford town centre for dinner... only to find that it is little more than a ghost town! Considering it was a Friday evening we probably saw a maximum of about 10 people walking around, and very little by way of eateries on the high street... weird! We eventually found our way to Frankie & Benny's... were served by a newbie on only her second shift. Provided us with some light entertainment, and a slight worry that we wouldn't get what we'd ordered... but all in all the food and evening was pleasant. Back to the hotel for some much needed sleep!

Saturday morning we had breakfast (not as nice or plentiful as the Holiday Inn the previous morning), checked out and headed back to Alton Towers for a day in Splash Landings water park. We had a blast (even though it was mostly blurry due to not being able to wear my glasses!) We did the flumes and water coaster, rode the lazy river numerous times and generally just acted like big kids for a few hours, I had no chest or tiredness issues etc. The only thing I did manage to do, was injure my foot by landing strangely coming off one of the slides. It felt fine after a couple of minutes... until later in the afternoon in th car home when I took my shoes off, then found I couldn't get it back on as it had practically doubled in size! I ended up having to strap it up for the following 2 days and try to keep it elevated and rest. Easier said than done when you have jobs to do and places to go... but it's pretty much sorted now, an odd twinge if I put weight on it in a strange way. After finishing in the water park, we went into their buffet restaurant for yet more pizza based foodage. We filled our boots then made our way home. Having made a brief stop in Ipswich for Glen to pick up his car, we eventually got home Saturday evening. I sat with my foot elevated and we vegged in front of the tv and had an early night. All in all Glen had a fab birthday surprise trip, and I enjoyed it too! Duh!

The past few weeks

So recently things have settled down a bit and I am actually taking things a bit slower- much to the appreciation to those around me! I can't stand sitting about doing nothing (as I'm sure you're well aware by now!) so have still been trying to fill my days with things a little less hectic...

The dogs and I have been doing a lot of exploring of the local area, on lots of long walks... Judy loves this and looks like she just wants to keep going, whereas Bella often seems like she's about to drop on the spot... but within a few minutes of being home, she's up for more antics! We've explored all around the local barracks' grounds, and woods/parklands. Found some really lovely walks and even got Glen out a few times of a weekend which has been nice. These extending walks have been good practice for my sponsored event I've now signed up for (details below) and look to keep getting longer.

I'm raising money for Clarks Farm Greyhound Rescue and Papworth Hospital NHS Foundation Trust Charity by doing the Fright Hike through Epping Forest. Please sponsor me at www.virginmoneygiving.com/team/BeardedBodysnatchers

My mum, our friend and myself have signed up and want to raise money for the two charities mentioned- Papworth due to all the fab work they've done, not just for me, but for all the CFers under their care... I wouldn't be where I am now without them! I'd like to raise money to buy them some kind of fitness/gym equipment for the patients that can't go into the unit gym due to cross infection issues. I know when I've been an inpatient and felt up for doing some kind of exercise I've been really restricted as the equipment they have is in the unit- if you grow particular bugs, you can''t go in there :( We're also trying to raise money for a local retired racers rehoming kennel... it's where we got Bella from and think they could do with a little helping hand with winter fast approaching- maybe get them some new blankets or bedding etc. If you could spare, even a pound or two it will all be a help to get these 2 charities a little extra help :) *smiles sweetly*

I mentioned this a while ago, but am looking at doing a form of education course, I've pretty much decided on starting up a level one accounting course. Yes, it's going to cost me money, especially if I progress to the higher levels without it being part of a job, but it will get my brain (yes I do have one hiding somewhere in my head!) working again, will give me new skills and hopefully will give me motivation and the tools to look for a new kind of job which will stretch me and give me a bit of job satisfaction again. I go for an interview/assessment later this week to see if I can sign up to the local course, so fingers crossed!

A few clinics ago I asked for information on my donor... the first time of asking I got put off (is what it felt like anyway!) so the next time I went up there I made sure that whoever in the team I saw, I mentioned that I wanted to know at least a basic amount about my donor. By the end of that clinic I was taken aside by the nurse who had found out some information for me, but wanted to know what it was I wanted to find out (she only had restricted basic knowledge, and if I wanted more then she'd have to go and request it etc) It turned out she knew what I wanted to know so we could have our talk about it... mum obviously wanted to be a part of this conversation so she came in too. In a nutshell, my new shineys came from a lady in her 60s who died from something head related, and had no other concerning medical issues listed. We also (mum and I discussed this at great length after) kind of sussed that she was from the North... but as they tx team can't give details as to whereabouts donor organs have come from she couldn't say.... I'm glad I know that they came from a lady, as now we can think about getting a fitting tribute for the garden that is appropriate- I didn't want to get something really feminie if the lungs had come from a bloke for instance! Ultimately, I want to write a letter to her family (assuming she had a family of course!) and show them a picture of the tribute and let them know just what her gift has given to me.. but I don't feel quite there in terms of knowing what to say!

I've now finally been able to start swimming again as my steroid dose is below the level that the doctor said it should be... literally the days where I was reducing the dose I was paying close attention, and as soon as I had done my 7 days at the lower dose I was straight away asking Glen if he wanted to go swimming with me! We've been 3 times now to or local leisure pool to play in the wave area, been on the slides and in the rapids area... it is SO amazingly awesome to be able to swim, and play about... dive under water, do handstands and roly -polys etc all without a worry. I feel so FREE!! I can tell that Glen is worried about me most of the time, and any slight throat clear or splutter (I've never been any good at keeping water out my nose!) and he's there questioning if I'm ok... and surprisingly I'm fine :D my chest is feeling worked, but in a good way, there's no stupid choking or struggling to get air in... I don't have to take 10 minute rests on the side after swimming 1 measly width.... and most importantly I can swim wherever I feel like in the pool as I don't have to keep within 2 foot of the wall attached to someone carrying my oxygen along the side. Ultimate freedom and happiness :D

What to do with my time now?! --> New look blog!

Firstly, I hope you like the new look to my blog.. in a bid to do something more interesting with it, I gave it a bit of a revamp, new background and colour scheme etc. I'd love to be able to design it all myself from scratch and not use the standard templates etc, but I know my limits!! Also, I get distracted (and bored) very quickly so I stuck to just these changes for now so something actually got done!

So since the wedding and honeymoon, I've felt a little like I have no purpose... I had so much going on in the run up to the wedding.. with post op recovery, wedding planning, honeymoon planning and moving house.. now everything just feels kind of flat! I'm feeling SOOO much better health-wise that when I'm just sitting around the house 'taking it easy' I'm bored very quickly and feel I should be doing something more worthwhile.

Mid June I had a clinic which was also a bronch/biopsy day. Clinic went well and I was taken over to the ward to be prepped for the bronch. As normal it wasn't a guarantee thatit would proceed to biopsy, but I just kind of felt that this time, I was going to be staying over night. I had a selection of sweeties and tv/films on the hudl and was ready for a night in Pappy. I went down to the 'bronch room' and had to wait a little while for the previous person to finish up. There was an upset girl talking on the phone just to my side, and without trying to listen in, I found out she was a fellow CFer who had had a bad clinic and was facing the prospect of having an admission, which was obviously a surprise to her... once she was finished on the phone I just felt I had to try to console her, and we got talking. By the time I was called through for my bronch she'd stopped crying/swearing and I hope I reassured her a little. She at least took my mind off the upcoming bronch (I didn't feel nearly so anxious as I had done previously, but this distraction really helped!) All went well, and once I'd recovered back in my room I found out they had done the biopsy so I was staying for the next 24 hours for monitoring until the results came back. The following afternoon I got the news that the biopsy was all good, with no signs at present of rejection, and the infection that has been lingering in my right lung, is still present, but looking far better than the last time they went in. All in all, very encouraging and it led to them stopping 2 lots of nebs and then making a plan for reducing other meds bit by bit. Woop! During this time with the team, I asked about getting information about my donor... I kind of felt like I got put off somewhat on this occasion, so I thought I'd leave it and try again at the next clinic!!

The end of June I took mum out for an early  birthday treat... we went to Chantry Park in Ipswich for a 'boyband' fest. Mostly for Backstreet Boys, but there was also 5ive, Scouting For Girls, McBusted, Diversity and some young American group who were pretty shite and very forgettable! We had a super fantastic day. It started off a little on the damp side and we spent the first few hours trying to huddle under the umbrella and cover up with the blanket as much as possible... by mid afternoon (around the time that 5ive were finishing up their set) the sun started to break through... and by the time that Backstreet came on to do their 45 minutes or so all clouds had departed, the sun was out, and raincoats, jackets, brollies etc were all discarded and we could have fun in the sun with our boys! It was awesome to see them performing so close (we were in the gold circle, only a few rows of people back from the stage) and as a lot of people were there for McBusted, we had a lot more space to sing and dance during BSB as they took that time to go get food or drink etc. All in all a fabulous day... just made us want to go on the BSB Cruise even more :(

The following weekend Glen and I went to Northampton for his birthday flight simulator experience... his birthday is September, and this was LAST year's present because he was rubbish and hadn't got round to booking it, then it got cancelled and ended up being in July. The drive there was simple and pain free.. We arrived super early though so sat in the car eating our sandwiches and generally killing time. When it eventually got to a suitable time to turn up, we went in. The reception area was decked out like an airline lounge with the desk made to look like cabin furniture etc, cool if you're a sad plane geek like me! Glen got talked through his introduction about what was to happen, and they decided what 'routes' he would be flying. Then we were taken through to the simulator. It was really cool and made to look like an actual cockpit. I sat behind the 'captains' seat and was able to watch everything throughout. Although I was obviously interested in how Glen did with taking off, navigating and then landing, I couldn't help but be nosy and spent a lot of time looking out the 'windows' at the scenery and everything around... Yes I'm a sad plane geek! I admit it :)

Having got our new house finally ours, the next job came furnishing. So having ordered stuff we eventually got it delivered... Only to find that 2 of 3 units were either damaged or wrong (and this was just the bedroom, not counting the stuff for dining room!) Long story short, we are due to get the last item for our bedroom next Tuesday then hopefully we can finally have a proper bedroom! I have enjoyed the flat pack building... I find it like a more physical jigsaw which is cool! Although I do get annoyed when packs don't include something pivotal... If this wasn't the case we would have had our over-bed unit sorted at least!

Glen and Bella having cuddles

So, back to the not knowing what to do with my time/being bored... Since we move we've been debating whether we should get a new furry baby... After honeymoon I started frequenting doggy rescue websites (and even physically went to a couple) After visiting to get one dog called Stella (a mongrel) with Judy, we realised that going to a general rescue kennel wasn't the best way of dealing Judy with the prospect of a new friend... so we re-planned. I went with mum to pick up her greyhound from the kennels after her holiday and asked if I could look at their ones needing homes that matched our thoughts on what Judy might like. I met 2, a boy and a girl, but fell for this lovely little girl called Keeley. I took a picture and sent it to Glen, then we went home to think on it. The following weekend we took Judy (and Glen) to meet Keeley and hey presto, we decided to get her. I waited until the end of the following week to bring her home as I knew I'd be out a couple days that week and it wouldn't be fair to expect a new dog in a new place to behave all day being left. The following Friday, mum came with me and we picked up our new furry baby. We renamed her Bella as neither of us liked Keeley, and she didn't respond to it. She seems to be used to Bella now, but the recall is quite difficult to drum into her. We had a few teething problems, mostly her crying through the night, and Judy not liking having to share her house and humans! We're getting there slowly, and most importantly, we haven't had any fights between the girls and we're generally getting to sleep through the night now! I'm getting to take lots of lovely long walks with 2 beautiful girlies now... although Bella isn't used to such long ones and she struggles sometimes to keep up with Judy and I!

Busy Few months... pt 3

First off... I've surpassed 2000 blog views now... thank you to everyone who has read my ramblings! I didn't honestly think that all my crud would be interesting to ... well anyone! :D

So, obviously I'm now a married lady! 9th June was the magical day that I thought would never happen... both through the groom's reluctance to actually propose, and also through ill health! When we set the date back in January, I was on oxygen 24/7 and wasn't even on the transplant list so I assumed my day would be ruled by my medication and rest periods. Little did any of us know that the plans being made for a small/light dress, factoring in rest time for me between key things and trying to source/make something pretty to 'hide' my oxygen canister and tubing weren't going to be needed.

After my transplant, (as already explained) I changed my dress due to being able to wear a different style (and also heavier, fuller dress), but I was also able to actually plan a full day, including a proper first dance and not needing the consider rest periods. The day before my wedding, Mum and I went to stay in a B&B a few minutes away from my venue. We had my make-up/nails lady come meet us there for a bit of a girly afternoon sat in the pub lounge. We both had our nails done and discussed the plan for the following day with regard to make-up. After Cat had done our nails, mum and I went for a walk around Burnham-on-Crouch. It's a lovely little coastal town and the sun was shining so we had a really nice wander pre dinner to chill out. We returned to the B&B for a very leisurely and pleasant dinner. We were both fairly tired having had quite a full on weekend (the Saturday for me was about getting everything together- picking up the dresses, sorting out bags for taking away, including medications for both the wedding and the honeymoon, and generally trying not to freak out too much that something had been missed... and a trip to the local Medieval Oyster Fair- which mum was helping a friend out on a stall) By Sunday evening, we were both ready for sleep... luckily the beds were lovely and comfy and despite imagining being awake to all hours, I fell asleep pretty easily. 

Wedding day had arrived! We woke up and had a fabulous continental breakfast in the pub downstairs, then got our stuff ready to head to the venue. My best friend (and bridesmaid) arrived closely followed by the taxi to take us all down to the venue. We had a fun mini tetris like game trying to get everything and all of us into the taxi but we did it! When we arrived at the gates, they were locked, and my hairdresser was already sat there waiting. So I had to call into the venue 'hi it's Karen, the gates are locked'... 'sorry, who?' at this point inside I wailed... my wedding day, and the venue didn't know who I was!! Arrgg! So I repeated who it was, slowly and carefully reminded them 'I'm getting married here TODAY'... a few seconds of silence, then recognition dawned and she apologised and come flying down the driveway to open the gates!

The morning then passed in a bit of a flurry... mum, myself and Zoe were all down to have hair and make-up (of sorts) done so we had a nice rotation going on. My aunt also wanted her hair to be done by Heather after we'd all been sorted out. My cousin turned up as photographer, and accompanied by his wife they set off round the grounds taking lots of piccies before everything was set up. They also took photos of the getting ready process (as did Zoe between getting herself ready). The weather was a bit of a worry, as when we woke up, it was grey and murky... being coastal it was a strange 'almost' mist which was being forecast to turn into big storms and heavy rain by the evening... brilliant!! After about an hour of being at Creeksea, Zoe said she thought the sky was brightening and the clouds breaking up... so she then spent the rest of the time int he cottage running between the door on one side, and the windows on the other with a running commentary about what was happening in the sky!! By the time it got to ceremony time, it was brilliant blue sky, with an occasional fluffy white cloud, lovely warm (but not hot) sunshine... a perfect early summer day! About an hour before the ceremony it was time to get dressed, firstly I helped Zoe get herself sorted into her dress while mum got into her posh frock. Now both my key helpers were sorted they both helped me get into my dress. Somehow, between it coming out the dress carrier and getting onto me, it ended up with numerous soot like marks all over the skirt... this sent me into a proper bridezilla swear-off... my dress was ruined!!! Mum and Zoe zoomed into a frenzy of brushing at each individual mark and got 99% of them off, and my cousins wife said she couldn't notice anything... but I knew where each bit was. I took a bit of calming down from that!! I came out the room to see my dad, and the the registrar turned up for the official pre-ceremony chat. She chucked everyone out to talk with me privately to check I still wanted to go through with it (duh!) and to get all the official questions done for the certificate. Everything and everyone was ready to go! As we came out the cottage and got ourselves prepped to head to the orchard, a spied a few last minute stragglers running from their car, still tucking in shirts and tying ties... Once I found out later who this was it didn't surprise me in the slightest!! Zoe had a minor panic about the speed of walking in, and when she should go etc, but a quick talking to by my co-ordinator and we had things sussed. Numerous photos later, and we were good to go... cue the music!!

So I hadn't felt nervous at all in the build up... even when the music started I felt fine... until about halfway down the aisle it hit me 'omg mum, now I'm scared!' It was a lovely ceremony in the orchard, birds tweeting, sun shining, everyone either smiling or crying... and despite the fact that I was happy, there doesn't seem to be a photo of me not looking grumpy or terrified! At one point Glen had a spider crawling up his chest, it was quite distracting, and so i had to bat it away... but it could have easily looked like I was about to slap him round the face! Fortunately it would appear that no-one but Glen noticed this! And then we were married!! Woop!

Mr & Mrs Mills

Our Disney themed Cake

I won't bore you with all the ins and outs of the rest of the day. If you were there, you know how lovely it was, and if you weren't there... then you missed out! lol. Anyhoo... there was much dancing, much merriment, the food was glorious, music and company great. Had I of taken 18 months-2 years (the standard for wedding planning) I don't think it could have turned out any more perfect! The reception marquee looked understated, but awesome with my Disney balloons and simple homemade place settings, the wish tree table looked cool once people started adding their tags on, and the cake... OMG! It looked fabulous and tasted divine!!

The Wish Tree

The Reception Marquee

Table Decorations

 At the end of the evening we said our goodbyes to everyone, packed off the last few people into their taxis and then we retired to the bridal cottage where we very quickly both flaked after such a full on day! 'The morning after the day before' we were greeted to a fantastic breakfast spread laid on by magical silent fairies while we slept. We had tea, coffee, juice, toast, croissants, cereal, yogurts and all sorts of locally produced condiments etc... Glen not being much of a breakfast person had a little, but I tried my best to make it look like we'd had a fair bash at devouring the food! Once breakfast was done, we had to load up the car and safely get everything home again via a stop off at first the travel lodge to collect dads suit to return, and then the cake lady's house to return her cake stand. We eventually arrived home as man and wife (I didn't make Glen carry me over the threshold seeing as we've lived together for so long it felt a bit daft!) No rest for the wicked as we had to drop the dog and Glen's mum over to hers, finish getting the bags/car ready for our honeymoon adventure, do some food shopping AND go and be nosy at a house fire (and fire engine/ firemen) across the green!

Early Wednesday morning, we were up... Glen making sandwiches and me doing last minute nebs and medical packing. By 7.15am we were on our way to France! We got to the EuroTunnel port on time, to find that our train had been delayed by half hour, so had some time to kill in the terminal. After a while it was time to board the train and Glen had completed his part of the journey. Mid train journey we swapped places and it dawned on me that I would a) have to drive off the train, and then b) drive in FRANCE!! Needless to say, I managed both without incident... although every time we passed a lorry it made me shudder for some reason! We got a little lost at one point, but it only added about 10-15 minutes onto the total journey as Glen quickly jumped onto his phone with GPS to get us back on track... it could have gone horribly wrong if we hadn't done that so soon. 

Disneyland hotel

We arrived at the Disneyland Hotel, unpacked the stuff out the car and rocked up in reception travel worn and sprouting bags from all places to find a huge grand room, with giant staircase... I felt SOO out of place at that point in time! We checked in, found our room (very impressive) I did a quick neb and we were out into the parks! Our first point of call was to figure out where we could eat, as we figured we should eat and get an early(ish) night. This plan didn't work out as we couldn't find any of the restaurants we could use our meal plan in that had spaces. We eventually laid ourselves on the mercy of a lady in the Blue Lagoon restaurant (attached to Pirates of the Caribbean ride) and she got us a table booked for 9pm. So we had a couple of hours to kill so hit some rides. We returned about 8.30pm hoping to get in a bit earlier as we were both pretty knackered. We were seated a short while later, and had probably the best meal of our entire trip. Every thing we ate got a noise of enjoyment which surpassed the last... neither of us could pick a favourite part of that evening... the food, environment and staff were all stunning! We returned to our room and collapsed.

My Flaming Creme Brulee in Blue Lagoon

We spent most of our time doing LOTS of walking, lots of ride riding... and it would appear from the number of photos, lots of eating!! I ended up coming home the heaviest I had ever been  (since then I have surpassed that weight briefly before I realised I had to control my eating somewhat!) We tried different types of food, and enjoyed a variety of different experiences to what is available in America. Overall, the 'Magic Kingdom' park could have been mistaken for Florida (we had very Orlando-esque weather for the first few days) but the 'MGM/Hollywood Studios' park was seriously lacking in atmosphere. So much was lost by it being in French (I know it was in France, but the staff made little effort to play their roles or inject any enthusiasm into their jobs) We thoroughly enjoyed our time there, would probably return in the future, but not for so many days, and certainly NOT be there over a weekend! Although, our next Disney foray is definitely going to be a 'proper' honeymoon to Walt Disney World in Florida... We treated this as a mini-moon as it was planned pre transplant and several things would have been done differently if we hadn't thought we'd be travelling with oxygen and a very poorly Karen!!

Glen enjoying a doughnut

Me with the Spring Flowers display

Our journey home was pretty uneventful, although we were getting a bit squeaky with timings for reaching the terminal in time for our planned train... made ten times worse by the fact it took us over an hour to get from the first point of the terminal through both of the check-in booths... but which time we'd obviously missed not just our train, but the one after! Luckily we were allowed on the next one and only ended up back in England about 45 minutes later than planned! The rest of the journey was fine (although I was incredibly tired!) and we arrived home safe and sound!