Saturday, October 23, 2010

Wedding Anniversary Today

With everything that has been happening over the past week it took my wife to point out something I had missed that had crept up on us without either of us noticing much till the last minute.

Today the 23rd October is our 1st Wedding Anniversary one year ago today we were in Oxford Registry office making vows to stay together for the rest of our lives in my case I was not sure how long that would be.

My darling wife has already forfilled some of the vows she made she has stayed with me" in sickness and for poorer" now I hope that I can forfill the other parts of the vows I said" in health and for richer!"When we went into the offices with our witnesses, I could hardly deal with the breathlessness. Now there is the potential for that to be a thing of the past.How quickly a year has gone and how much has happened since that day.
After we had been together for a long time before our marriage has it made a difference?Maybe not in a day to day sense but for me emotionally it made a lot of difference that I could make that official commitment to her.
My beautiful and loving wife a very Happy Anniversary with all my love and thanks I couldn't have done this all without you ! 
Lets us look forward to many more future celebrations and remember this one as the year that changed our lives together positively

If you want to read more about the marriage it is included Here as part of the second call we got.

The suit I used for the marriage is hanging on the bedroom door and the pyjamas that I bought at the same time are what I  am wearing now! funny how things work out.

Friday, October 22, 2010

Hello From Harefields

Just a short post to say thanks to everyone who has been following what has been happening with my lung transplant. Both before and those who have joined me since I have had the operation.
One thing I have found is many generous and supportive people, some of whom have gone though the experience of Lung transplantation I have been humbled by their encouragement they know what I am feeling and have encouraged me by sharing their experiences.
Other people I have met tell me they have been influenced to sign the donor register by reading about my experiences of waiting and that has made me very happy as that was one of the reasons for me starting the blog in the first place.
Another group of people are the ones still waiting for their transplants I feel most strongly about them and hope they get their organs soon and I will be highlighting those folk in the weeks to come and would encourage others to offer their support Three that I follow on my blog are:

  • Victoria Tremlett-Past the point of no return
  • Jodie Smith-Jodiecf.blog.co.uk-Transplant list
  • David Kallin - Chopped Liver
Thanks you all for your messages of congratulation I really hope you can all be transplanted very soon


Finally I thought I would try to post a video of me in Harefields I have included a piece of equipment called "the bird" which I found myself blowing in very soon after the operation it is used to encourage the lungs to clear.Also I have included a picture of the operation dressing so if you don't what to see be warned (its not to bad)Finally a bit of a thank you from the heart for everyone who has supported me it has made the most scary time in my families and my life much more bearable.Thank you all so much my best wishes and my families thanks go out to you all.
Please remember if you haven't signed up on the register you can in 5 mins and change a life like mine after you have gone.
video
My final thanks today go to all the donors and their brave families who at a time of one of the worst event in life they have thought of others and allowed there relatives organs to be used for transplantation one of the most selfless act I know of. I pray for your peace and grief to be over soon in the knowledge that part of your loved one lives on in another person. I will cherish the gift I have been given and hope I will be able to help others waiting as others have helped me please let your friend know about this story and discuss transplantation with others you know lets all carry donor cards and be proud to tell others that we do.
Thanks Mark

Saturday, October 16, 2010

Consolidation


5am on Monday 4th October 2010 I was sitting outside the operating theatre on the start of a journey of consolidation that had started over 5 years earlier
It was Sunday night at 1900 when I had got the call, a dinner of roast lamb roast potatoes veg and all the trimmings was sitting on the table in front of me lovingly prepared by my wife .I had just started one of the roast potatoes that were really nice and crunchy and was looking forward to the meal when the home phone rang I knew when the phone was passed to me that it was Harefieilds.
The same feelings were provoked as had been on previous visits but as we had a visit just a while back we were somewhat more prepared and the time of day was unusual. I started to tweet out to a few people online what was happening and posted an entry to my blog and facebook. Tweeeting as I went we headed off though the quiet evening traffic to Harefields when we got there we ran the gamut of tests required then sat and waiting.
This was to be a beating heart donor and all the earlier stages progressed rapidly and without event.

Was this going to be it?

When they finally said that it was a go I was not as shocked as I thought I would be. Not to minimise the weird feeling of finality after a journey that had gone on for so long. We had a while about half a hour to say our goodbyes and I said a prayer with the family before the porters came to take me to the operating theatre. The family went as far as they could till the got to the entrance to the department then I was on my own.

Then next few hours are a blur but I have been told that I came out of the operation at about 11.30am and woke up on ITU several hours later.

It is now nearly two weeks since that day and I will just say it has been an eventful two weeks with a few ups and downs to say the least but I am here, getting better and stronger as the days go by.

The most profound part was waking up and knowing that someone had given their life organs so that I could live a better life I will do all I can to ensure that those organs last as long as I can and have so much respect for them as a Donor and also my heart and sympathy goes out to their brave relatives who gave consent for the procedure to go ahead.


Thank you, whoever you are, for the Gift of life that you have given me.

Monday, October 11, 2010

Sunday, October 3, 2010

Called for Transplant again!!!

19.00
Another call I am so nervous I don't know if this will be the one.
We will be leaving soon to get on the road and will maybe find out in the early hours if this is the call that goes ahead keep an eye on my account on twitter @UKCybernaut for updates my daughter will be tweeting for me if things proceed.

Watch This space!!

Saturday, October 2, 2010

Transplant Call is 7 my Lucky Number?

  • Just after I had finished the previous post on this blog and was in the process of posting it to the blog, the phone rang.Number Unknown! the time was 1.37am, I knew who it was!
  • The still the panic was enough for me to forget which button to press to answer my phone and I sent the call to voice mail.The voice was familiar,but terrifying at the same time with all the emotions it provoked in me and a flashbacks of the previous six calls crowded into my mind.
  • The transplant coordinator from Harefield Hospital told me that the offer was from a non heart beating donor and it was early in the process. It was a long wait but by the next day 9.30am I had found out that my seventh visit for a possible lung transplant was to end unsuccessfully for me.
  • Hopefully other organs and tissues would be suitable for others. Lung deteriorate very quickly compared with other organs.I have so much respect for the donor and their brave family who at a tragic time where kind enough to offer me hope for a new life and I would like to thank them whoever they are,and offer my sympathy for their loss.
One thing that did come to mind from this call was the understanding that people have of the transplant procedures and what is involved so I thought I would add a bit of information about transplantation.
What sort of transplantation are there for lungs
  • Beating Heart Donor
This is when the donor is declared brain dead and organs are taken in a operation performed while heart is still beating maybe involving several teams of surgeons.The most likely cause of this sort of situation would be traffic accidents involving head injury,stroke or cerebral accident or other forms of brain injury.
  • Non heart beating Donor
In these cases the donor is not brain dead but is not able to survive off life support.A decision is reached to withdrawn from life support usually by relatives and doctors or as a result of a living will.
When this happens the donor will have to expire within a set period of time for lungs that is 90min any longer and the organs are too damaged by the process to use
  • Live lobe Transplant
Since the first living-donor lung transplant was performed in 1990, only about 150 have been performed.
For the most part, recipients of living donor lung transplants have been children and small adults, who have a difficult time getting a cadaveric lung of the right size. A majority of the recipients have been cystic fibrosis patients
Finally a few questions that people ask me:
  • When are you having the transplant?
I wish I knew when it would happen but not possible.
  • Are you still waiting?
Yes that is why I am breathless see above
  • When you get your lungs you'll be cured won't you?
The truth is that you swap one condition for a new one with the hope that the new condition offers you a better quality of life. A good result I have been told is seven good years 10 years is average.Canadian woman CF heart lung recipient has 21years but that is rare I believe the British record is 19years.
  • It is amazing what they can do now, you will soon be fixed up now you are on the list?
It is amazing what can be done if the resources are available! but a fact to remember is that 3 people die each day on the list waiting because of lack of organs and organs are wasted because relatives refuse to allow organs to be taken from their loved ones. The level of this happening is still too high, Organs don't go to heaven
  • What are the risks?
The risks are high the national survival rate is about 77% at one year.
50% after five years (half the people who have a lung transplant will be dead after five years)
  • How many people are waiting? (31.8.10)
  1. - 245 people were registered for lung transplant
  2. - 64 people received lung transplant
(National Transplant Database activity for the period 1 April 2010 - 31 August 2010)



Saturday, 02 October 2010
Since 1 April 2010
  • 477 people have donated organs
  •  an additional 1,232 people have donated corneas
  •  1,641 people have received the gift of sight
  •  1,274 people have received transplants
  •  8,026 people are still waiting for transplants

So that is all I have today as it took a long time to find out the details for this blog I have added another post more in depth about the seventh call on the bar at the top if you are interested.So it  seems 7 is not my lucky number.
  • Number 8. Don't the Chinese think that is lucky? Right that is it then 8 will be my lucky number now!
  • Finally I thought I would add a link to a story I read today on the Mail On-line make sure to watch the video at the end of the story it is the best reason I have found to sign the register!!!

Then anyone who wants to can sign the donor register here