Wednesday 4th January 2012

4 Jan

Today it is 6 weeks since my life saving transplant and time for the first update from yours truly! I wanted my first post to be a bit more in depth but it’s taking me a while to think about everything I want to say so this will be an update on latest news then at some point in the hopefully not too distant future I will be writing about the ‘transplant tale’ from my point of view and my thoughts on it all etc!

Today started with a visit from Mr Simon, my surgeon, he just popped in to see how I was doing which was nice. He seems very pleased with me and was more interested in what bovril was (I have a pot on my table which I put on my toast in the morning!) can’t believe he has never seen it before!

So the updates…. Im still finding everything very tiring so bear with me if it’s a bit disjointed!

No longer have the acid reflux I used to have, I seem to be able to eat everything I want to which is just great given I lived off jacket potatoes for the last 4 months before transplant! I am still having major tummy troubles which is very uncomfortable and gone on a long time now. I’m told this is a combination of drugs, body being so weak and being tube fed only for a few weeks. My tummy is just taking a long time to settle but will do eventually (just hope it’s soon). 

I’m also suffering from bad nausea and headaches and I have managed to catch a cold this week. It’s not on my chest so hopefully will stay that way. These are all little problems but add together and just make you feel a bit miserable! The only other problems I have are itchy feet which drive me mad at night (medication is to blame) and numb legs which are still very weak and stupidly thin! Again this will resolve over time.

Now for all the good news and achievements:

Walking is coming on well, am now using a stick only- unless I’m very tired or wobbly then I use the frame but that slows me down!

Weight is going up slowly but increases everyday at the moment. My body is burning a huge amount of calories at the moment. I’m loving being back on the coca cola but sadly I seem to not like chocolate or Capri suns much anymore. The meds can change your taste buds. I’m not having any extra feeding or supplements and it’s just lovely to have my face back and no horrid tubes.

I’m wearing proper pyjamas and washing etc myself which is very nice and I don’t get breathless doing it! I need to get some proper clothes brought in and start being normal again, going to be weird after 2 years of wearing pjs! I’m also walking to and using a proper loo which is just great (it’s all the small everyday things you appreciate!). Iv just had a proper shower and hairwash like a Normal person which was just lovely. Can’t wait for a nice bath at home now.

I have been on the exercise bike to build up my leg muscles and I’m now starting on the stairs, this is the final thing to master before I can go home.

Dr Carby just been in to see me and said he has never seen me look so well. He is really pleased with my progress and was amazed it’s only 6 weeks since my op, he said iv done incredibly well especially given my state before transplant. We are set for home on 18th Jan (2 weeks today) , I just need the physios to be happy with my mobility, which isn’t quite there yet. If I conquer the stairs quickly then I can go before 18th. The Physio is coming back this afternoon to try some steps. Going to try really hard….

My trachy hole is healing but not enough at the moment so waiting for that but it won’t stop me going home now.

It shouldn’t be too long before I can come back to Jersey but it all depends if I get infection or rejection episodes. The first year is often tricky and you should expect a few problems but most of them completely treatable. For now  Aunty Jane is kindly letting me come back to her house til I’m ready to travel and it’s exciting as I’m going to have an upstairs bedroom! My poor cousin has had to spend Xmas clearing his room out so thank you James 🙂

Had my last stitches out yesterday. Aunty Sue was here to keep me company  and had the privilege of being the only person so far to see my scars. They are just amazing, two tiny neat lines wbich have already healed and faded. Goodness knows how he got the new lungs in! The huge benefit of having the surgery this way is they don’t break your sternum which all other surgeons do. This must save a considerable amount of pain because I really have hardly had any from my chest the whole time. I stopped any pain killers about 2 weeks ago, just taking normal paracetamol for my headaches this week.

Doctors have also started to reduce my medication and I am self medicating. You get given a ‘blue book’ which is your bible. Every day you write all ur medication out and times to take and also record your temp, weight and lung function. If any of these change by a certain amount you have to call Harefield and they will see you. There is so much to learn!

I had my first lung function tests with my new lungs yesterday and am really happy with the results. I was hoping for 40% as my starting point but the nurse warned me it might not be. My old lungs were 12% 6 months ago and yesterday’s scores were fvc 49% and fev 55%. and this will continue to improve as I get stronger and use the lungs more. It’s all just so amazingly clever. The team of doctors and nurses here are just brilliant.

So now I am having a Ct scan this week which will be used as a baseline for the new lungs. All my bloods and meds are stabilised and I’m getting my own spirometer so I can do my own lung function. Apart from that it’s just eat, put on weight and get stronger with physio.

All in all, great news and I’m really happy with it all. It’s just so amazing not to even think about whether you can breathe. I just can’t believe it’s all happened and I’m well now. 

I know it’s been said a million times but I can’t post and not thank everyone for all your lovely messages, support and prayers. Not to mention cards and presents. They have all helped me so much. This has been an incredibly hard journey but I’m really starting to feel the benefit now and for the first time in my life my body is behaving and doing what I ask it to (well with the exception of my tummy!)

I also want to ask you to keep my donor and their family in your thoughts. Their kindness is the reason I am here today and I will always be so grateful for that.

I am sorry I can’t reply to everyone individually, I have literally had thousands of messages! You are all so kind and I can’t wait to be able to catch up with you all when I’m back.

Gosh this is a long post, only meant it to be short! That’s another thing, I can’t stop talking! It’s just so easy compared to what I’m used to. I think I’m the only one enjoying this bit though!!

Lots of love Kerry xxx

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17 Responses to “Wednesday 4th January 2012”

  1. Sue Devereux January 4, 2012 at 2:27 pm #

    Hi Kerry

    How does it feel to be a celebrity receiving thousands of messages? How lovely to have so many friends caring for you. I was very honoured to be mentioned in today’s blog and it was wonderful to see you looking so well yesterday.

    Please can I book you in for two visits. That way perhaps I can get Laura and Alex’s rooms cleared out 🙂 in turn!

    Keep up all the good work – I know it requires a huge amount of effort and determination but you have been a superstar on both counts.

    Lots of love

    Sue x x x

  2. Alison Chevassut January 4, 2012 at 2:34 pm #

    Absolutely brilliant Kerry! Wonderful news, and you have answered all the questions I had on my mind – whether you are able to eat normally etc etc. Fantastic!! Keep up the good work – we’re so pleased for you. Lots of love, and hopefully we’ll be able to see you some time soon. Love and prayers as always, Alison xxx

  3. Rosemary Ruddy January 4, 2012 at 2:37 pm #

    Dear Kerry

    So thrilled to hear all your news, especially that you will be back home soon. You are a superstar! Keeping you all in my prayers.

    With much love, as always

    Rosemary xx

  4. Anonymous January 4, 2012 at 4:10 pm #

    Haven’t you done amazingly well Kerry?
    It’s really made our Christmas!
    Think of how proud your Grandma would have been!
    All going well, we’d like to come and see you at Janes.
    Love from all and a very Happy New Year!.
    Love,
    Maria. X

  5. Cheryl Emmanuel January 4, 2012 at 5:16 pm #

    Glad to hear your recovery is going so well.

    Love,

    Cheryl

  6. Caroline Le Breton January 4, 2012 at 5:26 pm #

    Dear Kerry,

    Really pleased to hear that you are doing so well. We have been glued to your blog the last couple of months and we are delighted that you have made it through. Sending lots of love and prayers from us all.

    Caroline, Richard, James & Isaac xxxx

  7. kimdingle January 4, 2012 at 7:18 pm #

    Kerry, I cannot believe what I am reading! It’s mind blowing how far you have come….you’re just incredible! You’ve made us all so proud. I could not be more grateful to those amazing surgeons, doctors, nurses and physios and of course the donor’s family but you have also contributed to the success……. keep going, you’re doing great and I cannot wait to come to visit you at Jane’s and then in turn Noddy Cottage!! I’m so excited thinking of the times we have ahead of us!
    Love you lots
    Kim xxxxxxxxxxxxxx

    P.S. Loving being a commenter on the blog!! xx

  8. jolefeuvre January 4, 2012 at 7:37 pm #

    Kerry this is all so amazing to read 🙂 I have had a smile on my face the whole way through reading it! I can’t wait to catch up but in the meantime….keep going – you are an absolute superstar 🙂
    Good luck with the stairs – you can do it!
    Lots of love always, love Jo xx xx

  9. Jackie Matthews January 4, 2012 at 8:45 pm #

    Hi Kerry,

    So pleased that you feel like a ‘normal’ person again and can breathe without even thinking about it now!! Your experience has made me appreciate all over again so many everyday things which are very easy to take for granted.
    Fantastic progress, Kerry and I hope the tummy issues settle down soon. I can’t believe you will be out of hospital so soon!
    Love Jackie

  10. Mark W January 4, 2012 at 9:15 pm #

    Great that you are starting to walk more, the stairs will be behind you sooner than you think:) Sorry to hear that you have had a hard time with tummy troubles. I found the same when I was transplanted, the medication does upset things, It does improve but can take a while.
    You have done so well.Take your time to now enjoy this new life and all my best wishes for continued improvements for your trip home on the 18th January 🙂

  11. Ruth January 4, 2012 at 9:54 pm #

    Super news, Kerry.
    Keep going with all the exercises – it’ll pay off soon.
    Disney won’t recognise you when she next sees you.
    Ruth xx

  12. Lorna Peneueta January 5, 2012 at 8:02 am #

    You are an inspiration Kerry, I had a smile on my face and tears in my eyes reading this. This blog has been roller-coaster reading over the last few months, many thanks to your ‘team’ for keeping us informed!
    I am thinking of you during your recovery, wishing you all the best and I am looking forward to catching up if I ever make it back to The Rock! Such a wonderful Christmas gift from the Donor family and miracle timing!

  13. Mim January 5, 2012 at 10:29 am #

    Hi Kerry Bell

    Your sister Kim done a brilliant job with your blog telling us how you were getting on and all the up-dates but as she has said this one is mindblowing!! It is a beautiful read and very humbling. Enjoy every minute of your new life & lungs and as you say the simple things we so easily take for granted are your pleasures now 🙂 We will all be eternally grateful to your donor, what a wonderful gift to give to a wonderful and brave lady xx
    Lots of love to you
    Mim Trev Dylan & Zak xxxx

  14. Eve Ruddy January 5, 2012 at 10:38 am #

    Kerry, you are truly amazing! Keep up all the good work and you’ll be back on the rock in no time 🙂

    Lots of love and prayers
    Evie xxx

  15. John Wileman January 5, 2012 at 12:08 pm #

    You’re amazing dear Kerry; – may you continue to go from strength to strength. Our prayers continue to be with you. I was intrigued to hear you refer to ‘bloods’ in the plural! With my kidney problem, it’s common parlance in our Renal Unit too. You sound as though you are doing amazingly well; – keep it up – and may your feet be less itchy …….!
    Yours,
    John

  16. Alexandra Egre January 5, 2012 at 6:22 pm #

    Lovely Kerry, absolutely loving your last post – have gone all tingly and teary in delight at hearing how well you’re doing. Well done – what a journey you have had, but you are getting there and that’s the most important thing! I bumped into Phil a couple of weeks ago in a pub in town which was fab (though apologies to Phil as I had been on the beer for far too long and probably spoke a whole load of gobledegook haha!). Can’t wait to see you back over here in Jersey…I’m here for the long haul for now, so expect to see lots of me when you’re back 🙂 Sending you much love and great big smiles. So pleased that you are finally on the road to recovery. Big kisses and love, Alex xxxx

  17. Anonymous June 26, 2012 at 7:53 pm #

    Kerry,
    Prase God.

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