Saturday, December 31, 2011

Happy New Year to All


After my last post I was able to sort out my medication by Christmas day I had started to feel a bit better.

My stomach had settled and I was able to have a great Christmas dinner that I was able to cook all by myself and it turned out great:-)
I was reminded about how things were last Christmas and how I was still recovering and only able to help with the cooking. I was also to suffer a setback in January that nearly lead to my death due to CO2 problems this all seemed like a distant memory but I was still concerned about how long I had low levels of anti rejection medication in my blood and was that going to be a problem?
I was very happy that after a repeat blood test was sent yesterday I received confirmation today that the levels in my blood were back to a acceptable concentration to prevent organ rejection developing.

I thanked God.Then thanked the clinic staff for the information.

This Christmas was the first time that I had let alcohol pass my lips since the transplant.I had a beer with my Christmas dinner and although it nearly put me to sleep I loved it!
I will now be repeating the experience for New Year and while doing the weekly shop, I stocked up with a few cans for a celebration over the New Year weekend!

The other thing that happened today is that I had my last session of pulmonary rehab at the gym and because of the last six weeks I am starting to see muscles on my arms again! I am keen to continue into the new year now I have got a start on my fitness.
I hope to get back into swimming as one of my sessions each week as this was a particular favourite of mine in the past before I got unwell and I miss the freedom it gave me.
I hope that it will help me condition my legs as I am still finding it hard standing for any length of time without cramps and pain developing. My long term hope is that I will be able to loose the weight I have put on and walk much further than I can at present.

I mentioned last year that I didn't know what I would do with my health improvements and what I would do with my life.This last year was a long one and it has taken me a lot of the year to get settled and start feeling like my self again.

I am confident about my health again but for a long while I was not.

I felt that my body wasn't my own any more, and a large part of me is not my own but someone else's that I am doing my best to look after and nurture. 
This gift that I carry in me makes me so humble. 
 I was offered this second chance at life I want to do the best I can with it.

I have decided to look into voluntary work that I can do and see how my skills can be put to good use within some sort of charitable organisation. I hope that I can continue to work with the support group at Harefield Hospital. I will continue to support others still waiting for a transplant through social media like Twitter and Facebook and continue to develop Transplant News on G+ .
I will be attending a speakers training session in the early part of January organised by LLTGL I hope that this will enable me to share my story and so promote Organ donation registration.

Future is looking bright :-)

 
 
Finally I would like to wish all the readers of this blog
A Great New Year in 2012
  Health, Happiness, Dreams & Hopes fulfilled

Sunday, December 18, 2011

Bloody Christmas post

Christmas is approaching quickly and I am rushing to get things sorted before the day arrives.
As I mentioned in the last post I had concerns about my blood levels of anti rejection medication nothing that I could put my finger on, but I felt it needed checking since I stopped taking medication for the bout of shingles.

So I went to my GP surgery as I was advised by Harefields transplant clinic and provided a box and a form for them to use to send the sample.
The bloods were taken by the practice nurse who had experience of sending bloods in the past and they were sent to Harefields to be checked and reported or were they.......??
I rang the clinic on the Friday after the Thursday they were taken the blood had not arrived I was asked to ring on the Wednesday following,still no bloods.
I was most annoyed, I contacted the GP surgery to find out that the staff had no idea about what had happened and as the nurse who had taken the blood was away there was no way to find out I was informed.
I took issue with the head receptionist and asked who had sent it to the post office as it was an important sample and poor levels could compromise my transplant.I was informed that it had not been sent to the post office but it had gone in the Christmas post sent from the surgery! Mixed in with the Christmas cards and presents being sent around the country at this festive time of the year.
As you can imagine I didn't feel very festive about the prospect.

I made a appointment to have the bloods repeated the next day with the same nurse, and I made a complaint to the practice manager.I secured a reassurance from her that the blood sample would in future be sent by registered post for next day delivery. It seems that it costs extra to send, and because no one was authorised to pay it was just put in the normal post by the staff.
I was shocked and astounded!!

I just hope that some poor child doesn't come down an Christmas morning to find, instead of a present from Santa, a plain brown box addressed to Harefields immunology with a second class stamp on!!         

The blood arrived on the Friday and it was bad news.
As I suspected the levels were below the recommended minimum to prevent organ rejection!!
Thanks to the swift attention of the staff at the transplant clinic I was able to adjust the dose up to improve the levels in the blood to the therapeutic range with a daily 500mcg tablet addition. Then it was a mad rush to get a repeat prescription to order to get some more to cover the Christmas period.More bloods will be needed for levels before the year is done but I hope I can breath easy once more just in time for turkey!!

On a more positive note I had been contacted  on twitter by a lady wanting to interview someone with information about organ donation and experience of transplantation.I was happy to answer her questions about my experiences and pointed her in the direction of LLTGL and NHSBT for further information and other resources such as Donna's Dream a group campaigning for a opt-out system for organ donation as she was interested in this,due to the current debate on the subject.
She has now published her report on her blog and is encouraging people to sign the register.
This is being shared around The University of Central Lancashire in Preston and will form part of her work as a student of Journalism
I would encourage people to read it  
The lady is  Emily Childs and her blogs is "Someone had to Say It"
 
Please share it so that more people will become organ donors in the future!
So that many more people can enjoy a new life 
 
I would just like to say ✞ Happy Christmas✞ to all my readers
 
My prayers and respect go to my donor and his family 
who allowed me to celebrate this year in good health.

Friday, December 9, 2011

Good Times and Support

I have been very busy over the last few weeks
I have been out to the gym twice a week for my pulmonary rehab course and am finding it great to be able to push myself again. I am finding the leg exercises are the hardest on me but am slowly making friends with the treadmill and exercise bike although I think that it will take sometime to get fitter after the inactivity since having shingles. The people on the course are great and I am enjoying getting out.
I have also been successful with another picture in the most recent competition at the camera club the subject on this occasion was Doorways and Gateways and I scored 20/20 for a picture taken looking out of Oxford Botanical gardens towards one of the Oxford colleges while two bikes were passing a typical Oxford sight I was very happy with this result and I have included the picture for you to see.
Gateway to Oxford Life


I did put another picture in but it scored less well but got a good response from the audience the judge felt that the doorway itself was not interesting enough to warrant a high mark It was of a piece of local graffiti which has since been painted over but impressed me a lot with its Oxford connection.
Alice was here 
  Please let me know what you think?

The other thing that I did this last week week was to attend Harefield Hospital for the second meeting of the Harefield support group.I have been involved in. 
Nicola Langlands who runs Look beyond the Heart is the driving force behind the group has worked with Harefields management to organise a meeting room. With support from Harefields Nursing staff, patients who have been attending clinic appointments plus patients on the transplant wards have been able to share their experiences in a informal setting and also been able to give feedback about their transplant experiences this has allowed people at all stages of the transplant experience to ask questions of others, network and make new friends
To allow the communication to continues between meetings and as a place to share information and support online Nicola has set up a Facebook page 
I am one of the administrators and at present the group is a open group so people can join upon request.
It will be open to all people who have contact with or experience of the UK transplant services we hope that it will grow into a valuable resource for everyone to share information and offer support to one another so please join us soon :-)

While I was at the support meeting I was able to meet a several people. two whom I have mentioned in this blog in the past.
  The first one was Justine Laymond
She was up for a clinic appointment and will soon be sailing around the world on the Clipper Around the World Race as part of a crew of people raising awareness of transplantation.
She is the first double lung transplantee to ever attempt this gruelling race.But as a multi medal wining Transplant games participant she is looking forward to the challenge.
The second person I was able to meet after following her progress for so long was Victoria Tremlett
after a four year wait I was so very happy to hear that she had got the lungs that she had so desperately waited for. She had returned to clinic as part of her follow up care and I was able to to have few words with her and wish her well with her continued recovery.

I also took opportunity to get some bloods taken and sent of to check the levels in my blood with Christmas approaching I wanted reassurance that I would not need to attend until the new year.
I had a small amount of swelling in my legs but I was happy to find out that my blood work showed improvement since the last sample had been taken. I am presently waiting for a result from my anti rejection medication levels but feel much happier to breath easy for Christmas, can't wait!!

Wednesday, November 16, 2011

Things Are Getting Better Now

I am feeling much better now and feel that the shingles has finally gone!! 

Good things have been happening with my photography and I have started a new page on my G+ account. You may have seen this on the widget on the right hand column of the blog.

Many people are starting a business page to promote their photography or company but I felt that I would like to share information from all over the world about transplantation, developments and up to date research.
The other function of the page is to offer somewhere for people to publicly state their support for transplantation and Join a group for transplant advocates at
Group As a listing of people on G+ who have signed the register.

You can visit my new page Transplant News and I would love it if you +1ed it share it and add the page to your circles so that you will be able to get the news that is shared.


Other things to report is that I am about to start my pulmonary rehabilitation  course again on Friday with a assessment of my fitness then I will start the six week course on the Wednesday and Friday the following weeks this is happening at the local gym and although I started the course once before I had to stop because of the case of shingles that I got :-(   I am looking forward to it and will be on it till early in January when I hope to continue with my fitness improvements with the extra impetus of new year resolutions to fire my enthusiasm.I have yet to brave a swimming pool although I have been told I could as the extra weight I have put on is a bit of an embarrassment.

I am also hoping to go fishing again after getting the okay from Harefields team at my last appointment might be that i try a bit of pike fishing first with spinners and plugs.I realised that the last time i when fishing was back in 2007 when I caught this pike with my son



  I am hoping now I can breath a bit better I will be able to catch a bigger one!   


My photography is coming along well and in the first competition of the season I scored two 17s with my first two entries I thought I would include them for your comments 
dragonfly
This was taken at the Oxford University arboretum local to us, when I was taking pictures of the fall

Steller's Sea Eagle

This massive eagle was flown at a local event near us in the town as part of the attractions and stood three feet tall it had talons the size a child's hand a very impressive bird can be seen flying at Warwick Castle which is were the hawk show is based

One final bit of good new is that one of the pictures that I took on my holiday before the transplant is being used in the local camera club regional competition "The Rose Bowl" run by
CHILTERNS ASSOCIATION of CAMERA CLUBS in the first round our club won the round!!!  
I have been told that my picture scored highly at 19/20 I have included a copy of the picture for you to see it was called "winging it "

  let me know what you think?

If you like these pictures I have been including these and others in my G+ photo blog along with other inspiring pictures that I have found around the internet. 
You can see them at  Marks Photo Blog
The last bit of nice news is that one of my photos is being published in a calender being arranged by a couple of the club for sale to members if you want to see the photo it is on the club website 

Sunday, October 30, 2011

Doors Open For Some, Others Close

Sad and happy news to share ! isn't that always the way

First the sad news, as you may have seen if you have been following this blog for a while one of the people I follow on my blog list has been very unwell.
The woman I am talking about is Rachael Wakefield has been having a long fight to regain her health after having a lung transplant March 10th 2010. and on 26th October she was called to heaven. 

Her Blog was called "Anything But Ordinary " she was an extraordinary person who, although I never met her, inspired me while I was waiting for my transplant.She always had a positive attitude to her troubles and in a update in May 9th 2011 on another blog "fighting for life" from LLGL 

She said " I have suffered complications and unfortunately the lungs are now damaged and will not recover. I'm now back on oxygen and reliant on a lot of treatment to keep me alive but I do not regret having my transplant for a second. My time had run out the fact I'm still here now is thanks to the hard work of the transplant team, the bravery of one special family and the kindness of an amazing donor."

She was a very brave and inspirational woman.She did so much to raise awareness of organ donation and was responsible for many people signing the organ donor register. Please read her blog which I will move to my links list.
You can also see a BBC news report about her & please read a great tribute from  LLGL- Racheal Wakefield


Breath Easy Rachy <3

 I must talk about another person that I have now added to the blog roll this is a lady with Cystic Fibrosis who is starting on the road to a possible transplant in the future and is at present awaiting a assessment at Harefields Hospital in November and has just started bloging about her experiences
"Being Kimberly" please give her your support on what is a frightening time in her life and the biggest journey anyone can make 

Please remember that if you have not yet signed the register to become a organ donor please do Here

My other piece of great news is that my daughter turned 17 the other day.

She is now heading toward adulthood, although it reminds me that I am getting older ,I love her so much and am very and proud of the woman she is growing into :)

One of the first things she did on becoming 17 was to donate blood.

She had already placed her name on the Donor register when we discussed organ donation while I was on the transplant list but she had a strong feeling that she wanted to become a blood donor. So she went with my wife to the local hospital and donated just after her 17th birthday as soon as she was legally able.
I am so proud of her for this altruistic act. I just wish I could give blood myself!!
  but you can…….click the blue banner


0300 123 23 23



Sunday, October 23, 2011

Happy 2nd Wedding Anniversary

Today two years ago I pledged my life to my girlfriend with the thought that I may not have made it to my first anniversary!
When I made my vows I was barely able to breath and had to use oxygen in the car because of this. I had taken a break from the list to get my affairs in order as I didn't know if I would survive past the operation.
My first wedding anniversary was in Harefields Hospital in a ward 19 days after my double lung transplant.
Here I am now despite my worries and happy to celebrate my good fortune with my wife who has stood by me for over 24years, though many changes, but none as big as the one we have been though in this last two years.Despite some ups and downs and illnesses along the way she has been my rock
I love you my darling wife 
I don't know what I can do to thank you. 
I just hope in the years we have now I can love you as much as you have loved and cared for me:) 
None of this would have been possible but for my donor! 
Please sign the donor register  Here


I am happy, seeing my children grow into adults and am able to celebrate!

Another reason to celebrate is that Victoria Tremlett who I have been following on this blog since before my transplant has been given the gift of new lungs in Harefields on 11th October after a wait of over four years she has had a few complications but is now doing well and back tweeting on Twitter @tor87  

I have also been following another possible transplantee Kerry Thorpe who is the face of the latest campaign by the charity  LLGL who campaign for organ donation you can find out more here
She is presently waiting to attend Harefield Hospital for a assessment for inclusion on the transplant waiting list for a lung transplant and I wish her all the best for this.

Finally a plug for a great night out that is being organised by another Double lung recipient Victoria Glen
A Great Halloween Night
Saturday 29th October  
Flying Duck Club, 
Glasgow City Centre. Starting at 8pm


DJ’s, music, dancing, rune reading, spooky face painting and prizes…and know all your money is going to a great cause! Tickets to our event get you into the club night for free!!
All cans are £2.50 on the night!!
As it’s Halloween please come in fancy dress! The general theme is Dead Famous, so think icons from the past. However any fancy dress is acceptable. Prizes for winning outfits! If you do however come with no costume you can get your face painted by our resident face painter :)
Tickets are priced at £7 standard and £5 students. Tickets online are subject to a .99p charge. This charge is to cover the cost of e-ticket service and paypal charges. On-line Tickets can be purchased  http://www.etickets.to/buy/?e=6934 Tickets can be purchased on the door.
100% of funds raised will be donate to the Butterfly Trust. 
Performers and volunteers are providing services free of charge on the night.
For more information on the event please contact us at teamglasgow3@gmail.com

Tuesday, October 4, 2011

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
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)
         

Wednesday, September 7, 2011

Late Birthday Present- Pain in the Arm

As I mentioned in my last post I had my birthday at the end of August a quiet affair with the family to mark my final year of my first half century.I had not long got back from my holiday in Sussex so made do with a nice meal rather than going out and getting blind drunk and painting the town red (just joking many years since I have done that!)One thing I had not mentioned in my last post was that during my holiday I had been suffering pain in my arm. This was I thought the result, of the exercises I had been doing in the gym as part of a pulmonary rehab course I had joined just before I had left for my holiday.The pain lasted till well after the holiday and so I found myself attending the GP's on my Birthday for some pain medication. Because the pain was not improving this should have been a clue. My GP suggested it was a trapped nerve and prescribed  DF118 they did help but the pain was still apparent.

We went shopping at the end of the week and when I got back my mother commented that I had rash on my shoulder I put some antiseptic cream on it and thought no more of it. Over the weekend though the rash developed and got very red and tender and the pain I was having got worse then it dawned on me why. I had developed a case of Shingles (Herpes Zoster).
This condition is something that is a risk for immune suppressed transplant patients and older people are more prone to it, guilty on both counts! Then as eating a  was packet of Bombay Mix and considering my next move I felt my front tooth fall out what Joy!!! The tooth was a crown and would be able to be refitted the next day I hoped, but as the next day would involve a trip to Harefiends Hospital for treatment with anti viral drugs I was really fed up.The only positive was that my temperature, blood pressure &  lung function were not being affected. I rang the hospital and spoke to the on call doctor who advised me to attend the hospital early the next day as the condition can become very serious when the immune system is suppressed and responds best to early treatment.

The next day was rushed and stressful for both my wife and I.First thing I rang the dentist's surgery and found that the earliest appointment was for 10.30 I rushed down to town to have the crown fixed back in my jaw curing the lisping voice that had developed as a result.
Then I went back home and packed up a bag , my Bi-pap machine and  medication with a vague hope that I might not need them but I realised admission would be a high possibility.I rang an cancelled the appointment that I had to review my Bi Pap at Churchill Hospital that day and finally I rang a friend who would be visiting on the Tuesday and suggested we meet up when things were sorted out.

I got to Harefield hospital and was asked to wait in a treatment room as I could present risks to other transplant patents attending the clinic. When the doctor saw the rash, which had by then developed into a mass of blisters, he told me that admission was inevitable and by the end of the day I was back on F ward.
I have been on the ward for a couple of days and the pain has become quite bad and I am glad to be here and receiving treatment with IV drugs which will continue for at least 10 days happily I have managed to get my laptop into hospital so I will keep everyone updated during my stay

Back Again

Thursday, September 1, 2011

Older and wiser

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

Spitfire

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

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


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

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

Holywell

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

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


I am so grateful to have made it back to Sussex again and without my transplant I feel sure that I would not have had this opportunity. I sat by the sea drinking coffee and realised how luck I was to be able to breath in the sea air with my new lungs.
I gave thanks to the anonymous 45 year old donor who selflessly left me the gift of life 10 months ago that has enabled me to have a quality of life again that I thought I had lost forever. I have recently moved into my last year of my first half century. The experiences I have been though have made me realise how lucky I am to be writing this blog.
I follow people who have not been as lucky as me and are still waiting such as Victoria Tremlett she is presently deteriorating and desperately waiting for a transplant you can follow her blog on my blogroll
Past the Point of No Return she is needing a transplant very soon or she will die.
She is one of the people who is in danger of dying while waiting,
as three people do every day in this country  
If you are reading this and have not signed the donor register please take the time to click on the flashing heart in the right hand column of this blog and that will take you to NHSBT website where you can add yourself in a couple of minutes.Then you will receive a card in the post to carry with you in your wallet or purse.When you do, please speak to your next of kin about your decision so that they know what you want  as they will be asked about your wishes.

Monday, August 8, 2011

Holiday - Let the Games Commence



It all systems go for my holiday:) I hope to spend two weeks on the south-east coast in Hastings this will be my first holiday since my Transplant and I am looking forward to meeting up with my wife's family and hear the news.
I must be truthful when I say that I did not expect to make it to see another holiday by the sea last year before my transplant. The organisation that was required to get an oxygen supply and equipment I had to use such as the wheelchair and oxygen bottles made the whole process very stressful for me and the whole family. this year it will be better as now I am able to tolerate the hot weather and the inclines that I will encounter I will still have to carry a bit of stuff like my Bi pad machine and nebuliser and the various pills that I consume each day but I will be able to do many things that I  avoided last year.I hope that we will be able to attend the Eastbourne Airbourne Airshow and I will try to post pictures that and of my other adventures if I can.

The other thing that has happened is I have started my pulmonary rehabilitation course at the local gym unfortunately due to me being away I will miss some of it but this will continue till September when I get back.I must be honest when I say I was worn out when I had done the first two days. I found it great to be able to push myself and was able to do much more than I thought I would, so I was glad.
My wife has also been referred  for fitness training though our GP surgery so when I have finished on the rehab I will start to go for supervised fitness sessions with my wife if she wants to so we can both get fit again.

I have also been inspired by another transplntee who I know, who is presently at the UK transplant games and has managed to achieve 
Silver Medal in Archery with a score of 278, and a Bronze Medal in the 5k run.

he said  on his Facebook page today "So proud to run as part of the Harefield CF 4 x 100 metre relay team today. Running for everyone with CF, everywhere." 

Congratulation to  Richard Burbedge @AwoogaBurbs who had several problems on his way to the games including a serious sprain to his ankle and a visit to hospital that nearly put his plans on hold so I am glad that he achieved his aim to represent his country  But most of all his win  represents the gift of life his donor gave him and me that allow us to live better and more full lives
 

This year at the transplant games 15 transplant  patients from Harefields Hospital are taking part in the  British Transplant Games 15 people who lives have been saved by donors who signed the donor register HERE

There is a facebook page you can visit to find out more Westfield health British Transplant Games 

If you would like to know more Transplant Sport in the UK may interest you @TransplantSport

Great Britain Transplant Cricket Club will also be of interest @gbtcc   

There is also the Northern Ireland Transplant Association  at their twitter account @nitransplant

 So I will say happy holidays to you and go to bed as I  have a drive to do tomorrow, hope to post more and some pictures of the seaside soon :-)

Saturday, July 30, 2011

Schools out for the Summer


The school holiday season is now under way my daughter and son are now at home all day!
A few things have happened since I last posted a blog entry so I thought I would update you on what has been happening.

Firstly I have great news on Kirstie 2nd chance @ life?
who's blog I now follow on this site.
She has been making great progress since her transplant and has been well enough to move to a open ward and has even managed to get out into the sunshine in the grounds of the hospital.:)
Her family are thrilled by the progress she is making. I would like to add my best wishes to Kirstie, her husband and all her family for a speedy and uneventful recovery.

A recovery that would not be possible without the brave donor and their family who allowed this to happen  saving  kirstie's life!! Please if you haven't signed the donor register click on the flashing heart at the top of the left column of this blog and you could save someone's life when you die you may regret it if you don't :-(
 
What else has happen then I hear you ask?
I have been out with my camera to a couple of events in the local area. Firstly there was a model making event at the local school. My son and I attended ,we have been regularly and enjoy seeing all the models. I find it facinating to see the hard work and devotion that goes into some of the exhibits.I have posted a few pictures of the event for you to see.

Washday

Solider
Honda in a Hedge


Military Bike






































































































 Although I found it hard with the side effects of my medicines to take steady pictures it was so much better than last year and the presence of smoke from the model steam engines was only a minor discomfort

The other event I was able to attend was a classic car meeting at a local hotel where two of the members were having a 30th anniversary celebration. I was also able to get some pictures of a piper who came for the celebration and played some lovely classic songs on the Bagpipes


This was a bonus as there were some lovely American and British cars on show














Studebaker

Morris Minor





Finally I have been active on the new Google trial of it new social media offering Google Plus (G+) and I am finding it a really good experiences. As you may see on the blog I have added a widget for my stream on the right hand column and a G+ icon a bit lower down please feel free to click on the icon to visit me
 If you want to get invited please send  me a email from a Gmail account contact me on toolbar under blog and I will send you an invite.
If you would be kind enough to add me that would be great, as I hope that I can use G+ to promote organ donation and will be sharing with all of my new friend more of my photography in the future.
This is a great way to share. I would urge you join soon:-)

Monday, July 11, 2011

Transplant Week Ends - New lives start

Transplant week is over for another year, but that doesn't mean that organ donation stops being needed.
just in case you didn't get to sign up I have included a link here or you can Text SAVE to 84118 

As part of Transplant week Victoria Tremlett who writes the blog "Past the Point of No Return" which you can find on my blog list in the right hand column of this blog prepared a impassioned plea about her time waiting for new lungs
She is still waiting and so are many more people...

I have good news about the end of transplant week while I was tweeting about organ donation last night I recieved a meesage on facebook to say that Kirstie Tancock, who I talked about in my last post, had recieved a call for possible lungs at Harefields Hospital. 

Thoughout the night her family waited for tests to be performed on her blood to check her antibody status, then the agonising wait to see if the lungs were good match and if there forfilled the strict criteria that must be met before they could be transplanted . 
Her husband Stu at 09.10 today wrote; 

 "Well it's been a long night and waiting for the result of each test seems like a nightmare but it has been all worth while when they say it's all going ahead, I know it's such great news to everyone on here and I'm still in shock I would just like to thank the donor and the family for allowing my beautiful wife to have this chance as i'm sure they are going through hell"

At  11.55 today Her sister posted news that her old lungs had been removed

At 14.12 her husband posted that the surgeon had said "it has all gone well" 

At 21.45 Her sister has posted that she is breathing on her own but still sedated 

At 23.08 Kirstie's dad posted this entry on her facebook group  

 Today has been the best day of my life,well thats not quite true getting married was if i didnt say that i would get beat up from the wife. but after hearing kirstie has a 2nd chance of life that means a new pair of lungs how great is that fantasticcccccccccccc. i popped in to see her for a few mins today and had a tear in my eye not of saddness but of joy.

What a great end to transplant week and proof of the good that organ donation can do for a family like kirstie's but let us also remember the donors family that allowed this donation to happen I have such respect for them.

As you may know form a prevoius post about my friend Bree Cordick 
she lost her life because of rare complications after her double lung transplant after having a great new life after transplant and she wrote the blog "The Blog Blog I would strongly advise you to read it. 
I have hosted  "The Blog Blog" on my blog roll for a long while,since before my transplant.She was a great advocate for organ donation and I would like to think that she would want to have Kirstie's blog replace it  and I will maintain a link to it on the links part of my blog to remember my friend:(  

I wish Kirstie all the best and hope she will have a  swift and uneventful recovery and hope that you will follow her progress with interest as she takes the first steps on her 2nd chance @ life

More good news 
 You will also see that another of the blogs I follow is posting good news.
  Jodie  who writes jodiecf.blog.co.uk/
  has had her Lung and Heart transplant on 14th June 2011 and as part of the procedure donated her heart to another recipient and received a new set of Lungs and a new heart.
She had some problems with bleeding and had to undergo more surgery to deal with these problem but has recovered and has just been allowed to return home 27 days after her operation
I would urge you to read her brother 's and father's account of how things happened and if you read back in her blog you will see how hard it has been for her waiting.
I am so glad that she has had her call and can continue to be a mother to her lovely daughter and continue with  her plans to marry John her boyfriend. Hope we will hear more about this soon!!

 I will leave the final words to her brother Kris;

I feel blessed to have witnessed a miracle happen at Papworth. My sister has received the gift of life and in doing so gave the gift of life. Jodie donated her heart during her operation.

Monday, July 4, 2011

Nine months on Transplant Week again

It doesn't seem so long ago that I was tweeting for 2010 Transplant Week but lots has happened since then.
I didn't know when I was tweeting in July last year that I would recieve a transplant before the next transplant week I was like  @tor87  it was the not knowing that was the worst.
Each day waiting, every time if the phone went jumping up, because it could be the hospital phoning with a offer of possible lungs.The stress on the family was intense, the restrictions it placed on my children always needing to have a phone on them and let us know where they were.It was unnatural to young teenagers who should be out having fun. We were waiting for a new life but not sure it would ever happen. 
That is what it is like when you are on the list

Sadly @tor87 is still waiting and she has produced a video about her wait for lungs for transplant week, you can watch it here Victoria Tremlett  she has had seven calls and is still waiting. 
You can read her blog on this site on my blog list "Past the point of no return

What could we do to help her? 
simple sign up as organ donors go to the NHSBT site and register online Here

Other people are still waiting 
@asideofonions  who is waiting for a liver transplant 
@alex_f_lambert a toddler who is waiting for a new kidney
 
Mrs Kirstie Tancock an ambassador for"live life and give life" charity 
She was featured on Russell Howard's Good News and has just got married after being on the transplant waiting list for new lungs due to damage caused by Cystic fibrosis. 
She writes the blog "2nd Chance @ Life"
Kirstie is presently in Harefield Hospital transplant unit waiting on her last chance to get new lungs she is slowly deteriorating and will not see her first wedding  anniversary without help.  
Let us all hope she is fortunate and receives her lungs soon
 
For information sake the following is a estimate of waiting times for  organs from NHSBT site

I got my lungs nine months ago today.

I was fortunate that a 45year old man I never met had the foresight and courage to sign the donor register and let his relatives know his wishes. When he left this world, he left a legacy of a new life for me and others.
I carry his gift inside me now and  no longer breath though the oxygen tubing I depended on.  
I went to my Transplant clinic appointment at Harefield hospital today and it was good news have been told that I can have two months off clinic and got a agreement that I could go on Holiday to the coast in August to visit my wife's relatives and get a break.
Let me hope that the people waiting will not wait for long and that next transplant week the rates of organ donation go up dramatically and enable more people to get the transplant they need.  

Thursday, June 9, 2011

Extra pressure on Clinic day

Had a Clinic day on Monday most of the day was positive.
I got to Harefield hospital a bit late because the wet weather caused the traffic to build up more than normal. I got my blood taken then had a appointment for a ultrasound of my kidneys prior to meeting with a new doctor in the afternoon.
My last visit the doctor had reduced my tacrolimus due to the fact that my kidney function was being affected hence the need for kidney check.I hoped that the results would be better than my last tests taken by my GP's that indicated a few abnormal levels in my blood .The last level of the tacrolimus was lower after the reduction, at 9.1 but not by much.

After the ultrasound and X- Ray was done I went to get some food and some coffee from the league of friends   before my lung Function test as I found that a drink helps, I also needed to take my morning medication.My lung function was okay, not great but,similar to my last clinic visit .I am always worried that something will cause concern for the doctors and most recently this has been my lung function tests!
I was told to come back at 13.30 and spent the dinnertime with a toasted sandwich, a tuna roll, Daily mail and a copy of Micromart magazine. I thought I might have bumped in to someone I knew but on this occasion  it was just me, by the afternoon it was all I could do to stop my self nodding of while I waited for the transplant doctor.

When I got to the appointment with the doctor he was happy with my results and informed me that my kidney function had improved, but the tacrolimus level had been 10.2 and so he wanted to reduce my dose again by 1mg a day and asked me to get a check the following week at my GPs' I was happy with this and asked him if he had any thoughts about me going swimming this is a activity I love! He said that it would be okay but not to swim in rivers or lakes as the risk with lowered immunity would be high.

I then went to my appointment with the kidney doctor this was okay but he did have some concerns he agreed that my kidneys were functioning better but he was worried about my blood pressure, was something I had noticed had been higher lately.He told me that this would put a lot of strain on my kidneys combined with the essential anti rejection.
His solution , Blood pressure tablets! I was not keen, but he has put me an a small dose and will see me in three months to review. I was concerned that there would be side affects but at present apart from a sight headache when I started them they seem okay.I am now monitoring my blood pressure daily  and will have to get a blood test at my GP's in a couple of weeks time to check my blood chemistry is not adversely affected.

So now I rattle a bit more due to more pills but as I have been given month off clinic I should be grateful :)
I hope that when I go to my GP I can discuss my need to lose weight and find out if he will help me with a prescription for a gym as a friend of mine at the same doctors was offered this fingers crossed on that

 I am just glad thanks to my donor that I am able to be thinking about swimming again something I thought I would never be able to do again :)
 
Please remember if you have not registered as a Organ Donor please do so by clicking on the heart at the top of the left  hand column of this blog 

Go to the Website   NHSBT  to find out more about transplants 
If you are interested in helping raise awareness of organ donation you can find out more at Transplant week

Monday, May 30, 2011

Camera Club End of the Season

This week was the last meeting of the Camera club that I attend on Thursday night. the club starts again in September. This will leave me at a bit of a loose end as to how to fill my evening now.
I entered some pictures in the end of season Annual competition as I posted previously on the blog here .
Unfortunately I did not win the competition although feedback that I received from others was favourable the judge favoured a picture of a still life scene by a friend of mine who has been exhibiting in the Oxford Art weeks her winning picture can be seen on the club website
It  is called "White" by Pam Sandhu-Dickens it was entered into the competition for the letter W.
As I said it was the last night and it was decided by the club to discuss suitable images for the club to enter in the CACC inter- club competition "The Rose Bowl" as you will know my photo "Eagle Eye" was one of the 15 prints that was entered on behalf of the club this year and although we did not reach the final we faired better  this year than last.
When the images were being discussed I was happy to see a image that I had put into a competition was being considered I did not know how well the image was received because when I put it in I was admitted to hospital that week and missed the judging
Fingers crossed that this image will be considered for entry in September
Winging It
  I would love to know what you think?

Friday, May 27, 2011

Bree Cordick - Breath Easy Now

I received some very sad news yesterday about one of the people I had on my blog roll for a while she wrote the blog blog. Bree Cordick sadly lost her fight for life after a a viral neurological infection that took her sight ended her life she fought valiantly but was sadly unsuccessful in beating the serious problems that she developed



She was 25 years old and had her double lung transplant on 07.08.09. I had been following  her on the Transplant cafe and I was impressed by her honesty and wit, I felt immediately drawn to her style of writing and laughed out loud at the things she said in her blog!She had a wit and wisdom I have rarely seen.
I had just been listed around the time she got her transplant and she gave a great introduction to the transplant process with her blow by blow account of her recovery.She encouraged me and when I asked if I could add her to my blog roll
Bree said…
"Hey! I'm so glad my blog has inspired you!:) that's exactly waht it's there for:) I wish you well and hope you get your beautifyl lungs soon!"

She was a lady with attitude and I liked that! as did the many friends who followed her on Facebook, one of our mutual friends was Justine Laymond  Life with Lam and Double Lungs Justine had been following her for a long while.Justine  had a double lung transplant before Bree in July 2006 after suffering from LAM disease.
While I was in hospital receiving my transplant in October 2010 Justine had the privilege of meeting her when she went to Canada. I was glad to hear that she had a great time as this photo shows!
Bree was a lady who had been though a lot in her life. Had thought deeply about why she was here and how she fitted in the world. I have include a entry that she made in her blog on September 30th 2010 that I feel sums up some of what she was about

"Have you ever wondered what you are?
What your purpose is?

You know you are not insignificant, right? 
I hope so, because everyone has a purpose on this earth, whether they feel like they do or not. Otherwise, why would we be here?
I was wondering this exact sentiment the other day when I pulled up to one of my dog-clients house. What is my purpose? 
I asked myself. What AM I?

And it came to me as quickly as a thought: I am a healer. I am meant to be here on this earth to heal people. Whether it be with words, through touch, or food, whether it be people, especially the sick, or animals, I am meant to heal them. I am meant to mother them.

Not in the biologicial sense. I will never have kids of my own, and that's ok, but that doesn't mean that I can't be a mother to other things, like animals, and sick people, who can't get that material healing from their own, or if they need additional love through words and such, I can be the one to give it to them - to help them heal, and deal with whatever ails them.

Does that make sense? Maybe I am psychotic, I don't know. Maybe I think too much. But it makes me feel better to realize what my purpose on this earth is. Especially long term. I can't see myself sitting in an office for 30+ years. I like to move around too much, have small adventures. I like to tell my story and narrarate along the way.

I will not be pointless. I will be significant. I will make an impact.

That's my purpose."


I know that Bree  Cordick was significant
she did make an impact on everyone
she was not pointless,
she help me and many others through her example
I hear from one of her friends that when she went blind she said  
"It's okay, I get a free dog and a stick!" typical  of her wit!

Heaven has got another Angel tonight.
she is wearing ski pants and drinking tea

You will be greatly missed, breath easy now :)