No New lungs today!

Got back from Harefields in the early hours of Friday 6.30am in the morning.
All was good with me, but the donor lungs were unsuitable for transplant.
I feel worn out and let down I thought this time thing might move forward, but it was not to be.I have asked to have a rest from the list till the long weekend is over. The transplant coordinator will ring me on Tuesday afternoon to start the process off again Wednesday.I will write a fuller account and post it in my pages over the next few days.
One good thing that came out of this is I found out what my Blood group is, got a clean bill of health a shave and shower and the chance to see the sunrise.Respect to the family and the donor who consented for the organs to be donated, hopefully someone will benefit from the other organs and tissues available. There is always next time!

23.15 Call from Harefields

Got a call from Harefields tonight for a possible set of lungs. My Heart is going ten to the dozen and I am scared but this could be the call that makes a difference so fingers crossed. watch this space...............

Monday

Went out with my wife today for the first time for a long while, left the kids at home with the hope that they would get on with things that they needed to do, like homework.We only went to the local shops but it was great to get out together.
I felt a bit better for staying in yesterday so it may be that the ash cloud is having a effect on me.When we got back I found my daughter on Facebook and my son telling me he would do his homework later in the week.My son went to youth club in the evening and I went online and found some great websites.

One site that I found was so good I spent a while on it playing with the effects and so I am posting it on the blog for others amusement it is a site that uses a physics engine to render fire and fluid effects in real time I have included a couple of screenshots but they don't do the sight justice.
Peter Blaskovic- Escape Motions Experiments

Fire

Magic

Flame can be saved as Picture

Lazy sunday afternoon

Lazy Sunday didn't go out and spent the day indoors in a bid to see if it makes any difference to my chest.Five years on from my Dads passing today.Time has gone by so fast. I miss him, you never know how much you will miss people till they are gone.
Took back the DVDs I had rented,was very unimpressed by them, the only one that was moderately interesting was "Me and Orson Wells"staring Zac Efron of high school musical fame. It is set in 1937 (before the war of the worlds was broadcast on the radio by The Mercury Theatre on the Air in 1938 ) and is the story based in real historical events set in the Mercury Theatre in NYC as they staged a production of Julius Caesar set in fascist Italy. It kept me interested more than "Nine" with Daniel Day-Lewis which was rubish and a waste of my money.
I have got out five more films this week including Avatar. I will try to write a review later on these if any of these films warrant it.

Out in the Sunshine

Got out into Oxford today to get some stationary for my son to complete his homework. I took opportunity to get myself a present that I had promised myself for a while a cutter for mount board so that I can enter my printed photos in the print completions.Although I have entered photos in the digital categories I have not sent any prints in and as a lot of competitions ask for mounted work it will help in the future. The price was excessive for a metal ruler and cutter but to by a good one costs about the price of a cheap camera.

Mount cutter £42

Anyway it will last for a long time!! Now I will have a reason to print out some of my pictures.
The sun was shining but I am still finding it hard to breath.I feel that the dust in the air is having an effect.After walking around outside found myself getting more breathless,so that could be the problem.I do hope that things improve as the summer continues.

Feeling Tired out

I have had a few days feeling worn out because despite the good weather I have been having problems with my breathing. I am annoyed that I didnt get out with the children over the holidays and now they are back at school again.
I find myself upset that the days are just flying past, I am unable to get out on my own much because the good days for breathing are less now.
Then to top it all I had a eye infection over the last couple of days taking away my ability to read,taking away another pleasure and a way to distract myself from the day to day grind.
I didn't update the blog because I was feeling fed up and didnt want to seem to be moaning.But if I share what it is like to wait for a transplant, days like these are part of it. I have been plagued with depressing thoughts about increasing disability and ending up in a wheelchair, permanently attached to a bottle of Oxygen and dependent on my wife and children.
I spent tonight helping my daughter with her Physics revision for her mock exams and for once we laughed and I felt I had something to offer. My son spent his evening playing a new game that he got, and my wife went on her night shift.
I have got out some videos to watch and I am now a well known visitor to the local Blockbuster,although there has been little to impress me lately.Watch this space for any of my recommendations in the future.

Nice Day Shame about the Volcano

Went out to take some photos today to Oxford University Arboretum near Oxford. It is a beautiful place with some lovely flowers.I have been able to spend some time photographing there in the past due to its policy on disabled access which is great, parking(Blue badge) and entrance for disabled with a carer and children is free most of the areas are easily accessible.
This time of the year there are magnolias(top) and Camellias(bottom) flowering and as I went too late last year and as the weather was good My wife and son came with me.I hadn't bargained for the effect of the volcanic ash that had been raining down on England for the last couple of days and found myself unable to walk more than a few steps before becoming breathless.
I was fed up and upset and for the first time I had to concede my need to use a wheelchair and be pushed around by my wife.I was finally having to come to terms with the fact that I had lost my independence we had carried the wheelchair in the car for a while and had used it on several visits to Harefields but this was the first time when I had to take it out during the day and rely on others so much since I was hospitalised with a collapsed lung.
I was able to take a few photos but on the whole it was too much trying to walk far it wasn't to long before they were closing and we had to go home, but it was a nice day and it was good to be out in the sun.
I managed a few good pictures but a lot were blurred due to my shaking but I thought I would post two of what I managed.

Camera club Competition

Didn't win the portfolio competition but I was happy with the pictures that I had put in and enjoyed the night which is the reason I go.I have decided to post the pictures anyway so that you can make a judgement on them they are all of owls and three are British natives.I hope you enjoy looking at them

Eagle Owl

Tawny Owl

Barn Owl

Screech Owl

Nice weather shame about the lungs

Got out and about over the last few days but even though the weather has been good my breathing has not.
I went out with my daughter and son shopping in Oxford and as she is a teenage girl she wanted to go clothes shopping.I was luck to be able to get a space using my blue badge nearby on double yellow lines but the walk of 300m was a killer and I had to stop several times on the way. I found myself sat outside the shop surrounded by OAPs while she shopped as I couldnt walk around.My son was concerned for me and stayed close by, but I told him to go and look in some shops he wanted to look at; Game ,Gamestation,and the Sony shop. This was followed by a debate on the merits of HD Television and a request to get one and a Playstation 3 to go with it!
I Had to walk to one of the large department stores in order to use a toilet as public toilets are virtually non existent in Oxford city centre thanks to the lack of funding and maintenance and as my medication makes me more needy than most people I have to plan every visit anywhere with toilets in mind.
I then had the chance to do some shopping for myself. One thing that was outstanding in my bag that is packed for the transplant is nightwear.As I will have a wound on my chest my T shirts I use at home will not be suitable to wear so I ended up buying some checked pyjamas after my daughter told me that the light blue pair I was looking at were not to be bought as they looked hideous and she would not visit me if I was wearing them.But I did think there was a positive side to grey it doesn't show up the blood quite as badly as light blue!
I left feeling a lot lot older than my years after sitting with the OAPs and  buying nightwear that my granddad would have liked to own if he was still alive. instead of jeans or a nice new shirt as I would have done in the past. Never mind all set for my next journey to Harefields now.
While on the way back to the car I took a rest and was treated to a view of Oxford's resident vagrant population, a man and pregnant/liver diseased woman picking up dogends as they walked through the town centre My son asked want they were doing, and was shocked.
I just told him addicts do anything for their drugs and with the rising prices of tobacco the ban on smoking in public buildings had obviously benefited them.
My son said he would never want to end up like that.I felt sad for them, and hoped for the help they needed to sort out their lives, as no one wants to end up in that sort of life.They reminded me of some of the patients that I had worked with while I was Nursing, many of whom didn't make it.
I think what makes a difference in life is Faith in God and hope for the future. So I said a pray and moved on with hope.
   

Portfolio Competition at Camera club

Just posted some pictures for the Annual Camera Club Portfolio competition.I sent four pictures of Owls and hope that I can defend my position as winner of the digital category last year.I was happy to win as it was my first year with the club I don't know how well I will do this year till Thursday,fingers crossed.While I was on the club website I was happy to see that one of my other competition winning photos had been posted on the website.My first competition winning photo to be published!
If you would like to see it it is at
www.wallingford-photographic-club.org.uk
If my photos do well in the competition I will post them to this blog

23 years got past Us

Today Is the day 23 years ago when I meet my wife. We spent that night sitting up and talking to the early hours that was the first time I kissed her. I love her as much today as I did then. Lots has happened in the intervening years but she stuck with me and I couldn't imagine a life without her.
I love you very much and always will.

Camera Club Night

I went to my camera club meeting tonight and it was a competition night.I did quite well with one of my photos that scored 17/20.
I was glad because I have not had to much time to sort out pictures lately and it was a picture of a clematis that my mother had grown so I was glad to get such a good picture from it.I have included a copy for you to judge how good you think it is.

Shocked in the Supermarket

I spent the day in bed yesterday. Although my test results had come back clear from my chest clinic I had eaten something that disagreed with me a bad stomach resulted.
I felt able to get out today and do some shopping with my son,my breathing was better and I was grateful so we went to the bank to get some money and then went to the supermarket to get some things for dinner.I was happily collecting food I had been craving I had just rung home to ask what was needed and was looking at some deserts when the mobile rang...the display indicated a call from number withheld phone.
I felt my heart start to beat faster and a voice inside me said "here we go" I answered the phone tentatively expecting a unknown voice from Harefields. What I did hear was my daughters voice asking me to get her some crisps that she wanted.
She had rung on our home phone which was number withheld, a left over from the days when I worked as a Forensic Nurse, instead of her mobile.
I let out a audible sigh of relief and felt my body relax after the tension moments earlier."what's up" she asked and I told her that I had thought it was Harefields ringing.
That is the way it goes when you are on the list, you get on with life trying not to think about it but then bang something slams it back into reality.I took a moment to calm myself down and then got the rest of the shopping before going home to as the equilibrium returned to my life for a while longer.

What a difference a day makes

Have had a bad day with my breathing today which is annoying because the weather was quite good and normally it is wet days that are a problem.But today proved to be the exception to the rule and a trip to the local shop proved to much and my heaving for breath in the shop drew stares from fellow shoppers.
That is the thing with this illness there is no predicting the good days so you cant plan for the future very well.for most of the day I have had to stay close to Oxygen so I wasn't able to do much.The kids are bored already and the holidays have just started.But today my daughter felt ill with a headache and didn't what to do anything anyway.My son spent some time cleaning up his room and my wife spent time recovering from lack of sleep due to stress related insomnia.
Life is on hold at the moment I will hope for better function as the week continues and hope everyone will feel better soon.

Holidays Start Slowly

Despite my intentions to get up and go out to a local Easter fair with the hope of some Photos I didn't get up and spent the day at home.The weather was poor and so I wasn't to worried, with some encouragement from Liz the kids got on with some of the Homework that they have to do.In the evening, to save work for Liz, we all had a Indian Take away which was great.
Since last year when I had a persistent bug called pseudomonas aeruginosa in my lungs that took several months to treat, I have been unable to do much to help with the cooking. I now get so breathless when cooking that Liz has asked me not to.
I found this hard to deal with as I was doing a lot of the cooking when I was better,I felt that that was my contribution to the household.This is one area of the illness process that is most hard.Continuing to adjust to what is possible as you get more unwell.When I went for my assessment for 4 days at Harefields Hospital in January 2009 before I went on the list in September 7th 2009 I was a bit concerned that maybe it was to soon to be considering transplant as other people at the clinic were on Oxygen continuously and I could get by in the day without most days. But now I find myself using Oxygen every time I go out, and my concentrator runs 24/7 at home so it seems it was just the right time to be listed.

say 99?

I thought at this point it would be good to mention where the title of the blog came from
In the past I have spent a while in hospital and had the dubious pleasure of being an unusual case. On these occasions when able, I have been subjected to several groups of medical students who have been sent to find out what is wrong with me as part of their training.
On these occasions one thing that I have been asked frequently is to "take a breath in and out" then please could you say "99", this enabled the more accurate students listening to my lungs to determine that on my right side the lung is not fully inflated.I had several pneumothoraces resulting in me having 4 chest drains inserted in my upper chest and having a one way valve on a pipe as a fashion item when I left hospital.
I was lucky that the hole in my lung repaired itself and they were able to remove the pipe.But the phrase has remained in my memory.
I have researched this subject and found out that this phrase that is integrated in to a chest examination is used to elicit tactile fremitus and enable doctors to identify areas of consolidation or pneumothroax in the lungs, came about as a result of a mistake of language.The error has been repeated ever since from Doctor to medical student.

"Students are taught to say the number 99 in order to elicit these vibrations. In truth, this results from a misunderstanding of some postgraduate doctors in Germany being told to say the original German "neun und neunzig." This uses a dipthong not found in "ninety nine," but similar to "toy boat." Research has shown this dipthong is essential to the characteristic of the sound useful for diagnostics."

Dock W. Examination of the chest: advantages of conducting and reporting it in English. Bull NY Acad Med 1973;49: 575-582


So they should have been saying say Toy Boat all along.But I don't think that would have been such a good title for this blog