Guest Blog : Josh - The Last Two Years, In My Words

Hi Everyone, it's Josh, Kerry's Fiancé !

Kerry’s often said in the past that I should write a blog and I’ve always tried to put it off by telling her I really wouldn’t know what to write about. Although I find it very easy to talk to everyone in public, whether friends or complete strangers, it’s a totally different situation if you’ve got to effectively write to yourself, about yourself and more awkwardly about your own feelings, but as a late Christmas present to Kerry I thought I should give it a go..

A word of warning ... Please don’t expect it to be anything close to the blogs that Kerry seamlessly manages to rattle off but bear with me and I’ll give it my best shot!

Firstly I should probably start with the reason I feel compelled to write this in the first place! 

As I’m sure you're all aware we are literally praying for the phone to ring and for it to be Harefield letting us know a set of lungs have been found for Kerry. Until now, “sitting by the phone” has just been a phrase that I’ve used to describe the situation we find ourselves in as there have always been other things happening in my life, such as caring for Kerry, looking after our two gorgeous puppies (they’re actually 14 months old now but they’ll always be “The Pups” in our eyes), trying to enjoy Christmas and just generally attempting to keep Kerry’s hopes up - although to be honest any of you that’s reading this whose sent messages of support for Kerry do a pretty good job of that on your own!  But as I sit here writing this (2.54am on New Years Eve morning) I have found myself watching, no literally staring at the phone (to the point where your eyes glaze over and you have to refocus) for the last 45 minutes trying to convince myself that tonight is the night.

Back in early December Kerry had her 6 month transplant assessment where Dr. Carby and the rest of the fabulous transplant team at Harefield felt in necessary to “place her at the top of the list for her size and blood type” as they could visible see the decline her health has taken over the last 6 months. Amongst all the relief I felt at being given this news, as it finally seemed as though we were getting somewhere, I must admit I had hoped we would have had the call by now.  I totally appreciate that Dr. Carby couldn’t guarantee anything but the way he spoke suggested he hoped it would be days/weeks rather than months, and from then on I’ve had visions of spending Christmas in Harefield (that’s now passed) and then failing that, New Years Eve in Harefield (with 20 hours to go they’d better get a move on!!), but with the days and nights passing quicker and quicker, Kerry’s health has declined even more rapidly since Christmas day, so much so that I felt it necessary to notify the transplant team of the decline the other day. In a way I suppose it was a last ditch attempt try and hurry things along, although I know there is NOTHING that either Harefield or I can do but wait!! (... It’s now 3.13am... still no call Harefield!!).

In the lead up to Christmas Kerry knew the call for transplant was essential, due to her very low lung function (8%) and her more frequent bouts of respiratory arrest, which is where her lungs and body essential tell Kerry they're giving up and for a short period of time the lungs stop working. She still somehow finds the inner strength to battle back and pull through them, however they are now becoming more frequent and increasingly harder for her to survive which I have admit worries me that the next one might be her last. Ideally prior to Christmas she had still hoped and predicted the call would come on the 27th/28th so that those looking down on her would let her enjoy her Christmas with the family and then let her look forward to next year’s with a new set of lungs, running around playing party games, putting the decorations up and even simpler than that, walking to the toilet unassisted after she had had a little bit too much to drink. All the things that you and I take for granted were merely pipe dreams for Kerry this Christmas day, but perhaps delaying her hope for the call was her way of coping with the situation?!

As I mentioned previously, Christmas day has come and gone and so have the last few ounces of energy and adrenaline that Kerry had gained from the festive period. She’s spent the last 3 days in her bed with DVDs on repeat, resting with her breathing machine on, sleeping, coughing, turning, coughing, eating, sleeping  ... before I begin to sound like a Coca Cola advert I’m sure you get the idea. For anyone that’s followed Kerry’s decline she may (or may not) have mentioned in the past that she could really do with a new set of lungs, well now SHE REALLY REALLY COULD DO WITH A NEW SET OF LUNGS!!

I can assure you there would be no one more prouder of Kerry than me if she got the call, even if it wasn't to go ahead, for the simple reason that this has been a far from perfect passage to transplant and for Kerry to have got to this point alone it’s been an extremely tough and exhausting journey for her!

Two years ago I was sat next to Kerry in one of the consultant’s rooms a Papworth Hospital for a “routine” clinic check up. It was then that they made us aware that they felt Kerry was at that point a million miles away from being listed for transplant, even though her lung function of 23% and general quality of life made her more than eligible to be assessed. Kerry’s BMI was 13% (32Kgs) but as Kerry’s weight had NEVER been anywhere near to what they would class as a “healthy BMI” of 18.5% they suggested the better option to take would be to make things “comfortable” for her rather than taking on the almost impossible task (in their eyes!!) of getting to the target weight that was required of around 44Kgs (approx 7.4stonne) whilst so unwell. If anything this was possibly the best (and worst) thing they could have said as it spurred Kerry (and myself) on to proving she was able to reach the weight required! If you’re one of Kerry’s “groupies” as I like to call you I’m sure you’re aware of how determined and stubborn Kerry is and if anything I can be even stubborner (if it’s not a word it should be!!), which makes for some quite interesting “debates” in our house if we both think we’re right about something, but that’s another story :)

Since that day the weight increase has been extremely hard to come by but there are a couple defining factors that I feel eventually helped Kerry on her way to absolutely smash her target weight of 44Kgs, as she now finds herself tipping the scales at 53Kgs (just over 8stonne) with a lung function of only 8%;

Firstly starting a "wonder drug" in our eyes known as Megacestrol (Megace), which is actually a drug used to treat breast cancer, but one of its side effects is a vast increase in appetite which therefore lead to Kerry being far more adventurous with her foods and the amount that she ate. Annoyingly this was also something she had to fight to be given as her consultants didn’t feel that enough research had been done into the drug to enable them to prescribe it to Kerry, but after quite a struggle and due to the fact that Kerry and I were so "strong minded about getting it as we wouldn't leave without it" (their words) it was given to her and has since been prescribed to other patients at Papworth that have needed to same helping hand.

Secondly lowering her stress and anxiety levels seemed to help a lot due to the assistance of specific drugs and also when I gave up my job to become her full time carer, as previous to that I had been leaving her alone in the day whilst I went to work which didn’t suit her at all as her health was declining and normal day-to-day tasks such as getting up and down the stairs were becoming a struggle. 

Of course there were other factors that helped such as nailing her diabetes and getting her blood sugars under control. But there were also many bumps along the way too such as when they tried fitting Kerry with a feeding tube to "speed up" the process, even though we had told them it wouldn't work due to her milk allergies, and surprise surprise, she vomited away all the hard work she'd put in and the weight that she had gained up to that point in the space of a weekend. She did then experiment with soya based feeds but eventually it was decided it was not the right way to go and ironically since her feeding tube has been removed her weight has ballooned (a little light humour for those of you that know how feeding tubes work). So after that whistle stop tour of the last two years we find ourselves here today with Kerry having been on the transplant list approaching 8 months ... THAT SAME LIST THAT MANY THOUGHT SHE WOULD POSSIBLY NEVER BE ON... and waiting by this phone WHICH STILL HASN'T MADE A SOUND ... (at 3.50am!)

I think that’s probably enough from me for the time being, personally I’m quite impressed but please accept my apologies if you feel the last few moments of your life have been wasted whilst reading my rambling attempt at writing a blog!

I hope to be the bearer of some fantastically amazingly sensational news very soon so keep an eye on her Facebook page but in the mean time, from myself, Kerry and “The Pups” we hope you have a Happy New Year and if you get a moment perhaps you could raise a glass tonight to hoping for a successful outcome for Kerry!!

Josh xxx

I Have Made It! (to Christmas) and more...

I'm never one to tempt fate but I thought it was probably safe for me to blog now. Those of you who don't know, I had the flu, this flu then turned into pneumonia. I had a lung function of 12%. This started around the beginning of November and after a very frank, honest clinic appointment I was told this could be the end of the road for me, pneumonia and flu (particularly in Winter) are extremely dangerous for people with CF, but even more so for those waiting for transplants or who have low lung function, I check all those boxes and I knew once I had these it was the worst possible news. The only thing I had to cling onto was the fact I was still on the transplant list, however, due to said evil bugs I had very high temperatures, around 40 degrees, high infection levels and low oxygen levels, I was warned by my CF consultant if I was called for a transplant I could be deemed unsuitable for transplant as high temps and high infection levels (CRP) are big contributing factors when they are deciding if the transplant will go ahead or not. So that glimmer of hope I had about getting my new lungs had vanished, I was down in the dumps and petrified however my hope was restored at my 6 month transplant appointment. The transplant Dr told me as I was so poorly, I am on deaths doorstep basically, so unless my temp and CRP were completely unbelievably bad, I would definitely be transplanted because I'm going to die anyway, so why not take the risk, it was very reassuring to hear that I'm still eligible for transplant and not too sick, they asked if I wanted to be admitted into Harefield and wait for my transplant, as I'd been placed on the urgent list  (yes, it could happen any minute now!!) anyway, I was also offered ECMO which is a machine that would keep me alive and is used as a bridge to transplant for those as sick as I am, however, Christmas is a very special time of year where I want to be with my loved ones, eating copious amounts of food and enjoying Xmas at home, I've never been in hospital over Christmas and unless it was for transplant I didn't plan on starting this year! Stubborn, old, determined me :) of course once all the fun and festivities are over I may consider going in if my call hasn't come by then of course! Christmas can wait if it means I'm getting new lungs!

Of course I'm extremely sick, my lung function has come down to just 8% which is about 0.25 L considering there is 0.33L in a can of coke, I'm barely functioning on anything at all, but and this was the main reason for blogging. I'm still alive! I was told in clinic that day almost 2 months ago by my expert CF consultant there was a chance I wouldn't make it to Christmas, also Josh and I were advised it was time to have our quick, plan B wedding - but this made me all the more motivated to get to Xmas. We did make arrangements though and decided to have a Christmas month, Josh and I have basically given each other our gifts throughout the month just in case I didn't make it to Christmas day, but I think it's now finally safe to say, I've made it :) its the 22nd December now, so just 3 days to go, this is why I started the blog about not wanting to tempt fate but 3 days, I've survived 2 months I can last another 3 days.

During this time I have had a few respiratory arrests which are extremely scary, I've stared death in the face each time I have one of these arrests, like a heart attack but of the lungs, I basically stop breathing, go blue, oxygen levels drop and it's just generally very scary and a traumatic thing to go through. The last 3 have been extremely serious though and even more difficult because my body is weak from the evil bugs, my failing lungs are exhausted and I'm totally incapable of bringing myself out of these arrests now, I had about 5 but I would make it through, scary but I got through them, now with such a low lung capacity and very little strength left in my body, fighting my way out is very hard. Without the help of breathing machines, very high flow rates of oxygen and a sheet battle of will and determination I have got through them, the last one I had was about 5 days ago and I honestly thought that was the end for me, I thought yes the doctors were right I won't make it to Christmas, my time has come, but somehow, I got through it and I'm obviously relieved however I'm now extremely scared, I mean petrified, if it happens again because this time, I might not be so lucky. Just keeping everything crossed my call and my perfect set of shiny, brand-new lungs come before another attack.

So I just want to say, I made it to Xmas despite medical professional opinions, as I said they just make me more determined to outlive whatever expected date they give me, I've baffled them many times (particularly with my weight) why not baffle them again, 12% lung function and a weight of 54kgs + pneumonia and flu = 8% lung function and 53kgs, I have managed to stay stable weight wise, yes my lung function has dropped but as long as there is still 1% in my lungs, I will use it to fight my not-so-little butt off and continue fighting CF, awaiting my call and living in hope not fear !

Thank you to everyone for the overwhelming support, the lovely messages, comments, emails, status dedications etc. if you in anyway have thought about me lately - thank you. It could've been thanks to all your thoughts and positivity that pulled me through my last respiratory arrest. Thank you Thank you Thank you! Every single message however long or short, means so much to me and puts a huge smile on my face and keeps that little sparkle in my eyes sparkling, the beat in my heart beating and the breath in my lungs breathing.
I love you all, have a fantastic Christmas everyone and I hope you get everything you dream of and more :) I really hope my next blog will be saying I have received my transplant. If not it will probably be me blabbing on about Christmas :) I am still very poorly and I'm still living on a knife edge, but I'm going to try my best to enjoy Christmas, as morbid as it sounds, it could very easily be my last, but I'm hoping it's my last with these dying lungs and not my last living. Next year I hope I can look back at this post and use it as future comparison, to see how great transplant is and what a miracle it can be.
I've said it so many times but seriously, please if you haven't already, please consider being an organ donor by signing up to the donor register. I need a miracle right now, I need a hero - One day, you could be that miracle, you could be somebodies hero, what better legacy to leave behind than that.
Sign The Donor Register

Thank you for reading and have a very Merry Christmas.
xxx

One Step Forward. 10 Steps Back (FB Update)

I'm sorry I don't have the energy to write a blog, but thought I would copy my Facebook update regarding a very bad night I had two nights ago:

Wednesday:
Hi Guys, thought I should update you all - I had an extremely bad night, I had one of my 'breathing attacks' where I just stop breathing. Think that this is all still part of my pneumonia but also my very poor lungs, my temperature was very high and my sats were low despite being on 6L of oxygen (maximum my concentrator goes to)

I'm so poorly and so scared right now I shouldn't even be here now,

 I should've died last night, I'm so thankful I had something helping me get through last night. But I know if it happens again I don't know if I can pull through it because I'm extremely weak and as a result of last night, I am so tired, extremely sore - my lungs hurt, my ribs, joints, headaches, swollen throat from extreme coughing, just pain everywhere.

I think my lips may have gone blue too which points to respiratory arrest (like a cardiac arrest - heart attack but of the lungs) I know if I'd called an ambulance they would have put a ventilator tube down my throat and as I am so unwell and weak I probably would not have been able to come off it and therefore I would have been taken off the transplant list, left in intensive care on a vent with no clue what to do other than be made comfortable and left with nothing, no transplant and no hope.
So poor Josh was in such a predicament but thankfully when my machines kicked in and saved me last night, eventually my oxygen levels came up, my temp came down and once I began to relax and calm down I settled. Although I have very little idea of what the hell exactly happened to me, poor Josh had to go through that but it was so hard for me but somehow, someway, something, pulled me through. The fact I'm here now typing this to you is a miracle in itself because I probably should be dead now - sorry to be so blunt, but I'm just being very honest!

In part of that honesty, I will admit I'm trying really hard to stay strong and keep positive, not just for me and my own peace of mind, but I am trying to stay strong for everyone around me, I never want people to worry about me and I like people to think I'm very strong and always positive but nights like last night really rock the boat and I've got to restore faith in my body and my self again, it's so difficult and scary but I will get back to the positive, happy, self-assured Kerry once last night is just a distant memory.

My lung function today was at best 8% which is so so poor, about 100mls less air than a can of coke can hold lol (hey at least I can laugh about it!!!) I wanted it to be wrong cos that's bad 8% is very, very rubbish lol!!

I Just need them lungs now, I don't care about Christmas anymore I just want to live, if it means being in Harefield for Christmas, so be it because truthfully I don't know how long my little weak body can keep going, come on Harefield!!

Just wanted you all to know what happened and if this makes you do one thing, sign up to become an organ donor. Someday, you could save the life of someone like mine.

Please be some oldies hero.
> Sign Up To Become A Donor Here <

Many people don't understand why I am at home with this, the reason is I want to pass away comfortably at home, everyone understands this - my cf team and my transplant team although there is always the option for me to go in if I want to, but for now I don't want to go in. It's the absolute last place I want to be (unless it's for transplant) so here is a comment I left on that Facebook update, here is the comment:

I'm so thrilled to hear from someone who also wants to be at home for 'the end' I've been told I might not make it to this Xmas also and I've been saying yes I will, I will not die, but then last night came and for that duration I thought maybe they were right  but now tonight I'm living to tell the tale and I'm alive, at home, comfortable, where I want to be. So many people tell me to go into hospital, or ask why do I not call an ambulance so I'm really happy to hear someone who feels the same way I do!! Being in hospital for me is not a peaceful, resting, relaxing place I have severe anxieties and panic attacks away from home, so I just hate being there unless completely necessary like at the beginning of this year, I had 3 lung collapses and needed chest drains so had no choice, but anyway I also have great difficulty sleeping and getting no sleep in hospital is awful, also hate the food lol, my hosp is 1.30 hours away from home so don't get visitors all the time, hence the anxieties etc, but yes regarding having pneumonia, the flu with 8% lung function, I should be in hospital but I have my fiancé as my full time carer doing literally everything for me, I just rest, rest and rest some more eating nice food and the same treatment as in hospital, I'm on 3 strong ivs and heaps of pain meds, better care, much more than I would in hosp, unless I have one on one nursing in itu or something... 

However I don't mind being in hospital if it's for transplant, in fact I will be jumping and running to Harefield *metaphorically speaking* I can't even walk, let alone jump haha! So thanks again to everyone for your messages but just one little thing - please, don't tell me to go into hospital lol. I know when I need intervention, Harefield know my situation and are basically on standby to be ambulanced there should I require Ecmo treatment or if I choose to wait for my lungs there I just have to call but currently this is where I want to be, on my sofa with my gorgeous, lovely amaaaaazing fiancé Josh, my puppies and my family all 2 minutes away  So as for my cf centre or going to my local hospital, it's a firm no lol I'm being taken care of, made comfortable and given the right meds etc by my local hospice outreach team (who are fab) and very closely monitored by my gp and tx team.

Thanks again for all for the loving, kind, supportive comments and messages, they honestly do bring tears to my eyes to feel so overwhelmed by love. Lots of love 

Transplant Clinic - Good News!

Facebook post, Wednesday night:

Hello all. Finally home, those who warned me about the exhausting day - you were not wrong. I feel I could sleep for a week lol. 
I had the best outcome possible, I have been put to the absolute top of the list for my blood group/height etc. so if those perfect matching lungs come up, they are mine :) they offered to keep me in and wait for lungs there, but I explained how I like being at home and a little picture of Milly and Tink showed the Doctor (the legend - Dr Carby) exactly why I want to be here lol. For those of you who know what Ecmo is, I have been given that option if I get any worse I must contact them immediately. In the mean time I have to just wait by my phone, ultimately I'm still waiting for the rarest lungs due to my height and blood group etc but if they come now, they have my name on ;) 
Now I intend on sleeping for about a week, so if I don't reply to anyone it's because I'm in the lovely, relaxing land of 'nod.' 
Oh and I just wanted to quickly add how amazing it was to see George Compton today, she's on Kalydeco and is doing soooo well!! She's actually improved lung function from about 12% to 24%!! No more oxygen, no wheelchair she looked great, not breathless whilst chatting to me and the difference from when I saw her a year ago is staggering!! :) We had a little catch up, which was lovely and she's been able to come off the transplant list as her quality of life has improved so much, she's happy now and feels a transplant isn't necessary now which men's kalydeco really is doing amazing things for her. :) oh and for those who may be wondering why I can't have kalydeco it's for CF people with a certain gene type and I don't have that gene unfortunately!
Anyway, thanks for all the messages and comments guys, I will read and hopefully reply as soon as I'm not asleep *falls asleep* lol... Love to you all ♥

Facebook post, Thursday:

Hello everyone, a slightly emotional Kerry here - I am utterly overwhelmed by all the supportive messages from everyone regarding yesterday's outcome - Thank you thank you thank you!! It's all I can say, I'm so amazed by the love from all and the amount of people who told me that they were thinking of me yesterday, it means so much and you probably don't realise how much the smallest little comment, or the biggest essay message means, either way it means a lot and you've made my smile brighter, yes - you :) thank YOU!

I will be writing a more detailed blog over the next few days about exactly everything that was said and how it all went yesterday as soon as I feel up to it (still very tired) including all the tests, details and the conversations I had with the various amazing members of staff at Harefield.
One thing I can say is I am so so glad I made the decision to go there for my transplant, it seems they will bend over backwards and take risks on people who are as sick as me, I told them about my high temperatures and high CRP levels (infection markers) etc. But they were still happy to offer me lungs, these also offered me the option to wait out for lungs there were I can be monitored and looked after (as they were slightly concerned regarding Pap's way of doing things, like expecting me to go clinic every single week for simply a blood test and to collect another week of IV's) actually this concerned them because they want me doing as little as possible, yet a full tiring day, 3 hour round trip to see a doctor who says 'yes Kerry you are still unwell, see you next week' they've said they will speak to my team about that, so hopefully sort something out because I can't keep attending clinic every week like that, that alone could kill me down to exhaustion!! But that aside, they respected my decision about wanting to be at home if the worst case scenario happens and they also offered me ECMO to keep me alive should I need it. For those of you who watched Kirstie Tancock's documentary 'Love on the transplant list' (if you didn't watch it, WHY?!) Anyway, she ended up on ECMO after things took a very bad turn for her and she became extremely poorly, thankfully it kept her alive then her lungs came at literally the last minute and for those who don't know her, or her story, shes doing amazingly well and is a great friend of mine :) So if this happens to me and I basically nose-dive downhill I have that option and it's great to know I have hope and it won't necessarily mean goodbye Kerry.

Without the positive backing I felt I received yesterday from the legend that is Dr Carby, I feel safe in their hands and had I not gone to Harefield, I think, well I am pretty confident I'd be off the list now, as they would have deactivated me I would probably be 'being made comfortable' and I would most certainly be facing an early grave at just 21.

Obviously, I'm not stupid, I am positive but also very realistic, just because I am boosted up the list, it doesn't mean there are readily available lungs and there is still a chance I won't make it as I am still very sick. But that 'tiny glimmer of hope' I'd been speaking about in my recent posts, well it now feels slightly larger and I now feel I can grasp it with my hands, not just my fingertips and the light at the end of this horrid tunnel seems more visible now :)

Currently, I'm just resting up as I'm still very, very exhausted from yesterday, it was extremely tiring and I still feel like I could sleep for a week lol! But I'm back on here now and I am ready to start making some bracelets again and enjoy my Christmas Month! Thank you again for the love and Happy Xmas ;) xxx

Update - Still Very Poorly.

This is mainly an update taken from facebook on Sunday, but it has a few adaptations:

Hello all. Wish I had something good to say but it seems I've taken steps backwards. I thought there was a tiny glimmer of hope I was improving, but then when I woke the following day and I was extremely unwell yet again and my body just wanted to give up that day, so I decided to sort of let it and I slept and slept most of the day (and night.) 
I'm feeling very poorly a bit blurry eyed from all my meds and general grogginess so this may or may not make sense. I think I may be feeling slightly worse than I did before. Its hard to describe, I'm so exhausted and weak, like I don't have the ability to hold myself up and regarding my chest, I feel like I'm 'drowning on the inside by my phlegm' it's horrible and hard to comprehend, basically it's just there clogging me up and blocking my airways making the ability to breathe so limited. Add to that all the chest pains I'm having along with my cracked rib makes my breathing just so restricted. 
I'm so weak and exhausted. Josh is having to pick me up and carry me everywhere at the moment, like to the toilet, upstairs to bed because I'm just too weak to walk at the moment, although when I can walk or move on my own, I do because it's important to keep strength and as much body muscle as possible for transplant recovery.
But currently it feels like my body doesn't have the energy to carry it's weight, if only I hadn't gained the 3 stone lol... At least I can still laugh through this, if I don't laugh and I don't smile, what can I do? Cry? well yes I've done a bit of that too, a lot but I'm still smiling :) dwelling on negativity will only bring me further down, in mind as well as body so that's not what I want to do but it's getting ever harder to keep telling everyone I'm fine and I'm going to get through this, when in all honesty, now I'm not even 100% sure I can do it, but as long as I'm on the transplant list, as long as there is 1% in my lungs, a beat in my heart and a sparkle behind my eyes - I will fight, with every. single. part. of. my. body. 

I don't really know what to say other than I'm sorry I can't bring yo

u better news, I have my appointment at Harefield for my 6 month check up on Wednesday, hoping they will see the massive, rapid decline I've been on since my last appointment. It sounds morbid, but Josh and I are having a 'Christmas month' where we give each other our presents throughout the month just in case I don't get to Xmas, or if I get my transplant and spend Christmas in hospital, but if and I'm positive I will still be here, I have gifts from the rest of my family and friends to open on the day :)

Thank you so much for those who are keeping me in their thoughts, praying for me and wishing I pull through this, I appreciate every single message/comment, all the love is phenomenal and brings me to tears, of joy obviously! Trying so hard to keep my spirits up and stay positive, I'm realistic too though so that's why we have Xmas month, hehe. This is how we stick our two fingers up at CF, stupid flu and even more stupid pneumonia - you can throw obstacle after obstacle at me, I will just alter my life and *sticks tongue out* say nerrr.

Love, love, love ♥
Thank you all, I love you all and I promise I will get through this and do you all proud.
X

Monday:
It's now Monday night and I'm sad to say today once again wasn't great, but I'm still here :) and I will continue to be here for a very, very long time.

Before I go - I would just like to say a big Hello and a massive Thank You to Steven Scaffardi, he is the author of 'The Drought' which is a book I'm currently reading, it's hilarious! He sent me a signed copy which is awesome :D and inside it said for me to keep smiling and keep laughing, well the book is certainly keeping me laughing and those who know me, know I always try to keep the smile on my face :) so it was a perfect little message.
He's also now following my blog!! All I can say is - get the book. Nice and easy way for you to buy it - If you click the picture under my 'What I'm reading' tab, at the top of my blog, it will take you to the amazon page where you can get your copy and you must get it!

My Signed Copy :) :)

Thanks for reading.
Merry Christmas Month :)
xxx

Clinic Update (taken from Facebook post)

Had a very long, very exhausting day at Papworth yesterday for clinic as I had many tests done. (including a pregnancy test!!! As I've gained so much weight and been sick etc, it was negative thankfully lol) anyway I am still adamant I want to stay at home unless there was something such as another lung collapse, then I would have had no choice but thankfully no collapse! 

Pneumonia + flu it seems, either one has led to the other so I've taken a double hit. You'd think this would be enough (along with my broken wrist) but no there is more.... I also have a cracked rib from coughing so much, ahhh lol. Really come on life, keep chucking your obstacles at me - I will keep beating them, I'm not going anywhere, lol.

Pap are liaising with my local hospice and GP so I can be cared for and ensure I can stay at home, my morphine doses have been dramatically increased so I'm high as a kite at the moment haha! But on a serious note, I'm not stupid and I know if I really need to, I will go into hospital, right now I'm still in a very poorly state, unsure whether I'm going to get better or not, I guess time will tell but I'm determined to get through it and have a great Christmas!

Oh and also, no bi-pap, tried every route, local hospital, gp, nobody can get me one :( so still without one, may end up looking into buying one! I know it could make a difference to my quality of life and I don't have that option :( so I don't know what to do, or where to go from here, I have my 6 month check up at Harefield beginning of Dec so will bring it up with them there, maybe they can help, also may be changing my care over to the Brompton hospital. 

Anyway, thanks as always for the support, it really is so overwhelming :') lots of love to all xxx

Update on Kerry (from Josh her fiancé)

Hi guys it's Josh updating here on behalf of Kerry: 

We have had the GP come to visit Kerry today as she took a bit of a bad turn through the night and he has confirmed she has pneumonia which explains all her symptoms and he is helping her to get a bi-pap machine which should allow her to have a break from the exhausting task of breathing and it could have a good impact on her quality of life.

We also have the hospice consultant coming to visit tomorrow to see about making her more comfortable because right now she is struggling a lot. 

I know for a fact she is overwhelmed by all your messages after seeing the smile on her face every time I read her the kind, supportive comments from you guys, it really does brighten her up and keeps her positive head on, so thank you for that.

One thing for sure, as you all know, Kerry is a fighter (she doesn't know I've added this to the comment) but I'm so proud to call her my fiancé and even with everything she puts up with, she never ceases to amaze me with her positive attitude. And I want her to know that the puppies and I are so proud of how far she's come and the progress she's made despite the obstacles she's faced particularly this year (multiple lung collapses etc) and as two years ago we were told she wouldn't even be here right now so the fact she is still with us and her weight certainly wouldn't be where it is today,  just goes to show she really is determined to get her new lungs (or stubborn depending on how you look at it lol!)

With this positive spirit, the amazing support and the love from her family and friends, I know she WILL get through this x

An Update (taken from my Facebook post)

UPDATE: I just wanted to update everyone on my situation, I'm still extremely unwell with the flu and general CF too. I'm very poorly and we are all still unsure whether I'm going to get through this, it's extremely scary and with a lung function of 11% I can't take any more drops. My body is completely weak, exhausted and I haven't had the energy to even walk to the toilet the past few days. With the flu, it seems there are like 3 stages the first being muscle pains and high temperatures, the second phase is the same but with cold-like symptoms, now I've just started the 3rd week of having the flu, this is the scariest because it's the phase when you have the first symptoms a little less but you have literally 0 energy and are basically bed-bound. It's definitely true, I've barely left my bed or moved from the sofa, it's taken all my energy just to keep my eyes open at the moment :(

Already being as sick as I am with CF and feeling exhausted and

 sick most of the time this is proving to be exactly as difficult and scary as I imagined (and was warned by my GP and CF team) they have warned me this could be it for me if I don't get through it, but with all the hope and tiny amount of energy I do have I'm fighting, literally with everything I have. And to those who wonder why I'm not in hospital, it is because I have 'wishes' and 'plans' in place regarding end of life and I don't want my life to end in hospital, a place I've always tried to avoid and to end my life there would be against everything I wish for, I want to be at home, comfortable, surrounded by my loved ones, with my pups and I'm under the care of the hospice if things do go that way so we have plans in place - but I'm still positive, even with everything life is throwing at me right now, the flu, broken wrist and some other personal issues - I will beat it all and get through everything, no obstacle will get in my way - it's new lungs or nothing I'm afraid :D 

But anyway, I ask you all, please help me to get through this, pray, wish, cross yours fingers - whatever works, please do it and help me keep going strong because I'm still hopeful my lungs will come, a friend told me recently just when everything seemed like life was going to pot for them and they were slipping away, life was near the end, the call came, their new lungs came just in time. I'm hoping this is how it will work for me too. 

I'm sorry this post is so long but I feel I've let people down not updating my blog regularly or posting many status/replying to messages but now you know why, I'm probably asleep lol.
Thanks for the support and hopefully my next update will be better, either I've overcome it and beat the flu, or even better - I've got 'the call!'
♥

Checking In :)

Hello all! Just checking in to let you all know I'm still here, no calls for transplant yet but still keeping the faith that it will happen sooner rather than later preferably lol.

I'm still rather under the weather, not just CF wise, I also just seem to have this constant cold which won't go away, I'm very bunged up, coughing a lot and I'm still having problems with my tonsils being swollen. My temperature is all over the place, one minute I'm freezing cold, the next I'm sweating buckets, so annoying.

CF wise - I'm in a serious amount of pain with my lungs and joints because I have a very nasty infection, I feel completely full of phlegm (sorry) I feel like I'm drowning, so difficult to take a breath in and then the pain strikes and it's equally as hard breathing out. It's worse when I lay down.
Today I was extremely poorly, I woke up coughing so much I had to do extra treatments, so unbelievably breathless and sore I just couldn't even function. I'm on 3 IV's still and it just doesn't seem to be helping at all really. I went to clinic last week and they were literally begging me to go in but I can't face going in at the moment, for personal reasons.
I know when I need to go in and as long as I have Josh here looking after me, I don't need to be looked after by a nurse, but I'm not stupid or naive, I know if I NEED to go and yes, I'm very ill, but I'm coping, we are coping just fine at the moment, if things change I'll go in, as for now - I'm staying put!

Anyway, I've also broken my wrist :( I fell down the stairs and as I have osteoporosis my chance of breaking bones are higher, but with my pain tolerance being quite high I didn't go to A&E until about 4 days later and alas I've broken a small bone on my inner wrist, it's very painful and it's my right hand which is just typical, you don't realise how much you use your hands until you can't.

Finally, just want to say I have 0 energy, I sleep probably about 15 hours of the day now I just don't seem to be able to keep my eyes open, I'm completely exhausted in every sense of the word but the hours I am awake I've been doing a lot of reading, I have iBooks and the Kindle app and the free books are actually really good, I have paid for a few books to read and I'm really enjoying it, I've definitely got the reading bug - better than my 'cold bug' hah!!
Want to end on again more good news, my weight is still fantastic, this clinic appointment I saw my dietician and she said she's no longer going to see me every appointment now and I only need to be seen if I request!!!! Never did I ever think I'd see the day my weight was acceptable enough that they'd get off my back, it really was the best acolade of my weight gain, I'm over 50kgs now and I'm finally over 8 stone the highest I've ever been, prior to that my highest weight was 7 stone 3, so this is massive thing for me!!

I need to stop writing now because not only do I have very little to say, but also typing with my broken wrist is not fun! OUCH!!

Just have two little photos to add (although I look like rubbish in both lol!) it's my and my lovely nephew Keaton (my sister + her partners son) and my niece (Josh's brother + girlfriends daughter) Maisie, who were both born within about 3 weeks of each other, so got two lovely little babies to love and spoil!

Thank you for reading :)
xxx

Me and gorgeous bubby Keaton xx

Me (looking really bad lol) with gorgeous, little Maisie xx

Long Overdue Update x

I'm sorry I haven't blogged in about 2 months, I've been extremely poorly with my CF healthwise but I've also had this horrid cold which has knocked me for six, I'm still suffering from it and feeling like poo, on top of being ill too grr lol. I have barely been on facebook much at all so there haven't been many updates on me lately, I'm sleeping a lot more than ever before as I'm just so incredibly weak, it's like my body just wants to give up, I've had a couple of literally 'near death experiences' where it didn't look like I'd pull through, but there is always something in the back of my mind saying I can't go yet, it's not my time. Something seems to work because I do pull through, but I don't know how many more of these extreme set-backs my poor weak body and failing lungs can take.

It's been a tough time lately, my emotions have been more up and down than a rollercoaster. I lost a good friend, just 15 years old, who was waiting for new lungs that never came in time.

My sister gave birth to my little nephew Keaton and that was great and cuddling him and spending lots of time loving him picked me up, but at the same time, made me wonder if Josh and I will ever have our own child, we have our pups they are our babies but will I ever be a Mummy? I was told by my transplant co-ordinator if everything is going smoothly after transplant, although it is still a risk, about 2-3 years later we could try to start a family, it's just everything is always hanging in the balance, will I, won't I, if I don't get a transplant it's never going to happen.

Then my brother in law (Josh's bro + his girlfriend) also gave birth to a little girl Maisie, so surrounded by newborn babies at the moment!

I only like to update my blog when I have something to talk about or positive news, but I've been a bit down emotionally and on top of that I am feeling very poorly. I believe my last blog was me starting NIV which never happened because my hospital doesn't seem to have any communication! So still fighting to get that.

If you'd like to keep more updated on my situation when I'm not blogging you can join my transplant group on facebook the link is here : Kerry's Transplant Group or it's also at the side of my blog, over there somewhere >>>

Sorry for the very long delay in blogging, I've certainly had writers block and I've been writing quite a lot of 'private' blogs which I will hopefully publish sometime soon, but for now I don't feel the time is right.

Oh the good news - I finally hit my target goal weight of 50kgs! I was thrilled and cried with happiness, I just seem to keep on going and going, although with this cold I have nasty tonsilitus so I'm not eating as much, just soft foods lol. And also, the pups turned 1 on the 25th September, we had a mini doggy party, it was a lot of fun and just a great reason to get all the family round for fun :) had a fab time, although extremely exhausting! Thank god they only have a birthday once a year :P

Finally, I have my flu jab on Saturday which I'm not looking forward to as I always seem to go a bit under the weather after the jab and at the moment with this rubbish cold, I don't know how much more under the weather I can go!!! We will see, going to Pap on Friday for emergency clinic hoping to add in another strong IV so I can knock this nasty bug on the head, because to be honest I've had enough thank youuuu, lol!

Sorry for the lack of blogging and as I said, feel free to become a member of my group, I update it a lot more regularly at the moment than I do my blog and not just CF/Transplant things, also put general life and funny picures on there, of me, the pups, etc.

I hope you are well and thank you for the continued support to everyone who had sent concerned emails, wondering if I'd disappeared off the face of the Earth lol.
Lots of love
xxx

Hospice Care & Starting 'NIV' (Bi-Pap)

When these words were first mentioned to me, I was in shock and extremely frightened - to me, the hospice is where people go to die, so having those words said to me indicated that I really am dying. Even though I know it and everyone around me knows, if I don't get my transplant, I'm going to die, but hearing it from professional like my CF team at Papworth really makes it hit home.

I had the community support nurse from St Elizabeth Hospice come round for a meeting today, we'd been communicating via email but there is only so much you can do over email, we needed to meet and go through everything. On Wednesday in clinic I saw Julie, my palliative care nurse and we spoke about a variety of things which she said the nurse could help with, such as pain management, helping my anxiety and many others, so Josh and I thought of everything we wanted to say and went through it with her today.
She is going to speak with my GP as soon as possible about increasing my pain relief dose as it hasn't really changed in over 2 months and I'm now 'used to' the dose, so it isn't as effective, I'm on the starter dose for Oramorph (morphine) which is between 2.5-5mls, I take 60mg of Oxycontin twice a day (a 12 hour release Morphine) which basically covers my background pain, I also take 1g of Paracetamol every 4-5 hours for general pain and also to control my temperatures as I tend to get fevers and temperatures reaching as high as 38 degrees which isn't pleasant, the Paracetamol dose can't really be changed as you aren't allowed to take any more than 8 tablets a day, but my Oramorph dose can be increased and so can my Oxycontin, so I think that is the plan. I'm also on an anti-anxiety tablet which I take before sleep, as this is when I'm most anxious, or when needed during the day, eg. when I'm going for a long car journey. I'm also on an anti-depressant, which doubles up as an anti-anxiety tablet too but it also has side effects of weight gain and drowsiness so I was put on this tablet in the hope it would help my weight and my sleeping pattern but I've been on it now for almost 3 years and the dose hasn't changed, so that could also be altered.
I am potentially going to be switching to a much stronger anti-anxiety tablet called Diazepam, which is a is a muscle relaxant so it enables the body to relax, it should allow me to 'switch off' my brain at night and get sleep without waking up scared and it might help my panic attacks too, if not it should help with my sleeping and my anxiety. So I hope that my GP is okay with all this and things will start to improve soon, it's hard enough dealing with CF, waiting for a transplant and all the other health issues I have, having mental health problems too is difficult, so if anything can be done to help my anxiety and my emotions, that will be a breath of fresh air, which is always welcomed, lol!

We also spoke about where I'd like to die if I didn't get my transplant and for whatever reason things didn't go to plan, I had always said I'd like to be at home as opposed to in Papworth because I want to be with my puppies, I want to be surrounded by my family and being in Pap is 1.5 hours away, if I suddenly went downhill, some of my family might not get there in time. She then informed me that I could always go into St Elizabeth's Hospice because you are allowed to take pets there, I'd be put in a side-room, so no risk of infections or catching anything from anyone else and it is in Ipswich, so I'd be near everyone if the unthinkable happened, so this has definitely made me think about it differently, my pups are a huge thing for me and I absolutely hate being away from them, they are my babies and even going out for an hour makes me miss them like crazy, so thinking I'd be without them if I died is awful, so knowing they could be with me, I'd be made comfortable and I'd be in a safe environment, at home there is not guarentee I will be 'comfortable' however, she did say there are a team that would come out to me at home and basically look after me, but I'm definitely thinking about that now. I am going to have a visit after I've been in hospital to see what I think, get a feel for the place and see if it's something I'd like to put into my 'plans and wishes.'

I was also informed about complimentary therapy, I can either go to the hospice or they can come out to me, basically they do aromatherapy, massages etc. Which would be amazing, nothing better than a lovely relaxing massage, so I'm being referred for that! She also said they have supportive services for family members, I have a few people in my family who find it difficult coming to terms with everything that is happening and they can arrange meetings with my family, or myself, to hopefully ease their worries.

All in all, it was extremely productive meeting with her and I feel we got a lot out of it, she got to my house at 4 and didn't leave until 6.45!! It doesn't matter how breathless I am, I can certainly chat :)

We called Papworth today and they said they think there will be a bed ready for me on Friday to go in and start the NIV machine (bi-pap/nippy) which at first I struggled to accept, to me it was kind of last resort, I always thought as long as I'm not on oxygen, or as long as I'm not on NIV, there's always something new to try, but now I'm on 24 hour oxygen, I'm on all varieties of pain meds and I'll now be on Bi-pap, the only option I will have is transplant, so to begin with I couldn't deal with thinking about it, but now I have realised I'm extremely unwell and the longer I put it off, the more unwell I can become. It's not the easiest thing to tolerate and some people can never get on with it, but I know I don't really have a choice, my friends who have used it said it allowed them to have a rest as it essentially breathes for you, so you can just lay there/sleep with it on and let it do all the work, I'd just chill. Many people say it allowed them to have better nights sleep as they weren't struggling to breathe all night and it then helped during the day as they felt rested and weren't so exhausted, so it sounds like it could hopefully be really helpful for me. I had another 'scary moment' the other day when I couldn't breathe, I felt so blocked up with phlegm, nothing was helping and it was like the more I coughed and cleared the stuff, within seconds it was back and I was drowning again. So basically I had to have a huge cough every 3-4 breaths, which made me so tired and exhausted, my muscles in my stomach were hurting and I was almost sick many times, eventually my body let me sleep and I woke up a few times in the night not breathing very well, so this was the final straw for me and I thought that's it, I'm going to go in and start this damn machine!! So please keep everything crossed I get on with it okay, I know it's not going to be the most comfortable thing, but anything that helps me to get sleep or aids my breathing in anyway will be great. This was also something that the nurse today helped with because Josh is never sure whether to call an ambulance when I have this funny breathing moments, sometimes they pass so quickly but other times they last a while, but he always has in the back of his mind that I don't want to die in hospital, so he's always unsure what to do and what I'd want him to do, as when these attacks happen I'm not really with it so can't tell him what to do, so thankfully she gave him a phone number which is a 24 hour helpline, they have nurses/doctors/health care assistants and advisors that can come out to help me without calling an ambulance, but they can also help Josh to know if he should call 999 or not, so that has taken a weight off Josh's mind as he now has someone to turn to in those scary moments.

So that is pretty much all I have to say :) I feel this blog has been quite positive despite being about a rather nasty subject, I understand it's not easy for anyone to read but as I always say, I like to be as honest and open as possible, whether it's good news or bad.
Of course I can't finish this blog without a little weight update, this is a good one :) I had my feeding tube removed on Wednesday because my weight is so good and I haven't actually used it since September last year, so it was a waste of time having it. I do know that during my transplant recovery I will have to be fed via an NG tube, which is a tube that goes in your nose, down your throat and into your stomach, I tried to use it before but I couldn't pass it without being sick, but I've come to the conclusion that I will have more things after transplant bothering me, like 4 huge chest drains, a ventilator tube down my throat, catheters and lines in the most awful places, I think I can deal with a little NG tube and it would only be until I am able to eat for myself.
Regarding my weight gain, I finally hit 47kgs today. Wow. To some people that's probably nothing but it makes my BMI over 19 which is great and a figure I've never been anywhere near before, my highest ever recorded weight at Papworth was 44.3kgs, so I've totally smashed that and I just seem to keep increasing every single week, it's crazy, soon I'll be told I need to lose weight! Very strange :)

Thank you for reading.
xxx

I'm Still Here :)!

Hello everyone, wanted to write a quick blog to let you all know I'm still here, lol! Had a few concerned emails/facebook messages regarding my absense so just wanted to apologise - I have been pretty unwell so have been spending a lot of time relaxing and catching up on much-needed sleep, I've been trying to preserve my energy as much as possible as I don't seem to have much of it anymore, so even the most simplest task of turning over in bed, or getting up off the sofa is exhausting, brings on a coughing fit and makes me extremely breathless, so I haven't been on facebook much, just the odd browse through once a day. I also have had a cold and tonisilitus, because my nasty body wanted to punish me even more!!! I have had a mini break from IV's but I'm going back on them Wednesday as the cold has knocked me for six.

I'm happy to report I was able to go out for a meal with Josh the other night, which was lovely as other than hospital appointments I haven't been able to do too much lately.
I had breaded brie for starters, gammon and chips for main and pannacotta with sorbet for dessert, yumyum!!
It was so lovely to get out of the house for a bit (even though I am paying for it now, silly lungs)
Josh and his Dad are currently transforming our garden which is great as it's giving him something to do other than being my full-time carer, I'm glad he is still able to occupy his mind because even though I'm quite content sitting in watching TV and not doing too much, Josh isn't like that. He's also been going for bike rides, going out jogging, and going to poker when somebody can 'babysit' me lol.
Our garden is coming along great - we've got a nice new patio area, fake grass as it's easier to manage and stops the pups digging! He now has a nice little section at the end where he's growing things like peppers, strawberries and beetroot etc. They've also made the front garden nice and pretty with flowers and new grass :) obviously it's all still 'work-in-progress' but here is two photos of them currently.

Back Garden

Front Garden

I want to finish with a couple more pictures of myself, the first is a photo showing my weight gain between now and October 2010 when I weighed just 5 stone, as you will see I look very thin and I can't even believe I ever looked that underweight, people tell me now how healthy I look as I've put on just over 2 stone and looking at this picture I can totally see it now!!
My goal was to get to 7 stone even though I never thought it would be possible, but I've totally smashed that and I did make the picture about 2 weeks ago, since then I was weighed again and it was 46.2kgs. I was so stunned, totally emotional and extremely proud. Never did I think my BMI would ever be in the healthy range. It is taking a lot of getting used to, I've never had a 'belly,' I've had to purchase loads of new clothes as I've gone from a size 4, to an 8, I even got a size 10 the other day, which was most definitely a first!! Aside from the annoying belly issue I am rather happy because I now have boobs and a bum, lol!! Soon I will be told I need to diet hah!
The other pictures are just a couple of randoms...

Thin me - Fat me LOL!

The Pups always look after me when I'm feeling poorly x

The Pups and me are in prison, although Tink seems pretty happy about it!

Hellooo World! :)

Pre-Meal - I wanted to have a photo without oxygen on, it's weird so used to seeing tubes across my face lol.

So there you go, just a couple of photos of yours truly!
Thank you for reading and I apologise for anybody that was worried about me - the gap between now and my next blog will be shorter I promise!
xxx