Archive | May, 2013

18 months :-)

23 May

Hello everyone,

Today it is 18 months since my transplant- I really can’t believe it! Time has flown and I am still in awe of the Doctors’ skills and the way my body has healed and started being vaguely normal. My life has pretty much become just like everyone else’s which is something that I never ever thought possible.

Tonight I shall be raising a glass to the most amazing lady who saved my life and her family who I’m sure miss her so much. They are never far from my thoughts.

I have just come back from a check up at Harefield where everything was absolutely great 🙂 I saw Dr Carby and he is very pleased with me. The only bad thing is I do need my stomach operation urgently, it really is essential to get it done before it destroys my lung function that I have worked so hard to maintain. Dr Carby has said we are on borrowed time for this so we will be trying to get this done in Jersey now ASAP rather than waiting for the UK to agree to see me, so fingers crossed with that. I have however been given 6 months until my next clinic check up which I think is the maximum you are ever given 🙂

These lungs are just incredible 🙂

Lots of love Kerry xxxx

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The Gift That Keeps On Giving….

4 May

I thought it was about time I updated my blog, as mentioned before I won’t be posting that often on here, just a little catch up every so often- unless I have important news!

My last post was in February when I was still really recovering from the nasty virus at Christmas, and apart from a few minor episodes I have really had the most brilliant 3 months. I have been feeling so much better with noticeably more energy, and I have been so busy which doesn’t seem to have had any detrimental health effects. I am completely living a normal life, I am picking up my social life, exercise and generally really enjoying things that I never thought I would ever be able to do again- it’s so wonderful ☺

My February appointment at Harefield went absolutely brilliantly, everything was great and they gave me 3 months until my next appointment (the longest I have ever managed without needing to be seen). I am due back in clinic again on 20th May. This week my lung function is at it’s highest ever so I am keeping everything crossed that it stays that way for when Harefield see me so they can be pleased with me!

Quick health update:
-Still waiting for stomach operation. I have been chasing this as I keep hearing of people whose lung function has dropped significantly while waiting and some people never regain this. I really pray this doesn’t happen to me. It’s been 6 months since I was ‘urgently’ referred so I’m not really prepared to wait any longer for my lungs to suffer.
-My second toe operation should hopefully be happening once I get back from my Harefield trip- I’m excited about this- I will be able to start wearing my pretty shoes again! ☺
-I had a chicken pox scare where I accidentally came into close contact with someone at the most infectious stage (which is unfortunately the day before symptoms develop so really not their fault). I was put on some really strong antiviral drugs which made me feel rotten but they did the trick and fingers crossed I seem to have escaped the pox.
-I’m on a strict exercise and diet plan now which I have actually stuck to and am determined to complete. I want to lose a stone and get my lung function to peak and pass that 100% goal. I’m currently on 92% so hopefully this should be achievable by improving my general fitness. I am currently walking Disney more vigorously every day and going to pilates and body fit classes weekly. I think all this should do the trick! I also have my treadmill at home too. I have been put on cholesterol tablets as this is now high.
-Still not sleeping much but I seem to be able to manage without getting out of bed at the moment which definitely leaves me less tired.
-Generally everything is good ☺

So, quick synopsis of what I have been up to:

_ Really enjoying socialising and starting to see and catch up with friends properly. Re-introduced myself to alcohol and dancing too (in moderation!).

My sister and I at the Wedding :-)

My sister and I at the Wedding 🙂

-We have been doing work to our house and sorting that all out, which has taken a lot of my time. We now have a fantastic master bedroom suite UPSTAIRS!! It’s gorgeous and I love it ☺

-Phil and I celebrated our 3rd Wedding Anniversary on 9th April, we went out for dinner at Feast restaurant which was lovely and as the traditional gift is leather- we bought a new sofa for our new living room.

IMG_0666

-Disney has had a big new hair cut and looks like a puppy again. So much easier for me but she doesn’t like feeling naked when she is out!

"But I feel naked Mummy!"

“But I feel naked Mummy!”

This is exactly what happens every night in our house (plus snoring sound effects!!)

This is exactly what happens every night in our house (plus snoring sound effects!!)

-I have started looking for a part time job- I think the time is now right for me. I am getting bored at home and whilst I don’t want to push myself too much, I miss the routine of working. I’m looking for a couple of mornings a week ideally so fingers crossed something comes up soon.

-I have taken up a new past-time- Knitting!! I’m an absolute beginner and completely rubbish at it but hoping that will change! I have also been trying out some cake decorations over Easter and want to get practicing these more.

My Easter Cupcakes (100% made by me!)

My Easter Cupcakes (100% made by me!)

The real highlights of the last few months have been my 2 friends’ weddings we have been to in April. Both these lovely ladies are very good friends of mine and it was just fantastic to be part of their special days- seeing them look so stunningly beautiful and happy with their respective husbands. On both occasions I danced the night away- something I have not done for about 10 years- and I didn’t even get breathless! How amazing is that?! Sore legs did get me in the end though! I was also very honoured to be asked to read a poem at Jo’s wedding, which was very special.
Congratulations to Jo & Dauny and Charlotte & Andrew and thank you for such fantastic days xxx

Jo & Dauny 6th April 2013

Jo & Dauny 6th April 2013

Charlotte & Andrew 27th April 2013

Charlotte & Andrew 27th April 2013

Finally, I had quite an exciting few days a couple of weeks ago. There was a story in the news following the release of organ donation statistics and how much the number registered organ donors had soared in the last 5 years which is absolutely fantastic. A researcher from Radio 4’s Today Show found my blog on the internet and contacted me to come on their program. I was interviewed by John Humphreys and although I was pretty nervous, I think it went ok. I got back from that to a phone call from Radio 5 live who wanted me on their show which I did and then I was contacted by the mail online who wrote the following article on me. It was quite an exciting week!

http://www.dailymail.co.uk/health/article-2307348/Double-lung-transplant-survivor-talks-organ-donation-saved-life.html

I was pleased I did it and feel like I have done my bit to promote organ donation for the time being. I find it quite hard to get a balance between acknowledging how important it is and how it saved my life but also respecting people’s wishes not to sign up or even really think about it. Some support I get is really fantastic but I am surprised by the number of people who are not interested in even really having an opinion. This is the worst thing- so much worse than people who are against donating their organs because it is such a waste- should something awful happen to you and you have no issues with donating an organ to save someone else’s life, how awful would it be that because you have never discussed it with your nearest and dearest that they don’t agree to the donation so that other person dies? I just want to make it my job to at least push people to have an opinion and discuss with their next of kin. There are some lovely girls I have known via the internet who have sadly lost their battle with Cystic fibrosis in the last couple of months, they were all young and waiting for their second chance and that call that never came.

Here is that link for anyone who wants to sign up but isn’t sure how:

https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp

You only have to read this blog to see how, only 17 months after my operation that I am living such a wonderful life, and enjoying every day as an absolute bonus. Organ donation really is the gift that keeps on giving ☺

I haven’t logged into this for some time and note that I have some lovely comments from some new people that I haven’t responded to. I am really sorry and I will reply very soon.

So that’s enough from me, hope you all enjoy your bank holiday weekend 🙂
Love Kerry xxx