Monday, December 29, 2014

Goodbye Emily :(

I am writing a post say goodbye to 2014 
To say goodbye to a inspirational woman in this final part of this year.
and share good news about another of my Tx friends

Lots of change has also happened in our family.  
 We have spent a enjoyable time over Christmas as a family as my daughter Ellie has been back at home from university for the holiday. It was quite a change for all of us when she left to move to Manchester in September, It took a while for us all to adjust to Ellie not being around.
I got a cold not long afterwards which I thought might lead to a hospital admission, and for a couple of days it was touch and go. I was lucky But it bought home to me how quickly things can take a downturn and it left me feeling vulnerable.

My car went in for its MOT and is due to be returned at the end of january I shall be getting the same car again I hope and I have made a pact with myself to use the new car to do some traveling around in 2015 as this is my fourth year transplanted and I want to visit places from my past while I am able. 

 Lets face it no one knows what the future holds but as a lung transplant recipient this is particularly true. On my next anniversary in October I will be one of the 50%  who survive 5 years. 
Half the people who have a double lung transplant don't last over five years!

I am so blessed to be living this life and still well despite my diagnosis of chronic rejection that i dont want to waste any more time not doing the things I promised myself.           

This was brought home to me when I heard the very sad news that a inspirational Tx friend has lost her battle with serious complications following a second lung transplant

Emily Thackery


I have included 15 facts about Emily that she posted in 2011 as part of a 30 day photo challenge with this photo 
1. I am a natural blonde, in both hair colour and brain.
2. I have a strong belief in the power of positive thinking; even when you can't change your situation, you can change your perspective.
3. I have 2 sisters, who I love very much and who are currently too far away for my liking.
4. Family and friends are the most important things to me.
5. I've been "officially" written off twice. And I'm still here. Take that, Grim Reaper.
6. My favourite colour is still pink, although now I'm older and more mature (HA) it's a little more discrete.
7. I have a very vivid imagination. This can be a good thing, but it can definitely be a bad thing as well.
8. I love reading and attribute that to my parents and their house, which is full to the brim with books.
9. I adore pretty shoes but cannot walk in heels to save my life.
10. I collect little quotes and sayings which put things far more succinctly than I ever could.
11. I love learning and believe I can learn from everyone I meet. At some point in the future, I'd quite like to take up study of some sort again.
12. I used to be quite the little grunger - black makeup, baggy jeans, heavy metal music, the works.
13. In many ways I feel quite mature for my age, but in many others I feel hugely out of my depth and think I belong back at school with some of the kids I teach.
14. I've always been a poser; I was in a dettol advert as a toddler and modelled knitting patterns for a magazine.

15. I'm quite petite, and I rather like being small. Until my year 7 pupils tower above me that is. 
   I meet Emily in January 2012 when I attended the speakers project run by LLTGL a charity Emily started with her friend and won award for in 2011 
She was a great support to me and many many others and will be missed by so many people.
I last saw Emily in clinic before she was admitted to Harefield with a serious deterioration in her lung function that turned out to be something that couldn't be fixed and although she got another transplant it was not successful
Emily had got her transplant in January 2007 and had many great years of extra life and had a daughter Sophia.
She passed peacefully on 28 December.2014  
You can read more about Emily at her blog PinkandSmiley and please visit and support LLTGL

Finally Emily's sister Abigal set up a page for donating to Harefield Hospital who looked after Emily at 

I will miss you Emily and you will be missed by so many in the transplant community
Rest in Gods embrace xxx

Emily's favourite quotes on her facebook 
 seems very relevant at the moment

"I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn't arrived yet. I have just one day, today, and I'm going to be happy in it." - Groucho Marx

"Attack life, it's going to kill you anyway."

The other piece of news I have to share is good I also received news from another friend on facebook and someone I follow on this blog Claire who writes  My World has been lucky enough to receive her best christmas present ever of a new Kidney
She posted 
As most of your know. Operation went well and kidney is working. Just had a scan and everything is looking great! Still very sleepy and in pain but apart from im doing well.

I wish her all the best with her new life and hope her recovery will be quick and uneventful

As I look forward to the new year what do i want? 
All the best things for All my friends may their wishes all come true 
Continued Good Health for my transplant Friends and myself
and time to live my life to the fullest 

to all my readers and friends

Have a very happy 2015  



Saturday, October 4, 2014

Four year Anniversary

This time four years ago I was recovering from the biggest change to my life since my birth
Thanks to my donor I was able to breath again after five years deteriorating to the state of a respiratory cripple on oxygen constantly to breath.      
It seems like a lifetime ago and in a sense it is!

It has been a year since my last entry in this blog why is this I here you ask? truth is I have been getting on with daily life. There have been ups and downs in my health but mostly I have been trying to live a normal life and not let my medical conditions rule my life. 
It took a long while to get over the process of transplantation and the changes it brings with it,
I was told by my doctor that transplantation is not a cure it is swapping one serious condition for a new one.At the time I didn't fully accept what that might mean, I think now I understand!  
How have you been?
 a question many people ask when they met you after a long time. For people with a long term medical condition this becomes a very awkward one to answer! This year I have tried to answer in the expected way
"I am fine how about you"
 On the whole people don't want all the details, if you tell them they get scared for you and worry what to say to you. Truth is the only people who know what you are talking about are fellow transplantees.But for the purposes of the blog I shall briefly fill in some details.

I have had to deal with a few health issues this year not least the issue of chronic rejection! It has not cause me any overt problems as such but the thought of it being present has been hard to deal with. 
It is strange that when I was really unwell I dealt with many more problems and was somehow able to ignore them and get on with life better than the unseen issue of a worsening of the rejection!
Another issue that has taken some getting used to has been my Diabetes I have struggled with the effect that it has had on my life and the restrictions, but it seems that a the moment it is not causing any of the health issues that come long term my eyesight is okay and peripheral nerves seem good checks through my GP seem to be in the range that is expected.
I did have a issue with some sore skin areas on my right leg that was worrying me. But after a skin biopsy in the summer it turned out to be Porokeratosis. This a skin condition that can occur due to the medication I take for the transplant. I was happy to find out that it wasn't skin cancer, a risk factor for all transplants, but there doesn't seem to be much that can be done for it, and it does need to be monitored as it can develop into skin cancer in a small amount of cases therefore I will be attending Dermatology dept from now on.
RSV     
The most major issue this year was being admitted to hospital with RSV!
It started as a cold just before Liz went to Manchester with our daughter to look at accommodation for University then it got rapidly worse over that day to the point were I became breathless a call to Harefield confirmed that a hospital admission would be on the cards and when my son got back from college that night a ambulance was taking me to the local hospital.
That night I was back on 4 litres of oxygen and quite worried two days later I was back in Harefield on IV antibiotics after a bronchoscopy and a diagnosis of RSV a common respiratory illness in children for a immunosuppressed person it can lead to pneumonia and death so i was glad that I got treatment when I did even though  I had to spend the whole of the stay isolated as I was a risk to the all the other transplant patients.
  
Finally a couple of months ago just after my holiday I managed to brake my ankle walking down a hill after spending the night waiting for the demolition of the cooling towers of a local landmark didcot power station and spent some time on crutches :(

It has not all been bad although I hoped to get away a few times this year I was able to go on holiday with the family to Sussex for what would be the last time although we had done most things before we did manage to ride on the new Brighton Big wheel
 
and saw some of the sights before having a nice meal 
Brighton Street art
 
 I also managed to get to Hasting on Mayday to see the largest amount of motorbikes in one place I have ever seen. 41000 attended and filled the town with bikes I was there on my bike with my son Mine is the bike with red luggage on the right of the photo
Another interesting event happening on the same day was the local may day celebration "The Jack of the green" where you can find many unusual characters!


 "I am fine it is all the others" 
This is another stock response to the how are you question. 
In this last year this has been particularly  poignant as some of the people I follow on this blog are no longer with us now or are having a bad time of it 
Firstly Kerry who wrote Come walk in my shoes... did not make it to receive new lungs and passed away peacefully on the 21st March 2014 for those who want to support the new charity set up in her name please see The Kerry Alex Thorpe Trust  you can read more about Kerry on her 
Another person no longer with us is Hazel who wrote  Hazel's Blog - The road to transplant she was called to transplant and received new lungs but unfortunately died from blood loss on 25th September as you can imagine it has shocked me and all the people who were following her progress:(
The final person I have found out is having a very bad time is Jodie who writes Jodiecf Blog she is suffering with very bad chronic rejection of her heart and lungs and is waiting to be put on the transplant list again please if you could offer some support to her and comment on her blog I am sure she would appreciate it.
On a positive note the people I mentioned in my last blog entry last year are dong well Kirstie  is doing well since her second transplant Kimberly is getting better after her problems last year. Kath has recovered really well and is living life to the full since receiving her new heart and lungs
Katie is doing well since her transplant and is now involved with LLTGL as a advocate
If you want to help this very worthwhile charity please think about buying one of the new
It contains several people that I follow on this Blog and will help with educating people about transplant and organ donation

Other things that have happened in our household this year is my son Alex is now a man having reached 18 this summer. I was able to join him and buy him his first pint of beer in the local pub, something I thought I would never be able to do when I was ill.
My daughter Ellie has left home to go to Manchester Metropolitan University and my wife Liz and I will be celebrating our 5th wedding anniversary on 23 October after 27 years together.
Our family 12th September 2014
All these things would not have happened if it wasn't for my donor leaving me his lungs for that I will be eternally grateful to him and his loved ones who allowed the donation to go ahead 
Please if you haven't signed the donor register please consider doing it now 
and if you do or even if you don't 
please let your loved ones know so they can honor your wishes

   Click Here