Seven years of new life for which I am eternally grateful

Today marks the seventh year that I have been breathing with someone else's lungs 

I won't say that this year has gone entirely smoothly,but I am still here and still enjoying life

  

The problem with transplants is not the surgery but the medication that is required to keep the organs against the body's inclination to reject anything foreign including my new lungs   

 I had got a six month holiday from transplant clinic as at the beginning of the year all was well with my health, I had lost weight and my lung function was good.But other things in my body were not going as well as I would have liked

I attended my renal appointment and was informed that there were concerns about my Kidney function it was deteriorating and some of my medication could be causing it.

The medication that I take for immune repression is known to cause chronic kidney problems but this is a drug I cant stop taking due to organ rejection. But it seem that the drug that I take for my Diabetes and medication I had been taking for an infection on my leg may also been contributing.

The consultant was also keen to do a biopsy on my kidney which I was not happy about 

I was told to stop taking these tablets or risk kidney failure and need to go on dialysis.Ultimately I would need a kidney transplant!    

I stopped the antibiotic and went back to the lower dose that had been recommended by transplant hospital the diabetic medication presented more of a problem Without the tablets my diabetes would not be controlled, there was no other solution than for me to go onto twice daily Insulin injection!

I was fed up!! I knew that I might end up on insulin but I hoped it would not be so soon.

It took me a while to get used to and a while to adjust the dose to my diet.

I had to send my driving licence back and was issued with a five year one and have to adhere to strict guidelines about testing my blood glucose levels when driving 

These changes had some positive and negative effects

The postive effects on my kidney function was gradual but allowed the consultant to feel happier and stop talking about the biopsy  

The negative effects was weight increase I had put back on all the weight I had lost and was suffering with swollen legs again, a problem I had not had for quite a while    

I dont want to seem negative the problems I have had are small compared with other people I follow on my blog roll I would suggest you have a look

 Again this year I have said goodbye to more transplant fiends and personal friends I had known for many years 

I have also moved into the 55 - 65 demographic on forms I fill out, something I thought I would never have to do I am in the old age range now but it is something to celebrate! 

My son has passed his full bike licence this month and has got a new job starting soon.

My daughter is doing well in her University course. 

My wife & I celebrate our 8th wedding anniversary at the end of this month after 30 years together. 

LIFE IS GOOD 

Finally I heard some great news today the day of my 7 Year transplant anniversary  

The prime minister Theresa May announced in her tory party speech that the government will be changing the law to presumed consent for Organ Donation 

This would requiring people who dont want to have there organs used in transplants to opt out 

I hope that this will allow many more people to have the chance at a new life as I have I am so glad 😊 😊 😊

                                                    

6 Years and still going strong

Another year has passed and I am still here
With each passing year I give thanks to the 45yr old man that signed the donor register and who's family gave the go ahead for me to receive his lungs

I have looking after his gift and kept his lungs alive inside me and have been able to live a full life because of this I have met some lovely people as part of this journey and I am sad to say that some are not with us now
One of the things that happens on this journey that the people who start off the journey with you sometimes only stay for part of the road you travel. This has been particularly true this year with several of my fellow transplantees having passed on and many more having life changing and life threatening complications.I wont go into a in depth listing of the people concerned but it becomes quite hard to keep positive in the light of all the issues people are facing.

But this is the deal you sign up for 

Swap one life threatening condition  for a slightly easier to manage life changing condition  

People think that a transplant means you are cured of the issues you had. It is true that you dont need to use oxygen and may not need constant inhalers and I lost my life long asthma.
But there is a cost....

I have ended up on life long Bipap and daily nebulisers for an infection I had while waiting for my lungs.The drugs have taken their toll on my body and my kidneys are getting damaged by meds.
I have had a skin infection this year which took ages to diagnose and will take 6 months of pills to clear.
I could have been worse as I am also prone to skin cancer because of the medication I take and need to use high factor sun cream (50-60 factor) whenever I am out in the sun.I an in danger of broken bones and  mood swings due to the steroids I take. I am also diabetic now.

But I am doing better than many I know.

Other people who started this journey have suffered more One person I know has had to have a Kidney transplant another has had complications due to reflux and is now permanently on tube feeding to preserve her lungs.Another friend suffered complications with a preexisting condition and had major abdominal surgery.Finally another friend is now confined to a mobility scooter to get around due to problems with medication side effects.

        To all those people who are struggling with health issues I send my prayers and wishes that things will get better for you soon.Know I will do all I can to help you in any way I can!

Those who are waiting for transplants I hope your call comes soon.Finally to those who are no longer with us it was a privilege to have known you and been part of your lives rest in peace.  

On a positive note my health has been good  except for at the beginning of the year Christmas time I felt rough and my lung function had taken a hit I was worried due to my diagnosis of chronic rejection I was told by Harefield Hospital that they wanted to do a Bronch and get a CT scan this was postponed and when I did get the investigations they showed inflammation but no definite cause.  
I was able to slowly improve and I have been able to lose quite a bit of weight which has helped and my last visit saw my lung function improve allowing me the magical six months off clinic

What is the main point to this post apart from celebration you may ask?

I think the thing I want to share is 

LIFE GOES ON

Not for all - Too quickly at times - it doesn't stop 

A New Life is not new it is a precious extension

Transplantation does not change your life but it can change you

It is important that you live that life to the full 

Do the things that are important to you.

You are the only one on this journey 

You may walk the road with others 

But at the end it is a road we walk alone.

Try to make this walk a happy one but be true to yourself

Help those you meet along the way if you can 

Share wisdom and happy experiences

Have no regrets you are playing with extra time

Seek joy and love in the world there is plenty if you look

Have fun wherever you can find it :)     

   This next year I hope to be able to do some traveling visit people I know on this journey with me. 

I hope to go abroad and travel England and Scotland and Wales 

We never know what is around the next corner in our lives but I intend to go and take a look!!! 

    

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 

Just Giving - Sending Love to Emily

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  

R.I.P. Who Knows What Life Will Bring?

I am now 21 months on from my transplant and life has dealt some hard cards to me since my last post. Quite a lot has happened and I have been finding it all quite hard to cope with.

My worst news happened on 20th June when my mother of 80yrs died suddenly!!

She had been fit and healthy and had no health problems that would indicate this was going to happen, but was found by my younger brother when he went to visit her home.
She had died from a bleed in her brain it was quick and we feel merciful as survival could have led to disability that I know she would not have wanted, nor coped well with.

Despite this I was shocked and distraught and couldn't believe it had happened :(
We had her funeral on 29th June

Barbara
R.I.P.- Mum
29th April 1932 - 20th June 2012
 Miss you so much


As the post title says "Who knows what the future will bring?" we never know, so make sure that you fill your life with happiness live your life to the max and tell those you care about that you love them often