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

Visit to Clinic results in one month off !

I attended the transplant clinic and was given a clean bill of health by the doctor, he was happy with my lung function and X ray and stopped one of the meds that I had been on since the transplant, also cut the water tablet that I had been taking since my collapse.Then he said that he was happy for me to wait one month till the next visit!
This will be the longest that I have gone between clinic appointments since my transplant.It was great to leave knowing that I would have some time to make plans and make the most of my new lungs between visits.I drove home with a fresh sense of freedom but also a slight worry about how things would go.

I got back home and my worries proved groundless and things have been going well I have started to cook again and was able to cook roast dinner for the family on Sunday and clean up afterwards which to some may not be much, but before I was transplanted I was unable to deal with the cooking fumes without breathlessness, I am really enjoying helping out again.

I put some pictures in the latest competition in my camera club and scored 17/20 for one even though I entered  at the last minute with little preparation I was happy but will try to enter some prints in the next competition as well.

I also took advantage of a nice day and went to Oxford to the local Jessopes  camera shop to look at the latest 60D Canon.It was so good to be able to walk to the shop with my son that I never was able to get to pre-transplant. I was impressed by this new camera but another model is being released soon that I want to see before I make a decision about which to buy.

I was also able to get to Oxford with my wife and daughter and walked around for the afternoon getting to many stores I had not visited for ages and not having to worry about stairs and if there is a lift available.we finished the day by going to Blackwells bookshop and I took my daughter to the basement room which is vast so that she could look at law books she was amazed and surprised about the amount of books there.
So many time over the last couple of weeks I have done things I couldn't do before and I find myself  doing things that would have left me a heaving wreck before. I am so grateful to my donor and I hope I can honour the gift of life that he gave me!
Finally I got confrontation of my status as a healthy person when the oxygen company came to collect the oxygen machine and my portable cylinders. They have been part of my life for so long  that in some sense I was sorry to see them go! They had been my means to carry on with life but also like a ball and chain that I was forced to carry  they tied me to a status as a disabled person when I was forced to use them.
Now I get breathless, but I know that I will be able to catch my breath without a tube up my nose and have joy at the experience of breathless bought on by exertion without the panic that I was cursed by before my transplant.

Please remember those who are still waiting

Sign the register if you haven't done already. The donor I received my gift from was only a bit younger than me ,we never know what the future holds but you can leave a legacy that lasts a lifetime.

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

The Leaves are Falling So is my Lung Function

What have I been doing?
A few things have happened since my last blog post about me lets fill in some details of events.

I got a mention on the website of a very dear friend and fellow blogger Marie Brew  at Live Love Speak This has led to people signing the donor register in their local area which made me very happy.
I would recommend this blog, it is filled with inspirational stories and Marie has great faith and is very committed to helping others achieve their potential.

I have been continuing to write articles on my website I Got Dug  That has now become quite time consuming at times, hence have had less time to write blog posts. I am enjoying being busy and it is helping to pass the time, sometimes too quickly!
Because I am writing about developments on the web I look for cutting edge stories.
The first was a story that was quite inspiring a young web designer Feross Aboukhadijeh was given a job on Twitter.He had been the first to code a new version of You Tube that offered instant searching.
Take note good work can get you your dream
The other thing I was involve in was a discussion with the CEO of Twitter Evan Williams this is the man who's company developed this software that I am using for my blog "Blogger". He was discussing the new Twitter version at the moment. I was able to get him to answer a question from me about some of these changes that may not seem much but with one million followers it is nice to know my voice was heard.

Things in my life have been moving along with a few days where it has been quite hard to breath and I realise that the number of these days will increase as winter gets nearer.
The trees are turning brown and I am planning my trips to the local arboretum for pictures, Next Thursday 23rd September my Camera club starts a new session for anyone who missed my winning picture from last year it is   Eagle Eye
I am looking forward to more wins in the future competitions, watch this space!
 Finally I was surprised  when I looked in my Email to find That I had come in the top 20 of a twitter game called Artwiculate I have been playing sporadically for a while, usually only put one entry per day. The idea is to tweet the word to illustrate its meaning in the most amusing way. This will get you  retweets and votes from fellow players.
So I thought I would post my certificate :-)

 If you would like to see my tweets and the other words I have done you will have to join the game on Twitter.

Organ donation: Facts and Figures from NHSBT

• Three people die in the UK every day due to the lack of a suitable organ.
• 8,000 people in the UK are still on the transplant waiting list despite the significant effort being made to increase the number of donors.

In 2009/10:

• Deceased organ donation increased by 19%⁴ . With 959 donors saving and improving the lives of countless patients, this was the most successful year ever. We also had our highest number of living donors, meeting the target with a total of 1,026 donors.
• As a result, the total number of organ transplants carried out in the period April 2009 to March 2010 was the highest ever seen.
• We transferred all existing Specialist Nurses into NHSBT employment, in new teams, in new offices, with new IT equipment and newly resident in hospitals across the UK. We appointed new staff so that we now have 190 Specialist Nurses for Organ Donation (SN-ODs). This work will deliver consistency in ways of working and a clear emphasis on organ donation for all NHS Trusts.
• We worked with the NHS to ensure the appointment of 174 Clinical Leads for Organ Donation, the establishment of 138 Donation Committees and the appointment of 122 Chairs. We started work to provide them with the tools they need with an innovative Professional Development Programme.
• We commissioned 13 organ retrieval teams across the UK working to agreed specifications and standards.
• We completed the roll-out of our Electronic Offering System (EOS) to almost all transplant centres to speed up donor registration and organ offering, and further developed the electronic Potential Donor Audit.⁵
• We launched the first UK-wide public awareness campaign to encourage more people to join the Organ Donor Register and discuss their donation wishes with their families. As a result there are now over 17 million people on the Organ Donor Register.

please sign up HERE

What the Blog is Happening?

As I write this blog about my life and my tribulations, I know that life is moving on for others I follow. They are on my blog list and some have been having a hard time.

jodiecf.blog.co.uk - Transplant List(England)

Jodie a Cystic Fibrosis sufferer who is waiting for a double lung and heart transplant. Has been having a particularly hard time and she is presently in hospital and has had both lungs collapse she could do with some support and comments on her blog to encourage her. Please have a look and read her story. I sincerely  hope she get better soon and receives her new lungs and heart.

Anything But Ordinary...- Rachael Wakefields blog (England)
After her lifesaving double lung transplant in march things have been hard with her spending a long time recovering.Then a while back she was readmitted to hospital she then got pneumonia and is suffering from second bout of rejection at the moment.I hope that she is able to sort out her problems and get back out into the world to use the lung she had been waiting for for so long.All the best Rachael thinking about you get well soon.

Victoria Glen(Scotland)
A lady with CF. Got new Lungs on 16th May and has had a few ups and downs but is doing good.She has been going out and about had a new lungs party recently and had a day in London watching musicals (the photos are on her blog) even she has had some rejection problems although they are under control.
Looking forward to your article coming out in October.

Past the Point of No Return - Victoria Tremlett(England)
Victoria another lady with CF is having a hard time I wouldn't lie and as she has been waiting a long time is quite worn out with the whole process.I follow her on twitter and after the post on her blog I know that she is a bit better now and has got some new furniture and is happy with that. But as to the rest of the problems they will not be totally resolved without a lung transplant.I am think about you Victoria wishing you all the best. Willing you to get that call. 

My Lung Transplant Years - Christopher Green (USA)Christopher lives in Westlake,Ohio . He has continued to relate his story about growing up and the history of his illness while letting us in on a great life spent working in local politics and memories of his folk along the way. Chris uses oxygen regularly and has been attending rehabilitation sessions to get him fit he is hoping for new lungs.

Chopped Liver - David Kallin(England)

David has been having a reasonable time while waiting for his liver transplant he has been able to continue work for the most part.He say on his blog"However, if, as in my case, I am able to function fairly normally, save for bouts of colangitis, then dealing with the situation is less straightforward. How much longer can I get away with a failing liver? Weeks? Months? Years?."
He is active on twitter and provides a great insight into his world of his work, music and home life with his young son.I am happy that he is well, and glad that he is helping the cause of organ donation on his blog every entry making me feel a bit guilty for not doing the same.He is presently preparing a article for the British Liver Trust to give others a insight into his life.You can follow him to.Cheers David

The Blog Blog - Bree (Canada)

Bree is also just over a year away from her lung transplant and loving it.This is what you get with Bree, she speaks her mind and say it how it is.

She has just a while back written a letter to her donors family.

I would like to take some quotes from the letters as it illustrates how much of a change a lung transplant can make She has done really well and is now employed doing a job she loves and walking a lot.

She says of her blog

"I will say all the things you are afraid to....and I will ask all the things you're too scared to...This is my trek through pre and post lung transplant courtesy of a lung condition called Bronchiectasis. 
The letters tell you more:
A year ago today I can recall exactly what I did: I baked 2 loaves of bread, one being cheese and onion. I had caught up on phone calls and emails and was mentally making sure everything at home would be okay. I knew I was dying. I couldn’t brush my teeth and breathe at the same time without having to lean over the counter and rest to take a breath. Using 5L of oxygen didn’t matter – I simply couldn’t do it anymore. I was simply exhausted in every which way imaginable, and the sheer physical pain of feeling your lungs shrivelling up and dying within you was unfathomable.

I was just 23 years old, and this was my life.

One year later things are very different. I am healthy, I am pink, and I am breathing the way a normal 24 year old girl should. This morning I woke up bright and early and took one of our dogs for an hour and a half walk with my sister. Then I made a cup of tea and lounged on the couch with the other dog and watched Shark Week. My how things have changed.

But the thought that somewhere out there your family continues to grieve is enough to bring me to tears. You will never know what your donation has done for my family and I. I cannot put into words how it feels to take a deep breath in and feel it resonating at the bottom of my lungs. Seeing my chest rise and fall the way it should, instead of having it never move and breathing with my stomach as I used to never seize to amaze me. It is a sensation that will never grow old.

In two weeks, I will turn 25.
Hope really hope you will have many more Bree :-)

(I reproduced these excepts from another blog http://www.mervsheppard.blogspot.com)

So how am I?
I am doing good,
Waiting and hoping for a call,
but aware that things could be a lot worse than they are.

I recently asked people on Twitter what is the most important thing to you? Many answers were offered,My son,My boyfriend,My wife,Twitter,My children,even one kind soul who said me getting a transplant:)
my work ( no just joking no one said that ) 

But one thing no one mentioned was Good Health without that life can become hard work. Look after yourselves please and I wish you all good health.But for people on the waiting list for a transplant there is hope in the future.

                                          

So I will take a lesson from David Kallins blog, and finish with a request for you to think about becoming a Organ donor.Click on the flashing heart in the left hand column near the top of the blog.
If you are a donor already please email a  link from this blog to a friend who isn't, or who you think would benefit from reading it
You can do that from the bottom of each post or using the Toolbar  + sharing  or even "like it" on Facebook  Thank you for spreading the word about Organ donation :-)

Waiting One Year On

7th September is the Birthday of Google search engine. It also is significant date for me that marks one year since I was placed on the transplant list. 
How has it been? A roller-coaster ride with several stops along the way!

I had been dreading this day and now it is here I feel quite calm.
I was told that 18months to two years was a expected time to wait. So it is not unusual that I would still be waiting. Despite the great problems with infection that delayed my listing in the first place I am still here.I have survived Bird flu and the awful winter last year and all in all I am feeling quite good physically for a respiratory cripple.

The problem with the wait is the mental effects. I have felt a bit down now that my holiday is over, and with my birthday coming just afterwards it was a reminder of the passage of time.I am aware that I am much less confident now,and the family is finding things hard. We argue a lot and I am aware that the strain of my illness is wearing us all out,I sigh a lot and cry a bit when it gets too much. But the day to day can be a real effort. The things that annoy the most are the little things.Carrying things up and down the stairs so that when I am unable to deal with the stairs in the evening, I have things in the bedroom that I need. Bath day knowing that this will add two hours to the day.The evening tied to an oxygen mask are the worst. 

It is now autumn and just today I have noticed that the trees are starting to show the effects.
This is a good thing for my photography, a bad thing for my health. For those who know about lung disease the worse sort of weather for breathing problems is cold and damp.This is something that we are about to have a lot more of now.

In years gone by I as a fisherman.I would be dusting off my pike gear this time of the year and looking forward to sessions on a cold misty riverbank, watching a large red float hoping to see it disappear below the water.Or casting a plug into the slow flowing waters hoping for a pull on the line that would indicate a fish.This is something I will have to put on hold for the present.   
I would also have spent time walking in the country side collecting conkers for my son or collecting blackberries and apples for a pie maybe sweet chestnuts to roast.These are things that I would have problems with now.
I was talking with someone on twitter the other day who told me to focus on the future and what I would do when I get my new lungs.So for the next few sentences I will do just  that.
What do I want to do when I get new lungs:

A walk in the Countryside

• Walk in the countryside-I love walking and this is one thing I really miss I would love to walk out into the countryside and up and down hills without problems.I would love to take my camera into the fields and take pictures of animals and landscapes I can only glimpse from my car al the moment.  

• Go swimming - I loved to swim before I was unwell and did it all the time. I really miss that,I have been told that swimming in a pool is okay. Swimming in a lake or river on the other hand would not be advisable as that would present a risk of infection.  

Go Fishing

• Go fishing-I would love to take my fishing tackle to a quiet lake sit and fish and watch the world pass by or maybe go to the coast and go out on a boat and fish for my dinner then cook the fish fresh on the shore when I get back

•  Glastonbury tor- I did quite a lot of festivals in years past and went to Stonehenge free festival a few times and Glastonbury on several occasions I saw the tor but never walked up and had a proper look. 

Ride a bike

• Ride a Motorbike- when I was young.I was a biker, I had many bikes including a Triumph Tiger cub 350 and a Yamaha 650 and I regularly see many bikes pulled up by a local cafe nearby I had to sell my last bike when I got unwell and really regretted it I swore that I would ride another bike one day. 

Hopefully I will do all of these things but if I don't it was nice to think about them. I still have a bit more stamina left in me yet.
So Year two, here we go. Bring it on!

Modelmania Sounds like Fun

If you were attracted by the title, no not those sort of models that wouldn't go down well with the PTA. But stick around because I think you will be amazed at some of the models they had on show.

A quick update on my weekend. For a few years now the local school in our village has been hosting a great model show full of superb models and demonstrations. People can exchange ideas there & several dealers selling equipment for building  models attend if you want to try your hand at it.

I took my son and my camera,we were able to park in the school area so that it wasn't too far for me to walk.But the day was very hot and this lead to it being a bit of a trial for me, walking around as I became breathless on several occasions. Despite this I was able to see most of what was on offer and talked with several of the people exhibiting their models there was a vast amounts of models including scratch built and kit built stuff I was inspired and in awe of some of the models.
One place I had to avoid was the area were the model steam traction engines were due to the smoke but I was able to get a couple of pictures anyway.My son and I really enjoyed it and I have included a few pictures to let you have a flavour of the day.

X Wing-Star Wars

Armoured  car

My son photo of car

Lounge

Toy Shop

Radio controlled plane

Russian Tank

Train layout

Truck and car photo by my son

  Finally I know that transplant week has now finished, but if you are not a organ donor please could you think about becoming one. The link is on this blog just click the beating heart, before someone's stops beating waiting for a transplant. Thank you.

New XBox is Slim- So is my Bank Account

As you can see from the post title The new Xbox slim that I have had on preorder since my sons birthday in June  has arrived.It looks good shiny, black and sounds whisper quiet has five USB ports and a port for the new Kinect yet to be released.  It brought with it a hole in the my finances that included a few new games the only upside to the deal was that it came in a bundle that included a second wireless controller.

My son was ecstatic and the sound of Forza Motorsport 3 has filled our front room for most of the weekend.

My daughter has taken advantage and is using the good mood to borrow the Game Cube from his room to play Sims on. But I will need to buy new leads to ensure that connections to the TV for this and Wii are available so that the Wii fit will work for my daughter.

It was quite a effort to sort out the jumble of leads already there and avoid inhaling the dust when we set it up and I found that the bending down left me really breathless but we got there in the end and even i did a bit of motor racing with my son I must say I am very impressed by the whole XBox experience and given the hard drive size may look into its media serving capabilities at a latter date.

I found that this weekend due to the change in the weather to damp and rainy I have suffered with my breathing,not as badly as when it is cold mind you. I am not looking forward to the autumn when it does get cold again for this reason.The days have just slipped by. We hope to get away in August before my birthday and it is not long till the kids break up from school for the holidays either.

The other thing to mention is that this blog is now being featured on a health blogging site and was awarded the badge on the left of the main posts. If you click on my name Mark W on the badge you can visit my page on the site. Wellspace host a number of heath related communities and have content that may be of interest
My blog is part of the General Medicine.

Transplant week Final thoughts

Before you go too far in this post you might want to stop now if you are just reading this for interest I will tell you how it is and pull no punches in the hope that you are moved to sign up to the donor register and remember I am better off than some who tonight are fighting for breath hoping for a new life.

Tonight I shall post some of the negative feelings that this week has brought up. Paint a picture of how waiting is for me, the restrictions and pressure that waiting has caused.


What is it like?
It is like drowning a few times every day.
Fighting your way to the surface,
hoping you will reach it.

Every day you have to consider what you can do,and what you are unable to do because of your breathing.

In the past the summer was my favourite time of the year a time to swim, walk in the countryside, a pint in the pub.The good weather signalled barbecues and fun with the family.

Now a barbecues and fires make breathing impossible, swimming would quickly turn into drowning, walks in the fields would lead to back problems for my wife pushing my wheelchair as any distance walking is impossible,A pint in the pub is no fun any more as the alcohol depresses my breathing and drunk and breathless is not a good combination.

Fun with the family is becoming harder and harder and as the kids grow they are forced to leave me and do things alone as getting parking near a lot of things is impossible.If I am with them I can watch them have fun.

The practicalities are numerous;

• where will you park, will there be a space?(not occupied by people who are too lazy to park anywhere but a disabled spot.)when I go out I need to stay near to my car
• Have I got enough oxygen with me?(a portable bottle lasts only 2 hours use)
• Have I got the wheelchair?( someone to push it?) 
• Have I got inhalers 
• Will there be toilets? (I am on diuretic tablets and need frequent visits)
• Have I got mobile phone my ever-present friend for when I get the call to transplant (can I get a signal)
• Have I had my tablets 
• Have I had my Nebuliser (I take this three times, sometimes more)or will I be out to late for it
• Will the day out last later than about 10pm when my breathing requires Oxygen constantly supplied by mains powered machine
• As you can see days out are a pain when I come along. So I often find I have to stay at home and not slow everyone down and any place requiring walking are a no go.

When at home:

• I have great problems with stairs and the walk upstairs at the end of the day take a great deal of drowning noises inter spaced by curses and individual steps are taken with a rest inbetween.

• Then there is my oxygen tubing this trails around the house following me like a tail and everyone has must be careful not to trip on it.
• When I am using my oxygen in the evenings and overnight is the worst I feel trapped and even moving around the bedroom cause me to become uncontrollably  breathless.
• I can't cook due to the heat and cooking fumes and I love to cook.
• I can't help with housework as I get to breathless.
• I can wash myself but it takes ages and washing and hair washing produces bouts of breathlessness that are hard to bear at times even with oxygen on.When I am breathing badly a shower on a seat across the bath with assistance is required.

I am so luck that I am as well as this.
Some people I have talked with this week are worse than this.
When I had an infection last summer I was also.But the worse part about this situation I am in is the effect that it has on my family.

My wife is a nurse and has looked after people all her life but the stain of having a husband who is unwell is wearing her down not though the practical issued but the mental effects and stress I see the look in her eyes and am powerless to help

The effects on the kids are numerous.They are unable to go out without a phone as I may need to contact them should the call to hospital come.I cant do the things with them that they would like to and the stress is ever present.they are lovely kids and I wish that I could do something to help but I cant.particularly when they are out with me they worry, having seen me have a Pneumothorax  where my lung deflated.

My children  think I may get unwell again and I cant be sure.
I push that out of my mind for most of the time.
But at other times I cry with despair and fear for the future 
I deal with things like a recovering alcoholic one day at a time

Anyway If you have made it this far in this post respect to you not many people like to read about illness as it forces us to confront your mortality. Now I will ask you to do just that, If you die would you really want to let your organs go the waste in the ground or polluting the atmosphere as more greenhouse gas? 

Please consider signing the organ donor register and save another life when you have gone. After all we don't know what will happen in the future.This is the most selfless gift you could give to another human being be a hero and give the gift of life finally If you do sign the register please add a comment to this blog to let me know  even if you don't it is nice to know someone is listening.

  UK Donor Register

Day Of Fun

View from the saloon

After my post yesterday I thought that I would post something about how I had spent my weekend as I mentioned before I was hopping to get to the local carnival which was a low key affair with some stalls and not much else by the time I had sorted out my nebuliser and got myself together.I was too late to see the carnival procession, even missed our camera club exhibition of photos.I was fed up, so I decided to go to the funfair that was going on and see what else had been organised.When I got to the fair there was a "wild west" re-enactment going on where a group of middle aged men were playing with blank firing guns it was good for the kids and the guns scared some of the little one rigid. But I did get a couple of views of my own for your entertainment.  

Gunfight at the local field

We went to the Funfair and my son went on some of the rides including the dodgems which he really liked and another ride which flung him around.It brought back memories for me of the last time I had been on a fair ride, at this same fair I think. I had gone on one of the rotating rides, with my son and daughter, that squash the riders in the seat against the person sitting on the outside of the seat.That was me and as the ride speed increased, I found the kids were squashing against my chest and I couldn't breath. I panicked I eventually had to gain attention of the operator, who stopped the ride earlier to allow me off. I was really scared and that was my last fair ride.I loved seeing my son enjoy the rides,I spent my time taking some photos.I have included a few to give you a flavour of the fair

Waltzers

Roundabout

Ghost Train - Don't think much of the attendant

The prizes wait for a home

Finally I was looking at a blog today and thought that my problems might be solved I saw an interesting Google sponsored ad on the Wordpress page about Lung transplants

That's a good saving

Could all my problems be solved if I got enough money I followed the link to this

Better luck next time!

Never mind .....The lung function meter might be useful but how will seeds for tomato plants help me with new lungs, only Google knows I suspect. Better luck next time :)

Time passes by

Bank Holiday Monday was a better day and we did get out as a family to Oxford city, but due to the layout of the town centre and the provision for disabled visitors the places I can park are limited. My daughter did get to look in some shops and my son was able to look at some clothes but what they wanted wasn't available.I walked a short way into the town from where the car was but didn't go far.I remember when I was able to walk up and down the town centre without thinking about it.We went to the superstores on the way out of the city and I spent some time playing with the latest cameras in Currys and managed to get the latest catalogue for Jessops but my trips into the town centre are rare now, and shopping normally means large out of town shopping centres.With the parking charge increases that have just been announced by Oxford council lots of local people will feel the same and Oxford City will be left to tourists and students.Or you can now take a Virtual Tour of Oxford and then you dont need to go at all.
When I got back I was on the internet when I came across the following  photo that encapsulates the passing of time in visual form perfectly it come from a website of a guy called Caleb Charland 
He says of his photos, 

Each photograph begins with a simple question “How would this look? Is that possible? What would happen if…?” and develops through a sculptural process of experimentation.

As I find hours seem to slip away so quickly and another day is over again this photo says it all.

Fifteen hours

 

Half Term and Eurovision are wet

The weather is poor with rain again, but the kids are happy that they are off school and my daughter has been out to local town to shop already.My son got his phone back today as it had some problems and was sent for repair,seems to work now,maybe I will be able to phone him if the call comes from Hospital.
I spent some of the day posting pictures to my photo site Myshutterspace the car and bike pictures have been well received and I was asked to repost them to a car group on the site.I have also started to post some pictures to Flickr after a long while when my account was unused but given the size of the site it may take a while to be noticed.
The Camera Club has finished for the holidays but there will be a display of pictures in the local town hall soon. I may try to sort out a few prints for that, but my priority is to do something with the family over the half term.
Tonight I am having to listen to the Eurovision song contest in which the British entry is as bland as a wet cardboard box and some of the other entries are similarly rubbish,I hate the wet middle of the road music.Never mind the kids and my wife are enjoying it, so I will stay quiet.
A piece of positive news I gleamed off Twitter is that Rachael Wakefield who had her Double lung transplant in March this year has been able to go home I don't know if this is for a visit or a permanent thing I will keep a eye on her blog Anything But Ordinary which is in my blog roll and hope that her recovery continues well with no more setbacks.

Bike Rally Today

Finally got out in the sun it was hot!! we went out to a local cafe where bikes meet called H cafe as they were having a bike show to award prizes and raise money for the local air ambulance service.It was a good show with many custom  bikes on show,I found it a bit hard as there was lots of fumes around but persisted and got some good photos of some of the unusual bikes and reminisced with my wife about our biking days.I have included some of the photos including a bike customised to look like Predator from the movie of the same name.  

Number 13

Paint detail

Predator Bike

After we came back my daughter returned from her weekend camping with Duke of Edinburgh award scheme.She  was totally worn out, our worst fear about a call while she was away didn't happen, and despite getting lost and getting blisters I think she enjoyed most of the experience.

Summer's here - Let's burn a bonfire

Summer is here with a vengeance this weekend with the temperature up and good weather forecast.For once I can breath better. I haven't had to use my oxygen when I have been out in the car today.
I saw the respiratory nurse yesterday. She rang on my mobile, number withheld, my heart jumped thinking it was Harefields again.I off loaded  about the stress the family are under and she offered to look into support.She said I should us my oxygen when out so I could walk farther, but I still feel that I am not willing to take that step yet unless I have to.Also the supplies from the Oxygen company are too unreliable with their deliveries for me to be sure to keep enough back for any trips to Harefields, which can use one and half bottles.

I had a look at the garden briefly, things are looking poor, my passion flower has died after the snow in the winter and other things are not being maintained. I have to accept that gardening is going to be a no go from now on.Even after the transplant when it comes, gardening would be a risk with reduced immunity.It is sad as I got some nice flower pictures last year.One of which I shall include to show the passion flower in all it splendour. I will have to go to some  public gardens instead. 

Passion flower and hoverfly

I say I looked in the garden briefly, because on a day when everyone wants to be out in the sun some git with as little community spirit as a dog walker without a plastic bag .Decided today was the best day to burn their garden rubbish. They spent the whole day polluting the local area with thick white smoke, probably from burning green waste,and most likely because they didn't want to pay £29 a year for the green waste collection and composting provided by the council.Council by-laws permit rubbish to be burnt any time which also encourages this sort of behaviour.

So I was trapped indoors with  the windows closed. Plus we were unable to hang out any washing to dry what a nice considerate community member they are!!! I would like to geotag them on Google maps but couldn't identify where the fire was,Just breath it in and choke on it.
I went out and got a haircut with my son so the day wasn't wasted. By 8pm it had gone out,but by that time the day was over.
I thought about my daughter who had gone on her Duke of Edinburgh camping today and wondered how she had been getting on in the heat I hoped that she was having fun as she was a bit apprehensive when she went this morning,We will find out when she returns. Tomorrow before she gets back  I hope to get out and take some pictures in the day while weather permits.

Trapped By Ash Cloud

Just my luck the weather improved after raining over the weekend and then I heard on the news that the ash cloud from Iceland is back over Britain.So given my problems on the last occasion it was around, I stayed in the house,to try to minimise the bad effect on my breathing.It did still have a effect and I found myself more breathless today and congested but I hope that it will prevent me from being unable to walk.The forecast has been that things will improve from tomorrow I hope. 
Spent my time looking around on the web at visual effects sites one that i found was a site to draw on but not like any drawings in the normal sense The site is called Bomomo and it is unusual in it approach and hard to control but fun.                                                          

Another site that I found that allows you to draw online is Myoats The site will allow you to make spirograph patterns on the site and save them to your computers as wallpaper  there are tutorial to help and if you have a bit of time, have a go maybe your design will become a favourite. Here's one I made earlier,if you like it feel free to use it.

3 Year Photograph and Fantasy Pictures

Since my illness got worse I have had to adapt my interests to cope with the breathlessness this has lead me towards my photography and artistic interests and I have visited a lot of sites of fellow photographers but this week I came across the site of someone who took a photograph that lasted three years!!
Hard to believe this is possible it was made by German photographer Michael Wesely. He set up four cameras to follow the construction of the Museum of Modern Art in New York in 2001.
Not all the cameras pictures continued for the duration,
but one did and here it is

 

The original is wall sized, so you can only get a idea of how it looks. But if you what to know more his site is at Michael Wesely
Another interest I have is Drawing and Painting although I am not very good,as a fan of science fiction and fantasy I have always been awed by some of the art on the books of Isaac Asimov , Michael Moorcock and Ursula K. Le Guin  and was impressed by Patrick Woodroffe a British science fiction artist and the air- brushed art of Michael English.Then I came across someone who reminded me of this artist again. 
Wojtek Siudmak, an artist of Polish origin, settled in France in 1966 and is considered now one of the principal representatives of fantastic realism

I thought these three pictures gave a flavour of the work he does if you wish to see more here is  his website 

Classic Cars Day at the Park

Well I got out of the house today and went to the car rally.The weather wasn't to good and as usual had a problem finding somewhere to park near to the venue but my son and I spent a couple of hours looking at the cars and my son sizing up the ones he wanted to buy.I found it very hard to walk today. I wonder how much longer before I will need oxygen all day?At the moment I get by till the evening then I am on it overnight but it seems that the almighty has other plans.
I found it hard also to rely on my 13 year old son when we are out, to help me by carrying things and if necessary to get my oxygen from the car if I get into trouble with my breathing,which nearly happened today. He is happy to help but it should be me looking out for him not the other way round and I found myself upset because of this today.

Chevy

Rather than walking round I decided to take some pictures when the cars went past in the display areas but we were a bit late to see some of this stuff I have to consider where I can sit when out and today there were few seats.It was a good day but it has worn me out and I have posted some pictures to show you a few of the cars we saw and one of three Mini Steam Engines that were chugging round making my breathing worse but they are quite nice to look at.

Mini Traction Engine

This was on the front of a
lovely Vintage Rolls Royce
it is the early form of the Spirit of Ecstasy

The famous Italian brand

Buick

 Couple of
American cars

Rolls Royce

 Couple of
old British cars

The Morris Oxford
Built Locally to us in Cowley
Built  in India at a later date where
A version of this car still is
Hindustan Ambassador




Finally a very desirable car. My son thinks he would like to own this !!

Ford GT