Last Clinic Before Christmas?

After my discharge on Wednesday I have been dreading attendance at clinic again in case the infection had reoccurred or other problem might have developed that might affect my chance to stay at home for Christmas. So I woke up today with some concerns. The weather did us no favours, the temperature was -11C snow on the ground and ice on the road and to put a lid on things no water in our taps frozen pipes? I rang the water company who told me there were no issues with leaks or interrupted supply local to us.I woke the kids to tell them asking them not to use the water till the pipes thawed and we prepared to leave.I rang the clinic to warn them I might not be able to get to them today, but would try anyway.
We were lucky with travelling and got to clinic just after 10am and was able to get things completed early due to the fact that a lot of people had not made it in.It took a while to get some blood done due to my damaged veins
that have been quite overused of late.
I was happy to find out that my lung function had been maintained since my last visit and the X-ray was okay doctor had encouraged my to exercise and said he hoped that my lungs would improve and the capacity would increase then I was told that I should attend in three weeks on the 10 January I was really quite happy but apprehensive we then had to get some medication from Pharmacy and I asked for some dressings for the small wound on my scar that is healing well.I can start to see a end to the process of urgency that has dominated our attendance since the transplant.
The journey home was less than fun with no water for the windscreen wipers and night approaching. When we did get back we went out to get some supplies from the supermarket and after taking back the DVDs I had to return we got a pizza for tea finally able to rest we both collapsed and realised how tired the day had made us. Luckily the cold water supply had come back on which was a great and well needed end to the day!
Roll on Christmas!!  

Give the Gift of Life For Christmas

I hoped this was not going to be a post that I would have to write,but here goes.
We attended clinic on Monday and there was a problem!

The regular X ray that had been done showed some congestion and it was enough for the Doctors to wish to investigate more so we were asked to expect admission for a Broncoscopy.
We had to return home as that was the day I had nothing with me. We collected the required medication and
clothes told the kids what was happening then returned to Harefield

We went to the upstairs ward above were I was for transplant, into the same numbered room "room 9"
That is were I have stayed.  I hoped that it would not be a long stay.
 The Bronsoscopy was the next day.
After there was no conclusion from the test except that there was no rejection evident a decision was made to start IV antibiotics and then I was told I would be in hospital for another 7 days at lest  for them to work.

So here I am it is good that the staff that I know work here on this ward to but I am fed up!this time around the food is less appealing and the entertainment is wearing thin.
I have been forced to think about Christmas while in here and the only present I will want is to be home with my loving family. To relax, pray to god for the gift I have been given, with hope for no more admissions for the near future.

One thing that has happened while I have been in here is I have been given information about my Donor because I requested to learn more.The information is brief and limited all I have been told was he was a 45 year old man just like me.

He was taken and has left a legacy, a gift in my body I can never repay.

Thank you whom ever you are I am doing the best to make a life. If like me you have a wife and children I will write a letter in the future to tell them about how you helped me with you donation but the coordinator has said that should be left for a while a few months while they recover and I can find the right words.

It has brought it home how important being registered as a donor
So finally you know what I will say now.
If you have registered as a donor you are a star.
If you have yet to do so please do we only know one thing for certain one day life will end.

click HERE it take no time to send a Christmas gift in the future
You could change someone's life. Someone like me!
GIVE THE GIFT OF LIFE FOR CHRISTMAS  

Got Out & About

Got a call from Harefield who needed a repeat blood test to check my kidney function they were asking if I could attend on Thursday.As this is just after my wife has worked a night shift I was not happy with her driving after being up all night so I organised a appointment at the GPs for 9.15 which is a part of the day I don't often see! but I managed. Liz drove me there to get the blood taken and reported to Harefields direct.The blood test when it was reported showed improvement so reassured the clinic and me!

 After I had done this we went out to the local town to get some money from the bank and go to the shops for some magazines.I then realised that this was the first time that me and Liz had been out together to something that didn't involve hospitals we spent some time out, but realised quite quickly that just the small amount of walking I had done was starting to wear me out. At the time there was still snow on the ground,
It felt good,& quite different as the breathlessness I would get in the cold was not there any more. But I was shocked how weak I have become after my stay in hospital when I got back in the car my legs felt quite shaky and heavy.
It would be so good to get some nice weather to get out in and as I have been advised not to drive yet I am still very dependent on Liz to get around.On the whole though I am starting to realise what will be possible now. Even though I know that I have had the transplant I am only just starting to feel and accept the effect it has had on me.
My eldest daughter who visited recently has gone back to France to do a winter season on the ski slopes and will be there till April I hope I will be able to keep in touch on Skype. Another friend who had been in America called me to say he had returned he had visited while I was in ITU but has not seen me since I hope to see him next week

The day to day things that were happening in my life are starting to come back into my life again and I am now starting to take control again! I am really looking forward to driving the car and getting real independence again and I am so grateful for the gift I have been given.

I might be good now but I don't know how well I will cope with Christmas that is rapidly approaching, many people are having a worse time!
I want to remind people there are many more people still waiting for a transplant

If you haven't, please sign up as a donor.
If you have then please talk to your family and friends about it so they know your wishes as consent must still be sought from relatives

Please remember those still waiting!

Clinic Day (Break for a Week)

Went of to my third clinic day yesterday and it was decided that the breakdown of the wound that has been causing some concern would benefit from some antibiotics so I have been put on flucloxacillan for a week the positive is that they feel that I do not need to attend till next Monday which means we get a weeks rest.
This will help us both and allow Liz a break from the constant driving back a forth.It was a bit hurried  and we were rushing about at the end of clinic collecting medication to last the week. I hope this will allow us to recharge our batteries and get sorted at home the whole process has been a great drain on all of us.

I am starting to feel that my body is getting back to a sort of normality and walking on the level is feeling okay now. Stairs still feel hard to do, and I am aware that I will have to do a good amount of exercise before things feel back to how they were before but I have turned a corner now,and hoping for a gradual improvement from now on.

Got a call from my GP this morning saying hello and congratulating me on my recovery he was letting me    know that he was available for any problems that I may need help with and it was reassuring to hear.

Slowly life is starting to get back to a rate of change I can cope with. Now is the time for contemplation, I had thought about the donor several times during the process, but I have made up my mind that I will ask about the donor at my next clinic appointment, I want to  know more about them,this person who is keeping me alive!!

Other thing I have started to do is think about what I will be able to do now.
How will I use my new mobility what do I really want to do?

It is a shame that the weather is not the best at this time of the year therefore I haven't been able to get out as often as I could have in the summer but I am looking forward to short walks building up to longer walks in the near future I will try to get to some shopping centres where it is dry and warmer to practice.
On the whole though I am just so happy to be breathing and well!

But let us not forget those who are still waiting so if you haven't registered as donor click the link on the left hand side of the blog on the flashing heart.
If you have, please ask your friends to look at this blog and tell them the benefits that transplantation can give. 

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.
  

Testing Times Today

Today several things changed. The doctors seem happy with the amount of fluid that has been removed using the iv diuretics I have been having and have changed my medications to all tablets.Allowing the last tube in my arm to be removed.
I as so had a day of investigations designed to check the underlying function of my lungs firstly I had another respiratory function test that found my lung capacity is now  FVC 2.00litre  I found it hard to do the test and couldn't get my breathing to do what I wanted it to. But after instruction I was able to manage it.
Then I was called to go for a CT scan  which I managed reasonably well but again took a while getting used to lying flat this was solved with a small amount of Oxygen.
Finally I was told that they would be doing another sleep study to see how my body was coping with the retention of Carbon Dioxide overnight and this would be off the Bi pad machine  that I had been using.I took my instruction from the man who delivered the machine so that I would be able to get good results from this study for the doctors to make a decision about the future.
The future is still being decided but I get the feeling that given positive results, and the praise I have received for my progress, that home may be a strong possibility in the near future.

The other thing I thought I mighty do would be allow those people who wish to to view the final scar as left by a bi-latereral sequential lung transplant I have provided a link to the photos as I don't think everyone will be interested  Please click HERE if you want to see my final scar and a second HERE

I started a new Life! Spot the difference

I decided that today was the time for another picture of me for people who follow this blog.The purpose of which is a spot the difference to other pictures that I have posted.

I wonder how long it will take people to notice the difference please post your suggestions as comments on this post and lets see who is the first to get the right answer? You may need to post anonymously as certain people have been having problems with comments on the blog just add your name at the end of the comment.Good luck!! 
As you can also see I am really happy and I hope it will not be to much longer before the doctors agree that is time for me to have a bit of time back home.
The process is far from over now as the monitoring process starts now to make sure that the organs are kept in good condition and initially I will be travelling to hospital as often as twice a week for checks on medication levels and other checks which will continue for the rest of my life.

At present Harefields Hospital has 1200 people who are receiving follow-up care after transplant the longest being about 20 years post transplant the club here is called the hamster club hence the hamster on the bottom of the blog if you haven't seen it, scroll down to the bottom of this screen and give it some of its food.
 I am so happy to be joining them as one of the next generation!

Please don't forget if you have any questions I also have a formspring form at the bottom of the blog where you can ask any transplant related questions you have. if I don't know I will try to find out.

You can ask me something about how I feel about the transplant if you like although I might not know at this stage as the whole thing is new to me!

The Golden tweets Award please vote and get your friends to!!!

As you have have been following this blog you will be aware of the progress of my lung transplant recovery what you may not be aware of is that while I was waiting I had entered a awards scheme called the Golden Tweets.
this is a user led award that allows people to be voted for by their followers in several categories.
I had put myself forward In a couple of categories that I felt were appropriate one was Writing for the blog and the other was Private individual I had forgotten about the award because of the transplant becoming available and then realised it was coming to the end of voting so I got on twitter and asked some of my followers to vote before the end of voting.

When the voting finished it seems I had been successful in coming in the top 3 out of 183 people so now I am a finalist :)

Not only that but another person that is also waiting for a double lung transplant has also got into the finalist category for writing this is my fellow blogger who writes "Past the point of no return"  Victoria Tremlett  She suffers from Cystic fibrosis and has been waiting a long time for her transplant.

What can you do now????


Vote and vote again - Help us both get a voice for people  waiting for transplants:


Cystitis Fibrosis people


COPD people


Heart transplant People


Kidney disease People


Liver transplant People

People sitting at home waiting for the phone to ring willing it to ring because it may mean a new life for them
scared that it may not ring and they will die waiting -Three people die each day Waiting for a organ that never comes!!  

This link Golden Tweets tell you what happens now

You have till the 25^th November to vote again and make sure that the voice of those waiting for organs is heard and give me the chance to raise awareness for donors and registration

UKCybernaught -Private Individual 

Tor87 -Writing 

There are other people in the voting and I will leave it to your judgement as to whether their reasons are as valid as organ donation awareness allowing others the gift of life I have been given and Victoria so desperately needs.

Please help and I will try my hardest to get fit in time for the award in November so I can add my voice.

I am presently in Harefields Hospital  recovering. On Ward E  

 I ask this not for me but for all others waiting now somewhere in the UK tonight waiting for a phone to ring!!! 

You can also sign the register HERE

The fried breakfast principle

Seems that fried breakfast is the most appropriate gauge of my recovery on the first week I found out that full cooked breakfast was serviced on Sunday so the first week when I was in ITU I had my first taste and although I managed a bit I couldn't mange all the meal the next week it was a bit easier and I ate nearly all the meal but it was cold before I finished it.Last week I managed the whole meal and most was hot this Sunday I ate all the meal hot and even started on some toast to follow.I seemed to be on the way to a full recovery shame they don't serve any black pudding.
In the real word I have had a few ups and downs leading to a few investigations to find out why my Oxygen saturations were low

I had a bronchoscopy  Ultrasound of my heart and Diaphragm. capacity test and forced volume test and CT scan and then it was decided that I had a need for a chest drain in the pleura of my right lung that seemed to do the job and the sats are now improving


The other thing I have been considering How do I Express my extreme gratefulness to the unknown people out in the world that gave me this new chance that I have been offered in the world?  how can I tell the relatives of the donor how much I appreciate what they have done for me and my family?


It must have been such a hard time for them losing a loved one and still able to see the benefit  that the organs available would make in someone else's life I will do my best to look after the donation they have made to me and keep that piece of them alive inside me I have no words at the moment but I hope in the future I will be able to explain though a note if that is possible to let them know how much I respect their decision. 


Finally I had a shave today and so I thought that I would post a another picture on line so you could judge If you thought that I have improved as all the nurses say I have, and you can see my ugly mug again!

Wedding Anniversary Today

With everything that has been happening over the past week it took my wife to point out something I had missed that had crept up on us without either of us noticing much till the last minute.

Today the 23rd October is our 1st Wedding Anniversary one year ago today we were in Oxford Registry office making vows to stay together for the rest of our lives in my case I was not sure how long that would be.

My darling wife has already forfilled some of the vows she made she has stayed with me" in sickness and for poorer" now I hope that I can forfill the other parts of the vows I said" in health and for richer!"When we went into the offices with our witnesses, I could hardly deal with the breathlessness. Now there is the potential for that to be a thing of the past.How quickly a year has gone and how much has happened since that day.
After we had been together for a long time before our marriage has it made a difference?Maybe not in a day to day sense but for me emotionally it made a lot of difference that I could make that official commitment to her.

My beautiful and loving wife a very Happy Anniversary with all my love and thanks I couldn't have done this all without you ! 

Lets us look forward to many more future celebrations and remember this one as the year that changed our lives together positively

If you want to read more about the marriage it is included Here as part of the second call we got.

The suit I used for the marriage is hanging on the bedroom door and the pyjamas that I bought at the same time are what I  am wearing now! funny how things work out.

Hello From Harefields

Just a short post to say thanks to everyone who has been following what has been happening with my lung transplant. Both before and those who have joined me since I have had the operation.
One thing I have found is many generous and supportive people, some of whom have gone though the experience of Lung transplantation I have been humbled by their encouragement they know what I am feeling and have encouraged me by sharing their experiences.
Other people I have met tell me they have been influenced to sign the donor register by reading about my experiences of waiting and that has made me very happy as that was one of the reasons for me starting the blog in the first place.
Another group of people are the ones still waiting for their transplants I feel most strongly about them and hope they get their organs soon and I will be highlighting those folk in the weeks to come and would encourage others to offer their support Three that I follow on my blog are:

• Victoria Tremlett-Past the point of no return
• Jodie Smith-Jodiecf.blog.co.uk-Transplant list
• David Kallin - Chopped Liver

Thanks you all for your messages of congratulation I really hope you can all be transplanted very soon


Finally I thought I would try to post a video of me in Harefields I have included a piece of equipment called "the bird" which I found myself blowing in very soon after the operation it is used to encourage the lungs to clear.Also I have included a picture of the operation dressing so if you don't what to see be warned (its not to bad)Finally a bit of a thank you from the heart for everyone who has supported me it has made the most scary time in my families and my life much more bearable.Thank you all so much my best wishes and my families thanks go out to you all.
Please remember if you haven't signed up on the register you can in 5 mins and change a life like mine after you have gone.

My final thanks today go to all the donors and their brave families who at a time of one of the worst event in life they have thought of others and allowed there relatives organs to be used for transplantation one of the most selfless act I know of. I pray for your peace and grief to be over soon in the knowledge that part of your loved one lives on in another person. I will cherish the gift I have been given and hope I will be able to help others waiting as others have helped me please let your friend know about this story and discuss transplantation with others you know lets all carry donor cards and be proud to tell others that we do.
Thanks Mark

Consolidation

5am on Monday 4th October 2010 I was sitting outside the operating theatre on the start of a journey of consolidation that had started over 5 years earlier

It was Sunday night at 1900 when I had got the call, a dinner of roast lamb roast potatoes veg and all the trimmings was sitting on the table in front of me lovingly prepared by my wife .I had just started one of the roast potatoes that were really nice and crunchy and was looking forward to the meal when the home phone rang I knew when the phone was passed to me that it was Harefieilds.

The same feelings were provoked as had been on previous visits but as we had a visit just a while back we were somewhat more prepared and the time of day was unusual. I started to tweet out to a few people online what was happening and posted an entry to my blog and facebook. Tweeeting as I went we headed off though the quiet evening traffic to Harefields when we got there we ran the gamut of tests required then sat and waiting.

This was to be a beating heart donor and all the earlier stages progressed rapidly and without event.

Was this going to be it?

When they finally said that it was a go I was not as shocked as I thought I would be. Not to minimise the weird feeling of finality after a journey that had gone on for so long. We had a while about half a hour to say our goodbyes and I said a prayer with the family before the porters came to take me to the operating theatre. The family went as far as they could till the got to the entrance to the department then I was on my own.

Then next few hours are a blur but I have been told that I came out of the operation at about 11.30am and woke up on ITU several hours later.

It is now nearly two weeks since that day and I will just say it has been an eventful two weeks with a few ups and downs to say the least but I am here, getting better and stronger as the days go by.

The most profound part was waking up and knowing that someone had given their life organs so that I could live a better life I will do all I can to ensure that those organs last as long as I can and have so much respect for them as a Donor and also my heart and sympathy goes out to their brave relatives who gave consent for the procedure to go ahead.

Thank you, whoever you are, for the Gift of life that you have given me.

Got new lungs one week

Just thought A
Picture For my readers would
Be nice

Called for Transplant again!!!

19.00
Another call I am so nervous I don't know if this will be the one.
We will be leaving soon to get on the road and will maybe find out in the early hours if this is the call that goes ahead keep an eye on my account on twitter @UKCybernaut for updates my daughter will be tweeting for me if things proceed.

Watch This space!!

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

Autumn Fair and M.O.T at the hospital

My camera club resumed and many new faces were apparent which is a good thing for the health of the club. I found one of my pictures that had received a commendation in the end of year competition, is being used by the club as one of its entries for the inter club competition at the CACC. This is a alliance of camera clubs across the region.You can see the photo at the Wallingford Photographic club website it's called Eagle Eye

The other thing I managed this week is I attended the local fair that is held on a piece of common land in the town although not big it became the focal point for all the teenagers from the local school that my children attend. I had been to Oxford and was persuaded by my son to take him there for a while even though he had attended the night before with his mates.I was fortunate to have a camera with me and while he looked around I took some shots to record the multitude of lights and colours of the event. Although I didn't go on anything and found it hard to get around as I was so breathless I am glad I did.


My arm was aching today due to the Flu and pneumonia jabs that I had this week hopefully they will protect me from any winter bugs that might come along and early administration has proven more effective I read in New Scientist. I booked in on one the first days possible at the GP surgery.

I have just got back from hospital after a half day spent reviewing my health with the local team at Chest Clinic.

My MOT check list, Bodywork is a bit worn, carburettor is requiring replacement,but I am still safe to drive!

I saw the consultant that had looked after me when my lung collapsed who said hello, and  had my appointment with one of the registrars whom I saw when I was in hospital having IVs . I realised that it has been over a year since any admissions which encouraged me.They took a Chest X-ray and it showed a reduction in the hole in my lung and pneumothorax, which has been born out in my slight improvement in function over the summer, another encouraging sign.

I also had a call from Harefields first thing today to arrearage my outpatients appointment.It is now in the first week of November, a bit earlier than had been arranged. One of the co-ordinators that I had met before rang a t 10am and for a brief moment I was starting to panic before he told me it was a routine check up call.I tentatively checked up that they had me active on the list,silly I know but reassuring to hear.Then said I would see them in November.They are also after my blood and will be sending a package to me containing tubes to be filled for next week.
What a state my life is in when the only deliveries that I get are not from DHL,UPS or On-line retailer sending the latest gadget or tech? No, just Air liquide delivering my Oxygen Bottles and Harefields sending Blood sampling kit. What joy!

I would like to include in all my posts now a bit of promotion for organ donation awareness as that is one of the reasons i started the blog and my fellow blogger who writes the from Scotland Victoria Glen 
has joined together with two other people who have also had lung transplants and is raising funds to help with transplant awareness and support Cystic Fibrosis care they have a new website at Team Glasgow please have a look.Please support her efforts you can follow them on Twitter @Team_Glasgow
I am going to add it to the blog roll please tell all your friends!
If you are not yet a Organ Donor and would like to be please click the link on the flashing heart in the left hand column of this blog or HERE
Finally I thought I would put a few pictures of the Fair

All the fun of the fair

 

 

The Cage

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!

Back to school is there any money left?

We are into the last weekend before the kids go back to school and my bank account is straining to keep up with the equipment requirement and uniform refits.
Our children's school inform me that once again my daughter will need more clothes in a different colour to move up to the next year (why?).


This is being conveniently provided by a lovely company call Trutex who make there wares available mail order. Delivery is not included and they give the school a kickback of 10% of the price, which is very expensive anyway.This helps people unable to afford uniform I am told in the info?

As they say on their website.
"mail order 'Trutex Direct'  service where the school receives a donation from Trutex with every purchase of uniform made. Little wonder that Trutex remains the single, largest independent school brand and this year" 

Little wonder indeed, my money will fund the school that I already pay tax for!I will also get the pleasure of knowing I am helping others not to pay. The sports kit may be purchased from the school and only from the school.
I remember when I went to school we also had a uniform policy and we had to wear Blazers and tie plus black trousers but there was no specified supplier and everyone was able to get their uniforms where they wanted to.Now there are many more options, due to competition in the market, prices have fallen,the essence of a healthy free market economy. Yet we are forced to buy from a company operating as a monopoly the essence of autocracy.

Then there are the incidentals WHSmiths have built a business on the fact that kids need new stationary every year, I have lost count how many calculators,rulers,rubbers,pens and protractors I have bought!Then there is the pencil case where all these items are put till they are discarded and it must be the "right" one.

Finally there are the shoes, another expensive job that I have nothing to do with if possible, as the choosing of shoes is more than I can cope with. Thankfully my wife has volunteered for that job this year.
Then once we have paid for the books they write in, complete with adverts.The coursework books, so that they can revise at home, and bought the art book that my son will use for his work.

We might just have enough left to pay for my son to get  chips on the only day they serve them, Friday. He tells me that it is mad you have to run to get some before they all go!Then ketchup on his chips costs 10p a sachet. 

Aside from the expense my son starts his work on his GCSEs this year and is dreading it.
The pressure to do well at school is much worse now than when I was at school,and with the dumbing down of exams, the pass rate required for a good pass is ever rising.That coupled with the continuous assessment element mean that the pressure is unrelenting.

When I was at school it was simple, you mucked around for four years, then panicked for a couple of months and kept your fingers crossed that you did well in the exams.
The year I left only 10% achieved A-C passes at O level and CSEs were there for those who didn't do O levels.Now it is all one exam GCSE and 90% pass  but in the end many more fail because the exam is considered a poor judge of ability by employers and Universities and quite often a A* is all that will do.

Never mind I am happy that they will be off to school again. Once again I will again have the pleasure of moaning about getting homework done.Giving them access on the computer to Facebook so they can find out the details of homework that they didn't copy down .My daughter can spending hours composing her written work while I try to read my emails and I can use up all my printers ink on printing out work that will be discarded.

Hope so!

Holiday is over Back on your Heads!

Holiday is over and after a three and a half hour trip back that was very trying to say the least (usually two and half hours) we arrived home.The first night we just crashed out and the next day the grass needed cutting and we did some shopping for all the things we have run out of.

Now normality has returned with the usual moaning and squabbling from the kids and a list of things to do that were put off before we left.I rang Harefields hospital and told them that we were back home and my mother visited and I gave her the gifts we had bought while away.

Why the strange title for this post? it comes from a joke that I heard and still makes me laugh now;

A man dies and ends up in Hell and the Devil says to him you have three choices of where you want to spend eternity and points to three doors.
The man says can I have a look first before I make my choice the Devil agrees
He opens the first door behind is fire,brimstone and people burning in agony."Don't fancy that" says the man,
He opens the second door there are people being whipped and beaten."Don't like the look of that"he says
He opens the third door and there are loads of people sitting waist deep in sewerage drinking tea.
He takes a moment, then he decide. "It has to be the third door" he says.
He goes in the third room and  the door closes behind him.
"Right" says the Devil, "Tea break is over now back on your heads"

I am not suggesting that my life is like that joke, but life has a way of throwing up those sorts of unexpected outcomes at us everyday and it doesn't matter if you worry or not they still happen.
People often say "I hope you don't have to wait to long for lungs". But people never say "I hope someone will die soon".But the two statements mean the same in the real world.
Human beings are very good at protecting themselves from the truth of their own behaviour ,but worry about things that they can't do anything about.

Well my birthday is nearly here and 8 days later I will have waited on the list one year. A interesting but stressful one but one filled with new experiences not all fun.
I have done a lot more than I thought I would be able to.Met some great people online through Twitter and other sites I use. I have talked to famous people and ordinary people with extraordinary lives. Followed three people who have had transplants watching them recover,some quicker than others.Waited with others like me still to receive the gift of life.

Started this blog and continued to write it! Got published on another blog as a guest.Started to run a website, learning a new format and extending my knowledge of the web.Got commended in end of year competition in the local Photography Club. Hoping to take more winning photos when it starts again in September.

The only down side to this time of the year, apart from being one year older. Is winters approach,that is something I dread,but with the advent of the Autumn, I hope though I can get some good pictures :-)

On that note I thought I would post some of the pictures I got of Brighton on our last day out before our holiday finished.

Brighton Pier

Walk on the Pier

The pier from the beach

Seafront

Watching the waves

Not quick Enough

Brighton Pavilion

Fountain