On a rollercoaster & I want to get off!!!

The last few day’s have been a complete rollercoaster ride.
I feel like a yo-yo, feeling up one minute, smiling and living life the best way I know how, then out of the blue, bam, completely depressed the next, balling my eyes out or punching a pillow.

As you will know I had the decision from Harefield on Thursday with regards to being put on the transplant list. I said at the time I wasn’t shocked or disappointed, but I can tell you now that was a little far from the truth. Because I kept thinking about the positive side, enjoying Christmas without the stress of waiting for a call, it overwhelmed the fact that I’ve not yet been listed and still have to try out another treatment before this is certain.

The fact that I’ve been struggling quite badly the last few day’s hasn’t helped. My chest is really crap, I sound so squeaky, you could hear me from a mile off and my breathing is so shallow, it’s extremely hard to take a deep breath in. I’ve been coughing so hard again that I am sick, worst thing ever when you have just eaten your dinner, and bloody embarrassing if your in public. I just feel rotten and still haven’t seen my CF team in Exeter.

I have, however, heard from physiotherapist. She and a female fitness instructor are coming to my house on Thursday to start an exercise programme with me so I can build up strength back into my muscles and keep as fit as possible if a transplant takes place. I can’t say I’m entirely enthralled by this meeting, I mean, I can’t even walk a few sodding stairs, so hope their not expecting me to start star jumping and sit ups in my living room!!

I’ve had two lovely evenings with my husband which has been really good, he worked 8 nights straight since our return from Middlesex and we hadn’t had the opportunity to talk about things that were on our minds.
We went to the cinema on Friday morning to see Breaking Dawn (Yes, again for me!!) and then chilled out at home, I tried to nap as was feeling particularly unwell. But it was lovely to have him home, cuddle up and laugh about things. We had lots of playtime with our babies who wanted to pose for a few Christmas pics!!

* The babies prepared for Christmas *

On Thursday evening a few things happened which woke me up…
Writing my blog, has given me the chance to pour my heart out, an excellent stress reliever rather than bottling things up and harming myself in other ways. All I really wanted from writing was to make people more aware about Cystic Fibrosis, how it can affect your life and the importance of organ donation and being listed as a donor.
I have been overwhelmed with the support and amount of people reading it, I couldn’t be happier and I am so grateful, so thank you to all of you…

A sad realisation I also discovered was just how much I try with some people and I might as well be trying to befriend a pencil.
I have tried really hard with some people for many years, and also some more recently, but on Thursday, it felt like I had been slapped in the face and I knew then that I really should just give up.

I’m a very sensitive person, I worry to much, I care about people and hate to see them hurt, I will also keep trying, no matter how much they hurt me. Stefan knows this only too well and it drive’s him mad. But life’s too short, it’s taken me a while, but if people can’t give you their time, then why should I give them the very precious amount of time I have left…

For all its faults, facebook has a great way of bringing people together. Without ever meeting them face to face you build such a lovely friendship with some people and I really must say they’ve given me a hell of a lot more support than some people who have been in my life in previous years.
Angie Bruns, Sarah Pym, Joanna Moore & Kerry Thorpe to name but a few. I am truly grateful for having had the chance to befriend people like this in the last few months. Another thing to be positive about!!

The next few days I hope will be better, I need to keep my head up and try and enjoy life like I usually do.
I have an exciting diabetes retinal appointment on Monday morning & my fitness meeting planned, and will try and get to see my consultant to talk about Harefield and start the new medication.

Before I go, I want to say that I’m thinking about my fellow Cfer friend Kerry, who is going through a particularly devastating time at the moment, I hope what I’ve sent brings a smile to that beautiful face again.

I also want to ask you if you could all tune into BBC3 on Monday 28^th November at 9pm for ‘Love On The Transplant List'. A documentary about my friend Kirstie Tancock who had her transplant in July this year after a horrendous fight for her life. (Be warned; I’d keep a box of tissues on your lap) xxx

Harefield, the decision…

Ok well I’ve just heard from Harefield and we now have a plan in place.

As mentioned in my previous blog when I had the assessment, Dr Carby thought there was a fungal medication I could trial that might prolong my wait to go on the active list.

The decision has been made today to trial this medication for the next six week’s. I am to go back to Harefield in January, and if the treatment has not improved my condition in anyway, then I will be listed on the transplant active list straight away.

Of course if it helps my lungs, then its just a few more months or so of me feeling better than I have been in the last year which is always a bonus and I will be constantly reviewed by the Harefield team.

The nurse however did tell me that one of my test results came back and there maybe a problem with my kidneys. I have to see a renal specialist as soon as possible which my Exeter team are meant to be arranging, and if there is a problem, this will need to be rectified before I can be listed for transplant.

To be totally honest with you all, I already had this plan in my head so it has come as no surprise or disappointment to me, (other than the kidney issue) I know that if this treatment doesn’t work they will have no problem in listing me when I see them again in January.

On the plus side, I can now try and put things aside for a while and try and make the most of this Christmas and enjoy it with my husband, family and friends.

I know if I had have been listed in the next few days, I proberly would have been walking on eggs shells for the whole month of December!!!
(Not that there would have been a call that soon, but you never know!)

I will of course keep you posted on the new medication trial and when I’m seen by the renal specialist.

Hope you all have a lovely weekend…

Angry At The World…

After such a positive and happy blog on Saturday morning I took a spectacular nose dive straight into the pit of gloom and have been wading about in it for the last few days.

Everything seems to be upsetting me and today in particular I felt at my lowest. I can’t pinpoint one exact thing, I think its an accumulation of everything.


I haven’t been sleeping well at all, even with taking my sleeping tablets I’m wide awake at the most ridiculous hour. If I try to sleep, I lay in bed tossing and turning so think it’s better to go downstairs and watch TV to try and make myself nod off.

When I do eventually drift off, I’m either woken up by a noise outside or by the frightening nightmares I’ve recently started to have which are concerning me. I think I may have to bring these up with my hospital team at clinic.

My chest has also gone down hill once again. On Monday morning my good friend Vicci took me out for a few hours to get festive at our local Garden Centre, but I struggled with my breathing and coughing and felt my lungs were drowning in crap. By late afternoon, I had to call my cf nurse to ask for more oral antibiotics as we both agreed being put back on iv’s again after only a few days break would proberly not benefit me straight away.

I was completely drained by the evening but still couldn’t sleep. I would say I most definitely got up on the wrong side of bed this morning.
I feel shattered which obviously doesn’t help and my lungs are so sore, my moods swings have been horrendous!

I still have a couple of days to wait for a decision for Harefield, so that is constantly whirling around in my head and stressing me out, also my poor husband has been working his arse off and is extremely tired so we haven‘t had much ‘quality time‘ together in the last week.

I feel like crying, (which I have done a few times) screaming and punching something all at the same time. I’m really upset and angry, just completely hating the world and everything in it.

It’s not me, and I hate feeling like this, I’ve even made sure I’ve not had a drink as wouldn’t want to feel any worse than I already do!!

I’m sure that in a few days, I’ll eventually climb back out and be my positive smiley self again, I really don’t want to stay down here it’s not a nice place to be!!!

Before I go, I just want to say that I'll be thinking of my lovely friend Kerry Thorpe, who is going for her first stage transplant assessment tommorrow in Harefield. Best of luck sweetheart... 

Sorry for my rant everyone…… xxx

A Natural Smile

For the last few days since returning from Harefield, I have not been myself.
When asked how I am, I reply that I’m fine, say that I’ve been trying to push things aside, when this isn’t the case at all.

I haven’t been able to push things aside, it’s been constantly running through my thoughts all day and all night. I’ve felt like I’ve been on autopilot, powering through, getting from one hour to the next, juggling conversations and forcing smiles. That was until last night…

Breaking Dawn Part One (Twilight Saga) was released into cinemas and my sister Lauren had booked us tickets for a showing as a treat after my tx assessment.

My husband Stefan, was on a night shift from ten, so Lauren offered to make the most of the night and make me dinner, one of my favourite dishes Macaroni Cheese, then drive us both to see the film in Paignton at 8pm.
I was very excited, but also worried about how much I would enjoy the evening with the general lack of energy I had grown so accustom to of late.

I knew I had plans, so Stefan and I carried out the advice that was given to us in Harefield at the beginning of the week. Instead of having a shower in the morning the day of my outing I would have it the night before.

It might sound weird to you but showers are something I have grown to fear, I always have my husband there to help, but they are so much work for me these days that if I were to have it in the morning, just before I’m due to go out, I would use up all my energy, it would physically drain me and then whatever I had planned would feel like a chore, I wouldn’t enjoy it, I’d struggle so much I would just want to turn around and come home again.

Karen, the lung and palliative care specialist nurse at Harefield, told Stef and I from now on when I have things planned, to have my shower the night before, therefore when he goes to work, I’m clean, absolutely exhausted, but all I’m going to do is rest so can build up my energy again for the day ahead.

Of course I strip washed the next day before getting dressed (I’m not a complete cavewoman) but I had a hell of a lot more energy than I would have done if I jumped in the shower like ‘normal’ people do.

We had to pop to the shops in the afternoon but it was only brief and I was back rested before Stef took me round to my sisters in the evening.

I ate all my dinner (my appetite is slowly increasing again) and we left quite early to ensure we’d get a space. Anyone that knows the cinema local to us will know how hard it is to get a disabled space, especially on a busy night… It seemed to be my night, as just as we turned in, someone reversed out and we managed to get a space a few metres from the entrance so I didn’t have far to walk. (Huge sigh of relief)

The film itself was amazing, proberly not everyone’s cup of tea but I’m a big fan, (my husband was gutted that he was working but I’ve promised him we can go next week on his day off) so I’m afraid I can’t spill the beans if you’ve not yet seen it!!!

Lauren had me back home by twenty past ten and as I walked into my living room, my wonderful husband had put up the Christmas decorations as a surprise for me when I got back.

Christmas tree? Already? I hear people saying… But I’m a kid at heart and it’s my favourite time of the year, I was already smiling after the nice evening out I had with my sister but this just topped my night off completely. I know it sounds cheesy, but what the hell is it about a tree that gets you all warm and fuzzy inside? I was grinning from ear to ear and it didn’t feel forced!!

I even had energy to put up some baubles that Stefan had left me to decorate…

* Our Crimbo Tree *

I started watching Children In Need, and as usual got very teary and emotional, but instead of thinking about the ‘what if’s’ and ‘could be’s’ in my life, I started thinking about how lucky I was…

To have a sister who wanted to take me out and treat me, take my mind off things for a few hours and just ‘enjoy life’ - And, how extremely lucky I was to have the most amazing husband, someone who cares for me so much, that even in mid November would put up a Christmas Tree just because he knew it would make me smile and feel happy again.

I was smiling a big smile, buzzing even, and it wasn’t forced and it actually kicked the recent thoughts up the arse and to the back of my mind, even just for a little bit…

Today I’m back to square one with zero energy, so intend to do nothing but curl up under a duvet and rest, but it was sure worth it!!
And, whatever the decision maybe next week, I know that over the next few week’s, I will appreciate the little things in life that make me smile…

Transplant Assessment - What is my best possible outcome????

I’m back home after my transplant assessment at Harefield, and I must say, it was the most draining couple of days I’ve proberly experienced for a very long time, if not ever, both physically and emotionally.

The drive was long and poor Stefan was shattered from working the night before, I took over not long after passing Cullompton and actually ended up parking at Harefield in the pitch black four hours later.

We got the key for Parkwood (relatives / visitors accommodation) and ventured out to get something to eat which ended up being a kebab back in the room!! I watched a bit of telly but then wanted to get my head down as I knew I had to be reported to admissions before 9 the next morning. It was a restless and uncomfortable sleep but wasn’t long before we were up, signing forms and having my wrist bands put on.

I was in my room by 9am, on F East ward. The room itself was huge, about two/three times the size of our rooms back on Culm ward in Exeter, already equipped with fridge, phone and tv.

The staff were lovely, I just couldn’t fault them, I had Anne on the first day and Jo on the second and they were both brilliant.
I started my tests and investigations straight away; the usual simple things like height, weight, blood pressure, sputum samples and bacterial swabs were easy, I had to have a 24 tape on record which measured the activity of my heart and also have a 24 hour urine collection.

Then came the ECG, CT Scan, bone DEXA scan, X rays etc, all of which I have had many times before. I think the most unpleasant part for me was the arterial blood gas test, lung function test and exercise test which were the most hard work and painful so was quickly relieved when they were over and done with. My BMI (body mass index) was 19.5 which I was really pleased with as the cut off to be able to have a transplant is 18 as your body needs the strength and reserves to help you get through the recovery process.

I had many talks with members of the team over the first day but it was the second that was most important to me…

Once the team have collected all the information about you, your tests results and up to date quality of life, they put it altogether and put your case to the board during a very important meeting on a Thursday for a decision about whether you are listed for transplant.

Unfortunately, (and very typically for me) they aren’t meeting at all this week, so I won’t be discussed until the following Thursday.

However we had a meeting with Dr Carby (my transplant doctor) he didn’t have all of the results back but from what he could see, although my lung function was bad and exercise tests even worse, the oxygen in my blood, (SATS) were relatively normal and quite good for someone with CF. (This was something I did talk to Stefan about, I was concerned as I’m not on oxygen 24 hourly and thought this would be an issue)

He explained that there was a medication he could try me on to take along with my steroids that might help with my wheeze and breathlessness, and prolong me from being put on the active list straight away. Stefan quickly asked if I would still be discussed next week and he replied that I would be, he told me not to get anxious as this was not meaning I wouldn’t be put on the list, but might buy me some time in the long run.

After he left the room I broke down into tears, I was gob smacked and so angry, had I come all this way and gone through all this for nothing???
If I’m not put on the list have I got to live like this until I die?
Not able to walk stair’s and even dress myself? So scared of getting up and walking into the kitchen to get a drink because I know I’ll then be unable to breath, have a huge coughing fit and properly throw up into the sink?
I didn’t want to live like this anymore and the fact he thought an extra tablet would make this all go away devastated me.

I tired to pull myself together when Brian walked through the door, it was time for my meeting with him and he could see I was upset and asked what had been said, so through tears and blubbering I explained what Dr Carby had told me and also the fact I had built myself up for what I thought ‘was the time’ to be told that it might not be, not just yet really upset me.

Brian then explained that this was not all done for nothing, Dr Carby is looking out for what is best for me. In his words, the clock starts ticking on my life the minute I get my transplant, and if I can squeeze any amount of time no matter how little out of the lungs I have now then this could only be a good thing.

The team want me alive and kicking for as long as possible, and although my life is so restricted at doing things at the moment, at least I am still trying to live as normal as possible. He said I NEED a transplant, that’s the whole reason why I was there and I won’t have to go through any more of the tests and investigations that I had just done.

My assessment was completed, but now its just deciding when the time is right for me to be active on the list. I signed all the paper work and we then went through all the procedures of getting a call, having the operation and the recovering process. So much information to take in and what to expect. It's all very scary but in the long run, it's what i want to eventually happen.

They may very well list me next week, but if they don’t and want to try this medication Dr Carby suggested, they said they would trial it to January and see how I was doing then, if no better at all then they would list me.
It could be that the new medication exceeds my expectations and does me well for another six months to a year!! But then as my body does with all treatments, it will exhaust it and then I will deteriorate again, which means I will be then listed on the active list.

Brian said I will not be put on the backburner, I will be regularly seen by Harefield now even if I’m not listed straight away, he told me to think of it like I was in a small little holding group waiting to be put on the active list…

So it will happen, I’m just waiting for my time. I’m still a complete mixed back of emotions right now and will be a jibbering wreck until I get the phone call at the end of next week with a decision, even though I think I already know it in my head.

If it’s not the right time, I can’t dwell, I need to look positively and think it’s a bit more time with my own lungs as shitty as they are, I have to live my life like there is no tomorrow.

At least I didn’t get the bad news that I could not ever be listed, because I am too poorly or because of a problem with my body accepting a new organ.
It’s not good news yet its not bad news, I just need to look on the bright side and think my time will come…

It’s just a waiting game. One day I will go back to work, one day I will be able to climb the stairs, one day I will run up town and actually beat Stefan to our front door... (We can but dream) x




　
　

Realisation & counting down the days…

I’m surprised I’m up writing this blog after the last few day’s. Exhausted really isn’t the word!!

IV’s are plodding along, they have helped with my breathlessness a bit but I am still struggling and not usually as well as I have been when on Mereopenom. I went to RD&E today and was unable to perform lung function again, I know for a fact I will have to do it next week so just hope it improves slightly beforehand.

Stefan & I had our nephew Jack to stay for the night on Monday. He’s almost seven months old and absolutely gorgeous. Although he was teething, he was as good as gold, but the cheeky monkey was fighting his sleep and wanted to stay up as late as he possibly could!!

As you would have read in my previous blog about wanting to be a mummy, this is still very much the case and proberly always will be, but it certainly did dawn on me just how much work babies are. It’s incredibly demanding and I admire any parent, let alone parents who have cystic fibrosis themselves…

I know, especially at this present time, it is far too much work trying to take care of myself, with all the medications, treatments, trying to eat when I just feel I can’t and sleep, (oh my god do I need sleep) before even trying to bring a baby into this world!!
A sad realisation, but a good one for me also, as I know I have to put my health first.

Five days to go and Stefan and I will be travelling up to Harefield hospital, ready for my transplant assessment to start on the Monday morning.
I can’t quite believe how quick the appointment has come around and I am really nervous. Not so much about the tests, but the reality of what will be said, the decision made and eventually the outcome…

As Stefan will be by my side, we have had to book hospital accommodation in advance. Obviously I will have a hospital bed and meals provided (cue ‘miss fuss ass’) but Stefan will need a place to stay and food in his belly… Thus, with the price of fuel for the drive up and back, we knew it would be costly. This worried me more than the prospect of the tests I will be undergoing!!

Everyone has money troubles and we haven’t had the flushest few months, but thankfully, EDCF. East Devon CF Quality of Life Fund answered our prayers and very kindly donated money towards the cost of the accommodation stay and some fuel money. I was speechless when we received the letter and am truly grateful for all the help and support they have provided me. Please have a browse at their website; www.edcf.org.uk and ‘like’ their page on face book ; http://www.facebook.com/pages/East-Devon-Cystic-Fibrosis-Quality-of-Life-Fund/145093572204980

Until Sunday creeps up on me I am going to try and rest as much as possible, spend time with my scale babies (who I’m going to miss like mad) and get my appetite back up so it’s one less thing to discuss next week.
I will of course keep people updated when I know more myself, until then, hope you all have a good week and stay warm xxx

P.s. I would just like to say a massive congratulations and best of luck in your new home to my sister Lauren & her boyfriend Pete, who moved into their very own crib last week Well Done Guys xxx

Losing people we love…

As you will know from my previous blog, Stefan & I attended Steve’s funeral on Wednesday. It was a lovely service & was so good to see my auntie Debi & cousins despite the sad & difficult circumstances.
It makes me upset and angry to think that we usually don’t see all our family unless a tragedy occurs. It got me thinking just how many times I’ve had to say prayers & premature goodbyes over the last few years to some of the most important people in my life…

I touched upon my uncle’s death in my last blog. Kevin, my mum’s youngest brother was suddenly taken away from us on 6^th February 1998. I remember the phone call as if it was yesterday, a car valeting chemical he had been using that day during work had caused an asthma attack, it lead to his lung collapsing & he passed away. I wasn’t allowed to see him, I was still quite young & my mum explained that it was a horrendous way to pass.
He was my favourite uncle, always making me laugh, he had a huge moustache that would tickle my face when he cuddled me. We used to play fight a lot & he would always wind my mum up which I found hilarious.
He was definitely the joker of the family.
He left my auntie Debi, who was pregnant with his son Ross at the time, & daughter’s Roxanne & Karly.
My Nan & Pop’s were completely torn apart at the loss of their son, it broke my heart that I couldn’t do anything to console them. Robbie Williams ’Angels’ was played at his funeral & to this day I always think about him.

My Uncle Kevin

I have twelve tattoo’s to date and three of them are memorial.
On my back below my neck, I have swirls & stars surrounding the letter K. Not for my own name, but for my little Kayleigh.
Kay had cystic fibrosis and we practically grew up together when hospital policy wasn’t like it is now with regards to cross infection.
These days, we are kept isolated, from clinic appointments to admissions on the ward. We have our own rooms to stop catching infections from other cystic suffer’s.
But back in the day when we both ruled Louisa Cary in Torbay Hospital we were on an open ward, usually just one or two beds down from one another if not right next door.
We were trouble!! She was like my little sister, we stayed up all night and entertained the nurses, compared scars & kicked ass in the school room on our favourite computer game (purely educational of course)

I was a fair few years older than Kayleigh, but we were both eventually moved to Culm ward at Exeter, where I am still seen at now.
Under the new rules of isolation, we found it extremely hard as we had been best friends, and suddenly it was against the rules to socialise.
We always munched on our favourite snacks and watched films and now we were being told we couldn’t do it?

I always knew Kayleigh was a lot poorlier than me. As I hit my late teens to early twenties & got into drinking & going out, Kayleigh was usually in hospital. It really pissed me off I couldn’t see her. We’d talk, on the phone usually and when we were both admitted we’d speak through the glass of the doors to our rooms, sounds ridiculous, but we didn’t want to get into trouble and yet couldn't ignore one another.

It was a Saturday morning, I had been admitted a few days earlier because I had a blocked bowl & Kayleigh I knew had been in for quite a while on the ward down from me.
I begged to be discharged. As I was older I hated staying in, kept thinking of all the good nights I was missing out on.. I thankfully got the go ahead and started packing my bag when my cf nurse came in, closed the door and sat on my bed.
I could tell by her face she was going to tell me something I didn’t like. She explained Kay had taken a turn for the worse, that her mum & family were by her bedside and that she wouldn’t be pulling through, that it was only a matter of days, if not hours.. My insides felt like they had been ripped out, I screamed asking if there wasn’t something they could do, but she just said they had done all they could. I was told to go home, try not to think about it (as if that would happen, that’s all you can think about?) and that she’d call me soon as anything had happened.
I cried, constantly, all the way home, crawled up the stairs, under the duvet and that’s where I stayed, crying, couldn‘t eat and couldn‘t sleep…
My phone rang, Sunday afternoon, about two thirty, it was my CF nurse. My little star had passed away, only an hour after I had left the hospital the previous day.
It was Saturday October 4^th 2003, Kayleigh was only 17. My best friend, we told each other everything, we knew exactly what the other was going through & she had gone, I just didn’t want to be alive, I felt guilty that I was still here and she wasn’t. The next few days were hell. I don’t know how, but newspapers had got hold of the fact we were such good friends and hadn’t been isolated in our early years. They started asking questions, digging for information and asking me if I thought it was the fact because we had been close beforehand, it had been me who had given her the infection that she just couldn’t fight. I was devastated, I didn’t know what to say, and for a long time I blamed myself.

She was an angel, my little star. I’m still really good friend’s with her sister’s to this day, and we often talk. I know it must be so painful for them and I wouldn’t want to wish them to have to go through anything like it again.

My little Kayleigh

My other tattoo’s are for my Nan & Pop’s. The two people in my life that I had all the time in the world for, that I loved so much I could burst. They were the best grandparents anyone could wish for and it breaks my heart to know they never met Stefan.
All they wanted was for me to find happiness, especially my Poppops (I could never say his name properly when I was little and it just stuck!) I often tell Stef that I wish they were here, they would have loved him to bits, and him them.

My Nan, suffered a brain haemorrhage and then two strokes in the years leading up to her death. My Pops became her carer after she had eighteen months in a specialist care home. Although he was unwell himself, he would do everything for her. I would call & he would be cooking her dinner or running her bath, he loved her with all his heart and I admired his strength, I knew it must have been hard work and I was concerned that he wasn’t looking after himself properly. I would often go over to visit as much as I could.

I was in complete shock when my mum called me, it was March 29^th, 2008. My Nan had got up that morning on her own and made a cup of tea and brought it into my Pops who was in the living room curled up in a ball. He often slept like this so to my Nan it wasn’t alarming, but a few hours later she phoned a friend, and said that he hadn’t woken to drink his tea.

My beloved Pop’s had passed through the night, after having a heart attack. My world had been ripped apart, he was everything to me. I couldn’t imagine never hearing him say ‘come on Kimmy, keep it up girl’ and although it sounds bad, I wasn’t expecting him to go before my Nan, what with all she had been through in the last few years. I was going through a bad time personally when he passed and to loose someone that made such an impact in your life was even worse, I really don’t know how I got through it.
My sister & I made the decision to see him before the funeral, it’s the first time I had ever done it, and I’m not sure I would ever do it again.. I’m just so glad she was there, we broke down completely, and it was a day neither of us will ever forget.

My Nan lived in a care home after Pop’s passing. My mum and I would usually take it in turns visiting her weekly, bringing crossword books, kitkats and a little bottle of brandy as a treat. She’d make me laugh, with stories of the staff and other patients.
After all she had been through, I cursed the day we found out she was diagnosed with pancreatic cancer in September 08, from then on, I saw my wonderful Nan become a shadow of her former self, missing my Pop‘s more and more each day I just wanted her to stop suffering.

I became really poorly myself in December 08, and after time in intensive care I was recovering back on Culm (a total of four months in hospital) when my Nan had been taken into Torbay, she wasn’t given long to live and I knew too well the expressions and tones of peoples voices when they have such news to tell. My consultant allowed me to visit, I was driven by ambulance on oxygen to say my final goodbyes, the nurses told me before I went to her bedside that she wouldn’t recognise me, so as I held her hand and fought back the tears, I told her I loved her. ‘ I love you Kimmy, with all my heart, I love you lot’s’ was her reply, I was so happy she knew it was me, I hugged her and then they wheeled me away, back to Exeter, no matter who came into my room, I just couldn’t be consoled.

Nan passed a few days after my visit, January 29^th 2009. I was heartbroken, but knew she was with my Pop’s and Kevin again and was no longer suffering, I attended the funeral in my wheelchair, I had written a reading which my mum read out as I was too unwell, the day completely took it out of me, but I was thankful that she was no longer in pain. I miss them everyday it hurt's.

The best grandparents in the world, my Nan & Poppops.

I look back over the years and the pain and heartache our family has had to go through, and I don’t want to put anyone through that again for a very long time.
I know my time will eventually come, and I will join my Pops, my Nan, Cheeky Uncle Kevin & my little star Kayleigh again, but there is no way in hell I’m ready to go yet.
I’ve found my happiness with Stefan, my Pop’s would be so proud, and I intend to make the most of it for as long as I possibly can.

Baby substitutes… My beautiful family...

Sleepless nights, smelly nappies, temper tantrums & never a minute to yourself …. Yes, I’ve always wanted to be a mummy.
Those of you that are close to me will know how much I’ve wanted it for so long & been struggling to cope with the reality that it will not happen.
Not the natural way anyway…

A lot of my friends have children, & many people I know are either giving birth or are becoming pregnant at the moment.

It kills me to log onto facebook and see ‘my baby progress’ posts & such like, I feel so bad for feeling the way I do at times, I hate myself - I’m so happy for people when they start making little families & bringing little mini me’s into this world, but cannot shift a slight twinge of 'I wish that was me'.
It devastates me when I see children not being looked after properly or news items on abandonment & cruelty.

I guess if I became pregnant, there isn’t much my cf team could do, but I know not only will I be risking my unborn babies life, I’m putting mine very much at risk. I was told not to even think about pregnancy, my lung function should be at least 50% before I consider concieving , mine is half that, and the truth of the matter is, if I was stupid enough to risk it, I doubt very much I would be here to bring up my baby, if he/she survived themselves…

I did also ask about this during my transplant assessment, but still, if I were to go on the list, have the life saving operation & all be a success, I would still be heavily advised against it, due to antibodies in my blood that could force organ rejection.

It’s heartbreaking to think I can’t give Stefan a child, he would make the most amazing daddy. He is so good with children & adores his nephew Jack (who was born in April this year) to bits. We’ve talked a lot about the issue, but he says now he is dead against the idea of trying, and would never want to risk my life. He says he doesn’t want children, but deep down I know if things were different, and I was ’normal’ (as normal can be these days!) we would be going down the same road as my friends right now & making our own little family of Kneils.

In December 2010, Stefan gave me the best surprise I could ever have wished for. My first snake, an amel baby corn snake, which I named So’Co, after our favourite drink Southern Comfort!

I can’t remember what got me into snakes, but ever since a very young age I was fascinated by them, I didn’t want a dog or a cat, but of course we had them & even a hamster at one point, horrible bitey little thing he was! But I really wanted a snake. My mum promised me one for my birthday one year, I was on Louisa Cary ward in Torbay Hospital but got rushed down to Great Ormond Street in London where I stayed for two weeks & had my rotting gall bladder removed. I was meant to get my snake when I was better & back at home but it never happened…

The fact Stefan had made one of my childhood dreams come true was just amazing, he knew me so well & wanted to do anything to make me happy.
He wasn’t too keen on snakes himself before we got our little So’Co, but as soon as you have one, its like a tattoo addiction, you just want more!!!

 

My first ever corn snake, So'Co

Next we got our little girl Lynx, an anery corn, only a few months older than
So’Co, she is stunning & was quite a bit bigger than So’Co at the time.

Lynx watching X Factor, she was like this for about twenty minutes!!

Only a few weeks passed when we saw a boa constrictor for sale that needed rehoming as the person was moving up north. Stefan, being a 'manly man' wanted a snake (slightly!) bigger than our two little ones so we decided to take him, I named him Kai.
Unfortunately he was extremely poorly, riddled with mites & suffering from a respiratory infection, which broke our hearts. Although it cost us money & alot of dedication to make him better over the course of two months I was so glad we rescued him, our vet said if he was left much longer he would have died.
He’s now just over 5ft with lots more to grow & is a beautiful, very affectionate snake.

Our Kai, curled up on his bar stool

Finally to complete our little family, we got Cleo, our tiny baby girl boa constrictor off our friend Marc, she’s adorable & such a character, at times I wonder if she knows she‘s a snake, she doesn‘t half hang off things in awkward positions!!

Cleo, the day we got her in Stefan's hand

They all have wicked personalities, people think I’m crazy & say, you can’t cuddle a snake! But all four of our babies love to come out of their homes, and have a play and a cuddle. They always make me feel better no matter what has happened that day…

So for now, although it still upsets me that life can’t be as simple & go the way I’d like it to, I am so happy & grateful to have my loving husband & my four beautiful (& greedy!) snake babies to get me through the day xxx