Sam and Luke - A Love Worth Giving

I thought I would draw peoples attention to the following film promoting organ donation  

I was lucky to meet Luke in Oxford when he exhibited his paintings sadly I never met Sam.but had followed her blog while she waited for a transplant

you can read it Here

The End Of My Tether 

That day it lead to a opportunity to meet up with another friend from Scotland Victoria Glen who sadly is no longer with us she was also advocate for organ donation

Please take the time to watch the film and if you can share the link on social media so other understand the importance of Organ Donation 

You can watch the film by providing an Email and will be sent a link

To see the Trailer click 

   

A Love Worth Giving

Sad News - Sam Yates has lost her fight for a new life

Just a brief post to tell my readers that unfortunately one of the people who's blog I have been following on my Blog list has lost her fight for a new life
Sammie (Sam Yates) who wrote the Blog "The End of my Tether?" about her wait for new lungs and her struggles with Cystic Fibrosis
she wrote

The aim of this blog is to perhaps raise awareness of CF and also of life living on ‘the list’. I am a primary school teacher and taught for 2 and a half (ish) years before I had to be dragged away kicking and screaming to concentrate on keeping myself as healthy as possible, so that should a pair of lungs become available, I will be fit enough to undergo the transplant. 

She was just 28 years old when God called her to join him

(I will keep a link to sammie's blog on my site in memory of her)

All the more reason for people to sign the Organ donor register 

If you have not signed up yet please consider doing so you can do so online  HERE

or if you prefer you can ring 0300 123 23 23 and register 

Finally Text the word SAVE to 84118

Please help someone like sam to get a new chance at life 

I have just returned from Harefield Hospital where I was happy to see a friend of mine Kirstie Tancock complete a epic 180 mile bike journey from Exeter near where she lives to Harefield Hospital where she received her life saving double lung transplant.
She completed the ride with a team of supporters including her husband and they arrived in Harefield at just before 17.00 after three days of cycling!! You can read her blog "2nd Chance @ life"   it is on my blog roll

I thought That I would share some of the photos that I managed to take while I was there. I will be sending some of these to the LLTGL website  and to Kirstie  Kirstie is a advocate for LLTGL.

The end of a very long road as Kirstie arrives at Harefield Hospital

Kirstie

Kirstie & Stu her husband in blue LLTGL vests

The whole team who competed the ride

 I would like to congratulate Krstie and all the people who joined her on her ride raising money for a great set of charities including Harefield charitable fund, Live life then give life, CF trust and East Devon cystic fibrosis quality of life fund.

One thing I would like to add is if you would like to help there is still time to make a donation. Sponsor Kirstie and the team so they can achieve their target of £3000

Kirstie's Big Breath Bike Ride

 If you have been inspired by This blog post to join the organ donation register Click here and help someone live a new life after your death, please tell your loved ones about your wishes so they don't have to guess!  you may regret it later if you don't 

Back to Life

Back to the day to day after the Christmas holidays is always hard.
After all the hard work, it is all over so quick. I had a good time but it always feels like a anti climax now my wife is back working and my children have gone back to school and college.

I have finished my last pulmonary rehab sessions and had my final test which showed an improvement in my recovery after exercise,which is great. I will need to continue my fitness regime to see the benefits increase and I am embarking on a concerted effort to lose some weight while I get fit. To achieve this I am looking around for a gym that suits me and is within my means and I will make use of my own weights at home.

I am looking forward to this new year of 2012 with renewed vigour.
I am starting back at my camera club tomorrow and will be going back to Harefield Hospital on the 9th January for a clinic appointment, looks like January will be a busy month for me at Harefield as I am also attending a meeting on the 14th January.
I hope that I will be able to look into some new options to fill my time such as voluntary work and will continue  with organ donation promotion using twitter and Google plus. I am also considering some new options for this blog in 2012 and may be adding some different aspects to it in the future.

It Is fifteen months since I had my transplant today.

I am happy to say my transplant life has got much easier to deal with now

I feel like I know when things are good and when things are not good with my body. That took a while to happen.So much of your life changes after such a major operation and lifestyle changes can be hard to come to terms with.The constant checks to make sure that lung function is maintained, the daily temperature checks and the medication to maintain your health and the worry about what might happen become easier with time.
But given that my life before transplant was so awful it has all been a revelation. So quickly you forget how hard it was to walk up stairs one at a time and stop on every step.How 13% lung function was all you had to work with and a bath was a task to be dreaded the oxygen tubing trailing around the house and the oxygen tank in the car when you went out.All this now a distant memory for me.

There have been many success stories in 2011

Victoria Tremlett  Past The Point of No Return getting her new lungs after a very long wait.
Kirstie Tancock  2nd chance @ life getting her lungs at the last moment as we saw on Love on the Transplant List the great BBC3 program.
My friend Jodie Smith got a new heart and lungs in June jodiecf.blog.co.uk/
Finally in the last part of the year, six weeks ago and at the last possible moment as she lay in Harefield hospital on ECMO like Kirstie.
Kerry Maletroit who writes Transplant Tales received her new lungs and is doing well and awaiting a discharge date in January 2012

Transplant success stories 2011

Many are still waiting

But for others I follow on this blog such a Kimberley who writes the blog Being Kimberley these things are still current issues please have a look at her blog as she waits for a place on the active transplant list at Harefield Hospital in 2012
Also Kerry Alex Thorpe who writes the blog Come walk in My shoes also hoping for the gift of new lungs in 2012 and currently the face of LLTGL campaign  to promote organ donation these women are still hoping that someone will sign the register and become a donor so that there chance at a new life will be possible.

If you have not signed up as a donor please do

 Register as a Organ Donor

Happy 2nd Wedding Anniversary

Today two years ago I pledged my life to my girlfriend with the thought that I may not have made it to my first anniversary!

When I made my vows I was barely able to breath and had to use oxygen in the car because of this. I had taken a break from the list to get my affairs in order as I didn't know if I would survive past the operation.
My first wedding anniversary was in Harefields Hospital in a ward 19 days after my double lung transplant.
Here I am now despite my worries and happy to celebrate my good fortune with my wife who has stood by me for over 24years, though many changes, but none as big as the one we have been though in this last two years.Despite some ups and downs and illnesses along the way she has been my rock

I love you my darling wife 

I don't know what I can do to thank you. 

I just hope in the years we have now I can love you as much as you have loved and cared for me:) 

None of this would have been possible but for my donor! 

Please sign the donor register  Here

I am happy, seeing my children grow into adults and am able to celebrate!

Another reason to celebrate is that Victoria Tremlett who I have been following on this blog since before my transplant has been given the gift of new lungs in Harefields on 11th October after a wait of over four years she has had a few complications but is now doing well and back tweeting on Twitter @tor87  

I have also been following another possible transplantee Kerry Thorpe who is the face of the latest campaign by the charity  LLGL who campaign for organ donation you can find out more here
She is presently waiting to attend Harefield Hospital for a assessment for inclusion on the transplant waiting list for a lung transplant and I wish her all the best for this.

Finally a plug for a great night out that is being organised by another Double lung recipient Victoria Glen

A Great Halloween Night

Saturday 29th October  

Flying Duck Club, 

Glasgow City Centre. Starting at 8pm

DJ’s, music, dancing, rune reading, spooky face painting and prizes…and know all your money is going to a great cause! Tickets to our event get you into the club night for free!!

All cans are £2.50 on the night!!

As it’s Halloween please come in fancy dress! The general theme is Dead Famous, so think icons from the past. However any fancy dress is acceptable. Prizes for winning outfits! If you do however come with no costume you can get your face painted by our resident face painter

Tickets are priced at £7 standard and £5 students. Tickets online are subject to a .99p charge. This charge is to cover the cost of e-ticket service and paypal charges. On-line Tickets can be purchased  http://www.etickets.to/buy/?e=6934 Tickets can be purchased on the door.

100% of funds raised will be donate to the Butterfly Trust. 

Performers and volunteers are providing services free of charge on the night.

For more information on the event please contact us at teamglasgow3@gmail.com

Nine months on Transplant Week again

It doesn't seem so long ago that I was tweeting for 2010 Transplant Week but lots has happened since then.

I didn't know when I was tweeting in July last year that I would recieve a transplant before the next transplant week I was like  @tor87  it was the not knowing that was the worst.

Each day waiting, every time if the phone went jumping up, because it could be the hospital phoning with a offer of possible lungs.The stress on the family was intense, the restrictions it placed on my children always needing to have a phone on them and let us know where they were.It was unnatural to young teenagers who should be out having fun. We were waiting for a new life but not sure it would ever happen. 

That is what it is like when you are on the list

Sadly @tor87 is still waiting and she has produced a video about her wait for lungs for transplant week, you can watch it here Victoria Tremlett  she has had seven calls and is still waiting. 

You can read her blog on this site on my blog list "Past the point of no return" 

What could we do to help her? 

simple sign up as organ donors go to the NHSBT site and register online Here

Other people are still waiting 

@asideofonions  who is waiting for a liver transplant 

@alex_f_lambert a toddler who is waiting for a new kidney

 

Mrs Kirstie Tancock an ambassador for"live life and give life" charity 

She was featured on Russell Howard's Good News and has just got married after being on the transplant waiting list for new lungs due to damage caused by Cystic fibrosis. 

She writes the blog "2nd Chance @ Life"

Kirstie is presently in Harefield Hospital transplant unit waiting on her last chance to get new lungs she is slowly deteriorating and will not see her first wedding  anniversary without help.  

Let us all hope she is fortunate and receives her lungs soon

 

For information sake the following is a estimate of waiting times for  organs from NHSBT site

Waiting time to transplant

I got my lungs nine months ago today.

I was fortunate that a 45year old man I never met had the foresight and courage to sign the donor register and let his relatives know his wishes. When he left this world, he left a legacy of a new life for me and others.

I carry his gift inside me now and  no longer breath though the oxygen tubing I depended on.  

I went to my Transplant clinic appointment at Harefield hospital today and it was good news have been told that I can have two months off clinic and got a agreement that I could go on Holiday to the coast in August to visit my wife's relatives and get a break.

Let me hope that the people waiting will not wait for long and that next transplant week the rates of organ donation go up dramatically and enable more people to get the transplant they need.  

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!!!

A mother hears her daughters heart again

Then anyone who wants to can sign the donor register here

Good Luck Justine

Just a quick update to say good luck to one of our athletes competing today in the transplant games she is Justine and you can find her Blog at

Life after Lam and Double Lungs 

Her website is  Justine Laymond 

Where you can see a very good video about her story 

 Lets wish her lots of luck and hope she brings back some more medals for United Kingdom She supports the following charity for her condition so please take a look

LAM Action

Another great lady is Holly Cocker who has put together a photo exhibition for 

 National Transplant Week from July 4-11 

Give and Let Live, will be on display at the second floor of the West London Renal and Transplant Centre if you can't make it to the exhibition you can see the work at Holly's site at
Holly Cocker Photography 
Please check out some of her other work as well while you are there and you can follow her blog if you like where she has her latest work including videos she has made. Her most recent about Pete A Cystic Fibrosis sufferer who is deaf and the difficult decisions he will have to face in his life.

Support Rachael and CF Awareness

The Subject of my blog tonight will be some of the other people that I have talked with or heard of while I have been waiting for my Lung transplant they are so nice and selfless and deserve all the good things in the world.
The first person I will mention is  Rachael Wakefield

She is the blogger responsible for Anything But Ordinary and also the inspiration for this blog.
You can find on my blog list she had a Double Lung transplant back in March but is taking a while to get fully well, as you can see if you read her latest post. I would like for everyone to send out good thoughts for her and those who are inclined maybe pray that she will get over her problems and make a full recovery.

The other person I would like to talk about I have met on Twitter and she campaigns tirelessly for CF (Cystic fibrosis) awareness. She has two sons with the condition who are 15 and 7 and I feel that I must bring you attention to her present project her name is Lorraine Barnes
She has been contacting celebrities to wear T Shirts and take photos to post on Twitter to show their support for awareness of the condition which leaves many suffers needing Lung transplants very young in life due to the damage it causes to their lungs.

Her website is at Barnes Boys  

Her Twitter name is  @CysticFibrosisF

Another one of the bloggers on my blog list is someone who suffers from this condition is Jodie who is the blogger on Transplant list is waiting for a double lung and heart transplant because of this condition

If you what to know more about this condition

have a look at   C F Trust

Finally have a look at her video and see who has done their bit for C.F. Awareness

see how many people you can spot?

Celebrity GET IT OFF YOUR CHEST