Moving on towards Spring

Hi I am glad to say the weather has been improving, and the snowdrops have started to bloom which can only mean one thing. Winter is nearly over and spring is just around the corner:)
I always dreaded winter when I was unwell.
It was the time when I had more of my chest infections than usual and also Flu time! It has taken a while to lose that dread but this winter I have been okay and am looking forward to my next visit to Harefield Hospital in March with minimal concern.
My eyes are better than they were but it seems that eye drops will be a constant companion in my life from now on.I had a recent visit to the local chest hospital to get my equipment checked and serviced I was provided with a new mask and tube and it seems that my Bi pap is working well.

Now my eyes are better I have returned to swimming regularly and provided ILIVE IGIVE a photo after they sent me a great T Shirt to wear to promote organ donation

My local pool where I am swimming a mile every session 

I was also able to go to a great fundraiser and birthday party for my friend and transplant superstar
Justine Laymond it was held at Chelmsford at a local hotel and because of the distance I stayed the night.
It was a chance to meet many lovely people including Justine's mum and dad and have a great meal with great company and help Justine raise the money she needs to attend the World Transplant Games in Durban South Africa, where she will again be representing United Kingdom  if you would like to know more click this link
World Transplant Games in Durban South Africa 28th July - 4th August
I was able to take my new camera and take some pictures but because of the lighting in the venue I found it a bit of a challenge to get many really good shots  but I have posted a few which I liked

The venue

Justine 

There was singing and dancing

and even an impromptu band appeared

they had a nice bar 

And so....... I got a bit drunk and had a great evening

 If you want to help Justine raise the money she needs to get to the world transplant games please click the following link 

Justine Laymond Just giving

the other thing that happened since I last posted ITV had a series of programs about Organ donation and some of the people who's blogs are on my blog roll appeared so I have included some links

Kathryn Graham - Waiting for heart and lungs ( Kath's Transplant blog)

Stacie Pridden - Waiting for heart and lungs (life is worth the fight)

Sophie Clarke who received a Double lung transplant  ( Friend on Facebook)

Sally Hart - Donated her sons organs after a tragic accident (Tobysgift's Blog)

Seaside Memories and New Beginnings

I have been away for a while but I am back now.

My mums death was still in my mind but I resolved to leave the issues of the estate and sorting out that will still needing doing until I returned to Oxfordshire.
Managed to get a couple of weeks by the sea with  Liz's mum in Hastings. The weather was kind to us,but although things conspired to disrupt our holiday, like my Bi-pap machine braking down just before we left!
We managed to get some much needed rest bite from events that had been happening before we left.But I found myself remembering past holidays with my family in Devon and the Isle of White now that both of my parents have gone and I felt a bit lost and alone.
With the Olympics happening at the end of the holiday I thought I might get a picture of the Olympic torch relay in Hastings, but unfortunately we were travelling the night when the torch came into the town so we missed it. I managed to watch it go through my local area but more importantly a friend of mine who had a double lung transplant just before mine was nominated and carried the torch though Reading

Richard Burbedge  

Also competed in the British Transplant Games and got Gold an inspiration to all those who have been transplanted  

While away I was happy to find out that that the Red Arrows were to fly in Hastings as part of the town's  Pirates Day This was an attempt to break the world record for the most pirates in one place. They were successful with 14,231 pirates gathered on the beach, dwarfing the Cornish town of Penzance's previous figure of 8,734, allowing Hastings to reclaim the title it previously held in August 2010.
I was really happy I was able to use my new camera to get some shots of the Red Arrows when the performed over the sea and have included a photo for your enjoyment.

I was also able to get to the pub on a couple of nights while I was in Hastings it is not something I do much and haven't had a drink for a long while prior to this but I spent a lot of time in a pub called the "pig in paradise" on Hastings seafront while in there I was happy to find out about a friend of mine on facebook who had been called for her transplant at Harefield Hospital  Kimberley Liane Kneil
 who writes "Being Kimberly" in my blog list. Thursday 26th July 2012 she went to theatre to start a new life thanks to a selfless donor and their family and is now doing really well as this photo taken yesterday shows

Just shows how a transplant can transform lives 

Other good things have been happening... 

Since I have have been back from my holiday I have started a weight loss group that is supervised by dietitian and psychology and will run for a year. During my first couple of weeks I didn't lose any weight but I   did committed myself to go swimming as one of my activity goals.This is something I haven't done in over ten years. I was a bit apprehensive at first, being overweight and having all the scars from various chest drains I had before and after the transplant I felt self concious.But as one of my goal post transplant was to swim again "What do I want to do when I get new lungs" 

I went with my son and did it.

It was a bit hard at first as I was still not confident with my new lungs in the water but although at first I couldn't do a full length, after a while I was able to swim using breast stroke and did a few lengths although I had to rest after each 25m.

Things have improved since then and I am now losing weight slowly and swimming twice a week I am one doing One Kilometre per session (40 lengths) not bad after my first month and only 8 sessions :-) I am able to do 2-3 lengths before resting I am doing the crawl a bit, but this is something I will have to work on as I find this hard on my lungs at present and have to rest after one 25m.

I had a good visit to Harefield and was seen by kidney consultant who told me my renal function was solid my blood pressure was great and told me to come back in 6 months I was also given a clean bill of health by transplant doctor and three months off clinic.While I was there I had the chance to meet Kimberley whom i spoke about earlier who was waiting to be discharged and I also meet another Lung transplantee called Dave Southam I follow on Facebook. It is always good to connect with fellow Tx ers and meet them in person.

My brother and I have been continuing to sort out the aftermath of my mothers death and one thing that brought it all back was my birthday on the 30th August. I wished that she had been there to celebrate it with us. But  I am sure that she was present and watching over us as I spent a quiet night in with the family. 

We had a Chinese take away and everyone enjoyed themselves.I will be going out at a future date with my wife for a hot Indian or Thai meal and a drink as the kids don't care for very spicy food.

One other person I thought about was my donor a 45 year old who changed my life and allowed me to celebrate my mother's 80th birthday with her before she died, see my children complete there secondary education and move onto college and start to live the next 50 years of my life healthy and happy.

I will always be eternally grateful to him and his loved ones for allowing the donation of his lungs to help me live a new life! 

If you would like to help someone live after your death and you haven't already done so, please

  Sign the donor register 

Then let your loved ones know what your wishes are so that they will know what to do. 

Spare them the uncertainty you may regret later it if you don't do it                

I have resolved to to spend the next year of my life on revisiting my life again going to places that I went as a child with my parents,now they are no longer with us:(
I  particularly want to visit Brixham,Paignton,Totnes where I holidayed as a child.Visit my family, cousins in Bournemouth and up north and  my Uncle in the Isle of White.I really hope that I will also be able to go to Glastonbury festival next June but there are some logistical obstacles to overcome to achieve that!
But I do intend to fulfil my list of things to do with new lungs and hope that I will be fit enough to do some fund raising and find some voluntary work or employment.Then I hope that I can set myself new challenges to push me forward to greater achevements.

Watch this space because great things are coming I feel sure!!!

Good Times and Support

I have been very busy over the last few weeks
I have been out to the gym twice a week for my pulmonary rehab course and am finding it great to be able to push myself again. I am finding the leg exercises are the hardest on me but am slowly making friends with the treadmill and exercise bike although I think that it will take sometime to get fitter after the inactivity since having shingles. The people on the course are great and I am enjoying getting out.
I have also been successful with another picture in the most recent competition at the camera club the subject on this occasion was Doorways and Gateways and I scored 20/20 for a picture taken looking out of Oxford Botanical gardens towards one of the Oxford colleges while two bikes were passing a typical Oxford sight I was very happy with this result and I have included the picture for you to see.

Gateway to Oxford Life

I did put another picture in but it scored less well but got a good response from the audience the judge felt that the doorway itself was not interesting enough to warrant a high mark It was of a piece of local graffiti which has since been painted over but impressed me a lot with its Oxford connection.

Alice was here

 

  Please let me know what you think?

The other thing that I did this last week week was to attend Harefield Hospital for the second meeting of the Harefield support group.I have been involved in. 

Nicola Langlands who runs Look beyond the Heart is the driving force behind the group has worked with Harefields management to organise a meeting room. With support from Harefields Nursing staff, patients who have been attending clinic appointments plus patients on the transplant wards have been able to share their experiences in a informal setting and also been able to give feedback about their transplant experiences this has allowed people at all stages of the transplant experience to ask questions of others, network and make new friends

To allow the communication to continues between meetings and as a place to share information and support online Nicola has set up a Facebook page 

Harefield Transplant and Look Beyond The Heart Focus Group

I am one of the administrators and at present the group is a open group so people can join upon request.
It will be open to all people who have contact with or experience of the UK transplant services we hope that it will grow into a valuable resource for everyone to share information and offer support to one another so please join us soon :-)

While I was at the support meeting I was able to meet a several people. two whom I have mentioned in this blog in the past.
  The first one was Justine Laymond
She was up for a clinic appointment and will soon be sailing around the world on the Clipper Around the World Race as part of a crew of people raising awareness of transplantation.
She is the first double lung transplantee to ever attempt this gruelling race.But as a multi medal wining Transplant games participant she is looking forward to the challenge.
The second person I was able to meet after following her progress for so long was Victoria Tremlett
after a four year wait I was so very happy to hear that she had got the lungs that she had so desperately waited for. She had returned to clinic as part of her follow up care and I was able to to have few words with her and wish her well with her continued recovery.

I also took opportunity to get some bloods taken and sent of to check the levels in my blood with Christmas approaching I wanted reassurance that I would not need to attend until the new year.
I had a small amount of swelling in my legs but I was happy to find out that my blood work showed improvement since the last sample had been taken. I am presently waiting for a result from my anti rejection medication levels but feel much happier to breath easy for Christmas, can't wait!!

Holiday - Let the Games Commence

It all systems go for my holiday:) I hope to spend two weeks on the south-east coast in Hastings this will be my first holiday since my Transplant and I am looking forward to meeting up with my wife's family and hear the news.
I must be truthful when I say that I did not expect to make it to see another holiday by the sea last year before my transplant. The organisation that was required to get an oxygen supply and equipment I had to use such as the wheelchair and oxygen bottles made the whole process very stressful for me and the whole family. this year it will be better as now I am able to tolerate the hot weather and the inclines that I will encounter I will still have to carry a bit of stuff like my Bi pad machine and nebuliser and the various pills that I consume each day but I will be able to do many things that I  avoided last year.I hope that we will be able to attend the Eastbourne Airbourne Airshow and I will try to post pictures that and of my other adventures if I can.

The other thing that has happened is I have started my pulmonary rehabilitation course at the local gym unfortunately due to me being away I will miss some of it but this will continue till September when I get back.I must be honest when I say I was worn out when I had done the first two days. I found it great to be able to push myself and was able to do much more than I thought I would, so I was glad.
My wife has also been referred  for fitness training though our GP surgery so when I have finished on the rehab I will start to go for supervised fitness sessions with my wife if she wants to so we can both get fit again.

I have also been inspired by another transplntee who I know, who is presently at the UK transplant games and has managed to achieve 
Silver Medal in Archery with a score of 278, and a Bronze Medal in the 5k run.

he said  on his Facebook page today "So proud to run as part of the Harefield CF 4 x 100 metre relay team today. Running for everyone with CF, everywhere." 

Congratulation to  Richard Burbedge @AwoogaBurbs who had several problems on his way to the games including a serious sprain to his ankle and a visit to hospital that nearly put his plans on hold so I am glad that he achieved his aim to represent his country  But most of all his win  represents the gift of life his donor gave him and me that allow us to live better and more full lives

 

This year at the transplant games 15 transplant  patients from Harefields Hospital are taking part in the  British Transplant Games 15 people who lives have been saved by donors who signed the donor register HERE

There is a facebook page you can visit to find out more Westfield health British Transplant Games 

If you would like to know more Transplant Sport in the UK may interest you @TransplantSport

Great Britain Transplant Cricket Club will also be of interest @gbtcc   

There is also the Northern Ireland Transplant Association  at their twitter account @nitransplant

 So I will say happy holidays to you and go to bed as I  have a drive to do tomorrow, hope to post more and some pictures of the seaside soon :-)

Rainy Weather-Must be Holiday Time

Typical,just as we prepare to head towards the Sussex Coast the Met office issued a severe weather warning for extreme rain were we are going.It is Friday the 13th today,I am not superstitious but the last one was in November 2009. If you look at the missed call page at the top of the blog you can see why I might be a bit concerned.We will leave tomorrow now and take a slow journey down to the coast, so that the holiday gets of to a good start with no stress.

I thought that just before I go away I would wish best of luck to all the athletes competing in the British Transplant Games this year.This year’s competition, which runs from August 19 to 22 in Bath, will involve more than 700 participants and see a record number of transplant athletes competing for the first time.

One of those participants this year is someone I have talked about before in this blog that is Justine Laymond she is on twitter as @LamLungArtist She is playing squash, as well as sprinting, badminton, long jump and the relay Read more I spoke with her recently and she was quite modest about her chances But I know that she would love people to follow what happens and realise that the point about the games is Organ Donation awareness.

Another participant is Jonathan Bowman who's story is here he has competed five times but for every one of the athletes  there is a story of a selfless person who has donated organs to transform their life you could be one of those people.Register as a organ donor and prevent your organs from being buried or burnt be a hero be a donor

Lynne Holt of Transplant Sport UK, said: “We are delighted to see more people taking part in the games for the first time and wish them all the best of luck. These athletes should be an inspiration to people, as they grab their second chance at life with both hands, clearly demonstrating how well they are, after recovering from their life-saving transplant.
“The aim of the games is to inspire people to sign the NHS Donor Register and give the gift of life. It only takes a minute to sign, but can give someone a whole lifetime to enjoy.” 

So if you haven't signed the register now is the time to do it you can click on link below or on theFlashingHeart picture in the top of left column of this blog NHS Donor Register

 

Transplant Week Starts #Transplantweek

Good and Bad news for the start of Transplant week 

which runs from the 4-11 July.

The bad new was posted by Rachael Wakefield
Who informed us that brave 4yr old Katie Williams died today whilst awaiting her 2nd heart transplant so if you havent signed up on the donor register please do so today you can find a link on my blog permanently or go there now at
UK DONOR REGISTER it wont take much time, but may save the life of someone like Katie when you have gone.Don't waste your organs please recycle them.

The really great news is Justine Laymond  whom I posted about in my last post has won several medals for Great Britain at the transplant games that happen in Sweden this year.
She got a Gold medal, Four Silver medals and a Bronze medal for the country and she has sent a great picture of them to share with you all so I would like to say congratulations from the whole of the UK for this brilliant achievement. maybe one day I would love to go and see the games but I dont know if I would have the courage to compete myself. She said of the games "Totally shattered beyond belief,my lungs did give me grief,but I was SO determined"
She has sent a great picture showing all her medals and deserves all our thanks for a great start to the transplant week, and total respect for the effort she made to get the medals. I have been following her preparation for the games and she has worked so hard training for so long to achieve this.

Justine you are a Star 

If you are still not registered as a donor listen to this it may help you decide MP3

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.