Wednesday, October 4, 2017

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. 

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 😊 😊 😊

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!!!