Sunday, December 2, 2012

Good Results At Tx Clinic

Despite my negative view about the cause of my pain in my last post it seems that the doctor was right about the cause. It was a case of muscular pain which can be worse after you have had shingles he informed me.
Therefore I have decided that I will restrict myself to just I mile (64 lengths) per session of swimming and a max of three times a week for the present. I aim to build up my stamina by adding more crawl in each session.This allows me to do my sessions in about 1.5 hours.

This last week I attended Harefield Hospital for a check up and was seen by Dr Carby. 
I had the usual blood tests,lung function, X-Ray and an additional ECG done. I am now over two years transplanted this was to check my heart was functioning well.

He was very happy to hear about my progress with the swimming and I asked him about holidays, his advise about long haul flying and destinations that I might need to avoid should I travel.He was very supportive and said as I was doing well he had no problems with most places.Food poisoning would be the biggest risk I might face due to my immunity being reduced. He advised me that good travel insurance that would fly me home quickly if things went wrong would be a must.In Europe most people had no problems and some don't bother with insurance. But my thoughts are for far distant lands, America, Japan and Australia so I will have to plan well.The staff at clinic provided me with advice about vaccination and provided a list of travel insurance firms that others had use in the past which was great :) 


How did I do?
My Blood pressure was normal which is good as it had been high.
My Weight had gone down by another 2 kg
My Blood tests showed normal levels and were stable.
My Tracrolimus levels were 5.0  ng/mL  an ideal range.
My ECG was normal
My Lung function was up (due to the swimming I'm sure)
My Xray was normal



I was given four months off clinic and am due to return in March:) The only thing that didn't go well was the weather which was lousy there and back raining constantly, the whole process left me worn out but happy!!

After the Storm
Talking about that we had another competition at the camera club this month. 
The subject was "Weather"
 I put a couple of pictures in as digital entries, but they failed to gain many marks due to the high level of some of the entries. The highest score was 14 for the  picture above taken from Glyne Gap looking toward Beachy Head Eastbourne . This was taken during the summer when we had our holiday in Sussex.
This is a picture that represents for me the end of a storm in my life that was my illness and then my transplant.
I am finally now feeling like life is settled again. 
I am looking forward to a great new year and what it may bring

Finally things have been sorted out with my mother's estate and my brother is in the process of sorting out her house to rent. The financial issues have completed and I will be moving into the new year with less money worries. It will be so hard to spend my first Christmas without her this year and we are both feeling the loss now that everything is over with.
I just know that she will be with us watching over us and our families this festive season and although financially things will be easier now we will still be missing her a lot and I will be attending church to light a candle in her memory over Christmas.

I will also  light a candle for my donor without whom this festive season would not have been possible for me or my family.  

Stuck, don't know what present to give this year  
Give the gift of life 
Sign up as a organ donor Here




Sunday, November 4, 2012

Good News and Bad?

As promised 
I thought I would update people about how the first competition went at the camera club
As you will remember I had put in a couple of digital pictures. Despite my intention to do some prints for this time life has been hectic and therefore I was unable to get round to printing and mounting up some in time.
I am happy to report although one of my pictures did a moderate 16/20 the other picture I entered scored a respectable 19/20
The picture that did so well was  "Red Arrows at Hastings Seafront"


I was really happy as it reminded me of my holiday and encompassed the feel of summer and Pirate Day on Hastings seafront when it was taken 

We have been quit busy as the kids have been off college for half term this week. 
Due to the influx of children off school I have been finding it harder to swim lengths in the pool.There is a wave machine in the pool and during the holidays it is switched on regularly causing me to have to stop every half an hour.But as there are more public sessions there is some compensation.I went out and got a hair cut to cut down on time taken for my hair dry after swimming and I like to keep my hair short anyway.

Both of the children have been occupied over the half term 
Alex went off to the Excel center with his mates to MCM London Comic Con and had a great time. 
While Ellie who reached her 18th birthday at the end of  October went off to Berlin! 
She organised the trip for the Student Union and did a great job:) The only hiccup was a delay with her passport application. Due to new rules being applied by the government  she was required to attend a interview which nearly stopped her going as we weren't sure she would get her passport in time!

 The week has been a bit stressful for me and Liz sorting all this out and during this I started to get a pain develop in my right shoulder I had hoped that it was a muscle strain or that I had slept badly but now I suspect that it maybe the start of something else as this is how it felt when I had shingles in September last year. I have been to the doctors and he has given me some Tramadol to use and now it is just a matter of waiting to see if I develop the characteristic rash. That will doubtless lead to a stay in Harefield Hospital on IV anti viral drugs for a while.I am keeping all my fingers crossed that the doctor is correct that it is muscular but I won't hold my breath on that one!!

Finally I have some good news to share regarding the camera club
 we have a new president of the camera club it is 

 Brain Tufano BSC

Trainspotting, Shallow Grave, Billy Elliot and  Quadrophenia

If you want to know more about him see the following links



     It is so great that he will be part of the club and able to support and encourage us with his years of expert knowledge and experience


Also this week we had a excellent presentation  by one of the top Audio Visual photographer 
Ian Bateman LLB,FRPS,MPAGB 
who showed this slideshow presentation which I have posted here


Tuesday, October 23, 2012

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  
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.    

Thursday, October 4, 2012

Two Year Lung Transplant Anniversary!!!

Two Year Ago a Stranger Saved My Life
I am humbled and very grateful that 24 months ago a stranger gave me a precious gift. 
Now that gift lives within me and has given me a new life. 
5am on Monday 4 October 2010 I was given a new set of lungs from a 45yr old man a heart beating donor and  my life changed forever.

I remember the day vividly, the long day waiting to see if it was a yes or no, the tearful goodbye to my family outside the operating theater, but it also feels like a lifetime ago at the same time - in a sense it is!
I was dying, my old life was coming to a end and I wasn't sure if I would see Christmas that year. My lungs were down to the volume of a coke can and oxygen was my constant companion. If you want to read how bad things had got have a look at Waiting One Year On

How are things now?
It took a while for me to recover and for the first year things were up and down it took me 18 months to feel like myself again but now things are good.  I have been able to start to work through my list of things to do when I got my new lungs 

Walk in the countryside
I am able to walk in the countryside and take photos again:) I am not able to walk all day like when I was younger but I don't have to worry about parking next to somewhere I want to go to. I was able to go on a photowalk at Rutherford Appleton Lab which I found challenging but I was able to keep up with others.

Swimming  
I am able to swim again and am doing quite well. 
After 7 weeks since I started swimming again after nearly ten years, I have improved from not being able to  swim a length of the 25m pool without stopping because I was out of breath to my present level.
I am now able to swim three miles each week. 
I do at least a mile each session and it now takes me about a hour and half to do 64 lengths. I am able to swim the whole mile without stopping now. I was told by the one of the lifeguard I am swimming further weekly than any of their lifeguards do.
I have gained so much confidence from doing this and feel much fitter now.
This is something I had found this hard since I found out after a MRI, that a previous back injury has deteriorated since my transplant and is now leading to a bit of sciatic discomfort upon walking and running is a non starter
This last week I managed to do 70 lengths but as long as I manage a mile each time I am happy I am only able to do breast stroke at present but I am aiming to improve my use of the crawl and increase the distance I can swim using it, then maybe I will be able to do more lengths as I can swim faster using the crawl.  

Fishing
This is something that I have get to sort out. I hope that my son and I will be able to get out over the winter and do a bit of pike fishing and maybe next year it will possible to get out on a boat and do some sea fishing.

Glastonbury Tor
I had hope that I would be able to attend Glastonbury festival this year but unfortunately I was unable to do this.I still use overnight Bi-Pap and this means that I would need to have access to power to use this and my nebuliser and unfortunately this is not possible as camping is the order of the day when you attend the festival.I hope in the future it might be possible but not just yet.
I would still like to go to Glastonbury town and walk up the tor and will hopefully do this soon. 

Motorbike
those of you who have read the blog for a while will know that my mother recently passed away suddenly in June at the age of 80 yrs thanks to my donor i was able to celebrate her birthday with her and the family but sadly she was unable to celebrate my birthday with me in August. 
But her legacy has allowed me to consider a personal goal that I set myself before my transplant to ride a motorbike again before I die. I hope that I will be able to realize this goal in the near future maybe even go to the TT on the Isle of man.

Day to Day 
Things are good I recently went to Harefield Hospital  for a overnight stay to get my abdominal CT scan done. This was to check the reason for intermittent swelling in my right leg. 
They put me on a drip to protect my kidneys from the contrast dye they use in the scan.
Made a few holes in my arms and found nothing to indicate why my leg has been swelling.
The positive is they also found nothing untoward that would cause concern so I was pleased about that.

I have continued to lose weight and have been using the pedometer to encourage me to walk more. 
I will now be going onto monthly meetings for the next nine months at my weight loss group and will be meeting up with the group on Friday to arrange some meetings for weekly support.

The final duty to my mum will be happening this month on the 19th when we lay her ashes to rest at the local village church 
St Mary the Virgin in Kidlington


I have fond memories of this church and my brother had his wedding blessed there. It is a lovely place for the children to visit and I hope that mum will be happy there I hope that I will be able to make her proud with my continued improving health and fitness. 

The new season has started at the camera club and we have our first members evening tonight.I will be putting some pictures into a completion from my recent photowalk at  RAL,
Model of telescope in visitors center at RAL

I have also done a few night pictures and am hoping to learn more about my most recent purchase, a new 430 Canon Flash gun.
With the new committee in place and the new website up and running Wallingford photographic Club 
It all feels very positive, there are still some of my pictures on the site if you look in the competition galleries. I hope that I will be able to have my own gallery in the near future in the members area watch this space....    
  
Hope you have enjoyed reading this blog and if you haven't signed the donor register yet you can by clicking 
HERE 
Help someone else have new life after you are gone  
But please let your loved ones know your wishes so they will know what you wanted to happen :)

Friday, September 14, 2012

Onwards & Upwards To The New Season

I have been continuing with my healthy living and lifestyle and my swimming has been getting better all the time I am now doing 50 lengths per session and am now aiming at improving my stamina.
On my last swim I was able to swim 30 lengths without stopping and am hoping I will be able to get better with time. I am still not swimming the crawl much, the odd length or two during the course of a couple of hours but this is something for the future when I get more strength.I seem to be stuck with 50ish lengths at the moment as sessions last about 2 hours and it is hard to do more in the time. But as I have been told that a mile is approx 65 lengths I hope I will be able to get to this distance soon as my speed increases.

I am still doing well with my diet and it is apparent now that due to my weight loss I will be adding a hole in my belt as I am finding it hard to keep my jeans up now and I'm in danger of losing my modesty if I don't tighten my belt up soon.
The healthy eating (low fat ,low calorie and high fibre) combined with the use of a pedometer has allowed me to up my daily walking and monitor by how much it is increasing. I have yet to to embark on a gym regime at present because an old spinal injury that I found out had got worse again after a recent MRI is playing up. I am hoping that the swimming will help it improve it and then I shall  start to use a static bike and some weights to train with rather than the treadmill.

There is one outstanding issue that I an hoping will get sorted this month that is the persistent intermittent swelling of my right lower leg.This was a slight problem since before the transplant but has got worse since. My Doctor at Harefield feels this would benefit from a abdominal CT scan to see if there is any reason for it happening,therefore I will be going into hospital for a overnight stay to get this done at the end of September.  I will need some hydration and medication overnight before the scan to protect my Kidneys as they will be using contrast dye for the scan and this may affect my kidney function.Hopefully this will provide more info as to the cause and possible treatment for this annoying issue.

Finally it is next week when the new season of my my Camera Club starts on 20th September, and I have been getting some practice in with a photo-walk around the  Rutherford Appleton Laboratory 
STFC Rutherford Appleton laboratory
This is the second year that it has been run and it was a chance to walk around the facilities, learn about the work they do there and take photos there is a chance to enter the photos into a competition and have them published. If you are interested you can see last years winning entries at this page                                    STFC Photowalk competition
I will try to post some pictures that I took there on my next blog post

Monday, September 10, 2012

Kirstie's Big Breath Bike Ride



I have just returned from Harefield Hospital where I was happy to see a friend of mine Kirstie Tancock complete a epic 180 mile bike journey from Exeter near where she lives to Harefield Hospital where she received her life saving double lung transplant.
She completed the ride with a team of supporters including her husband and they arrived in Harefield at just before 17.00 after three days of cycling!! You can read her blog "2nd Chance @ life"   it is on my blog roll

I thought That I would share some of the photos that I managed to take while I was there. I will be sending some of these to the LLTGL website  and to Kirstie  Kirstie is a advocate for LLTGL.
The end of a very long road as Kirstie arrives at Harefield Hospital

Kirstie
Kirstie & Stu her husband in blue LLTGL vests

The whole team who competed the ride

 I would like to congratulate Krstie and all the people who joined her on her ride raising money for a great set of charities including Harefield charitable fund, Live life then give life, CF trust and East Devon cystic fibrosis quality of life fund.

One thing I would like to add is if you would like to help there is still time to make a donation. Sponsor Kirstie and the team so they can achieve their target of £3000

Kirstie's Big Breath Bike Ride



 If you have been inspired by This blog post to join the organ donation register Click here and help someone live a new life after your death, please tell your loved ones about your wishes so they don't have to guess!  you may regret it later if you don't 

Monday, September 3, 2012

Seaside Memories and New Beginnings

I have been away for a while but I am back now.
My mums death was still in my mind but I resolved to leave the issues of the estate and sorting out that will still needing doing until I returned to Oxfordshire.
Managed to get a couple of weeks by the sea with  Liz's mum in Hastings. The weather was kind to us,but although things conspired to disrupt our holiday, like my Bi-pap machine braking down just before we left!
We managed to get some much needed rest bite from events that had been happening before we left.But I found myself remembering past holidays with my family in Devon and the Isle of White now that both of my parents have gone and I felt a bit lost and alone.
With the Olympics happening at the end of the holiday I thought I might get a picture of the Olympic torch relay in Hastings, but unfortunately we were travelling the night when the torch came into the town so we missed it. I managed to watch it go through my local area but more importantly a friend of mine who had a double lung transplant just before mine was nominated and carried the torch though Reading

Also competed in the British Transplant Games and got Gold an inspiration to all those who have been transplanted  

While away I was happy to find out that that the Red Arrows were to fly in Hastings as part of the town's  Pirates Day This was an attempt to break the world record for the most pirates in one place. They were successful with 14,231 pirates gathered on the beach, dwarfing the Cornish town of Penzance's previous figure of 8,734, allowing Hastings to reclaim the title it previously held in August 2010.
I was really happy I was able to use my new camera to get some shots of the Red Arrows when the performed over the sea and have included a photo for your enjoyment.




I was also able to get to the pub on a couple of nights while I was in Hastings it is not something I do much and haven't had a drink for a long while prior to this but I spent a lot of time in a pub called the "pig in paradise" on Hastings seafront while in there I was happy to find out about a friend of mine on facebook who had been called for her transplant at Harefield Hospital  Kimberley Liane Kneil
 who writes "Being Kimberly" in my blog list. Thursday 26th July 2012 she went to theatre to start a new life thanks to a selfless donor and their family and is now doing really well as this photo taken yesterday shows
Just shows how a transplant can transform lives 

Other good things have been happening... 

Since I have have been back from my holiday I have started a weight loss group that is supervised by dietitian and psychology and will run for a year. During my first couple of weeks I didn't lose any weight but I   did committed myself to go swimming as one of my activity goals.This is something I haven't done in over ten years. I was a bit apprehensive at first, being overweight and having all the scars from various chest drains I had before and after the transplant I felt self concious.But as one of my goal post transplant was to swim again "What do I want to do when I get new lungs" 

I went with my son and did it.
It was a bit hard at first as I was still not confident with my new lungs in the water but although at first I couldn't do a full length, after a while I was able to swim using breast stroke and did a few lengths although I had to rest after each 25m.

Things have improved since then and I am now losing weight slowly and swimming twice a week I am one doing One Kilometre per session (40 lengths) not bad after my first month and only 8 sessions :-) I am able to do 2-3 lengths before resting I am doing the crawl a bit, but this is something I will have to work on as I find this hard on my lungs at present and have to rest after one 25m.

I had a good visit to Harefield and was seen by kidney consultant who told me my renal function was solid my blood pressure was great and told me to come back in 6 months I was also given a clean bill of health by transplant doctor and three months off clinic.While I was there I had the chance to meet Kimberley whom i spoke about earlier who was waiting to be discharged and I also meet another Lung transplantee called Dave Southam I follow on Facebook. It is always good to connect with fellow Tx ers and meet them in person.

My brother and I have been continuing to sort out the aftermath of my mothers death and one thing that brought it all back was my birthday on the 30th August. I wished that she had been there to celebrate it with us. But  I am sure that she was present and watching over us as I spent a quiet night in with the family. 
We had a Chinese take away and everyone enjoyed themselves.I will be going out at a future date with my wife for a hot Indian or Thai meal and a drink as the kids don't care for very spicy food.

One other person I thought about was my donor a 45 year old who changed my life and allowed me to celebrate my mother's 80th birthday with her before she died, see my children complete there secondary education and move onto college and start to live the next 50 years of my life healthy and happy.
I will always be eternally grateful to him and his loved ones for allowing the donation of his lungs to help me live a new life! 
If you would like to help someone live after your death and you haven't already done so, please
Then let your loved ones know what your wishes are so that they will know what to do. 
Spare them the uncertainty you may regret later it if you don't do it                

I have resolved to to spend the next year of my life on revisiting my life again going to places that I went as a child with my parents,now they are no longer with us:(
I  particularly want to visit Brixham,Paignton,Totnes where I holidayed as a child.Visit my family, cousins in Bournemouth and up north and  my Uncle in the Isle of White.I really hope that I will also be able to go to Glastonbury festival next June but there are some logistical obstacles to overcome to achieve that!
But I do intend to fulfil my list of things to do with new lungs and hope that I will be fit enough to do some fund raising and find some voluntary work or employment.Then I hope that I can set myself new challenges to push me forward to greater achevements.
Watch this space because great things are coming I feel sure!!!

Sunday, July 8, 2012

Transplant Week Is Here Again


I am so sad and feel so alone now,since I lost my mum. she had been my rock when I was gong though my transplant and afterwards when I suffered Co2 problems and ended up in ITU.
I just take comfort that she got to see me recover and get well again and she knew, before she died, that I was recovered from my transplant and getting better and fitter day by day.

Thanks to my Donor I was able to celebrate her 80th birthday in April with her and all the family 

My lung health is good and my last trip to Harefield Hospital  I was happy to find out that all the blood results were good and I was given another three months before I needed to return. I will be back in early August because of another appointment I need to attend with the kidney consultant but my next visit after that will be for my 2 year check up with any luck.
I have had some other appointments indirectly relating to my lungs,
The first was a return visit to the local chest hospital to check how I was on my Bi-Pap I had hoped that I would be able to come off using it and was given the okay to try but after two days of not using it I was suffering CO2 headaches and I decided I would not chance leaving it, given what had happened last time I had CO2 Problems
It was quite upsetting to find out that my body hadn't been able to make adjustments to my new lungs and I had been told that I would probably need to use the Bi-Pap permanently if I couldn't get off it successfully. My dreams of being free of the mask I wear every night were dashed along with the chance to stay overnight without taking a machine with me  to prevent problems with CO2 poisoning.
One a more positive note I have been accepted to a weight loss program being run to help those with health issues. It  offers a year of support and a group locally I can attend weekly the weight  has been a issue because I have developed a back problem preventing me from exercising  this is still being investigated at the moment. I hope that I will be able to get some treatment for this when the results of my MRI are reported.

Just before my mother passing I had helped with the camera clubs annual  exhibition at the town hall as part of the town's carnival celebrations I had prepared prints to be exhibited. For the first time my pictures were shown and were well received by all
I put in three pictures




Finally as I mentioned in my last post I received a cup for the annual portfolio competition this season it now takes pride of place in my front room and will be with me till next years AGM I thought I would include it for you to see!


I am worn out with all the issues in my life at the present and will be going on holiday to my inlaws at the seaside in mid July till The beginning of August, to get a break.I am not looking forward to the aftermath of my mothers death and the practical issues of sorting out her belongings over the next few weeks.  

One thing it has done is encouraged me to grab life with both hands and live it  to the fullest as a tribute to my mum and the 45 year old man who gave me a new life by donating his lungs to me :-)

I just want to finish this blog with a reminder that next week is National Transplant Week I will be on twitter and other social networks throughout the week encouraging people to sign up as organ donors and sharing my story to honour my donor

If you want to support  the week go to Transplant week site 
You can download a pack to help raise awareness of organ donation and donor registration.

The numbers of people registering is increasing but is still only 30% of the population  it would be great to raise it to 40% what do you think?

If you are on Facebook or Twitter you can share any stories about successful transplants like mine and the people who's blogs I follow like
 KirstieVictoria T, Victoria G, David and Kerry



But lets not forget those still waiting like  
Kimberley, Kerry ,George and Claire 


If you are on Twitter Try adding #Organdonation and #Transplantweek to your tweets and retweet any you see relating to organ donation and Donor registration.You can also follow
@NHSBT  @LLTGL  @RBandH @DonnasDream


Facebook pages you could like include
https://www.facebook.com/LLTGL
https://www.facebook.com/donnasdreamcampaign
   https://www.facebook.com/organdonationuk



Finally some Videos to share and watch

Royal Brompton and Harefield


Saturday, July 7, 2012

R.I.P. Who Knows What Life Will Bring?


I am now 21 months on from my transplant and life has dealt some hard cards to me since my last post. Quite a lot has happened and I have been finding it all quite hard to cope with.

My worst news happened on 20th June when my mother of 80yrs died suddenly!!

She had been fit and healthy and had no health problems that would indicate this was going to happen, but was found by my younger brother when he went to visit her home.
She had died from a bleed in her brain it was quick and we feel merciful as survival could have led to disability that I know she would not have wanted, nor coped well with.

Despite this I was shocked and distraught and couldn't believe it had happened :(
We had her funeral on 29th June

Barbara
R.I.P.- Mum
29th April 1932 - 20th June 2012
 Miss you so much


As the post title says "Who knows what the future will bring?" we never know, so make sure that you fill your life with happiness live your life to the max and tell those you care about that you love them often

Thursday, April 12, 2012

18 Months Of New Life With New Lungs

I have now been transplanted 18 months and time has rushed by!!
It doesn't seem that long ago that I was kissing my wife and children goodbye at the operating theatre doors not knowing if I would be saying goodbye for the last time.... and then waking up to a new life.

This last week I have been spending time with my children as they are on half term If it wasn't for my donor I would never have made it to this point. I have been able to see them through to the finish of their education at school and I am able to watch them move on to further education,  my daughter is now half way through her A levels and looking forward to university. While my son is has a offer to start a course in furniture making at the local further education college in September and is really looking forward to it.

I have also had the pleasure this week  of celebrating 25 years since my wife and I first met.
She was a general nurse student on her placement in my hospital, I was a third year student looking towards my final exams. It was her last night at the hospital before returning to Eastbourne where she was training when fate brought us together. We spent that evening  in the hospital social club getting to know each other, it was love at first sight.

 We have been seeing each other ever since and  I love her more with each day we are together

We married while I was waiting for my lung transplant and will celebrate our third anniversary in October, just after my second lung transplant anniversary       

I cant say that it has all been a easy ride I had some problems early on and then got shingles last year and it has taken a while for me to feel myself again and get my confidence back after a long period of chronic illness. I had a long list of things I would do,some of which I have done some are yet to come. 

 The most important have been the little things like; 
  • Walking up stairs without worrying about breathlessness.
  • Not needing inhalers for my asthma that I suffered from for most of my life.
  • Being able to go to events and activities with my children,without them being embarrassed about my oxygen tanks and breathlessness,
  • Cooking food on a barbecue or even being around a barbecue without choking and coughing.
  • Having confidence in my abilities to look after myself again 
  • Being able to have a bath without help
  •  last but not least, being alive and not scared that I will die 
All these things are the result of a courageous man who thought about others and his love ones who consented to his wishes..A 45 year old man who I will always be eternally grateful to, signed the donor register and decided that that someone should  live after his death.
I am one of those people!!

Other good things that have happened this last week is that I entered the annual portfolio competition with the following pictures 
Fun at the Fair
It was judged the best digital entry and won first place!!! 

I was so happy this is the second time in four seasons that I have won first place in the digital portfolio:) 
First time I won was my first year in the camera club I have included the pictures that won "my village" in 16.4 2009 before my transplant 
The girl in yellow dancing around the maypole on the right of the picture is my daughter when she was much younger at a school fete at her primary school


I would also urge you to check out the "Transplant People Daily" available by scrolling to bottom of these blog posts now, where you will find an embedded widget.
If you like it please feel free to subscribe:)

Finally I would like you to consider Organ donation if you have not already.help someone like myself or one of the great people I follow on this blog to live a happier and more productive life
You can click the heart here and register now in the UK




Sunday, March 18, 2012

March on To Spring

Went to my clinic appointment this week and despite my cold leaving me gasping for breath , I have succeed, with my reduced immune system in overcoming it. My lung function has returned to a stable level and I am feeling more confident that I will not have any more problems now.
I saw Dr Carby who was happy with my progress I had lost a small amount of weight since my last visit and although my lung function was a bit reduced he was happy for me to leave Three months till the end of June until my next clinic visit!!
The only slight issue that arose was my kidney function once again was a concern.
I am back on the 26th for some advice from the dietitian, so he requested that I do another blood sample then to check my Creatinine levels then decide what must be done. He suggested that medication change might be on the cards, but I am hoping that things will have settled by then with any luck.
When I questioned him about the cold he said it could take up to six weeks to get over completely and I should carry on with the Ventolin till I was sure I was better.     
This was the first bad cold that I have had since having my transplant and I must admit it scared me,it brought back memories of what it felt like when I was breathless before transplant and having nebulisers of ventolin reminded me of my asthma attacks in the past.

The statistics that you are quoted before transplant are not encouraging 80% 1 year survival 50% 5 year survival and my consultant said something that stuck in my mind "If you get seven years from a lung transplant we would consider that a success." People think that a transplant is a cure, it is not you are swapping one condition for a new one one that needs constant vigilance, monitoring, medication and positive attitude to manage.Add a large dose of humour and faith in your God and your transplant hospital and you can help the stats in your favour. You can never beat the odds completely but I hope to have a good go!!!

I read a story this week about a woman who has become the longest surviving single lung transplant patient. She celebrates the 20th anniversary of what was the first ever operation of its kind. On May 18th, 1988, With only days to live, Vera Dwyer, Carrowcrory, Keash, had the history-making surgery in Harefield Hospital, London.
You can read the article here   
 Transplant can be such a tightrope to walk at times and some of my friends have slipped and fallen! This illness reminded me of this, how grateful I am to still be doing well.

Even though I was not feeling well I have enrolled in a gym. One of the trainers is a physiotherapist trained in cardiac rehab and I had my first meeting just before my Harefields appointment. I will start my attendance when my cold is completely gone.
The other thing that I have done is to get a new appointment with the Churchill to find out about my Bi Pap and if I still need to use it.That will be coming up in April and I am hopeful that I may stop using the mask each night if my CO2 levels are stable now.

While I was in clinic I was lucky to bump into Kerry Maletroit who was  looking good and still recovering well after her trip back to Jersey for a family reunion recently. She had a successful day at clinic and her lung function continues to improve.
One of my other friends was also in clinic, Dawn Bostock she was hoping for a bed to sort out some problems she had been having. She is now getting sorted out in Harefield, but due to the amout of people with  colds and bugs she had to wait for a while for a bed. I am sending out all my best wishes to her for a quick resolution of her problems and a swift return home :-)

Finally I had another competition at the camera club and although the picture didn't score well I thought I would include for your veiws it it is a local landmark and one my contributions to the "Industrial landscapes" competition,please let me know what you think of it. 
Sunset over Didcot B

  You can also see another of my winning pictures at the website for the club now that has been posted, it scored 20/20.
It is a typical Oxford picture looking out on Magdalen College bridge where the Oxford May Morning Celebrations happen. The view is taken from the Oxford University Botanic garden.
If you what to see the photo it is Here

Thursday, February 23, 2012

Competition Results & A New NHS?

February is nearly over and next month I will be back to Harefield hospital again for a couple of visits.
I have now received my referral for the dietitian appointment ordered by my consultant, I am a bit worried about my weight and it will give me an opportunity to find out about things that might help me with weight loss and diets to avoid. I will also be back to clinic on the 12th March for a check up.I hope before then I will be able to find out about a follow up appointment to get a review of my Bi-pap that I am still using at night and finding a bit of a pain now!!
Since I have finished my pulmonary rehab, I have not been to the gym. Unfortunately the gym I was attending went into receivership just after I finished the course.I am presently looking into a recommended gym locally that I might join and have a meeting Monday next to find out more.
If that proves unsatisfactory there is a gym in Oxford that I have used in the past that offers cheap session rates, but will cost petrol to travel to.I am still intending to start swimming soon as a extra to help with the pains I get when walking.At present I have a bit of a cold so will wait till I am 100% as I don't want to undo the good work I have done so far.
The camera club competition went okay but my pictures didn't score very high but did relatively well
X wing fighter 16/20

X is where we cross 17/20



  I was happy that the judge thought the Red arrows picture showed good movement 
We had a session the week following the competition from Brian Tufano who showed us his tips for still life photography and showed us how lighting and hand cut reflectors could be used in product shots and advertising to enhance the object being photographed.I am always impressed by his talks I have attended three now and he is such a nice bloke and so interesting to listen to.If you dont know the name he is the cinematographer who was responsible for films like "Trainspotting", "Shallow grave", "Quadrophenia", "Billy Elliot",and most recently the biopic of the life of Ian Durry,"Sex and Drugs and Rock n Roll" He has even contributed extra photography to the film "Blade Runner". I learnt a great deal and I am encouaged to try some still life photos myself in the future. I have added some of my photos to the blog in the right hand column and will change these periodically

I have also added some more people who are waiting for transplants to my blog list. The first is a lovely lady called George 21yrs she says " Small happy cheeky person...I have Cystic Fibrosis and have been Waiting for a Double Lung Transplant as of 22nd December 2011" her blog is "My Journey- The Beginning Of The End!" The second person I am now following is the lovely Claire who is also 21yrs and is presently on the kidney transplant waiting list her blog is  "My world" Clare has also started a page on Facebook for others in similar position as herself "A Helping Hand"  she would love some more people to "like" this great page and share their experiences
They are both finding the process very hard and would love some support and encouragement

Finally I would like to include a request that you thinks about  the government's health reforms that are presently going though parliament. As a retired nurse and a transplant recipient I feel what is being proposed is  not good for the NHS and its staff (my wife) and patients (Me & You). 

Before I retired I had a experience of another scheme called PFI that was used to build the unit I worked in My experience of private firms in the NHS was very poor The unit was not built to accommodate the patients with the specialist equipment and conditions they required ,but built to a standard plan to maximise profit. The catering and cleaning supplied by the company was very poor and couldn't be changed and faults with the building were numerous.The price to fix faults was taken out of patient care funds and charged at well above market rates but was also fixed by contract so no one but the company with the contract could be used. The company was based in Scotland had contractors that were not local ,so many faults waited months to fix including those which compromised patients safety.
What the government is proposing is worse than PFI and it  intends to offer private firms access to the NHS  to run services I am suggesting this is a bad move for the NHS and all patients that rely on it if you feel the same as me please sign the following petition 

  
e-petition

“Drop the Health Bill”


Let us all tell the government what we what 
NHS not Private Healthcare

Thursday, February 9, 2012

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



 


 





Sunday, January 29, 2012

New Year of 2012 Starts Busy

With January almost over I thought it was time for a new entry to my blog.
During the last month I had a meeting that I attended and I had a couple of visits to Harefield Hospital so it was quite busy.
The first visit to clinic was on the 9th and although I was okay I had some issues with my chest my lungs felt congested in the upper right side and this combined with the swelling of my legs was a cause for concern. I talked with the doctor and she suggested I use ventolin nebuliser a couple of times a day and a drug to thin any congestion on my lungs to help me clear them.
 I had been told is that after a lung transplant the body can't clear the natural secretions from the lungs and you need to cough to clear them regularly this is because the connections are severed by the operation.She also told me that I should bring forward my appointment with the consultant who has been monitoring my kidney function as some of the levels were elevated that indicated some problems with them,this was a bit of a concern to me. I was another appointment for clinic in a week.
All was not doom and gloom as I was able to catch up with a couple of people while I was in clinic I met up with Victoria Tremlett looking happy and healthy and Richard Burbedge who is one of two transplant people I know who are carrying the Olympic torch in July.

The following weekend on the 14th I was booked to attend with LLTGL for their speaker project, a session to help people who have had transplants use their experience and tell their story to encourage others to sign the organ donor register.
It was a great day and I would highly recommend it to anyone who wants to raise awareness about the issue of organ donation after having a experience of transplantation.It was quite emotional to here others stories and tell our own.It took my right back to the transplant again,but also gave me guidance as to how to bring out the emotional elements that people would be able to relate to and par down my story to the most essential elements we also practised our story within a set time to help when speaking in public.
I had a great day and met Emily Thackray who is a lung transplantee who suffers with Cystic Fibrosis and who set up the campaign with her friend and is now the chief executive of  Live Life then Give life. They are a great charity raising awareness of the issue of Organ Donation.
Two of the people I follow on the blog list are Ambassadors Victoria Tremlett and Kerry Thorpe.  
Another two of my blog list are also Advocates for the charity Victoria Glenn and Kirstie Tancock.
After my session I was luck enough to have a chance to meet with Kirstie Tancock who was also attending the afternoon session of the project and is looking great after her double lung transplant.
Please take a while to visit the charity's website and learn more if you fancy raising some cash for them have a valentines cake bake they  have some downloadable resources to help you just click on the link below

Great Valentine's Cake Bake 2012 

               The following week on the 16th I attended the clinic again and was seen by the consultant due to the medication I had been on my chest was less congested and my lung function test had shown some improvement from my last visit.the doctor was very pleased and suggested that I continue with the medication to help me clear my chest and use the ventolin if I needed it but told me that it would be important to maintain my other nebulisers as a preventative measure against any another bugs in my lungs then she told me that I could have two months off clinic as she was happy with my progress.

I will be back in February for my appointment with the kidney consultant and may get a heart echo done to check that the swelling in my legs was not caused by my heart, but I was very happy:-)  Since my appointment the swelling has now improved a lot and only happens in the evening after being on my feet all day, not unusual as the doctor reminded me.

Finally You may have noticed that I have added a chat gadget on the blog on the left column  if you would like to leave a message on it I would be very happy:-) If you have any questions about anything on the blog please feel free to use it and I will try to answer you.  It will allow me to have a two way conversation with some of my blog readers and hopefully learn more about what you want from the blog.

Wednesday, January 4, 2012

Back to Life

Back to the day to day after the Christmas holidays is always hard.
After all the hard work, it is all over so quick. I had a good time but it always feels like a anti climax now my wife is back working and my children have gone back to school and college.

I have finished my last pulmonary rehab sessions and had my final test which showed an improvement in my recovery after exercise,which is great. I will need to continue my fitness regime to see the benefits increase and I am embarking on a concerted effort to lose some weight while I get fit. To achieve this I am looking around for a gym that suits me and is within my means and I will make use of my own weights at home.

I am looking forward to this new year of 2012 with renewed vigour.
I am starting back at my camera club tomorrow and will be going back to Harefield Hospital on the 9th January for a clinic appointment, looks like January will be a busy month for me at Harefield as I am also attending a meeting on the 14th January.
I hope that I will be able to look into some new options to fill my time such as voluntary work and will continue  with organ donation promotion using twitter and Google plus. I am also considering some new options for this blog in 2012 and may be adding some different aspects to it in the future.

It Is fifteen months since I had my transplant today.
I am happy to say my transplant life has got much easier to deal with now

I feel like I know when things are good and when things are not good with my body. That took a while to happen.So much of your life changes after such a major operation and lifestyle changes can be hard to come to terms with.The constant checks to make sure that lung function is maintained, the daily temperature checks and the medication to maintain your health and the worry about what might happen become easier with time.
But given that my life before transplant was so awful it has all been a revelation. So quickly you forget how hard it was to walk up stairs one at a time and stop on every step.How 13% lung function was all you had to work with and a bath was a task to be dreaded the oxygen tubing trailing around the house and the oxygen tank in the car when you went out.All this now a distant memory for me.

There have been many success stories in 2011
Victoria Tremlett  Past The Point of No Return getting her new lungs after a very long wait.
Kirstie Tancock  2nd chance @ life getting her lungs at the last moment as we saw on Love on the Transplant List the great BBC3 program.
My friend Jodie Smith got a new heart and lungs in June jodiecf.blog.co.uk/
Finally in the last part of the year, six weeks ago and at the last possible moment as she lay in Harefield hospital on ECMO like Kirstie.
Kerry Maletroit who writes Transplant Tales received her new lungs and is doing well and awaiting a discharge date in January 2012

Transplant success stories 2011
Many are still waiting
But for others I follow on this blog such a Kimberley who writes the blog Being Kimberley these things are still current issues please have a look at her blog as she waits for a place on the active transplant list at Harefield Hospital in 2012
Also Kerry Alex Thorpe who writes the blog Come walk in My shoes also hoping for the gift of new lungs in 2012 and currently the face of LLTGL campaign  to promote organ donation these women are still hoping that someone will sign the register and become a donor so that there chance at a new life will be possible.
If you have not signed up as a donor please do