March on To Spring

Went to my clinic appointment this week and despite my cold leaving me gasping for breath , I have succeed, with my reduced immune system in overcoming it. My lung function has returned to a stable level and I am feeling more confident that I will not have any more problems now.
I saw Dr Carby who was happy with my progress I had lost a small amount of weight since my last visit and although my lung function was a bit reduced he was happy for me to leave Three months till the end of June until my next clinic visit!!
The only slight issue that arose was my kidney function once again was a concern.
I am back on the 26th for some advice from the dietitian, so he requested that I do another blood sample then to check my Creatinine levels then decide what must be done. He suggested that medication change might be on the cards, but I am hoping that things will have settled by then with any luck.
When I questioned him about the cold he said it could take up to six weeks to get over completely and I should carry on with the Ventolin till I was sure I was better.     
This was the first bad cold that I have had since having my transplant and I must admit it scared me,it brought back memories of what it felt like when I was breathless before transplant and having nebulisers of ventolin reminded me of my asthma attacks in the past.

The statistics that you are quoted before transplant are not encouraging 80% 1 year survival 50% 5 year survival and my consultant said something that stuck in my mind "If you get seven years from a lung transplant we would consider that a success." People think that a transplant is a cure, it is not you are swapping one condition for a new one one that needs constant vigilance, monitoring, medication and positive attitude to manage.Add a large dose of humour and faith in your God and your transplant hospital and you can help the stats in your favour. You can never beat the odds completely but I hope to have a good go!!!

I read a story this week about a woman who has become the longest surviving single lung transplant patient. She celebrates the 20th anniversary of what was the first ever operation of its kind. On May 18th, 1988, With only days to live, Vera Dwyer, Carrowcrory, Keash, had the history-making surgery in Harefield Hospital, London.
You can read the article here   
 Transplant can be such a tightrope to walk at times and some of my friends have slipped and fallen! This illness reminded me of this, how grateful I am to still be doing well.

Even though I was not feeling well I have enrolled in a gym. One of the trainers is a physiotherapist trained in cardiac rehab and I had my first meeting just before my Harefields appointment. I will start my attendance when my cold is completely gone.
The other thing that I have done is to get a new appointment with the Churchill to find out about my Bi Pap and if I still need to use it.That will be coming up in April and I am hopeful that I may stop using the mask each night if my CO2 levels are stable now.

While I was in clinic I was lucky to bump into Kerry Maletroit who was  looking good and still recovering well after her trip back to Jersey for a family reunion recently. She had a successful day at clinic and her lung function continues to improve.
One of my other friends was also in clinic, Dawn Bostock she was hoping for a bed to sort out some problems she had been having. She is now getting sorted out in Harefield, but due to the amout of people with  colds and bugs she had to wait for a while for a bed. I am sending out all my best wishes to her for a quick resolution of her problems and a swift return home :-)

Finally I had another competition at the camera club and although the picture didn't score well I thought I would include for your veiws it it is a local landmark and one my contributions to the "Industrial landscapes" competition,please let me know what you think of it. 

Sunset over Didcot B

  You can also see another of my winning pictures at the website for the club now that has been posted, it scored 20/20.

It is a typical Oxford picture looking out on Magdalen College bridge where the Oxford May Morning Celebrations happen. The view is taken from the Oxford University Botanic garden.
If you what to see the photo it is Here

Older and wiser

My holiday is over and time has ticked on. I had a great time and enjoyed being by the sea again, for my wife it was a chance to catch up with her family and for me a chance to revisit the old haunts that I frequented when I was training to be a Nurse.
I was so aware of the differences that a year and a transplant had made to the visit and although I didn't manage to do as much this holiday some things I took in my stride that I could not manage last year.I will talk more about these later.
One thing I did when I got to Hastings was to buy myself a compact camera to use when I am out and about I had tried out a couple and settled on a Nikon P300 which I found was the best at image stabilisation which I need because of the shakes I get through anti rejection medication I have yet to settle on a DSLR to buy so I felt that this would be a good stand by second camera.

During the first week we went to Eastbourne to attend the annual airshow and I was able to get some great photos of the planes I used my Canon DSLR to take them because of the zoom required for good pictures.I got many nice picture of planes that did a flypast over the pier

Spitfire

I was also impressed by the aerobatics team that did a demonstration

 My family were shocked by the noise of the F16 that flew over

Finally, later than planed, we were treated to the the premier aerobatic team who were only able to do a fly past due to the weather conditions having deteriorated by this stage

Red Arrows

 The rest of the holiday was filled with a lot of walking up and down hills which I coped with better than I thought I would and I was able to spend a day at the sea in Eastbourne on one of the days when the weather was good I had hoped to walk along the beach and get some pictures in some rock pools but alas it was not to be as the tide times that day did not allow it but I did get a picture through one of the groynes looking towards beachy head using my new camera

Holywell

I also was able to take some pictures of  Brighton and the famous pier using the easy panorama function which I think you will agree does a good job

      One other trick that my new camera had in store was slow motion video and so to illustrate i have included a small piece of video of some seagulls on the seashore 

I am so grateful to have made it back to Sussex again and without my transplant I feel sure that I would not have had this opportunity. I sat by the sea drinking coffee and realised how luck I was to be able to breath in the sea air with my new lungs.
I gave thanks to the anonymous 45 year old donor who selflessly left me the gift of life 10 months ago that has enabled me to have a quality of life again that I thought I had lost forever. I have recently moved into my last year of my first half century. The experiences I have been though have made me realise how lucky I am to be writing this blog.
I follow people who have not been as lucky as me and are still waiting such as Victoria Tremlett she is presently deteriorating and desperately waiting for a transplant you can follow her blog on my blogroll

Past the Point of No Return she is needing a transplant very soon or she will die.

She is one of the people who is in danger of dying while waiting,

as three people do every day in this country  

If you are reading this and have not signed the donor register please take the time to click on the flashing heart in the right hand column of this blog and that will take you to NHSBT website where you can add yourself in a couple of minutes.Then you will receive a card in the post to carry with you in your wallet or purse.When you do, please speak to your next of kin about your decision so that they know what you want  as they will be asked about your wishes.

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.  

Six months Post Transplant Thank you

Six months ago I was in ITU recovering from my lung transplant and awaiting a move to the ward on Harefield Hospital where I spent time recovering.
Can it only be that long? It feels like a lifetime and it took a lifetime to get me here.
A lifetime that my donor gave me.
A man not much younger than myself, who's life ended.
He and his relatives were unselfish and had considered what may come after the end of his life.
They offered consent for  his organs to be used so someone like me could live a better life

I would like to say Thank You to this unknown man who saved my life

Your lungs expand inside me and I take joy in the experience of a deep breath.
I can walk and catch breath without panic.
I have left my oxygen behind, my wheelchair is gone.
I can walk in the sun.with my children
I can enjoy a bath or shower and wash my hair without breathlessness
Stairs are possible,lifts are optional.

Six month on I am starting to feel like my old self again but a self I had lost to illness a long time ago

I have had some problems along the way as anyone who has read this blog knows.I still have a long way to go and the journey is hard but thanks for the chance to try

I have met some great people who have been transplanted and helped me with the journey.

People who have been waiting and are still waiting who I hope I can support  as they wait.

Finally the great people who support all those people involved in the transplantation process the Nurses Doctors and relatives and the many selfless people who raise awareness for organ donation.

Thank you all

As I look forward to the next six months I would love to report that all the people I know have had a successful transplant and are doing well if you agree with this sentiment please sign the register for organ donation if you haven't already.If you have please talk with your friends about organ donation, show them this blog if you like, you could raise awareness on your facebook page or twitter.

Lets get the message out there

Organ donation

Give the Gift of life

Three people die each day waiting for a organ to be donated. 

Only 28% of people in UK are on the organ donor register

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