Thursday, September 30, 2010

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

Sunday, September 19, 2010

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

Sunday, September 12, 2010

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.

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

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 :-)

Wednesday, September 8, 2010

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!

    Friday, September 3, 2010

    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!