2013 Here I Come

The new year has started.

I thought I would do a review of the year that just passed,and some of the plans for the new one

It has been a interesting one, and for some people life changing, but for me quite sad.The loss of my mother mid summer has been a shock to me and has reminded me how fragile life is.

I am finally on my own now, both of my parents have gone, just me and my younger brother.

It has been a time of change that has seen my children move from secondary education on to college, my daughter studying A levels and my son learning furniture making.This change will continue in 2013 with my daughter moving on to University and leaving home and I feel that life has been on hold for the last two years and that this year is the year for me to get on with living again.

As you know if you have been reading my blog for a while I have been able to start swimming again and getting fit and trying to loose weight.I hope that I will continue to loose more and will be able to do more fitness activities to help me.
I also hope to do some travelling during 2013 and hope to get a motorbike.If the weather is good I will be getting out and about on my own more.  I have found the start to this year has not gone as well as I hoped I had a minor crash in the car when leaving a parking space outside the doctors and ended up damaging the wing and bumper on my car this has annoyed me as I had to make a claim on my insurance to get it repaired which will impact on bike insurance in the future but it can't be helped :(  The car still needs some work doing so in the near future I will have to return it to the garage to get this done but for the moment I am just happy to have it back after a couple of weeks of courtesy cars, an experience I am not willing to repeat just yet.
The main reason I have been remiss about updating my blog is I have been having some problems with my vision for about a month.I have been having great problems with blurring and lack of focus with my vision deteriorating as the day progresses. I attended the doctors as I was having problems with seeing the photos on the screen at camera club and she referred me to the local eye hospital. I was very worried that I may have developed some condition due to the medication I have been taking.I was reassured when I attended as the problem I suspected - glaucoma was checked and found to be unlikely.I had to wait to attend again with Liz so she could drive so that they could conduct a full eye exam using atropine drops to enable them to see the retina and the back of my eye this all proved that nothing untoward was evident.But it seems that my suspicions were correct, I have developed dry eyes due to my use of Bi pad overnight  and long term steroids I have been given eye drops I will need to use from now on. Although they are better than they were I still have problems and need to rest my eyes much more often now and add another medication to my daily regime!
One of the good things that has happened since the new year started is I have bought myself an new tablet a Nexus 7 from Asus :) It has been fun and has encouraged me to learn more about Android operating system with the thought about learning more about creating apps in the future.
To this end you may have noticed that I now have a Android app for this blog so people can read my blog on their android phone or tablet you can download it or use the QR code on the blog.I  hope that people find this useful.
I have also removed the message board widget that was on the blog as it had collected a lot of spam messages.I am hoping to have a revamp of the blog in the near future and have some ideas about making some changes.I would love to know what people think about this and what they would like to see in the future. Personally I would like to make more information about transplantation available. A more comprehensive list of some of the blogs people are writing about transplantation and more places to seek help and advice across the internet. 
The other thing I have bought myself is a new camera it is smaller than my DSLR and made by Olympus and has image stabilization in the camera body to help with the shaking that I suffer from with my meds. If you are interested it is OMD EM5 Olympus and it came with a extra 45mm portrait lens. As it is splashproof I will be able to use it when weather is poor so keep an eyes out for new pictures from it in the near future. 

Finally I thought I would include some pictures from the most recent competition we had a  the camera club the subject was quite hard "The letter Y " so I included the following two pictures

Yellow Sky over Didcot

Yellow Aqualegia

  The first picture taken with a small compact on the way back from Harefield scored 15/20. The yellow Aqualegia taken with my Canon DSLR did a more respectable 17/20. I am hoping that my new camera will be scoring well in competition in the next few months watch this space!
I am now able to go swimming again and am going to be attending a fund raiser for my good friend Justine Laymond in february as she will be attending the World Transplant games in South Africa to represent UK again if you wish to help her you can find out more  here - Justine Laymond just giving
I hope for my next blog I will have some pictures of the event to share:) till next time stay well and if you still haven't signed the donor register you can here

New Year of 2012 Starts Busy

With January almost over I thought it was time for a new entry to my blog.
During the last month I had a meeting that I attended and I had a couple of visits to Harefield Hospital so it was quite busy.
The first visit to clinic was on the 9th and although I was okay I had some issues with my chest my lungs felt congested in the upper right side and this combined with the swelling of my legs was a cause for concern. I talked with the doctor and she suggested I use ventolin nebuliser a couple of times a day and a drug to thin any congestion on my lungs to help me clear them.
 I had been told is that after a lung transplant the body can't clear the natural secretions from the lungs and you need to cough to clear them regularly this is because the connections are severed by the operation.She also told me that I should bring forward my appointment with the consultant who has been monitoring my kidney function as some of the levels were elevated that indicated some problems with them,this was a bit of a concern to me. I was another appointment for clinic in a week.
All was not doom and gloom as I was able to catch up with a couple of people while I was in clinic I met up with Victoria Tremlett looking happy and healthy and Richard Burbedge who is one of two transplant people I know who are carrying the Olympic torch in July.

The following weekend on the 14th I was booked to attend with LLTGL for their speaker project, a session to help people who have had transplants use their experience and tell their story to encourage others to sign the organ donor register.
It was a great day and I would highly recommend it to anyone who wants to raise awareness about the issue of organ donation after having a experience of transplantation.It was quite emotional to here others stories and tell our own.It took my right back to the transplant again,but also gave me guidance as to how to bring out the emotional elements that people would be able to relate to and par down my story to the most essential elements we also practised our story within a set time to help when speaking in public.
I had a great day and met Emily Thackray who is a lung transplantee who suffers with Cystic Fibrosis and who set up the campaign with her friend and is now the chief executive of  Live Life then Give life. They are a great charity raising awareness of the issue of Organ Donation.
Two of the people I follow on the blog list are Ambassadors Victoria Tremlett and Kerry Thorpe.  
Another two of my blog list are also Advocates for the charity Victoria Glenn and Kirstie Tancock.
After my session I was luck enough to have a chance to meet with Kirstie Tancock who was also attending the afternoon session of the project and is looking great after her double lung transplant.
Please take a while to visit the charity's website and learn more if you fancy raising some cash for them have a valentines cake bake they  have some downloadable resources to help you just click on the link below

Great Valentine's Cake Bake 2012 

               The following week on the 16th I attended the clinic again and was seen by the consultant due to the medication I had been on my chest was less congested and my lung function test had shown some improvement from my last visit.the doctor was very pleased and suggested that I continue with the medication to help me clear my chest and use the ventolin if I needed it but told me that it would be important to maintain my other nebulisers as a preventative measure against any another bugs in my lungs then she told me that I could have two months off clinic as she was happy with my progress.

I will be back in February for my appointment with the kidney consultant and may get a heart echo done to check that the swelling in my legs was not caused by my heart, but I was very happy:-)  Since my appointment the swelling has now improved a lot and only happens in the evening after being on my feet all day, not unusual as the doctor reminded me.

Finally You may have noticed that I have added a chat gadget on the blog on the left column  if you would like to leave a message on it I would be very happy:-) If you have any questions about anything on the blog please feel free to use it and I will try to answer you.  It will allow me to have a two way conversation with some of my blog readers and hopefully learn more about what you want from the blog.

Things Are Getting Better Now

I am feeling much better now and feel that the shingles has finally gone!! 

Good things have been happening with my photography and I have started a new page on my G+ account. You may have seen this on the widget on the right hand column of the blog.

Many people are starting a business page to promote their photography or company but I felt that I would like to share information from all over the world about transplantation, developments and up to date research.
The other function of the page is to offer somewhere for people to publicly state their support for transplantation and Join a group for transplant advocates at
Group As a listing of people on G+ who have signed the register.

You can visit my new page Transplant News and I would love it if you +1ed it share it and add the page to your circles so that you will be able to get the news that is shared.


Other things to report is that I am about to start my pulmonary rehabilitation  course again on Friday with a assessment of my fitness then I will start the six week course on the Wednesday and Friday the following weeks this is happening at the local gym and although I started the course once before I had to stop because of the case of shingles that I got :-(   I am looking forward to it and will be on it till early in January when I hope to continue with my fitness improvements with the extra impetus of new year resolutions to fire my enthusiasm.I have yet to brave a swimming pool although I have been told I could as the extra weight I have put on is a bit of an embarrassment.

I am also hoping to go fishing again after getting the okay from Harefields team at my last appointment might be that i try a bit of pike fishing first with spinners and plugs.I realised that the last time i when fishing was back in 2007 when I caught this pike with my son

  I am hoping now I can breath a bit better I will be able to catch a bigger one!   

My photography is coming along well and in the first competition of the season I scored two 17s with my first two entries I thought I would include them for your comments 

dragonfly

This was taken at the Oxford University arboretum local to us, when I was taking pictures of the fall

Steller's Sea Eagle

This massive eagle was flown at a local event near us in the town as part of the attractions and stood three feet tall it had talons the size a child's hand a very impressive bird can be seen flying at Warwick Castle which is were the hawk show is based

One final bit of good new is that one of the pictures that I took on my holiday before the transplant is being used in the local camera club regional competition "The Rose Bowl" run by

CHILTERNS ASSOCIATION of CAMERA CLUBS in the first round our club won the round!!!  

I have been told that my picture scored highly at 19/20 I have included a copy of the picture for you to see it was called "winging it "

  let me know what you think?

If you like these pictures I have been including these and others in my G+ photo blog along with other inspiring pictures that I have found around the internet. 

You can see them at  Marks Photo Blog

The last bit of nice news is that one of my photos is being published in a calender being arranged by a couple of the club for sale to members if you want to see the photo it is on the club website 

Wallingford Photographic Club 

Getting On With It!

While I have been away things have carried on in the world at large and now I am home again, I don't know how and where I will fit in now?
I have potential for a new life I am still recovering and the doctors say that could take up to 6 months to finish all the healing my body needs to do.
My body is still fixing itself.

This was brought home to me today as during the night my wound sprang a small leak that required dressing in the Transplant Clinic today at Harefieds.This is my second visit back to clinic since I left and I shall be making many more visits to ensure that the lungs I have been given are looked after and monitored for any signs of trouble that could indicate a bout of infection or rejection.
People often think that when you get a transplant you are cured of the problems that you had truth is you swap one condition for a new condition.

You get a Blue book and you write all your drugs in it each day then you tick the book when you start to rattle after take all your medication.
You also weigh yourself daily a 1 kg increase may spell trouble.
Take a temperature each day If this rises over 37c it could indicate infection,
you write those readings in the blue book
You are given a  Spirometry machine and each day you blow into this to find out if you lung capacity is good this produces two readings, from this the doctors can assess you respiratory function.If these readings go down by 10% it could indicate rejection

For the rest of your life you wage war on your immune system with drugs that allows your body to tolerate the bit that isn't you! With time it becomes easier for the body to deal with this  but in the early stages it is hard on you and your body.I shake and suffer side effects and at times despair if things will get better.

But things already have.
I have new lungs I have seen them on the latest X-ray.
They fit snugly in my chest now healthy lung tissue extends from one side of the lung to the other.
There are no large holes or damage to the areas though which I exchange my breath with the world.
I am so grateful for the gift but I am impatient patient  

We met up with @russwillis  and Dora at Harefields today they were at clinic to and looked a bit fed up with being there but it wasn't long till we were all on our way blue books in hand. With the hope of a relaxing weekend to come.
It will be back to clinic for us on Monday and Thursday next week again, we were given a bag of dressings to sort out the wound care out and bid farewell to Harefields till next time.

Please remember if you haven't signed up on the donor register please do! or tell you friends why they should

Discarged! First day home

After a lot of sorting out on Friday and a last minute rush for medication I was able to go home with my wife I had a shower before I left which tired me out and packing up all the stuff took a while but eventually we were on the road back along the journey I had done so often before my transplant.
I was surprised that riding in the car was quite so bumpy and by the end of the journey I was suffering with a few aches and pains requiring pain killers.we left some chocolate fancy biscuits and a card for the staff who were really helpful and kind.
Liz was able to park the car near the ward and despite the fact that my feet were still quite swollen I was able to get in and we left with my mum in the back helping us with the bags.the weather was wet and cold and by the time we got home I was quite worn out.
It had been five weeks and five days when I woke up in my bed today. I had some apprehension about being at home and after so long and after coming in last night had stayed upstairs but it was great to be at home. I woke up a bit late and did all the relevant medication and had some breakfast and spent the day getting used to this new way of life.
I spent some time on twitter and managed to talk to another patients husband @russwillis that I had met while I was in hospital. He had seen my picture in ITU and realised it had been taken in Harefields he contacted me and congratulated me about the transplant His wife had been a patient on the ward for heart transplant.Then about a week later he tweeted to say that his wife Dora had been admitted for a short admission and we were able to get together and share info about the transplant community and he gave me his blog address TruefallNess and a couple of other sites such as  Twitter times as luck would have his wife was discharged the same day as I was, which was nice as she was ready to go too and also hoping to get home.

I was also able to meet someone else who I had talked to on another site that i am a member Transplant Cafe her husband had his lung transplant at Harefields and early on on my time waiting she had been very supportive about  my missed calls now it was time for me to be supportive as her husband had been having some problems I offered my support and will continue to offer a ear to her worries in the future and hope that things improve for her and her husband in the near future.It was so kind of her to pop in and offer congratulation.
I will be back at Harefields on Monday for the transplant clinic and will be spending a lot of time going though checks for the near future  gradually I am understanding what a change this will be in my life but also what a precious gift I have been given and would like to say to anyone who has yet to register as a donor please click on the flashing heart link on the left column to go to the form and offer a gift of life. Remember that if you do sign up please let your relatives know your wishes as they will still have to give consent and that will help them if they know your views.
  

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