Update- June 2012.
Im now 29 3/4 years old and have had my amazing double lung transplant. I am 6 months post transplant now and can’t believe how lucky I am to be given this wonderful gift of live. This blog now follows me making the most of every single extra day xx
Hi everyone,
For those of you who don’t know me, I am 28 years old and live in Jersey with my husband Phil and our dog Disney.
I have a very rare genetic illness called Ehlers Danlos Syndrome which in my case basically means my body does not produce a certain type of collagen needed to keep skin, tissues and joints healthy. For me the main problems are with my lungs and I have ended up with end-stage COPD and I am desperately waiting for a double lung transplant, i joined the waiting list in June 2010. My last lung function was measured at 12% so I don’t have too much time to waste.
I have given you the link to this blog so that you will be able to follow my progress on the lung transplant waiting list. If and when I am lucky enough to be offered a new pair, then all info and updates will be available on here as it will be extremely difficult to update many people individually.
Let’s hope I have some positive news to post on here before too long!!
Love Kerry xx
- Me and Phil!
Our Baby Disney!
British Lung Foundation
Don’t take your organs to heaven with you, God knows we need them here!
Live Life Then Give Life
Transplant Tales 
Hi my love,
I had no idea you were unwell, I’m so sorry to hear that. I have become a little disconnected with the Rock over the past few years unfortunatly and “facebook” only tells you so much. I saw your wedding photos you look beautiful! Congratulations sweet! My family and I wish you all the best for the future and we’re sending lots of healing thoughts and prayers in your direction.
Lorna xxx
Testing from Kim!
Hi Kerry,
No wonder you’ve been feeling pretty down in the dumps! I celebrated my 30th Wedding Anniversary last week, then pulled at least one muscle in my back on Good Friday while out with my crew water-skiing. On Easter Sunday I was reduced to taking photos of the others whooping and whipping back and forth across the wake in perfect conditions. Frustrating? Absolutely! It’s my passion to water-ski and I had got everyone to expend a super-human effort to get the mooring laid, the engine serviced, anti-fouled, new cover fitted, tractor-launch at La Collette and friend to guide us round to St Cath’s ‘through the gutters’ (hairy or what!), another friend to take the trailor back to my home at La Hougue Bie, another crew member to meet us at the mooring with a dinghy….since the weather has been so extraordinary and I wanted to get out there for an early season! In perspective after catching up on your blog? Yes – nothing wrong with me – except perhaps I’m trying to do too much for my age! Happy Anniversary, and Happy Easter. Scoff those eggs like they’re going out of fashion … Thinking of you loads.
Hugs,
Jane xxxxxx
Dear Kerry
You will not remember me but I am a friend of your mother. You will not even know how much I have been thinking of you over the last few years. This is just to say that I am hoping that the all important phone call comes soon and I shall follow your progress now that I know about this blog. Wishing you all the best. Jane Le Marchand
Hi Kerry
We will be checking out this blog frequently to see how you are getting on.
Really hoping you have some news soon.
Thinking of you lots
Lots of love
Ruth Hayhurst xx
Hi Kerry, – I’ve never logged onto a blog before; – however, I’ve read what’s happening at Brian and Hazel’s house this evening. Keep up the good work. I co-ordinate the St. Ouen’s Prayer Lighthouse – and you’re on our prayer agenda – and will continue to be so. I had a cancerous kidney removed 18 months ago – and know just a little of what you must be going through. Our prayers are very much with you. Take every good care of yourself – and be assured that those looking after you will do a brilliant job.
Every blessing.
John W.
Hi Kerry
Not sure how to work this blog thing, but hope you get my message! Thinking of you before we go to Ed’s party and wishing you were here, but i know you will be thinking of him. We have the girls and my mum over at the mo and Gari’s dad. They have come to say bye to the girls as they won’t see them for a year now! We have been inundated with visitors hence the silence on our side for a while. Will be in touch very soon and tell you all news, all love, Helen xxxxx
Hope you get your call soon.
Disney is gorgeous!
LH
x
Lovely Kerry,
I LOVE your blog – what a fabulous idea to keep us all updated on your highs and lows and, most importantly, your progress!
Just want you to know that us Egre’s are all thinking of you and wishing you well. You’re such a tough cookie with the most admirable strength and spirit…this, along with the support you’ve been getting from your loving family and positive energies sent from friends near and far, will continue to pull you through this difficult time.
My dear friend – keep fighting! And we’ll all be here for you to help you with your next steps once you return to Jersey 🙂
Lots and lots of love, your old pal Alex xxxx
Hi im glad you are doing so well, Im from Jersey and had a double lung transplant in 2009 at Harefield. and everything in your blog brings it all back ,the best moment is when you can talk all day no more writing. I hope you carry on improving and get discharged soon and back to the rock, If you waant to talk to some1 who has been through it email me.well done keep fighting regards Graham.
I love ur story very much. Now is over and ur on way to recover, so u have to be strong enough and optimistic and deirminte to achieve ur goal and face all the problem u had when u were weak!!
I wish u all the best from my deep heart and recovering well and come out to a new life
Dear Kerry
It’s wonderful to see that you are doing so well. An inspiration to us all.
Thinking of you everyday. All our love
The B-C’s x x
Hi Kerry
I’m Sue, (Rachael’s mum) She has told me all about you, and I have been keeping up to date with your progress. I am so pleased that you have had your transplant and Its wonderful news that you are doing so well,
Hello! I hope you are doing well. I too have had a double lung transplant(Melbourne,Australia). My transplant was Dec 2011. Reading about your journey&seeing your hosp photos brought back a lot of memories! Its SO amazing what we have been given,a chance at life again&what we can do again!! I know all too well about down days,side effects to medications,the sometimes endless DR appts,etc. Its fantastic to know you have this site,you are definitely inspirational! oxox
Hi Kerry – I work for BBC Radio 4 and am doing a story on transplants. Would be great to speak to you. Can you email me chris . wimpress @bbc.co.uk with your number, possibly?
Simply wanted to inform you that I found your blog on
and even though I appreciated reading your article, it appears
your blog acts up in a couple browsers. If I look at your blog in Safari, it looks fine however, when opening in Firefox, it has a small amount of overlapping issues.
I simply wanted to offer you with a quick heads up, that’s all.
Thank you for letting me know, I will try and have a look into it! 🙂
Just wow! go on Girl, Your an inspiration to us all, Kevinx
Hi I have a neighbor whose 47-yr old daughter is waiting for her second – yes, her second – double-lung transplant. The neighbor just told me, very tearfully today, that his daughter is deciding that she no longer wants to go through with this second procedure. She wants to call it quits and let nature take its course. He understands that – but is deeply saddened by it – and is hoping that someone somewhere can help her to change her mind. He asked if I could find someone who has successfully gone through two double-lung transplants who could communicate with her about it. Would you have any idea how to find such a person? And might you possibly have the energy and willingness to make contact with her to discuss the unique experiences, thoughts, and feelings you both have been having? I totally get it if you’re not able to. I’m just asking. Thanks. ~Janet
Hi Jan, thank you for your message- I will find you on Facebook and reply on there. Of course I am happy to help 🙂
Ihi kerry am michelle i live in Liverpool loverly little village called crosby i need a double transplant lungs due to being prem x have to go back to see trasplant doc after xmas i have 7 k c c just like your lovely baby sitting her now with no help money wise or mental y to help x so got on my phone and googled and there you were xxx thanks kerry you’ made me smile xx just wont to say that feeling a bit down today xxxxx
Hi Michelle, thank you for your lovely message 🙂 My blog is neglected these days but its lovely that it is still helping people and also putting me in touch with new friends 🙂 I have found you and added you on Facebook so hopefully we can chat more on there. Hope you are ok xxxx