Life Gets Better and Better

Life is getting better for me after my hiccup over Christmas with the missing bloods!! My body seems to have settled down again and the swelling in my legs has almost gone away. 

It was cold, there was snow on the ground and it was very early when I went to clinic!!
I attended Harefield Hospital again on Monday and visited the kidney consultant.
He was very happy with my kidney function and told me that things had improved since the dip in January he told me that I didn't need any increase in my blood pressure tablet at present and was happy to leave it 6 months for my next appointment which will be in early August.

This was great to hear and a real boost for me as I had been worried my kidneys were feeling the strain of the anti rejection meds.

 While I was there I also had a Heart Echo done (a type of ultrasound of the heart) This was something that my transplant consultant had suggested to discount any heart problems that would lead to my legs swelling.
It is a very disconcerting experience seeing your heart beating on the screen in front of you while measurements and reading of blood flow are taken by the operator.
The result of the echo -  it seems is that my heart was in good condition and no cause for concern which was also reassuring , so I have a good healthy heart, good kidneys no blockages in my leg veins and the levels in my blood are all within normal range for me!!!
 
I had not had a echo done since my transplant assessment back in January 2009 and it bought back memories about how I felt then and of some of the great people I met then . I wondered if they had been lucky and received their transplants or had they become statistics, one of the three people who die waiting on the list every day.I live in hope that I will bump into them one day in clinic.

One of the good things about the visit was that I was able to meet up with some great people who were up for their clinic appointments that day
 The first was Justine Laymond who was up for a check prior to her latest refresher session for the Clipper round the world Yacht Race that she will be joining soon.She will be sailing the last Leg 8, she will cross the Atlantic and log over 3,750 miles. to Southampton from New York, finishing in July.
She admitted to being excited and at the same time a bit terrified of the prospect of the race, and being the first double lung transplant recipient to take part in the history of the race i am not surprised!!
She is joined by Holly Cocker who underwent a kidney transplant in 2008 three years on she will take on the challenge of a lifetime. Signed up for Leg 7 she will log over 5,000 miles during the races from California to Panama and then on to New York, just before Justine's leg.
I so respect them both for doing it and wish them all the best :-)  you can learn more at the website
Clipper Round The World Yacht Race

The next was Richard Burbedge with whom I attended the speakers project run by LLTGL I talked about him in a previous post he was up for a routine check and looking forward to his upcoming run carrying the Olympic torch!! he is now 18months on from his lung transplant and doing well.
I also met up with another lung transplant patient I had met before at Harefield, Dawn Bostock who is active in campaigning against the NHS reforms being put forward by the government at present. 
She was also happy healthy and doing well. 

Finally I was able to meet  Kerry Maletroit who was up for a clinic appointment after her very recent (11 weeks yesterday) life saving transplant.She  has been attending weekly while she recovers. Kerry was looking great! healthy and happy and recovering very well considering how ill she was, I was so happy:-)

I had a chat with another very new  lung transplant patient who had just received his new lungs 4 weeks previous to his clinic visit and was able to support him with some reassurance about the future and what to expect with meds, side effects and other issues.
I also made a new transplant friend when I met Andy Healy, one of justine's friends he is 10 year on from his lung transplant for CF and it was nice that we were of similar age.
I didn't feel so bad being surrounded by young athletic transplantees like Justine and Richard.It was one of the best clinics I have been to in a while :-)

I will not be back at Harefield till march now, I hope then my frequency of visits will then decrease

This Thursday I have another competition at the camera club the" letter X".
The  previous one was an open subject competition and I put in the following pictures. I have include the scores for the first two but you will have to wait and see what score I am awarded for the two in this weeks competition  for the letter X?
Watch this space.......

Up an away - scored 17/20

Cholsey sunset -scored 16/20

X  is where we cross

X-wing fighter (star wars

 


 

Older and wiser

My holiday is over and time has ticked on. I had a great time and enjoyed being by the sea again, for my wife it was a chance to catch up with her family and for me a chance to revisit the old haunts that I frequented when I was training to be a Nurse.
I was so aware of the differences that a year and a transplant had made to the visit and although I didn't manage to do as much this holiday some things I took in my stride that I could not manage last year.I will talk more about these later.
One thing I did when I got to Hastings was to buy myself a compact camera to use when I am out and about I had tried out a couple and settled on a Nikon P300 which I found was the best at image stabilisation which I need because of the shakes I get through anti rejection medication I have yet to settle on a DSLR to buy so I felt that this would be a good stand by second camera.

During the first week we went to Eastbourne to attend the annual airshow and I was able to get some great photos of the planes I used my Canon DSLR to take them because of the zoom required for good pictures.I got many nice picture of planes that did a flypast over the pier

Spitfire

I was also impressed by the aerobatics team that did a demonstration

 My family were shocked by the noise of the F16 that flew over

Finally, later than planed, we were treated to the the premier aerobatic team who were only able to do a fly past due to the weather conditions having deteriorated by this stage

Red Arrows

 The rest of the holiday was filled with a lot of walking up and down hills which I coped with better than I thought I would and I was able to spend a day at the sea in Eastbourne on one of the days when the weather was good I had hoped to walk along the beach and get some pictures in some rock pools but alas it was not to be as the tide times that day did not allow it but I did get a picture through one of the groynes looking towards beachy head using my new camera

Holywell

I also was able to take some pictures of  Brighton and the famous pier using the easy panorama function which I think you will agree does a good job

      One other trick that my new camera had in store was slow motion video and so to illustrate i have included a small piece of video of some seagulls on the seashore 

I am so grateful to have made it back to Sussex again and without my transplant I feel sure that I would not have had this opportunity. I sat by the sea drinking coffee and realised how luck I was to be able to breath in the sea air with my new lungs.
I gave thanks to the anonymous 45 year old donor who selflessly left me the gift of life 10 months ago that has enabled me to have a quality of life again that I thought I had lost forever. I have recently moved into my last year of my first half century. The experiences I have been though have made me realise how lucky I am to be writing this blog.
I follow people who have not been as lucky as me and are still waiting such as Victoria Tremlett she is presently deteriorating and desperately waiting for a transplant you can follow her blog on my blogroll

Past the Point of No Return she is needing a transplant very soon or she will die.

She is one of the people who is in danger of dying while waiting,

as three people do every day in this country  

If you are reading this and have not signed the donor register please take the time to click on the flashing heart in the right hand column of this blog and that will take you to NHSBT website where you can add yourself in a couple of minutes.Then you will receive a card in the post to carry with you in your wallet or purse.When you do, please speak to your next of kin about your decision so that they know what you want  as they will be asked about your wishes.

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

Eastbourne pier & Memories of Whitebait

Eastbourne from Beachy head

Our holiday is going well the weather is still being kind and we have enjoyed the time with relatives catching up with the news.Our most recent foray was to Eastbourne again.This time to the pier.we spent the afternoon having a walk up the pier took tea and coffee in one of the cafes and I played some pool with my son in an games room in the arcades.
Playing pool brought back so many memories as I spent many hours during my time in Nursing training playing pool with a good friend in my training group.I was playing pool the night I met my wife in the social club of the hospital I trained in.Although the hospital  is now long gone, our memories are still strong, my wife even had a go at pool when we were playing, to show my son that she could play.
After we had finished we went to the town to find somewhere to eat and decided on a lovely little Italian restaurant where we had some lovely pasta and I found another memory booster on the menu.
Whitebait-small flour coated and deep fried whole fish. I have been looking for these for ages and was over the moon to be able to eat some again,I must explain why.
When I left Sussex and returned to Oxford I did so to be near my eldest daughter. The relationship with her mother had ended and she had returned to Oxford about the same time as I had got together with my wife.
I had made a commitment to continue a relationship with my daughter despite this.So when a new Regional Unit for Forensic Care opened in Oxfordshire I applied.
I had a great job in Sussex with good promotion prospects and my wife's family were local. But I felt that my daughter was more important and so I applied to Oxford.
I was offered the post and moved into the hospital.But before we opened there was a period of training this allowed us to work 9-5 for a few weeks while we sorted out the new clinic. A time for team building and sharing this was done in a local pub called the Waterloo (also now gone) just down the road from where I live.
We would spend our afternoons drinking and getting to know each other and having a great time.
Although I didn't particularly want to work in Oxford this was a good time in the Forensic Unit's history when we started out, as we had high hopes for the future.I remember fondly one of the specials served in the pub and a favourite of my ward manager Prem Calloo was fried whitebait served with chilli sauce washed down with lagers and dark rum, many a happy afternoon was spent there!
I was able to buy whitebait in the past, but have not seen it for sale for a long time, so I was so pleased to taste it again.My son tried it and he liked it as well.
Unfortunately Prem is also gone now, he died of a heart attack in front of me in the Clinic we started, just a few years later. One afternoon when we were working together he just dropped dead. He has a headstone in the local graveyard near Agatha Christie and is remembered fondly by me, when I eat whitebait, always with some hot sauce!

All in all this holiday has been steeped in memories for me and a realisation of the passing of time, it may be because I am getting near my birthday at the end of August, and birthdays of late tend to be reminders of the passage of time.But I do hope that there will be many more different memories yet to come after my transplant and maybe a few to revisit again, many of those will be in Sussex.

Whatever happens you cannot go back you must continue forward whatever that brings.

I thought that a couple of photos would be nice after that deep and rambling trip down memory lane so here goes;

Eastbourne pier

Beachy head

Sussex seagull