Published

Just a quick post to say that I have been published by another blog!
This Friday my story when out on the COPD Foundation's blog. They had contacted me through twitter and asked if I would write a piece about my illness and my wait for transplant.
It is the first piece I have had published by someone else and I am glad that it will get to people with COPD as they are the people who have similar problems to myself.If you would like to have a look you can find the article at the COPD Foundation blog

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.

Nearly Time for the Holidays

Time is ticking on and it is just one more day before the school holiday for my children and they are restless with waiting. They have half a day to go then six weeks of fighting and quarrelling.No I am joking I hope as the thought of that sort of behaviour fills me with dread.

My wife has gone to work tonight hoping that she can sort out some holiday, when we can get away to the coast to see her family.Her family live in Hastings and as we didn't have a holiday last year due to me being too ill with the persistant infection I had. It is very important that we try to go this year.

With my health problems this is a bit of an production. There is all the equipment that I have to carry like wheelchair and nebuliser, inhalers and the various drugs that I take that will need to be ordered so I don't run out. The bag with extra set of clothes that I keep packed for any calls to transplant, all the information about the car should there be a breakdown.
My stick and portable oxygen bottles.This is all before we pack the normal stuff to go away.Then there is the notice that I will have to give to the Oxygen company three weeks in advance to ensure that a Oxygen concentrator is delivered to the address I am staying at for overnight use.This needs to be provided by my doctor who will have to send forms to the company before they can provide the oxygen.so I will have to get a appointment

Finally I will have to inform Harefields that I will be away and they have said that I needed I would have to call a ambulance to ensure I got to them in time should there be a offer of Lungs.
Just writing that all down has made me feel quite worn already. But as the weather is good and my breathing is as good as it gets, we must try. I thought I would include some pictures of holidays gone by to give you a picture of the area. 

Hastings

Brighton Peir

Seagull

Eastbourne

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.

Day to Day Again

With all the tweeting I have been doing over Transplant week I have neglected the blog posts somewhat. There have been some changes in the layout and I have added another person to the blog list.

Please look at the new blog by Victoria Glen. She is a lady in Scotland who has only recently had a double Lung transplant.Victoria is spending some time in hospital this week getting treatment for a mild case of rejection and could do with some moral support,so read her blog and add some comments to make her feel better.

I was also able to tweet with David Kallin during transplant week.
He writes the blog Chopped liver which I have followed on this blog for a while.He is waiting for a liver transplant.
 A great guy who will help you if you are in business.He runs Best Of Barnet and you can contact him for all sorts of business advice at David Kallin he says " Want to grow your business through thebestof Barnet – I will donate your first 2 months fees to my Liver Charity." 


There is also some good news about me. I have been offered a website to run. It is in the early stages but it is giving me a focus,while I wait for my transplant.I will post up links to the site when it is running well and outstanding issues are sorted.It will be a site to share social media information and any contributions would be welcomed.

Something else Positive that has happened. I was contacted by a COPD website in America who like this blog and have asked me to write a short piece for the website blog as a guest blogger. Again I will post more about this when the post is publish.

As you can see I will be busy so if I don't update as often as I have been for a while please don't feel like I am neglecting my loyal readers and I promise if anything happens I will post info on here if I can or on twitter where I am @UKCybernaut or my Daughter will update the news about me though Twitter  and you can read about it on the widget on the blog or if you like you could join Twitter and follow me yourself. As long as the whale doesn't turn up

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

#Transplantweek Statistics are People

I thought that I would include some figures in the blog about transplants.
As you may have noticed I have included a counter on the blog that counts down people dying in real time from various lung conditions.
Stay a while and see how quickly it happens.

The facts are 3 people will die in the UK every day while they wait for a transplant by the time Transplant week finishes there will be 21 less people on the list like me

One person that has been campaigning this week is Victoria Tremlett and her friend Jennifer Grannell read their stories on the Daily Mirror site
This has been the most positive coverage I have come across so far in the media.

The facts are bad only 28% of the population are signed up on the register of organ donors more than 10,000 people are in need of a transplant

• You are more likely to need a transplant than become a donor.
• A donor can donate a heart, lungs, two kidneys, pancreas, liver and small bowel and can restore the sight of two people by donating their corneas.
• Donors can also give bone and tissue such as skin, heart valves and tendons. Skin grafts have helped people with severe burns and bone is used in orthopaedic surgery.
• The majority of relatives agree to organ donation and with the introduction of the Human Tissue Acts on 1 September 2006, which make the wishes of the donor paramount, it is hoped that more families will be encouraged to respect their loved one’s wishes. It is important that you discuss organ and tissue donation with the people closest to you so that, if the time ever comes, they will find it easier to confirm your wishes to NHS professionals.

• Some ethnic groups are three times as likely as the general population to develop kidney failure.
• The need for organs in the Asian community is three to four times higher than that of the white community. This is because conditions such as diabetes and heart disease - that can result in organ failure - occur more often in the Asian population.
• One donor can save up to Nine other people

Sign the register and make a difference you can fill a form online here

NHS Organ Donor Register

you can ring the NHS donor line 0300 123 23 23

or you can text SAVE to 84118

Once you have registered you will be sent a donor card in the post. A record will be kept so that if you lose the card your wishes will be know.Please let your nearest and dearest know so that if they need to give consent in the event of your death they will know how you feel.

If your friends are far away you can use the form on the heart to heart site to send a email and let them know that you are on the register here

Heart to heart message

Please don't let any more people become statistics

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.