Making Memories, Looking Back & Wishing You A Peaceful Christmas....

I’ve had a really busy fortnight since I last wrote, I’m enjoying every minute yet feel exhausted & just don’t ever seem to sleep!!!

Hannah the ‘Hank’ came from Portsmouth to stay with Dave the week before last, we have been talking since my transplant but hadn’t had the opportunity to meet face to face yet… On the Tuesday Dave came down to Totnes & brought Hannah to meet my beautiful babies - It was the first time he had come to visit my house & it was great to be able to finally meet the crazy cow. We had a few cuppas, giggles & cuddles with the snakes & then soon as Stef came home from work we ventured down the high street as it was late night Christmas shopping. Hannah & I had a few mulled beverages & I stuffed my face with a pork bap & Thai noodles! It was a good evening!

Hannah & I with my boy Thunder

Hannah & I at Guildhall with our

forever friend pressie from Lady Lungs

The following day I had my CF clinic at Exeter, so as soon as that was over with I went round to Dave’s to see everyone again for a few hours before I travelled home. Then on Friday, Marie joined us too & we went to Trago Mills for a browse & a bite to eat. We posed for lots of photo’s & basically just took the piss!! It was a good laugh & I was sad to see Hannah leave for home the following day, but I know I’ve met a friend for life & there’s lots more good times to be had….

Lady Lungs, KimBerry & Hannah Banana

Lungs & Heart!

Awwww He's sooooo FLUFFY!!!

Yes.... Butter Wouldn't Melt....

Horsing Around - Ha Ha Ha

Harefields Angels!!!

Last night I came back from Harefield after a long day at clinic.
I had a list as long as my arm of things to ask my consultant Dr Carby which have been on my mind, a few concerns that have worried me, but unfortunately he wasn’t there at all yesterday so I won’t go into it now. Hopefully in the New Year when he returns I will be able to get some answers but until then it’ll just have to wait. The day itself went really quite well, better than I could have hoped, my lung function has now reached 2 litres, at CF clinic the week before it was 59% so its slowly increasing bit by bit ! My X-Ray was good, weight is staying low but stable at 46kg & Simone seemed really pleased with my progress. Only thing I was disappointed about was that I definitely cannot eat my salami / parma ham etc this Christmas, it’s just far too risky but very a small price to pay considering I am here & able to enjoy it with my loved ones. I am sure I can find other delicious nibbles to feed my face with… She surprised me yet again by saying I could have a further two months break - so unless I become poorly, I won’t be back for clinic until February, absolutely outstanding for only 4 & a half months post!!!

I am exhausted but deliriously happy. I can’t express how much I am enjoying my life right now, I have blips here & there but I just get on with it. I cannot describe in any shape or form to you just how grateful I am for every deep breath I take. I am 100% certain I would have not seen this Christmas if it wasn’t for the generosity of my beautiful donor & his family. Some days I wake up as if it’s all a dream, I still can’t comprehend what happened only just a few short months ago…

As we approach one of the biggest celebrations of the year, I know that this Christmas is going to be extremely difficult for a lot of families who have lost that special person. My donor’s family included. To all the special people I knew & lost, long term friends, new friends & complete inspirations - Stuart, Chappers, Geoff, Alan, Lucy, Sarah & Julie to name but a few. Not a moment will go by this Christmas where I won’t be thinking of you, you & your families, my heart goes out to you.
I will also be thinking of those who are poorly & unable to be at home this Christmas, & an extra big wish for a very special couple, who I want to get the greatest Christmas gift of all …. Kerry & Josh, just praying your call comes soon - Love you both xxx

Bloody hell…. The above just HAD to be said, wiping away the tears ….

This year will be the first Christmas since Stef & I have been together that he actually has a decent amount of time off, & what with my new precious lungys, I am really looking forward to relaxing, going with the flow & just enjoying it. He breaks up from work on Friday & we plan to get our big Christmas shop done & out the way as we have our Morrison’s voucher & saver stamps already so our food & drink has virtually been paid for!! (She says… Stef knows what Im like down the alcohol aisle, whoops)

Then our special quality time just starts here…. We have a few little Christmases’ planned, seeing families on Christmas Eve & Boxing day, but having the actual day to ourselves at home with the snake babies. Maybe go for a nice winter walk, but mainly, onesie on! Yummy food & drink & lots of cuddles & Christmassy TV!! I will be seeing some friends too but we don’t plan to go out at all, especially Christmas or New Years Eve, 1) because its just ridiculously expensive 2) I really cant stand Totnes these days! & 3) I’m still protecting the greatest gift I have ever been given, I seem to be doing something right so I certainly don’t want to jeopardise it.

Tiger Lily & Blaze Wishing You A

Merry Christmas

I proberly won’t get the chance to blog again now until the New Year so that being said, I just want to say a few things….

To my angel & his family - not a second goes by where I don’t think of you, I hope I am doing you proud, & you are being looked after up there. My thank you will never ever be enough. Here’s to you my bright star ****

To everyone that has followed by progress; family & friends included - Thank you for everything. Thank you for picking me up when I’m down, thank you for the amazing messages I receive, the good luck, kick up the ass & well wishes & supporting every move I make since I was listed at the beginning of the year & beyond….

& finally, My Stiff. I can’t imagine what you went through this year…. My thank you will never be enough to you as well as my donor. You have been my rock, my best friend, my hero. I love you mind, body & soul & promise to make you proud as long as I shall live. You have made me a better person, you have made me stronger & a pure fighter & you never fail to make me smile. I love you & our babies so much, whatever comes our way in the future I’m determined we can pull through & I can’t wait to spend the rest of my life with you. xx

I hope everyone reading this has a Peaceful, Merry Christmas, I know it’ll be very difficult for some, but my thoughts are with you all -
I wish you the very best for 2013 & hope for better things for everyone.

Thank you as ever for taking the time to read..... 

Love Kimberley xxx

Getting Ready For Christmas !!!

Hi guys,

Just a little update to let you know what I been up to recently !!
I’ve been working really hard to stay well & germy free & look after these precious lungys, what with it being the 3^rd December we are fast approaching my favourite time of year & I so want to be well enough to be able to have one of the best Christmases’ of my life yet!!!

I decorated the living room & put our tree up on Thursday 22^nd November, some say a little too early but I say screw them! I love Christmas & making my home festive, what’s more this year I was able to do it all by myself, when this time last year I was barley able to stand up on my own for longer than 10 minutes without struggling for breathe.

My Christmas Tree!!

My tree wouldn’t be complete without a very special bauble which I had made, for my hero, my donor. A very good friend of mine is also making one for me for their family…. It’s just perfect, & when the lights are on, it lights up the little glass tree inside & you can see the special words I chose to have engraved; To My Angel, Eternally Thankful, Forever In My Heart.

My Hero's Bauble I Had Made For Them xxx

The snake babies even got into the festive spirit bless them……

Zante Helping Mummy Decorate The Tree

　
Talking of the snake babies, since my last blog, two more beautiful additions have entered our ever growing family.
Mace our special little boy who is severely underweight for his age, so we are feeding him up & taking good care with lots of cuddles in between & our big girlie, Dakota, a grown on female that is already pretty much up to breeding weight for this season if we wanted to pair her with an adult male. They are both gorgeous & settled in better than we could hope for… Still waiting on our butter royal girlie so will let you know when she arrives.

Mace - 66% Double Het Peach Ghost & TSK Axanthic

Dakota - Normal Royal Girlie

I was up at Exeter Hospital last week for a few hours as had to have a magnesium infusion as my levels had dropped quite low & I was really feeling the affect. Thankfully it gave me the boost I needed & it was great to see some nurses (more like family) on Culm again. Dave popped in & kept me company for a wee while too as the infusion takes a few hours to go through so that was really nice of him.I am back to Exeter this Wednesday for CF clinic, last one of the year I would imagine as I seem to be keeping things well for now & then up to Harefield a week on Monday - hopefully again last one of the year until sometime in January 2013 - will take some goodies for the staff as I know what they are like with Christmas & chocolate!!

Talking of Harefield, abit of great news to report as my cfer friend Neil finally got his transplant last week & is doing incredibly well, already on the ward & fighting hard to move around & recover, he still has a long journey ahead of him but hopefully without any hiccups he should be able to spend Christmas at home with his family & new lungs!! However, with this good news comes not so good news, sadly, my friend Kerry is still extremely poorly & desperately waiting for her call, she‘s getting weaker by the day & her, Josh & her family are having Christmas throughout December just in case…
I also broke my heart the day I put up my tree as my cfer friend Julie, sadly passed away after waiting 2 years & 8 months for her call that never came. I’m desperate to get more awareness out there for people to sign up to the organ donation register, if you can’t think of any new years resolutions this year that you won’t stick to, please please please, put your name down for this…. Some of us really don't know how lucky we are.

My Take A Break article came out last Thursday, I was really nervous as to how it would be portrayed & cacking my pants as I walked to our local newsagent at 6.45am to pick up my copies!! Thankfully although only a few minor mistakes, it was a really good piece & I have had so much support from friends & people in my surrounding towns after they had read it - So thank you to all who picked up a copy & even more so to those who sent me such lovely messages. Stef & I really appreciate it.

Issue 49 Front Cover - Shock!

Page 62 Double Page Spread

We’ve had a good couple of days recently helping & ‘hanging out’ with our friends Alicia & Kate from Exeter Exotics, then at the weekend we got up early Sunday & made ourselves actually do the car boot we had said we'd do for months… I was soooo pleased we did, we got there just after 7am and only stayed til 10am as we virtually sold all the stuff we took & made a fantastic profit. We were back home in the warm before I knew it, curled up under the duvet watching Christmas movies. I just love this time of year.
Other than boring mundane hospital appointments, I’ve got a few good things to look forward to in the weeks leading up to that special time, starting with tomorrow, where Dave (lady lungs) is coming down to finally meet my babies, & bringing Hannah who is staying with him for a week (Hannah had a heart transplant almost a year ago) too who I cannot wait to meet face to face after talking too her every single day for the last 4 months… After some cuddles & sweet hot cuppas we are going with Stef when he finishes work to have a nose around the Christmas market in our town & have a mulled wine/cider & hot pork bap!! Cannot wait…. Piccies of my up & coming pre Christmas antics to follow in my next blog :)

Blaze My Little Cracker Wishing You All

A Merry Christmas!

Thank you as ever for taking the time to read. xxx

Smiles, Tears & New Babies!!

I just thought I’d write a quick blog whilst I have the time to let you know how I am doing. Things are going really well, and for the first time in a very long time I am feeling so positive about my life, everyday I am so eternally grateful for being here.

I’ve still got another 4 weeks to go before I am back to Harefield, it’s been weird not having to go back again so soon but an absolute delight!
I’ve been keeping my days busy by seeing good friends, whether round their house or mine. I’ve also been really enjoying the fact I can do so much around the house on my own. I love being a proper wife again, I always start the day early (I haven’t had a lie in since transplant) no matter what and get my nebs and tablets done. If I don’t have plans seeing a friend then I will be sorting out all the snakes, bathing them, changing their bedding - sorting out the dishes and getting dinner started so by the time my husband is back from work, he is able to relax and we can spend the evening together without having any chores to do. This has been amazing, I can’t describe to you just how good it feels, such mundane things in life that people take for granted, I feel I get a massive achievement by doing so now. I really cannot thank my hero donor enough. Next week will be my four month anniversary since my transplant and time seems to stand still, yet at the same time fly by. It’s a very strange feeling.

Me & Chase (My Friend Hayleys Son)

On The Swings

I am still incredibly emotional, if not more so the last few weeks as people I have become friends with are having a really difficult time on the waiting list for a transplant (even if I have not met them face to face as yet) That’s one thing this new life doesn’t prepare you for, so many deserving people need an organ and because of the lack of donors available on the register, their time may never come. It’s heartbreaking, and I feel utterly helpless.

My fellow cfer Kerry is extremely poorly at the moment, she is desperate for her new lungs and I’m so scared for her. She’s one hell of a fighter though and I know she’ll do this, I just can’t help but feel incredibly useless when people are in such need…. Hang on in there sweetheart, please.

Since my last blog, Stefan and I have brought home not one but two new babies!!! We are also getting one this Saturday and have a deposit on another girlie for when she is ready which will proberly be after Christmas now. We love nothing more on a weekend than to go and visit our reptile friends Kate & Alicia at Exeter Exotics, we spend hours there just chatting away and looking at the new arrivals. Stefan has been working his arse off with work and we have been lucky enough to be able to add some more family members to our little clan - This makes me smile so much, nothing makes me happier than looking after my snake babies….

Kenya, Female Desert Ball Python

Baby Girl Kenya

Blaze Male Enchi Ball Python

Baby Boy Blaze

My chest is feeling good and my blows are consistant, I have still been enjoying going for walks even in the ice cold weather, come rain or shine it just doesn’t phase me, I’m so happy I can get out there and do it….

I’ve even finished all the Christmas shopping (to be fair I didn’t have a lot to get as don’t have a big family) and wrapped it all yesterday in the space of a few hours after my diabetic retinal screening so now I can just enjoy the festive season creep up on me!! If I’m lucky, Stefan may let me put the tree up this weekend, I’m such a big kid!!! ;)

So that’s about it really - Oh, don’t forget Take A Break is out next Thursday 29^th, if you are interested in my article, I’m absolutely shitting a brick about seeing it myself - just hope I’ve done everyone proud!! I’ll leave you with a few piccies now, until next time, have a good week everyone….

Me With My Boy Thunder Who

Is Heavily In Shed In This Pic!

Me & My Girl Kai

Me Today After My Good Friend

Jeanna Did My Hair!

Thank you as ever for taking the time to read. xxx

Opp's Slacking With My Blog? I Have Been Busy Honest!!

So much for my promise of not leaving it so long to blog guys, I can’t believe how quickly the last few weeks have flown by and I can only apologise! I haven’t been sat on my bony ass watching TV I can assure you! Everyday has been filled up one way or another so here’s a little update on what’s been going on with me...

To kick start things off I had my first proper day out with Stef & two friends of ours back in October. Our good friend Ryan treated Stef & myself to tickets to see the Superbike Championships at Brandshatch. I wasn’t too worried about the risk as the whole day was outside and being October it was fresh put it that way! We just travelled up through the day, about 4.30am on the Saturday morning (easy for me with my Harefield trips) and got there just after 8am. The day was incredible, I don’t think I have ever walked so much & been so happy about it, to the point my legs & feet were aching but I just didn’t give a shit! I had no chair & no oxygen, I wrapped up warm, (as it was bloody freezing) & I was arm in arm with my husband watching the races, looking around the stalls & having a great time, a huge thank you to Ryan for making that day possible, it was a great day for making memories.

Ryan, his wife Gemma & I

Me & Stefan

My Hubby & I

I have been going to Harefield every fortnight for the last few weeks, travelling up on a Monday. My lung function has been improving each time bit by bit & my x ray is showing no signs of infection. I’ve still got that bloody tummy trouble which I don’t think will improve until I am due to stop one of the post transplant medications which is later on this month… It’s tolerable however, and I am just living with it, like the rest of my CF problems, it’s just another day - but another day I am living & enjoying it!
My blood levels are still quite high & I am still unable to have my flu jab at the moment until they have settled down, my tacro levels (immuneos) are up & down every week so we are just adjusting the dose accordingly when I receive my blood levels back weekly - I did catch a cold off someone, it’s been incredibly hard being the time of year to stay clear of people’s bugs (I assure you I have been the most careful you can possibly be) & I was so disheartened when I woke with a runny nose sore, throat & for the first time since my transplant coughing up loads of disgusting gunk, just three months post - It was a bit of a kick in the teeth & I freaked out like mad, but it made me all the more determined to not let the infection get down to my precious new lungs.

I kept myself isolated for a while, made sure my nebs were inhaled to the last droplet and increased my exercise. I was at Harefield yesterday with my bestest tx buddies Lady Lungs & Hutch - my surrogate uncles I call them, they are both such a laugh and really look after me. We all had such a long day but the main thing was we all came home again and for the first time ever I was given a whole six weeks break providing I stay well & keep up the good work!! I am pleased as punch today, got a smile on my face that makes me look like I’ve slept with a coat hanger in my mouth, not even doing the food shop later will wipe it off my face I don‘t think…..

My Wonderful Surrogate Uncles, Dave & Steve

Both Recieved Double Lung Transplants Like Me - (Non CF)

Our Harefield Ambulance Driver Stevie

With My Burmese Thunder

I have been keeping myself busy seeing friends, usually one at a time and checking first if they are feeling unwell. I’m still not going to busy / crowded places yet, one of the reasons I am doing so well I should imagine but I do get out and about have a cuppa round their house, or browse the Christmas goodies at a Garden Centre…
Stefan and I had a date night the day before Halloween last week, he took me to the Model Village in Babbacombe, (again an outside venue so less risk) it was filled with little Halloween displays which we walked around a few times & then you were taken on a lantern lit workshop tour, it was bloody freezing but something we had never done before and I loved it, I am such a big kid when it comes to things like that! We then took a big bucket of KFC home and curled up in the warm, it was just perfect. I can’t ever thank my donor enough for giving me this opportunity - Spending time walking around with my husband, giving him a hand now with deep cleaning all the babies vivarium‘s, I couldn’t even wash my own hair four months ago, or walk to the kitchen to make myself a drink, and now I am living again. I just can’t explain this feeling, it’s overwhelming and I thank my lucky stars, my amazing donor & their family every single second of every day. Not one minute of my life is taken for granted.

Me & Leah

Stefan, my fantastic husband has been working his arse off lately doing overtime at work, in the hope to give us a good Christmas & to save for our ball python breeding programme. We still have two new babies to get eventually, but a few weeks ago we brought home a new family member, our beautiful Spider ball python, Tiger-Lily. She has settled in brilliantly & is doing very well, absolutely stunning I hope you’ll agree?! We love her to bits and can’t wait to save for the two new babies that we will be breeding from in a year or so’s time.

Our Gorgeous New Baby Girl

Tiger-Lily, Spider Ball Python

As you’ll remember me writing in my last blog, my brother Leigh was running a half marathon for my local CF charity EDCF at the end of October. Well it’s been and gone and he did a fantastic job, completing it in 1 hour, 49 minutes & 15 seconds!!! He is still collecting in sponsorship money but has so far counted just over £600 which will all go to the EDCF Quality Of Life Fund. Well done Bruv, immensely proud off you!!

My Brother Leigh, Completing His Marathon For EDCF

Finally, before I start my busy day of sorting out the snakes, dishes and then starting the food shop later before Stefan meets me to help with the packing (I‘m not Superwoman you know) I have some very exciting news….
A reporter got hold of me a few weeks ago and asked if I would be interested in doing anymore publicity on my transplant, of course I said yes as I feel it’s only right I do my bit to spread the word about organ donation! After a few phone calls back and forth and lots of questions answered, Take A Break asked if they could publish an article on my story. They were really keen to have it all done before Christmas and last Monday Stefan & I had a photo shoot with Guy Newman, a few shots of me walking on my own proud as lunch with my new puffers, and some lovely pictures taken of us as a couple, (hopefully, as I haven’t seen them yet!) the article will be published later this month, so for all you wonderful people out there following my story, if you’d like a little giggle, maybe shed a tear & what I hope to be a great awareness piece for Cystic Fibrosis & Organ Donation, look out for issue 49 of Take A Break woman’s magazine which will be out on Thursday 29^th November!!! I’m absolutely crapping my pants to see it….. Let’s hope I’ve done my donor proud!

Thank you for reading as ever for taking the time to read. xxx

Busy Kimmy, Clinic’s Walking & Tummy Troubles - My Transplant Journey - Part Four

I’m sorry it’s been a few weeks since I last blogged, life has just passed me by in a whirlwind with clinic appointments, wet weather & exercise!! When I’ve had a spare five minutes to sit down & write to you I’ve had a mental block & nothing has come out… It’s chucking it down outside once again this morning & as I have been up like clockwork with my bad tummy, and on my eleventh week exactly to this day since my hero donor saved my life I thought it was the perfect time to try & catch up with what has been going on recently so here goes….

Since seeing Dr Reed as written about in my last blog, I have been back to Harefield every fortnight on a Monday clinic, (again just this week) I worked hard with my exercise & saw my lung function improve slightly from the time before so Dr Carby was happy to let me home again with a 2 week break. I then went up again just this Monday & saw Simone the SHO. My X ray was excellent, showing signs that it was getting better each time with no marks of infection. My lung function was good, although I was rather disappointed myself, as all last week I worked hard with my walking & everyday my FEV1 & FVC increased bit by bit, so much so I was almost reaching the 2 litre marks! On Monday, I only managed to reach 1.70 - however, I was picked up at 5am & then sat on a journey to Harefield & got there at 10am, from then I walked into clinic sat down & waited & then had my lung function done pretty much straight away… When I’m at home, I at least do some kind of exercise first, then have a rest & then do my lung function so the results are always better. What do you expect when I’ve done sod all for the last six hours but sit on my ass on a long journey?! Hence why I was really pissed off, but Simone was happy as they were the same if not higher then my blows the time before…

My weight is still not very good at only 45kg, I can’t seem to put any on but I think this has a lot to do with the tummy trouble I am still getting since my admission almost six weeks ago. I was 51kg before my transplant and they really want me back at my original weight but until I get my stomach sorted I don’t think that will be achieved. I have to have a little operation on my scar as I have a part of the wire brace that has tired my breast bone / ribcage together since my transplant poking out of my skin, this is very uncomfortable, not nice to look at understandably and very painful as catches on pretty much everything, it will be under general anaesthetic but it’s a very simple procedure so nothing to worry about. Just means an admission to Harefield sometime soon which to be honest I am in no rush for!! I also had a bit of a cry as been finding things hard to cope with lately, what with a memorial of my dearest friend Kayleigh (who had CF & passed away at just the age of 17, 9 years ago) just been & gone & all the emotions you go through after such a life changing operation. Simone wanted me to see my Exeter CF Team regarding my tummy as she thought it was CF/ Creon Tablet related (the enzymes I take to digest my food) & I am due to go back again a week on Monday.

Clinic’s are mega long days, I am usually picked up between 5-6am, depending on traffic & who is also on the list to go up we are usually on the road for about 5 hours, I tend to get home between 8-9pm if not later….
Once we arrive we wait to have our bloods done, then weight, SATS & blood pressure. Next comes X-Ray & Lung function & providing you haven’t anymore specialist tests lined up you can then break for lunch & return to wait & see the consultant’s from 12.30pm onwards. You can usually ask Lindsay or whoever is at the desk at the time what time your appointment is to see your doctor & exactly who you are seeing so if you wanted to pop to the village or go for a walk you can do without missing your slot. Once you’ve seen your doctor, if you don’t have to go to pharmacy for your medications you can go, but then again this all depends on how many people are on your transport home and whether they have been seen or not. We managed to leave the hospital on Monday dead on 5pm, quite late but as usual really, the earliest I’ve ever left was 2.30pm and that was extremely lucky!!

The day is absolutely exhausting, it would be for any normal person let alone someone that’s had a double lung transplant and also as CF too…. I used to dread them, but to be honest, now I know the drivers, it’s a laugh, we always have a giggle, mainly at my expense, and even better if I’m lucky, I get to travel up with transplant friends I have met from my area (non CF suffers obviously) Steve from Plymouth & Dave from Exeter. They are fantastic blokes and really look after me when we get the chance to have a clinic together, so although it’s a tiring day, I do try and make the most out of good company, and at the end of the day if your feeling good, the outcome will be good and you get to go home again!!

Because Simone wanted me to see my CF team about my tummy I was up there yesterday for clinic. Basically, since my admission to the RD&E I have been getting the same tummy cramps like clockwork after I have eaten, and embarrassingly need to go to the toilet there and then. Like IBS it’ll just come on straight away and I have to go, soon as I’ve gone, I’m ok again, but this is happening every single day and a few hours after I’ve eaten. Its stopped me doing so much and I’m usually up from 5.30am in the morning with the horrendous pains. Dave (my tx friend from Exeter) came with me for company as I popped into see him & his wife Marie before my appointment time. I saw everyone, from physio to dietcian but the outcome wasn’t as great as I hoped, they moved around a few of my laxative medications and said they’d see me in a few weeks to see if it had helped… I’m on the highest creon dose I can take, I’m not stupid I know my body so know exactly how much to take with the fat content of my meal, and other than spacing it out more throughout eating they really don’t think it’s creon related. There is a medication I am taking however since my transplant which hasn’t been stopped and the side affects can be exactly what I am describing. So, I have decided to take matters into my own hands and take it at a different time of day to see if the pattern changes (my tummy is always worse in the morning as I take the tablet in the evening) so if this changes in the next few days I might find out the actual cause! If not, then it’ll be back to the drawing board but I really cannot put up with it much longer, it makes me scared to eat at times, its embarrassing, especially when there are times I am stuck in the car for up to six hours!! Not forgetting being nagged to death by both teams in Harefield & Exeter about my loss of weight & skeletor appearance! I am trying people!!

In between clinic’s as Stefan obviously works during the week (and has been doing overtime) the weekends are when we get to spend our quality time together. We have been out most weekends, even in the rain, travelling to different places for little walks so I can keep on top of my exercise & breathe that fresh cold air deep into my new precious lungs and chilling out in the evenings with our snake babies. I’ve loved every minute. It’s sods law that we have been invited to a few social events like friends birthdays etc that we have had to miss out but understandably it is still such a high risk for me in crowded areas (busy pubs, cinemas etc) / public transport & the longer I look after these new puffers the better I’ll be.

During the weekdays, I have been walking up and down the high street, for those who know Totnes town and where I live you know how steep the hill is!! If no one is able to meet me, then I tend to meet Stef from work on his lunch break at 1pm on the industrial estate and then walk back home then meet him again when he finishes, last week I think I walked up and down at least 3 times a day and was so proud of myself. Stefan even had me running errands for him the cheeky sod, but it felt so good being his wife that could help again rather than him having to wash and dress me because I was too poorly to do it myself. I’ve seen a few good friends, some I haven’t seen in sooo long and it was great to catch up and for them to see how well I am doing. I am yet to see some others but it’ll happen eventually I am sure of it. There’s only one place in Totnes I have been able to go for snacks and a drink as it’s spaced out and not as busy as other places so less risk of infection for me than the pubs and other cafes in town. Plus I can have a good walk there and back and love looking at the stuff for Halloween & Christmas! So if you see me tagged in China Blue it’s because that’s the only place I find I can go at the moment, unless its outside at the Seven Stars but with the weather recently it‘s not been too nice and you tend to get the smokers around you! I do tend to like peoples company more these days as I have the energy to get out now and my heads still extremely all over the place, fucked up if you like for a better phrase, if I find I’m on my own for too long, I tend to think, over think, and get upset…

I’ve even been driving my brum!! I haven’t driven in over a year and this feels fantastic!! I can’t park yet, unfortunately the moment my arms start to cross over to parallel park and reverse etc I get so much pain from my chest Stef has to swap over and do it but it’ll come in time, it’s still very early day’s. The seat belt is a pain in the ass too as it cant rest on my scar so that’s a fun trick!

Before I go, there are a few links and things I thought I would add, one being from the article that was printed in my local newspaper not long after I returned from Harefield, and the others some sponsorship all in the aid of CF!!

http://www.thisisdevon.co.uk/Donor-helps-Totnes-bride-Kim-breathe/story-16886443-detail/story.html


My brother, Leigh is running a half marathon in less than a fortnights time, for my local CF charity that helps CF Suffers & their families in Devon. EDCF Quality Of Life Fund, they have helped me immensely so I am incredibly grateful to this fantastic charity, unfortunately they haven’t got a Just Giving page, but if you would like to sponsor my brother please send payment to my email address through paypal with your message to kimberleyliane@hotmail.com or if you would like to donate straight to the charity please, please, please click on this link….. http://www.edcf.org.uk/make-a-donation


Also CF mum Lorraine Barnes has been working her ass off putting together a calendar for 2013 called Cfaces, full of inspiration Cystic Fibrosis fighters photo’s on each and every month! This is available to order now and is a beautiful calendar… All proceeds go to charity and my ugly mug features in December…. Please help support CF & order your copy today by clicking on this link … http://www.cysticfibrosisfundraiser.com/

I’ll leave you know with a few piccies of what I have been up too…. Until next time guys, I won’t leave it so long, I promise!

My brother Leigh (who is doing the Marathon for EDCF) & I

Me & Be-Be The Skunk From The Exeter Exotics Team :) 

I walked down with Stefan to visit where my Nan, Poppop's

& Uncle Kevin's ashes were scattered on

the 3 palm tree's by The Cary Arm's in Babbacombe

Me & My Beautiful Freshly Shedded Burmese

Python Thunder, Just Last Night :)

Thank you for reading. xxx

Ups & Downs - My Transplant Journey - Part Three

Monday 20^th August 2012 just after 9pm and I walked up my first set of stairs without using my stair lift. I was home. The first thing I did was rush to each viv and hold my babies, every single one. They had grown so much and I had missed them incredibly, it was fantastic to be back in my living room again. I couldn’t stop smiling. I had a cup of hot sweet milky tea, had I missed that and went to bed, I didn’t sleep well as was still incredibly sore but the fact was I was home, I was in my own bed next to my husband and back with my family. Life was good again….

Thunder & I

I was really nervous the following day how I would cope at home with Stefan at work and on my new regime. Lung transplant after all is not a cure, I still have cystic fibrosis, it still remains in my other organs and my nose and throat (airways) and I have to continue to take all my CF related medications as before plus my new medications to help my new lungs stay as well as possible. I start the day off by taking all my morning medications and nebuliser, and then taking my temperature and weighing myself. At ten in the morning I take my immunosuppressant’s and then carry out 3 lung function tests, I record this all in my blue book (that your hospital will give you post tx). I have to lookout for factors that could show a sign of infection or rejection in my new lungs. These are a temperature above 37C, a weight gain of 4lbs or just under 2kg’s in 48 hours, a 10% drop in my lung function from the reading the previous day, and any signs of infection such as sore throat, cough, head cold & pain. I have to contact Harefield should any of these arise and follow their advice or be admitted depending on the seriousness of my situation.

During the day I keep eating and drinking little and often and carry out what exercise I can to get my lung function up and my muscles moving in my legs and arms etc. Great friends of ours, Darren and his dad Stephen surprised me with a exercise bike on my return home which was an absolute god send and I have been working hard on that daily between 15 - 45 minutes each time to help with my rehabilitation. In the evening it’s time for my usual medications and nebulisers again and then at ten in the evening I take my immunosuppressant’s. There are do’s and don’ts I also have to follow. For the first 3-6 months I have to stay away from crowded areas and keep off public transport because of risk of infection. It’s obviously common sense to keep well away from poorly people at all times no matter what stage I am post transplant as this would be no good for me whatsoever, I can also no longer be a sun worshipper due to the medications i am on making my skin super sensitive to sunlight!!

When it comes to food there are a few things I have to avoid as well. Some which I am not bothered about but others …. Rare meat! A nice pink steak is a no no! Cured meats, salami, Parma ham and such like, bugger! Unpasteurised foods, such as camembert, stilton and feta! Eggs, no runny yolk! Dam you Stefan for getting me to finally love poached and fried runny eggs on toast!! Pate, shellfish, mayo and grapefruit I don’t really give two tosses about but hey ho, my new lungs are here and I’ll be dammed if I do anything to risk them!! It’s a shame but I’m relieved I got as much ink as I did in the past, I did have plans to have a lot more. (pictures of my snake babies tattooed on myself) I still can mind you, but its again a huge risk to my new lungs and right now I certainly wouldn’t do anything to jeopardise that, I’ve also come to term’s that pregnancy is a definite no for me also. I won’t go into details about what my transplant consultant said a few week’s back as it may offend some people (although it was aimed at me entirely so the only person it should have offended was me, just so happens I like his straight talking, ‘to the point’ opinion) Pregnancy is a HUGE risk, and although in the past I would have given my right arm to be a mummy. Having been through what I have and come out the other side I am grateful to be here, breathing and I am grateful for all I have now. I wouldn’t risk it all for a moments madness, I’m sure there will be days I will be low and think things differently but I know that this is what’s meant to be and I am truly thankful.

The immunosuppressant’s are a nastiness all of their own. They play a vital role in my new life for my new puffers yet cause so much problems else where! I am on tacrolimus and mycophenolate (Tacro & MMF)
These medicines help to stop my body from rejecting my new lungs but also increase the risk of infections and cause other side affects.
They have dulled my taste buds completely and many foods, especially savoury, don’t taste like anything to me, a real pain in the ass when your trying to eat as much as you can to put on all the weight you have lost! It also causes me to shake, sometimes you can barely notice it, other times I look like I’m about to have a hypo from my blood sugars, I will have this for life but it should become less obvious overtime, so if you see me and are concerned about my unsteadiness please don’t worry, its completley normal! Tacro has also caused hair loss, it’s actually seemed to stop growing so much on my body (arms and such like) but I am losing a lot from my head, it comes out in massive clumps, some days are better than others but its very embarrassing at times and I do feel incredibly self conscious.

Now finally I don’t know whether this is due to a combination of the medications or whether its just about me being on this journey and things have ‘clicked’ in my head… I used to be incredibly sensitive and would cry at many things, now however I pretty much cry everyday, and it can be anything. I could be happy and cry, just because I am so overwhelmed at being here, or I could hit rock bottom and feel so low I just have to let it all out to feel relief again. I still haven’t had much time to think about what’s happened, to reflect on the last two months and I haven’t spoken to anyone professional about my feelings, this is a route a feel I need to go down especially when it comes to my donor. I have also lost all tolerance of people. I used to be able to walk on eggs shells, not like to fall out with anyone or hurt peoples feelings, not saying I would intentionally do that now but for some reason, if someone upsets me now I get angry and I just cannot be bothered to keep trying with them. Life is far too short to waste on people that cannot be bothered with you. Beforehand, I would apologise even if I wasn’t in the wrong, I couldn’t bare confrontation with people, today I’m more than likely just tell you to do one if you‘ve fucked me over. I feel like I feel things 100% more these days, if I get hurt, I really feel hurt and let down, if I get angry, I’m vexed to the max and can’t calm down for hours, and if I’m happy I can be stupidly ecstatic, it seems everything’s to the extreme and until I figure out what’s going on with me I guess I’ll just have to ride it out…

Back to being home and was I slowly started getting used to my daily routine and enjoying seeing my lung function improve by the day, I was barely sleeping and still very sore but it was all part and parcel of recovery. Stefan and I had made the most of a few hours out when he had finished work in the evenings when we could and it was fantastic - So we made a few plans to be able to enjoy the bank holiday weekend out and about and he had a week off work for shut down that we couldn’t wait for….

In Paignton enjoying a Slush Puppy

Bang, Saturday night, my poorly husband starting throwing up constantly and was in agony…. Our friend Darren took us to our local hospital the following day who sent us straight to Torbay A&E surgical team, with an suspected appendicitis. I couldn’t believe what was happening to us, only a matter of days of me being home from Harefield hospital, four weeks post transplant and I was back in another hospital with the role completely reversed and my husband was being operated on. He was extremely lucky, the appendix was about to burst and they removed it just in time on Bank Holiday Monday. It was one of the hardest weekend of my life, not only to go home on my own every night and leave him on the ward and try and cope with caring for myself only after a few weeks of major surgery, but to see my soul mate and best friend so poorly, and not be able to do anything to help. I never knew how much I took for granted how he must have hurt to see me suffer when I was in pain with all the tubes and unable to breathe. I will never forget it as long as I live, it was an extremely testing 4 days for us…. Thankfully after the operation, he was miles better and soon came home. He had the week off but was unable to drive (as am I still until I get the ok from my transplant team) and in a lot of pain, so we made the most of looking after each other, and walking around the town for exercise and fresh air like a pair of old biddies, everyone who bumped into us thought it was highly amusing!

Stef finally got behind the wheel just before Monday came back around and took us to Dawlish for a few hours, we walked along the riverside and had a snack in a café. It was great and I was so glad things were slowly back on the up…. We decided the following weekend after looking at the weather forecast we would plan a picnic on the Saturday and go to the moors for the day, lots of nice walks up a few hills and stuff myself with lots of nice goodies…. We really should learn never to plan anything Stef and I, it just never goes the way we intend it too.... That Friday evening I was throwing up constantly and in agony with stomach cramps, I threw up my immuneos, (not good!) and went to bed after notifying Harefield. All day Saturday I tried unblocking what I thought was a CF Stomach with Klean Prep and Movicol, I even had the district nurses out for suppositories but the pain was getting worse and everything that went in my mouth came up literally a few minutes later. I had hot and cold sweats and my temperature was rocketing…. I was then admitted to Culm ward at the RD&E on Sunday. Six days I went without food, I was pretty much stuck to the bed on 24 hour infusions of Tacro and fluids, my levels were so low and the MMF had caused my tummy to paralyze and stop working. My CF team were talking to Harefield everyday back and forth about my care and finally things started to improve and I was eventually allowed home on Thursday evening last week. My lung function has since dropped and Harefield weren’t too happy with me yesterday at clinic, but after 6 days of being quite poorly I’m quite surprised they would expect anything more?!

Me in Dawlish

Without all those oxygen tubes & wheelchair!

I am now working my little arse off everyday this week to get my lung function back up so Dr Reed doesn’t want me back to Harefield at the end of this week for a bronch… I know I’m still early stages, I mean I’m not even 8 week’s post just yet!! I know I am going to get little blips, I just can’t bare another hospital trip so soon. I just want a break, a few day’s and some normality with my husband…. It feels like too much to ask!!!



In my next blog I will write all about Harefield's clinic trips and the new friends I have made :) & include my new article that was printed in the local paper last week.... Thank you for reading. xxx

A New Life - My Transplant Journey - Part Two

I had just undergone one of the biggest operations anyone could have, I knew the recovery process would be long & hard and I was prepared for it, after all it was my decision to be listed and hopefully get this second chance. However, no one could ever have prepared me for how difficult some days would be, or tell me the reasons why I would find them so hard.

Agonising pain from my wound & chest drains, making countless holes in me for daily attempts at bloods and blood gasses, being sent down for bronch after bronch, sent to sleep and feeling sick as hell when I finally wake up and out for the count the rest of the day, throwing up constantly and not keeping anything down, not sleeping a wink in almost a month and having the worst hallucinations I ever could imagine - I can handle that… I was born with CF and anything that you have to go through is pretty much standard, you just get on with it, I’ve had it for 29 years and know no different…. But to be over 180 miles away from my husband, and not be able to see him or hold his hand for 5-6 days absolutely killed me, I was barriered in my room for the first fortnight as I had a bug that I caught from ICU which meant I couldn’t go out of my room and nurses etc had to wear gloves and gowns when they entered. Unless my husband was there at weekends, I was completely on my own just me, and the sodding daytime TV.

The transplant team from the outset encourage you to have a family member / relative with you during your recovery 24/7. They are meant to be involved with all aspects of your care, know what medication you are taking, help you with rehabilitation, and learn the signs of rejection and infection. What they don’t tell you is that it will cost a fortune for them to be able to stay with you. Harefield is lucky enough to have Parkwood, a small building on the premises of accommodation for relatives of patients staying in the hospital. Unfortunately, unless you are on job seekers allowance it will cost you £40 a night for a single room (more for a double) this doesn’t include breakfast or anything is it just for a bed for the night. There are some B&B’s in the small village of Harefield and Uxbridge which you can book to but as they are slightly cheaper they are very busy and you must book in advance to be able to get a room. Your still looking to pay £30 a night.

Now Stefan’s work was amazingly supportive, but he only gets limited holiday time and once that was used up, an employer can only do what they can do and that’s of course offer you unpaid time off. For us this just wasn’t an option as we get no help with housing or council tax, we pay full rent and all our bills we have very little money to put back and or spend on ourselves. As the bills still needed paying whilst I was in Harefield, Stefan bless him had no choice but to carry on working, despite how desperate I wanted him to be with me. He was with me the entire time I was in ITU until I was moved to the transplant ward, and then things had to change, he would have to return to work, and then visit me during the weekend’s. He would work all day, go home and sort out the snake babies and try and get some sleep. Virtually impossible for us both when all we wanted to do was be together, I cried every time he rang me, I cant begin to tell you how much it broke my heart. After work on a Friday he would drive all the way up to London, the worst time ever knowing that’s when people are trying to get home… 3.30pm on the road and finally arriving to me at 8.15pm at night, shattered and starving. We’d have the weekend together all though he’d have to leave me around 10pm to get some sleep in Parkwood or one of the B&B’s and then Sunday lunchtime he’s be back on the road for Devon again. He was utterly drained and I knew he wasn’t looking after himself properly. Yet he made sure he was by my side when he could. Of course it wasn’t just the overnight prices, Stefan had to eat & drink, plus the fuel back and forth all the time. We spent around £700 in total during my time in Harefield (a lot less than some fellow tx’ers I have spoken to since) and it has absolutely crippled us financially.

If there is any advice I could give to someone waiting on the list for a transplant, it’s to make sure you start saving if you are in the same position like Stefan & I and to also make sure you have the support of a family member by your side. Recovering from a transplant is one of the biggest things you will ever have to go through, having as much support as possible is vital. I’ll be honest, and hold my hands up, there were times I was seriously thinking about curling up in a ball and just giving up, being alone 70% of the time was just unbearable… I can’t begin to explain to you how I felt, but hearing Stef’s voice on the phone telling me how proud he was of me and wanting to get back to my home and see my babies just spurred me on all the more and I wasn‘t going to let my depression win. The only thing I am shitting myself about now is having infection or rejection and having to stay back there as we will be in the same position all over again, and I know it will happen, it’s a given… It’s just a matter of time as to when.

Now back to my recovery, as said before for the first few weeks I was isolated in my side room because of an infection I had caught. Because of this I wasn’t able to start walking up and down the corridors with the physio or try the stairs until the antibiotics had done the trick and I was no longer infected, this took a lot longer than I hoped for so in the meantime my physio brought in an exercise bike for me to try a few times a day to help get my legs working again and increase my lung capacity. I started hoping on a few times a day for 5 - 10 minutes slowly increasing it as it became easier for me. I couldn’t believe I was on an exercise bike pedalling away, jesus christ did my calves hurt the following day, but what an achievement so soon after undergoing a huge operation!!

Kicking Ass On The Bike!

One of my chest drains managed to dislodge itself soon after I was moved to the transplant ward, leaving me only with one which was removed a week or so later. I had bronch after bronch during my stay, (where they send you to sleep and put a camera down your throat into your lungs) to remove all the gunky stuff from my lungs, give them a good wash and make sure everything was healing ok, unfortunately from where the chest drain had dislodged itself beforehand it had left lot of fluid collected in my left lung and during a bronch they put in another, my most painful yet as it was pretty much round my back so found lying down extremely difficult. It certainly was necessary though as collected a hell of a lot of fluid in the first 48 hours - they removed it after 5 days and I was finally drain free.

The Worst Chest Drain - So Painful!

After Having My Neck Line Out

Part Of My Clam Incision Scar

Another thing I found incredibly hard was eating and drinking. All the medications I was on were making me incredibly sick, hospital food is disgusting at the best of times but I couldn’t even keep down ‘normal’ food. I was on four anti sickness medications but they were doing jack shit and my weight was plummeting. Funny thing was, I had a discharge meeting from one of my nurses and a clinic appointment made for the end of the week after being told I was proberly going to be discharged the following day, I was concerned as I knew I wasn’t eating but thought maybe things would change as soon as I got home and became all excited at the prospect of being discharged…. The next morning I was seen by my consultant and was told in no circumstance was I being let home. My levels were all over the place and I’d gone from 55kg to 46kg in just 4 days…. I was devastated.
It was only Tuesday and I wasn’t seeing my husband until Friday night, that was even worse. The sickness continued for what seemed like an eternity, I’d eat a little, take my meds, and like clockwork, throw up about ten minutes later. It was a never ending circle. It was only when they started decreasing medication doses that I started to keep things down for longer, maybe go a day without throwing up at all….

Fed Up

Nights were even worse, I’d still have little panic attacks about my breathing at night, I couldn’t lie flat, yet I couldn’t get comfortable because of my scars. I’m used to lying on my sides at home, but this was impossible, I still had dressings which were being changed daily as the wounds were oozing, and still very painful. I was on sleeping medication but it just didn’t work. The pressure points in my back would hurt so much it felt like I needed a ten hour massage to get the bumps out of me. The sensation of my skin would burn like hell too, you know what you get that feeling someone is talking about you and your ear burns red hot? I had that all over my body, especially parts of my body sunk right into the mattress. I would lie there awake every hour, seeing bright firework type images all over the room. My head was a mess and I just wanted to feel normal again, I’m not religious but I prayed for it all to be over.

Wishing I Was Home

The days passed, some seemed to drag and some seemed to go quite quickly. It was a huge relief when I was finally allowed out of my room and could walk up and down the corridor for exercise, I’d try and do this as often as possible, if not purely for some ‘fresh’ air from my stale side room.
One day the sun was shining and a staff member took me outside and sat on the bench with me for twenty minutes. I’ll never forget that moment as long as I live, I was a little unsteady on my feet, but as soon as I got out into that sun, that fresh air, I breathed in. I was still on oxygen then but it didn’t matter, that fact I could breathe in deeply was just incredible. I knew there was a reason I was doing all this, and for those twenty minutes I felt amazing. I didn’t want to go back to my room but I couldn’t stay out there alone, another reason why its great to have a family member with you!!!

Five Minutes Of Sunshine

Breathing In Deeply The Amazing Fresh Air

From then on my recovery got better and better, I tackled the stairs with my physio, and would walk lots more down the corridor. I felt a lot better than before, I was eating again, not huge amounts but enough and I finally felt like I would be able to cope at home, it was Friday so I begged them to let me go…. I was told I could for weekend leave and come back on the Monday… I wasn’t impressed but it was better then nothing so rang Stef straight away to tell him the news, only for five minutes later to be plummeted into devastation again. The nurse came back in the room to tell me that the Dr didn’t realise how far away my ’home’ was and they wouldn’t allow me back as it was too much risk. Ahhhh I was sooooo angry!!!!!
So another weekend where Stef had to travel down and we had to shell out more money for him to be with me. I was getting really fed up now, even though I knew my recovery time was absolutely incredible compared to some people, but when your stuck there in that situation, so desperate to get home, being told you can then having it taken away from you again within minutes, there is no words - my head was a complete fuck up.

I was moved that day upstairs to Fir Tree, a lot quieter than downstairs and had my own ensuite which is defiantly a plus. The room and ward itself just felt nicer and I felt a lot more at ease. That happened to be my last weekend in Harefield, as I had to stay I was told I was allowed out and about and off the ward… As soon as Stefan arrived that night I made the most of it. We went down the road for a drink (I could taste it and then proceeded to spill it all over myself, what a waste of a Crabbies) and the following day he drove into Uxbridge and I ate my first meal that tasted ‘normal and amazing’ at Prezzo. It was incredibly hot that day and I am not supposed to stay out in the sun because of the medications I am on, so when I could, I would stop in the shade every now and then. I seemed to walk for hours in the shopping centre and was sooo proud of myself at what I had achieved that day. As the weekend consultants called in on me during the two days, there was promised talks of homeward bound on Monday, so I worked my ass off to prove to them that I would be able to cope and I was determined to get that discharge summary….

Eating Yummy Bruschetta At Prezzo

& It Stayed Down!!!

Rocking Stiffys Hat In My Room On FirTree Ward

My Amazing Man

Thank you for reading, part three to follow.

xxx