Tuesday, October 4, 2016

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 
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!!! 

Monday, October 5, 2015

5th year Tx Anniversary - A Few Months of Pain, Another Year of My Life

Sorry That it has been a while since I have Blogged.
Quite a few things have happened, not all good, but things have started to improve now :) 
So I thought I would fill in the gaps and update everyone with the details.....

First I would like to say there have been some changes in my blog list unfortunately Jodie Smith who I had followed since her heart and lung transplant. Went into rejection and despite being on the transplant list again, she didn't get her chance and passed away still waiting.I have added her blog to the right hand side column of the blog with others who are no longer with us.  
She is survived by her daughter shown in this lovely picture from her blog back in 2010 She suffered from CF and was in her mid 30s when she passed on! 
Jodie RIP
 Another person who may have been saved by a transplant that never came :(

I have added a new lady called Parris who is 17 years and just starting on her journey towards a possible transplant she is finding it hard to deal with the emotions that this change in her life is bringing  and would surely like to get some comments and encouragement to help her through!!

One thing I had hoped is that this blog would be an encouragement to others on the transplant journey Sometimes though it is a record of the fact that, although Transplant can give someone a new chance at life it is not a cure 

On a positive note George who writes My Journey the Beginning of the end  on my blog list has had a transplant and is two weeks out into her new journey please have a read

So what has been happening with me???
Back in March I went to visit a friend of mine in Oxford and was on my way home on my 800cc Honda Crossrunner motorbike when I was undercut by a car on a local roundabout. The lady in question had taken the wrong line around the roundabout despite the signs, then decided to cut across my path upon leaving the roundabout by the wrong exit I made a decision to overtake her to avoid a collision but I had not accounted for the pedestrian island just after the  roundabout.I was unable to continue the overtake without hitting the island I made a choice to get off the bike and slid down the road on my right side the bike luckily missed me an slid down the road to my left.
I came to a stop painfully and thought I have really done it now!!! 
I tried to breath but couldn't I was really scared 
The thought came to me -  You have damaged yourself so much that you are just going to sit here and suffocate to death now!!!
I tried to inspire again this time success....
Thank you God!

I managed to tell a driver who had stopped to dial 999 and tell the services That I have had a double lung transplant.Then gave her my phone and asked her to phone Liz my Wife and tell her where I was, only two mile from home at the time.The ambulance arrived within a very short time and then so did Liz and my son.I was in agony with 8 broken ribs and a bone exposed where I had lost all the skin from my left knee.

I spent a month in Hospital on oxygen and loads of pain killers and have been recovering every since even now my knee has not fully healed but I am looking forward and getting better all the time. Another year of my life passed with my birthday in August and I was able to get a holiday to Hastings to visit Liz's family before that, after getting discharged from wound care appointments at the plastic surgery outpatients

what happened to my Bike? It got sold to the repair firm who made me an offer that I could not turn down £1000 less than I paid for it two years earlier.The money is sitting in my bank now waiting till I can get a new bike.My son has passed his bike test now and is able to get a bigger bike so we hope to be on new machines for the spring! 

Five years ago I was sitting in Harefield Hospital waiting to hear if I would receive a new set of Lungs!
I am feeling so grateful to the 45yr old man who had signed to Donor register and allowed my dream of a second chance at life to come true.
It has been a great five yrs but not all plain sailing,I am so grateful to my Donor and to my family Alex Ellie and my Lovely wife Liz for supporting me through all the ups & downs 
At 5am I went into the operation and received a gift I can never repay I came out of theatre at about 11.30am and my life started again:) It is a sobering thought that statistics for survival rates mean that I am one of the 50% that are alive after 5 years 
I am so grateful !!!

This month I will celebrate my Wedding Anniversary. Six years since Liz and myself have been married and 28 yrs together 
My daughter turns 21 at the end of the month while studying English degree at Manchester
My son has started two jobs and is presently in college and working part time for ALDI
 Thanks to my donor and the Will of God
I am able to have a life I never dreamed would happen
I an truly blessed 

I would like to wish all my Tx friends a happy and healthy time and what every the next years bring lets us all celebrate this great life we have to live