Three Year Wedding Anniversary

Time is moving on quickly of late with lots happening in a the space of a short time. Today was my third wedding anniversary, remembering the day I married is hard. 

I had to use my oxygen before I was able to get out of my car and walk the short distance in to the Oxford registry office from the disabled spot outside. Our simple ceremony with just our our two witnesses was over quickly and there was no party.I needed to use my Oxygen all the way home afterwards.

It marked a turning point in my life. 

I had just gone on the list and had received two calls within one month of being listed  

First call   Second call 

I had realized that I might not survive the process of transplant or the wait and wanted to put my affairs in order and on those first couple of calls I was very worried about outstanding issues with my pension, tenancy and provision for Liz and my children.

Three years on and life is totally different 

I am so much better and looking forward with hope, thanks to the donor who has given me this chance to live a new life and honor his memory.I am now able to do things with my wife and children and support them like a husband should.
Liz and I met 25 years ago and always said that we would get married, but just didn't get round to it.Life moved on, we had kids and still ,despite me going down on bended knee years ago in the middle of the staff social club at my old hospital,it hadn't happened.
I was staring death in the face when we finally said "I Do" and it all became clear, Love , friendship and happy experiences are the things that matter.
I really hope that I will be able to give my beautiful wife many more years of all of these things

I love you so much Liz and I'm so glad that you have been there with me though all these 25 years. 

You are my rock and I hope that the years yet to come will be even happier

Since my transplant lots has changed and just last week we finally placed my mums ashes in her final resting place in the local church garden of remembrance in St Mary the Virgin, Kidlington. It overlooks the open countryside and I finally felt a sense of peace for her since her passing. I draw comfort in the fact that there will be a space for my ashes with my mums should I wish it when the time comes.

      

I was forced to think again about my mortality as transplant is extra time not a total cure.Because of the medication I take and risks with immusupression my time will shorter that it may have been.

I hope that I have many more years ahead, but I have resolved that the next few years I will going forward firing on all cylinders and making the most of the health I have got now.

I will be looking at holidays for next year and some travelling that I have put of for a while.I missed out on Glastonbury tickets this year:( But I am looking into more transport and Christmas will be a big one this year as Liz will be off. New year I am going to try to  have a proper night out if I can, Liz will be working on 1st.But before that my daughter will be turning 18 (this month) and Liz has a birthday in November so I will be looking forward to spoiling them both.

finally I have entered my first competition at the camera club this month and so I thought I would include the two pictures that I have entered

Hang On A Minute Lads, I've Got A Great Idea....

Red Arrows over Hastings seafront 

They were both taken in Hastings in the summer fingers crossed they do well, I will tell you how they do in my next post.    

One year ago my life started again

One year ago today I was wheeled into a operating theatre in Harefield Hospital breathing oxygen to stay alive, and because of a selfless 45 year old man my life was saved, I woke up breathing though new lungs.
I was so ill I would not have been here to write this post, my lung function had dropped to 13% I had suffered four collapsed lungs and nearly died from swine flu.
Then I got a call and my whole life changed.
I cannot begin to explain how bad my life was back then how hard it was for my children and my wife watching my life ebb away.You can read the posts from my blog before 4th October 2010.

But if you want to hear from people still waiting please read the blog posts from

Past the Point of No Return  &  Come walk in My Shoes 

Both these women are living life waiting for a transplant. Because of the fact that only 30% of people in UK are signed up to the Donor register they will wait longer than they need to :-(

But there is hope, you can sign the register

         NHSBT Organ Donation Register      

I have been  recovering well from my case of shingles and the pain has all but gone.I am on a course of anti viral tablets for a couple more weeks but on the whole I am well and happy.
It is almost like I find it  hard to remember my life back a year ago before my transplant, as it feels like a new life I am living now.
Yesterday I attended Harefields transplant clinic for a check up it was all good news,my lung function is stable my blood results were not a cause for concern,my weight is stable (but more than it should be) and my kidney function is no worse than it was.
I was given a green light to go swimming and I asked about going fishing again and was told that with good hand hygiene and care it would not present any problems for me. With a year behind me now my risks of rejection are less now,and so given my results the transplant Doctors were happy to leave me to visit clinic in three months time and the kidney specialist suggested six months till my next visit to see him. finally I attended the GP surgery to get the final issue sorted in preparation for the cold weather that we are told is on its way.I joined the line of the over 6os and ill for my Flu jab.I am all set now and hope that my next visit to hospital will be next year:)

A sign I wont see till 2012 (I Hope)

         

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 :-)

Holidays, Nearly There!

Got my Oxygen supply delivered to my holiday address today and collected my holiday prescription for medication I might need.Extra oxygen was delivered to my home as well and a service was done on the Oxygen machine that I use.My wife's last night shift tonight and then we are set to go.
Just need to collect all the relevant junk  into a bag to take; Phones,Chargers,Computer,NintendoDSs,Mp3players,Cameras,Binoculars,
Tripod,Hair Straighteners,I just cant live without those:))ha ha.
Then there is the make up etc but the blogs is only so long.My walking stick(yes I have one) My wheelchair, Nebubuliser all the meds and Oxygen and my packed bag for Harefields.Then we may be able to put some clothes in to take if we are lucky.
The point I am making is as a kids we were able to go on holiday with a bag of clothes and a couple of board games some cards and some drawing paper now we have to take the entire stock of Dixons for entertainment.
Happy holidays must not forget the Radio Times because the kids want to plan what to watch on TV. How did we manage as children I wonder.

I just hope we can find our way there!

They are" Under Starter's Orders"

The weekend is over and the last few days before holiday are upon us and I haven't done much!
I did manage to get mobile broadband together and have a shiny new dongle from T Mobile in a box waiting for the starters gun to go off.

This will allow me to continue with my updates on the Blog, keep up with my friends on Twitter and the kids can check Facebook while we are away.How Dependant we have become on the web!My mother in law who has no need of more, has maintained her Dial up connection to the web and so I felt that it was time to take the plunge and go mobile.

I have a few thing to sort out this week I must get some extra medication. We have a delivery of Oxygen coming on Wednesday when they will read the meter on the machine and service it. So hopefully I will have a rebate cheque waiting when we come home, after spending all our extra cash on holiday.I have been using the oxygen most of the time, so with any luck it will be a good one.

We are hoping to be at Sussex for the weekend as I hope to attend the Eastbourne Airborne show that starts on Thursday and finishes Sunday I have been in the past and have got some good pictures of planes from it.Again as always, it will be dependant on me being able to get a parking space near what is happening, fingers crossed on that. I think that we will be able to see something if the weather is good.

My plans, apart from that, are flexible. The kids what to go to Brighton for a day out, I what to get some fish and chips, from a great shop on the sea front, that uses fresh fish bought from the fishing fleet in Hastings.Another thing that always figures highly is penny arcades.I don't doubt that I will be returning with many pieces of tat by the end of the holiday, won with numerous 2pence pieces.The sea beckons but I will not be in it this year. I will have to be content to look and hope for the day when I will be able to swim in it again.
I thought that I would finish the blog with some pictures, from the last  Eastbourne Airshow we attended.

Helicopters

Lancaster,Spitfire & Hurricane 

One of The Red Arrows

Nearly Time for the Holidays

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

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

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

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

Hastings

Brighton Peir

Seagull

Eastbourne

Summer's here - Let's burn a bonfire

Summer is here with a vengeance this weekend with the temperature up and good weather forecast.For once I can breath better. I haven't had to use my oxygen when I have been out in the car today.
I saw the respiratory nurse yesterday. She rang on my mobile, number withheld, my heart jumped thinking it was Harefields again.I off loaded  about the stress the family are under and she offered to look into support.She said I should us my oxygen when out so I could walk farther, but I still feel that I am not willing to take that step yet unless I have to.Also the supplies from the Oxygen company are too unreliable with their deliveries for me to be sure to keep enough back for any trips to Harefields, which can use one and half bottles.

I had a look at the garden briefly, things are looking poor, my passion flower has died after the snow in the winter and other things are not being maintained. I have to accept that gardening is going to be a no go from now on.Even after the transplant when it comes, gardening would be a risk with reduced immunity.It is sad as I got some nice flower pictures last year.One of which I shall include to show the passion flower in all it splendour. I will have to go to some  public gardens instead. 

Passion flower and hoverfly

I say I looked in the garden briefly, because on a day when everyone wants to be out in the sun some git with as little community spirit as a dog walker without a plastic bag .Decided today was the best day to burn their garden rubbish. They spent the whole day polluting the local area with thick white smoke, probably from burning green waste,and most likely because they didn't want to pay £29 a year for the green waste collection and composting provided by the council.Council by-laws permit rubbish to be burnt any time which also encourages this sort of behaviour.

So I was trapped indoors with  the windows closed. Plus we were unable to hang out any washing to dry what a nice considerate community member they are!!! I would like to geotag them on Google maps but couldn't identify where the fire was,Just breath it in and choke on it.
I went out and got a haircut with my son so the day wasn't wasted. By 8pm it had gone out,but by that time the day was over.
I thought about my daughter who had gone on her Duke of Edinburgh camping today and wondered how she had been getting on in the heat I hoped that she was having fun as she was a bit apprehensive when she went this morning,We will find out when she returns. Tomorrow before she gets back  I hope to get out and take some pictures in the day while weather permits.

Classic Cars Day at the Park

Well I got out of the house today and went to the car rally.The weather wasn't to good and as usual had a problem finding somewhere to park near to the venue but my son and I spent a couple of hours looking at the cars and my son sizing up the ones he wanted to buy.I found it very hard to walk today. I wonder how much longer before I will need oxygen all day?At the moment I get by till the evening then I am on it overnight but it seems that the almighty has other plans.
I found it hard also to rely on my 13 year old son when we are out, to help me by carrying things and if necessary to get my oxygen from the car if I get into trouble with my breathing,which nearly happened today. He is happy to help but it should be me looking out for him not the other way round and I found myself upset because of this today.

Chevy

Rather than walking round I decided to take some pictures when the cars went past in the display areas but we were a bit late to see some of this stuff I have to consider where I can sit when out and today there were few seats.It was a good day but it has worn me out and I have posted some pictures to show you a few of the cars we saw and one of three Mini Steam Engines that were chugging round making my breathing worse but they are quite nice to look at.

Mini Traction Engine

This was on the front of a
lovely Vintage Rolls Royce
it is the early form of the Spirit of Ecstasy

The famous Italian brand

Buick

 Couple of
American cars

Rolls Royce

 Couple of
old British cars

The Morris Oxford
Built Locally to us in Cowley
Built  in India at a later date where
A version of this car still is
Hindustan Ambassador




Finally a very desirable car. My son thinks he would like to own this !!

Ford GT

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.

Got Married Today

I married my girlfriend of 22years today.
We decided that it would be a quiet affair and we didn't invite anyone except our two witnesses at 15.00 at Oxford registry office I made her my wife.
The day was quite hard for me due to my breathlessness luckily we were able to park near the door in a disabled place I had used some oxygen on the drive there and was able to get through the ceremony without needing more.

Afterwards I was worn out and was glad that I had my cylinder in the car for when we returned to it!!
The pictures that we had were not good so I took some pictures later and have include one that we both liked.  

On the List Two Calls in Two weeks

I received my first two calls after going live on the transplant list on 17th September. I have decided to write this blog to detail my journey while waiting for new lungs.
I have been reading several other blogs and have found them very helpful and following others progress to transplant has helped me feel that I am not alone.
I have been waiting to go on the list for a while but it has been a shock that within a month of being on the active list at Harefield  Hospital I have added detailed posts about the calls in the pages on the black bar at the top of the blog.
It has been a totally overwhelming experience and has left me a total wreck there are still so many thing outstanding that we have not sorted out. The issues with the tenancy and what would happen to my pension if I died.My girlfriend and I have separate bank accounts and access to our shared money would become a problem.I have tried to leave my girlfriend instructions for all the passwords to computers and my online accounts but some of these things will take a while to sort out and we hope to resolve these problems.

There seemed to be only one solution to issues outstanding,we had been together for 22 years it was well overdue. I had in the past been down on blended knee and ask Liz to be my wife and she had said yes, so we felt it was time to get on with it. I booked the Oxford registry office and had a word with some friends to see if they were free to be witnesses and the marriage is set for 23rd October 2009