Monday, 31 December 2012

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

122 comments:

Missy Roark said...

I will raise my water pitcher here in my hospital room in Indianapolis, Indiana for Kerry. I hope and pray that her new lungs are SOON and PERFECT for her.
Great job on the guest blogging. Seriously, it was good! :-)

smeg91 said...

Great writing Josh can relate to everything you say. So hope Kerry gets the call soon, will be thinking of you both. Jo.

Jo said...

great first blog! will raise my glass for kerry tonight, praying you get the call any second!!!! x

Anonymous said...

Thank you so much for updating Kerry's blog in such eloquent style. I can't tell you how much you have both been in my thoughts over the Christmas period and how many times I have looked at the blog hoping for the update that means Kerry has been offered new lungs. God bless you both. I will continue to pray that the call comes very, very soon.

Jojo67 said...

Josh, ur blog was great. It's good to see your perspective on things and obviously it come across just how much you love & care for Kerry. I think you are both such amazing people who really deserve a happy HEALTHY future together- so come on harefield, make that call!!!!
With all my love & prayers to you both, god bless xxxxx

Anonymous said...

Prayng you get the call, god bless you both xxxx

Little Harriet said...

Beautifully written blog. Everyday I check Kerry's blog hoping for an update saying she has new lungs at last, I hope the start of 2013 brings her that gift.
You are all in my thoughts.
Xxx

thenymph said...

Sending you, and Kerry of course, all my love and positive thoughts. I really do. And Josh, you are so good for Kerry, you are a very strong couple. Stay strong ...
Praying for a phone-call, too.
Jane xxx

Anonymous said...

An amazing blog Joshua, well done! I'm glad that Kerry is obviously feeling a bit better being able to write on fb again. I know that Kerry needs new lungs desperately and i truly hopes that she gets them but I think that it is a bit insensitive of u, Kerry and all the others constantly saying that u hope she gets the call today because if she does it means that a child will have died and that someone has lost a son or daughter. I know it's a difficult situation but please just be mindful of this.
Happy new year and hope to read more of your blogs in the future!

Anonymous said...

Josh u are an absolute saint looking after Kerry the way u do, it must be very hard and such a strain for you. Well done! Theres not many men that would put up with what you have to, give yourself a pat on the back!
Happy new year to u!

Anonymous said...

Anonymous,

I don't think Kerry or Josh are actively thinking of children or people dying when they say they hope the call comes soon. As everyone is, we want the people we love to be okay and that means Kerry getting that call. If you read some of Kerry's posts etc, without even knowing her, I am sure she will be eternally grateful to the person that allowed her to have the transplant.

Kerry and Josh I hope you get the call soon xx

Anonymous said...

Wonderful blog Josh. Kerry is always in my thoughts Hoping your New Year starts with that call! xx

Brian said...

Well done Josh! Love to you and Kerry, see you both soon.

Brian & Carol.

Scarletpower said...

Great blog Josh xox I have only just connected with kerry on facebook and hope that one day she will maybe be up for a chat. Every morning i wake up and hope i will see on facebook that kerry has got her call, i really (hand on heart hope it comes very soon). Keep fighting both of you loads of love and best wishes for the new year xox Tracy Bavister and family xox

Anonymous said...

Josh. that was an amazing blog. i have been following Kerry through a friends facebook and am in awe at how strong and positive you both are. What great support Kerry has and how well she does to keep fighting. i truely hope you get the call today or very soon. good luck to you both. x

Anonymous said...

I too have been reading Kerry's blog and her need for transplant and I hope that she gets her call. But I also feel uncomfortable with the posts about her getting her new lungs quicky with it meaning someone has to die to get them especially at this time of year. It will always spoil the special time when people should be with family as someone is missing (I know from personal experience). That aside I DO hope that she hangs in there for her call to come.

Anonymous said...

I also have Been following Kerry story for quite a while now, I know somebody tht was a donor and the hurt that went through the family was horrendous. (something which will never ever truly be got over) and it sickens me to read nearly on a daily basis that Kerry hopes she gets 'the call'
Please think of other families too, you're not the only ones that are suffering!

Joshua Nelli said...


There have been 3 negative comments on the blog i wrote for Kerry last night effectively saying we are wishing people dead!! CORRECTION we are not wishing for anyone to die, however if something extremely unfortunate was to occur in their lives, we hope and pray that Kerry will benefit from their lungs!! Surprise surprise it was left by an anonymous poster! If you have something to say on the matter I would be more than happy to discuss it with you personally!!

Sarah Milne said...

As always, I am sending love and hugs. 'Anonymous' - We were at the same stage as Kerry and Josh waiting for my son to have a bowel donated. Each day we had to pray the call would come because he was dying before our eyes and I really struggled with the fact that, in many ways, I was praying each day for another mum to loose their child. Then, someone said to me you're not praying for that at all because that happens sadly and will happen. You are praying for someone to say yes when it does. If there is going to be a tragedy tonight, Kerry's need for transplant and our prayers will not make it happen but we just pray the family say yes!! The something good can come out of it and, believe me, it does for the donors too. They get so much from the pride they have in their loved one's last act of saving lives and being a hero! xxxx

Sam said...

I have also been following Kerry's blog for a long time. Like everyone else, I am crossing all my fingers and toes that she gets the call ASAP.

I'm also a registered organ donor and have been for a few years. To the above comments, I would sincerely hope that if the unfortunate were to happen and I did die, that my family would take some comfort in the fact that I was helping someone (or a few people) like Kerry to live. I think it's quite harsh to call someone whose desperate for an organ and their loved ones insensitive. People do die prematurely in accidents and things, and it is tragic. If something positive (another life or few) can come out of that, then why not? Stopping organ donation doesn't give back the person who died, it only helps someone else live. Maybe those critical of the practise should give it a bit more thought! I'm pretty disgusted that some people are 'sickened' that a very sick girl is hoping for new lungs in order to live.

Kerry - you really are an inspiration, and I hope you get the call soon.

Gem said...
This comment has been removed by the author.
breatheducky said...

sending ALL the love in the world! fingers crossed for these lungs!

A Jay said...

Hi Josh, I don't know you or Kerry but I've been following your story and I so hope you get your happy ending.

The negative comments are from trolls. Just trolls. Pathetic. Don't let them get you down.

James Stephenson said...

To All those who have left Anonymous comments that are negative.

How Dare you say such negative things to someone that is practically hanging by the skin of there teeth.

Kerrys Blog brings tears to my eyes (salty Tears) I Too Have Cystic Fibrosis

Say nice things or DONT BOTHER

James

Anonymous said...

I apologies about not making my comments about what I was saying clear enough. I was not refereing to Kerry or Josh's posts but it's the replies that came after which make me uncomfortable. I have children and at present I am undecided if any thing happened to them (actually same goes for hubby) about organ donation. I'm hoping that Kerry's (and Josh's) journey will help me make my mind up if anything did happen.

Kirstie Tancock said...

They arn't hoping for someone to die, that's not what you wish for when waiting for transplant. You realise that somewhere somebody will die, statistically thousands of people die in the uk everyday. if we could save them then we would, our amazing health care has fought hard to do everything they can, unfortunately they cannot be saved but there is the possibility that they have taken the brave self less act to donate. We are hoping that, the poor person who has died thought they would like to save someone's life. That there family in a dreadful time had the compassion to save someone else's life.

My donor and there family did, I am forever grateful and thank them everyday with the beautiful breath I take, there gift to me. If I could have saved them over my own life I would of, but that decision wasn't up to anyone. Fate had already played its cruel and kind hand.

Fiona said...

Please please understand what organ donation is and how it can help so many needy people out! How insensitive can you get by thinking people just want others dead for there organs..Things happen and not for wanting it to but surely you would want your loved ones to help others enjoy mayb a few more years of there life! Stop being so negative on blogs that people take time and effort to write from there heart and if you don't have anything nice to say then keep it to yourself! Love ya kez and here's to 2013 a year of new lungs xxxx

Anonymous said...

To Kerry and Josh: thinking of you both and hoping you get that call. hang in there. You are amazing with how you cope with this.

(To the three anons criticisng Kerry and Josh: all I can say is what is wrong with you? how pathetic and cowardly. if someone in your family was very very sick and needed a transplant desperately, you would be hoping or praying too to get that call, so that they could have a chance to live. of course it has nothing to do with hoping someone else dies, that's a ridiculous way to interpret what Josh said.)

Nichneven said...

I don't know Josh or Kerry either but I heard of this blog through a friend who has CF. I do know what it's like to lose a loved one and I'd rather their organs were used to help someone else. To those 'Anonymous' people who have posted negative comments, you really need to get a grip and look at the bigger picture instead of being narrow minded and petty. No one is wishing anyone dead, use your limited intelligence and actually THINK about it. The whole point of organ donation is to help someone else to live after your death. Surely that is better than two lives being lost when one could be saved? Those brave 'Anonymous' souls need to have some empathy and admire Kerry and Josh's courage and determination instead of finding fault and placing themselves on some extremely dodgy supposedly higher moral ground.

Kerry, I hope you and Josh get the call you so desperately need very soon. Wishing you luck and happiness.

Anonymous said...

My partner died tragically in a motorcycle accident just over a year ago and it has been heartbreaking dealing with he's loss...but I wish he had been a organ donor, it would have comforted me that through he's tragic death he would have been able to help someone else.
I am very disappointed to see negative comments from others saying that you shouldn't wish others dead, unfortunately death is a part of life, no one wishes this to happen.
My prays are that Kerry gets her call VERY soon for her lungs!
I hope the negative comments give her some fire in her belly, ignorance from others should be ignored.
Janine xxx

Tracy Hinscliff said...

Aa wife of a Transplant recipiant I know how difficult that was for you to write but you wrote truly from the heart which I know is heartbreaking for you.My hubby recieved his lungs from Harefield so have been following you and Kerry's journey dropping in each day hoping and praying that call had come. I have no words that I can say that will help you through this I felt so helpless but I personally know what a difference it does make when you recieve such thoughtful caring supportive words about Kerry who you love with all your heart through these blogs. All I can say is Dave only had days not weeks to live when that call came so I pray with all my heart that happens for you both soon. Sending love and strength to you both XX

Pam's Thoughts said...

Almost 4 years ago, my daughter was also listed for a lung transplant. She was 13. It is an odd thing to need a set of "New" lungs because you can't just go buy a set on sale at the local market, it takes the loss of life to gain a life. But in that sense it's a beautiful thing to see life continue. No, I never could pray for another mother to lose her child so I could keep my daughter, and I know that this young couple is not praying that way either. BUT WAKE UP PEOPLE! Unfortunately death happens and if a life can continue in replace, it's a beautiful testiment to the donor's life. My daughter didn't not receive her transplant and went to Jesus on Memorial day. In the USA this is a day we remember the soldiers and loved ones we've lost. I hope that a new beginning lies around the corner for Kerry. Not because someone will pass from this life, but because someone made the decision for their life to continue after they were gone.

Kiz said...

Amazing how all the people saying it SICKENS them that Kez keeps hoping the call will come, have kept their name anonymous. Cowards, the lot of you.

Kerry is not hoping someone will die. Regardless of whether she gets her lungs or not, the people that MIGHT save her life, are going to pass away anyway. It wont be Kerrys wish for new lungs that has ANYTHING to do with it.

Im sure she will thank her donor every day of her life, when she gets the call. So, she is not wishing someone dead, she is hoping that from someones death, her life can begin properly.

handbags said...

keep positive kerry & Josh, I hope 2013 will both bring you a future together. for those people out there do something positive and become a organ donor, you never know when you may need one.

staciep90 said...

Hey Josh and Kerry!

Such a good blog Josh you should do it more often :P

... and to the "anonymous" people what the hell is wrong with you?! Seriously?! People like us who are on the list don't wish for people to die, we just wish for the people who are going to die regardless of whether some one is match for their particular organs, to say yes to donating their organs. Seriously how can you comment on something you clearly have no clue about!!! You're sickened?! I'm sickened by you people who think it's necessary to bring someone down who is clinging to their life by their teeth. YOU are the insensitve MORONS!!!!!

As always Kerry massive positive thoughts going your way

Much Love
Stacie xoxo

kelly said...

Thats not what Kerrys wishing for at all or any other person on the transplant list. I dont understand why uve said u read Kerrys blog and think that shes wishing for someone to die. You obviously either dont read it properly or dont have any knowlegde or interest on cf or the transplantation process from both ends(donor and receiver) otherwise you and the other two ppl wudnt be saying that. I dont understand y u read this blog if ur not learning anything from it.

I myself have lost close family at xmas and its heartbreakin but knowing that they maybe able to save anywhere up to nine individual lives is pretty amazing and something to be so proud of, even after someone has gone (as they already have passed, they are not killed for organ donation) they can help people and provide a better life for someone who has litterally no life.

Anonymous said...

Glad I kept myself annoymous. I did hope (and still do) that Kerry gets her op. I wish her the best and hope it's soon.

To the posters I am not a sad looser or lonely, or ignorant , just crap at putting down in words what I wanted to say.

I won't put anything else as it will be taken the wrong way.

Anonymous said...

Josh you are just the most amazing man I think
I have ever come across, I have CF and I don't think my boyfriend would step up the way you have so thank you for loving Kerry enough to put yourself through this I know You are Kerrys world ( I don't know you both but just from reading her blog it's clear how much you mean to each other) I am praying you get the call tonight and I pray that all your dreams come true in 2013. To the anon posters I hope you are ashamed of yourselves you low
lives you clearly have very healthy loved ones who are not living this hell but to the one who has kids please stop by if you find yourselves praying for your own children's lives so that we can remind you how there is no way you should be hoping your child gets the call if that means someone else has to die!!! do you have any idea what it's like to feel like you are suffocating daily? to be 21 years old and have your life ebbing away in front of you? no cause you don't so why don't you go back to your oh so perfect life and leave the comments space for people
who want to support these 2 amazing people
and who want to wish to hell that this call
comes because that's what we will be doing
and proudly so.... get knotted!!! Claire Wareing 28 with CF sorry had to post anon as I don't have the accouts listed below

cfer said...

Kerry, Josh, I have said this before, I'll say it again - you are heros for coping with what you do! Ignore the idiots who comment otherwise behind "anonymous" as a name. Stay strong, don't let them upset you. Both Josh and you say you're both stubborn so prove it, and wait the call out, and then make your donor proud, and live the life you deserve to lead, together! Thinking of you both
Dave

peihome said...

Joshua, what a wonderful post. I've often thought how difficult it must be for you to see Kerry so sick, but you are standing by her day and night and that must mean so much to her.

Organ donation rocks. My goodness if I died tomorrow and knew that my various organs (the healthy ones, lol) were to save several lives, I would be thrilled. Well, I guess they WILL save someone as I AM on the registry!

Sending lots of warmth and prayers your way.

Sechen said...

How awful to deal with the small mindedness of internet trolls. May you get your new lungs.

sarah chisnall said...

As a family member of Kerry, I think u should remember how lucky u are to have healthy children and not in the terrible situation that Kerry and josh and our family are in.
Nobody in their right mind would wish anyone else to die in this situation, but a life could be saved if people would join the donor register, as u never know, one day u might need one.

Norman Fair said...

Hoping and praying that you will get the call. You both are amazing I read your blogs frequently, your support and love for each other is so obvious. The anonymous comments posted regarding you waiting for someone to die are incredible and come from ignorance, nothing else. It is never an easy subject but many donor families are indeed comforted by the knowledge that something good has come out of something so tragic but of course this won't bring their family member back. Kerry, you just want to continue living and the 'gift of life' from a donor will help you to do this. I had a liver transplant 6 years ago and not a day goes by that I don't thank my donor for his gift and also his family for honoring his wishes despite their grief. Wishing you and Josh the very best x

Anonymous said...

I came across Kerry's page on fb a couple of months ago...through a friend's post..since then i find myself checking her progress and whether she has managed to get her transplant as yet..my daughter is a carrier of the condition,so even though she is not directly affected by the condition i became more aware of it and the devastating reality of how people can suffer with it ,a couple of years ago....i really hope that Kerry gets her call soon,don't be disheartened by negative comments,you have every right to be wishing for that call to come....and most people realise that you are not wishing harm on others in order to get it :-)...

Mark W said...

As someone who had a lung transplant and was waiting to die. I understand some of what Kerry is going through.
Josh what you have to cope with is so hard too! I saw the effect waiting had on my wife & family and it has took a long while for them to get over it all.
People who haven't been though the waiting have no idea what it is like, hence the small minded comments seen on this post.
Josh I'am sending out all my best wishes, God bless you and Kerry.But special respect to you for your unwavering support of Kerry throughout this frightening time.
Love the blog post and would love to see more in the future, stay strong mate!!:)we need you to write up what happens when she gets her Tx
I am still praying for that call to come very soon, here's to a new start in 2013 with new lungs for Kerry

gemzi25 said...

Dearest Josh, your blog was wonderful and I do hope you get the call soon. 2013 is going to be an amazing year for you both.

I read Kerry's story in the Evening Star about a year ago now I think. I have never ever liked the idea of giving up my organs in death BUT Kerry's story changed all that.

I signed the donor list and I'm proud. If when the time comes I like to think that I have saved someones life.

Keep holding on Kerry the call will come sweetie I know it will. You are an amazing person.

Keeping you in my thoughts and prayers

Big hug xxxx

Anonymous said...

The anons posting clearly dont really understand organ donation. Firstly, people die, there is nothing we can do about that and it is a fact that there are more deaths over the new period. That will happen whether we like it or not, but either some of those on the list will also die or, thanks to the amazing generosity of the deceased and their families, they will survive and be given the chance of a new life. When you wish she'd get the call, you wish someone has signed the register or said 'yes', their death is the inevitable part, the changeable bit is whether or not they chose to save another life. Also to say Kerry shouldn't wish for the call but you hope she "hangs on in there to get it" suggests to me the usual misunderstanding about transplant, people cant go on forever waiting, its urgent and without them they cant last very long. Quite simply, she's wishing and hoping to live, and no one can criticise her for that.

Charlotte Turner said...

Beyond disgusted at the negative comments on here to the latest blog post. When Kerry gets her new lungs, yes an ADULT, not a child, will have died which is devasting, but that person will have chosen to do a wonderful thing, give the gift of a better life to someone. Without this gift Kerry will die, so tell me this, what would you want if it was your daughter, son, sister or brother, would you turn down a chance at life for your loved one because someone else had died? I think the answer to that is no so maybe think a little before you post such hurtful and cruel comments to a young girl whose never really lived and who is hanging on by a thread.

Kerry and Josh you deserve the chance of a normal life and I, and everyone elsn here, continue to pray for that call xxxx

Anonymous said...

I think that what i was trying to say has been taken the wrong way. I want Kerry to get her new lungs but what i was trying to say is that someone else is going to have to die for that to happen. It is very difficult to put into words what im trying to say but it just comes across to me that Kerry is so desperate to get her new lungs, (which of course she is entitled to) that she's not thinking about the consequence behind that. I hope that it makes more sense now.

Tanya said...

An amazing blog Josh, very well written. I think you do really well looking after Kerry. It cant be easy for either of you. I really do hope that things work out for you both and 2013 will bring you a happy and healthy new start, so you can begin to live your lives with new lungs and start to live properly and normally again, having lots of fun and frolics along the way!

Anonymous said...

I have been following Kerry's story for months now. Both her and Josh are incredibly brave and an inspiration to us all.
Until now I would never have thought about organ donation but now it will be an absolute must
Keep up the positivity guys!

Anonymous said...

If ur son, daughter, partner, mother or whoever was in kerrys situation u would be saying the same. they not even saying it the way u make it seem!!!! She is deaperate for new lungs. my.daughter has cf and needs new lungs id be fighting as much aa poss for them
people need organ doners and blood doners. if they are to pass unfortunately the organs are put in a bag and put back inside you
what good is that when theh can save someone elses life!!!! Not being funny do u have any family.member fighting for life if u did u might not think in such a negative way!!!!!!!! As a mum of a baby with cf i pray for a cure for all. can u imagine living not knowing if the one person u love most will make tomorrow? If the answer is no ur lucky and have absolutely no idea the pain and heartbreak ppl with cf and their families.go through or other ppl fighting to live or watxhing their loved ones fight dor just one more day. stop the negativity and show some bloody empathy

Jen said...

Kerry has been in my thoughts and prayers over this holiday period. Life has returned to "Normal" now for so many of us now that the holidays have passed.
I hope for you, Kerry, her family and friends that a fabulous new version of "Normal" can start for you all any moment now when Kerry gets her call.

Don't give up, "it's always darkest before the dawn" push on and power through. You all CAN do this.

xx

Anonymous said...

Hi keep fighting Kerry u can do this I will pray so hard for u x my cousin Anthony died last year of cf and I know the despair of wanting an organ for a loved one x I work in theatres and have seen a organ donation take place its the best gift anyone can give keep fighting sweetie u can do it xxx

Alexandra said...

What an incredicle blog Josh.. almost but not quite up to Kerrys standards :P. As a long term reader I just wanted to say how much I hope you and Kerry get those lungs she needs, keep strong, everyone is behing you and thinking of you.

Tony Hesford said...

Is there any chance that you could put ALL of Kerrys stats down on a blog (blood type etc etc ) and post to other hospital blogs (not just in the UK) is this naive of me ? I know that Harefield will have an active register ... but is it worth a shot anyway ? Tony

Anonymous said...

Tony: unfortunately, no. that's not how transplantation listing works. Even if it was, it wouldn't help to contact hospitals outside the UK as they wouldn't be able to get there in time for the lungs to still be viable. Though it is possible to be "dual listed" at multiple transplant centres (in the same area), at least in the US.

Anonymous said...

Hi Josh and Kerry, I've been following your blog for a while, I keep checking back for good news. I just want to say I think you're both amazing, how you stay positive and keep on fighting. I am keeping my fingers crossed and hoping that call comes through for you any minute now and that 2013 is the best year for you. Take care and stay strong. G xxx

Anonymous said...

Josh & Kerry,
thinking of you allot recently and hoping that the call comes soon.
your post struck a chord! I also have CF and am on the transplant list for lungs, even though I am not yet as ill as Kerry we still do a fair bit of phone watching & every night I think 'could be tonight'.....
much love to both xx

thenymph said...
This comment has been removed by the author.
thenymph said...

I think of you both every single day, and I send lots of love and positive energy to you.

J x

Anonymous said...

Hang in there Kerry. Your call will come. Thinking of you and sending you all the best.

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Where is an update?! Hope all is well x

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Sparkling Love said...

Hello Sweetheart! :D How are you doing?

How do I contact her?
I'm O- blood type and would love to be a donor for someone looking for a donor.
My name is Melissa. I'm 31, a female :) and live in Southern CA. I lost my brother to CF, who didn't get a transplant in time since here you also need a backup donor.

My e-mail is sparklinglovexo at gmail dot com
I appreciate not being sent spam by spammers. Thank you. :)

I'm praying for you!
Love, Hugs and Kisses and God Bless you!
Love, Melissa <3

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