TAKE A BREATH AND SAY 99: 6 Years and still going strong

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

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