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