Sam and Luke - A Love Worth Giving

I thought I would draw peoples attention to the following film promoting organ donation  

I was lucky to meet Luke in Oxford when he exhibited his paintings sadly I never met Sam.but had followed her blog while she waited for a transplant

you can read it Here

The End Of My Tether 

That day it lead to a opportunity to meet up with another friend from Scotland Victoria Glen who sadly is no longer with us she was also advocate for organ donation

Please take the time to watch the film and if you can share the link on social media so other understand the importance of Organ Donation 

You can watch the film by providing an Email and will be sent a link

To see the Trailer click 

   

A Love Worth Giving

Four year Anniversary

This time four years ago I was recovering from the biggest change to my life since my birth

Thanks to my donor I was able to breath again after five years deteriorating to the state of a respiratory cripple on oxygen constantly to breath.      

It seems like a lifetime ago and in a sense it is!

It has been a year since my last entry in this blog why is this I here you ask? truth is I have been getting on with daily life. There have been ups and downs in my health but mostly I have been trying to live a normal life and not let my medical conditions rule my life. 

It took a long while to get over the process of transplantation and the changes it brings with it,

I was told by my doctor that transplantation is not a cure it is swapping one serious condition for a new one.At the time I didn't fully accept what that might mean, I think now I understand!  

How have you been?
 a question many people ask when they met you after a long time. For people with a long term medical condition this becomes a very awkward one to answer! This year I have tried to answer in the expected way
"I am fine how about you"

 On the whole people don't want all the details, if you tell them they get scared for you and worry what to say to you. Truth is the only people who know what you are talking about are fellow transplantees.But for the purposes of the blog I shall briefly fill in some details.

I have had to deal with a few health issues this year not least the issue of chronic rejection! It has not cause me any overt problems as such but the thought of it being present has been hard to deal with. 

It is strange that when I was really unwell I dealt with many more problems and was somehow able to ignore them and get on with life better than the unseen issue of a worsening of the rejection!

Another issue that has taken some getting used to has been my Diabetes I have struggled with the effect that it has had on my life and the restrictions, but it seems that a the moment it is not causing any of the health issues that come long term my eyesight is okay and peripheral nerves seem good checks through my GP seem to be in the range that is expected.

I did have a issue with some sore skin areas on my right leg that was worrying me. But after a skin biopsy in the summer it turned out to be Porokeratosis. This a skin condition that can occur due to the medication I take for the transplant. I was happy to find out that it wasn't skin cancer, a risk factor for all transplants, but there doesn't seem to be much that can be done for it, and it does need to be monitored as it can develop into skin cancer in a small amount of cases therefore I will be attending Dermatology dept from now on.

RSV     

The most major issue this year was being admitted to hospital with RSV!

It started as a cold just before Liz went to Manchester with our daughter to look at accommodation for University then it got rapidly worse over that day to the point were I became breathless a call to Harefield confirmed that a hospital admission would be on the cards and when my son got back from college that night a ambulance was taking me to the local hospital.

That night I was back on 4 litres of oxygen and quite worried two days later I was back in Harefield on IV antibiotics after a bronchoscopy and a diagnosis of RSV a common respiratory illness in children for a immunosuppressed person it can lead to pneumonia and death so i was glad that I got treatment when I did even though  I had to spend the whole of the stay isolated as I was a risk to the all the other transplant patients.

  

Finally a couple of months ago just after my holiday I managed to brake my ankle walking down a hill after spending the night waiting for the demolition of the cooling towers of a local landmark didcot power station and spent some time on crutches :(

It has not all been bad although I hoped to get away a few times this year I was able to go on holiday with the family to Sussex for what would be the last time although we had done most things before we did manage to ride on the new Brighton Big wheel

 

and saw some of the sights before having a nice meal 

Brighton Street art

 
 I also managed to get to Hasting on Mayday to see the largest amount of motorbikes in one place I have ever seen. 41000 attended and filled the town with bikes I was there on my bike with my son Mine is the bike with red luggage on the right of the photo

Another interesting event happening on the same day was the local may day celebration "The Jack of the green" where you can find many unusual characters!

 "I am fine it is all the others" 

This is another stock response to the how are you question. 

In this last year this has been particularly  poignant as some of the people I follow on this blog are no longer with us now or are having a bad time of it 

Firstly Kerry who wrote Come walk in my shoes... did not make it to receive new lungs and passed away peacefully on the 21st March 2014 for those who want to support the new charity set up in her name please see The Kerry Alex Thorpe Trust  you can read more about Kerry on her 

FB transplant page 

Another person no longer with us is Hazel who wrote  Hazel's Blog - The road to transplant she was called to transplant and received new lungs but unfortunately died from blood loss on 25th September as you can imagine it has shocked me and all the people who were following her progress:(

The final person I have found out is having a very bad time is Jodie who writes Jodiecf Blog she is suffering with very bad chronic rejection of her heart and lungs and is waiting to be put on the transplant list again please if you could offer some support to her and comment on her blog I am sure she would appreciate it.
On a positive note the people I mentioned in my last blog entry last year are dong well Kirstie  is doing well since her second transplant Kimberly is getting better after her problems last year. Kath has recovered really well and is living life to the full since receiving her new heart and lungs
Katie is doing well since her transplant and is now involved with LLTGL as a advocate
If you want to help this very worthwhile charity please think about buying one of the new

 Transplant Troopers Calender 

It contains several people that I follow on this Blog and will help with educating people about transplant and organ donation

Other things that have happened in our household this year is my son Alex is now a man having reached 18 this summer. I was able to join him and buy him his first pint of beer in the local pub, something I thought I would never be able to do when I was ill.

My daughter Ellie has left home to go to Manchester Metropolitan University and my wife Liz and I will be celebrating our 5th wedding anniversary on 23 October after 27 years together.

Our family 12th September 2014

All these things would not have happened if it wasn't for my donor leaving me his lungs for that I will be eternally grateful to him and his loved ones who allowed the donation to go ahead 

Please if you haven't signed the donor register please consider doing it now 

and if you do or even if you don't 

please let your loved ones know so they can honor your wishes

Sign The Donor Register 

   Click Here        

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

 Kirstie, Victoria 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

Transplant week

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

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”

Responsible department: Department of Health

“Calls on the Government to drop its Health and Social Care Bill.”

Let us all tell the government what we what 

NHS not Private Healthcare

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.

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

 Register as a Organ Donor

One year ago my life started again

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

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

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

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

But there is hope, you can sign the register

         NHSBT Organ Donation Register      

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

A sign I wont see till 2012 (I Hope)

         

Older and wiser

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

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

Spitfire

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

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

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

Red Arrows

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

Holywell

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

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

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

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

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

as three people do every day in this country  

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

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.

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

Waiting time to transplant

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.  

Recovery confirmed

I continue to recover from my brush with CO2 poisoning recently,and attended a check up at the Churchill Hospital where I was fitted with my Bi pap machine after my discharge at the end of  January.I have been wearing the mask every night since then .I was hoping it was removing the CO2 in my system overnight,but I had not had confirmation of that fact and was feeling a bit worried.
I was seen by one of the sleep nurses who offered to answer any questions that I might have about the equipment. I mentioned that I had broken part of the mask after a week of  using it and she kindly bought me a new mask and suggested methods of cleaning the water tank that humidifies the mask .

She then stuck a needle in my ear to check my capillary blood carbon dioxide level,which sounds bad but on the whole it is painless compared with arterial blood sample from the wrist which is one of my pet hates.
It look very little time to check that the Bi Pap was doing its job well and my CO2 level had been reduced to normal levels.This was great news and I felt relieved that I was not in danger of a collapse again.I have another appointment with the doctor at end of March so I hope to find out more about the long term plan then.But on the whole I was relieved and went home happy!
 
With this recovery confirmed  I decided to start doing more exercise. Sunday the weather was good I took opportunity to walk to the local shops for a paper and some bread, it was much further than I had tried to walk before and as I set out I felt quite a lot of apprehension. Would I be able to make it? I started to get worn out at the half way point, but I resisted the urge to stop and continued on.When the shop came into view I was over the moon and was able to catch my breath while in the shop I searched for a paper for my wife and a loaf of bread.

I bought a sandwich and sat on a bench near the shop and ate it before I attempted the return journey.I didn't have any food before I left and I have found that if I don't eat after my anti rejection medication in the morning it upsets my digestion. I started back home but about half way the road was inclined slightly up and the bag of bread and the Sunday paper was quite noticeable on the return journey and I felt myself slowing down.when I did get to my house I was breathing heavily and it took a while for my breathing to return to normal,but I had done it,I felt great.

I had thought that I should be able to do the walk easier than I had, but then I was reminded that in the last five years the prospect of a walk to a shop down our road was beyond me, so I felt happier and I resolved to do much more walking as the weather gets better and as my strength increases, and  look into other ways of building myself up again as I gain fitness such as swimming and maybe some weight training.  

Walking to the shop for the Sunday papers is not a big deal.

But I am reminded by this walk to give thanks to my donor who has given me the chance to walk again!
If you haven't signed the organ donor register please consider doing so.

Give someone else the chance to walk again please
You can follow the link at the top of the blog on the left hand side, the flashing heart !
It is sad to remember that still only less than 30% of the population have signed the register

Give the Gift of Life For Christmas

I hoped this was not going to be a post that I would have to write,but here goes.
We attended clinic on Monday and there was a problem!

The regular X ray that had been done showed some congestion and it was enough for the Doctors to wish to investigate more so we were asked to expect admission for a Broncoscopy.
We had to return home as that was the day I had nothing with me. We collected the required medication and
clothes told the kids what was happening then returned to Harefield

We went to the upstairs ward above were I was for transplant, into the same numbered room "room 9"
That is were I have stayed.  I hoped that it would not be a long stay.
 The Bronsoscopy was the next day.
After there was no conclusion from the test except that there was no rejection evident a decision was made to start IV antibiotics and then I was told I would be in hospital for another 7 days at lest  for them to work.

So here I am it is good that the staff that I know work here on this ward to but I am fed up!this time around the food is less appealing and the entertainment is wearing thin.
I have been forced to think about Christmas while in here and the only present I will want is to be home with my loving family. To relax, pray to god for the gift I have been given, with hope for no more admissions for the near future.

One thing that has happened while I have been in here is I have been given information about my Donor because I requested to learn more.The information is brief and limited all I have been told was he was a 45 year old man just like me.

He was taken and has left a legacy, a gift in my body I can never repay.

Thank you whom ever you are I am doing the best to make a life. If like me you have a wife and children I will write a letter in the future to tell them about how you helped me with you donation but the coordinator has said that should be left for a while a few months while they recover and I can find the right words.

It has brought it home how important being registered as a donor
So finally you know what I will say now.
If you have registered as a donor you are a star.
If you have yet to do so please do we only know one thing for certain one day life will end.

click HERE it take no time to send a Christmas gift in the future
You could change someone's life. Someone like me!
GIVE THE GIFT OF LIFE FOR CHRISTMAS  

Got Out & About

Got a call from Harefield who needed a repeat blood test to check my kidney function they were asking if I could attend on Thursday.As this is just after my wife has worked a night shift I was not happy with her driving after being up all night so I organised a appointment at the GPs for 9.15 which is a part of the day I don't often see! but I managed. Liz drove me there to get the blood taken and reported to Harefields direct.The blood test when it was reported showed improvement so reassured the clinic and me!

 After I had done this we went out to the local town to get some money from the bank and go to the shops for some magazines.I then realised that this was the first time that me and Liz had been out together to something that didn't involve hospitals we spent some time out, but realised quite quickly that just the small amount of walking I had done was starting to wear me out. At the time there was still snow on the ground,
It felt good,& quite different as the breathlessness I would get in the cold was not there any more. But I was shocked how weak I have become after my stay in hospital when I got back in the car my legs felt quite shaky and heavy.
It would be so good to get some nice weather to get out in and as I have been advised not to drive yet I am still very dependent on Liz to get around.On the whole though I am starting to realise what will be possible now. Even though I know that I have had the transplant I am only just starting to feel and accept the effect it has had on me.
My eldest daughter who visited recently has gone back to France to do a winter season on the ski slopes and will be there till April I hope I will be able to keep in touch on Skype. Another friend who had been in America called me to say he had returned he had visited while I was in ITU but has not seen me since I hope to see him next week

The day to day things that were happening in my life are starting to come back into my life again and I am now starting to take control again! I am really looking forward to driving the car and getting real independence again and I am so grateful for the gift I have been given.

I might be good now but I don't know how well I will cope with Christmas that is rapidly approaching, many people are having a worse time!
I want to remind people there are many more people still waiting for a transplant

If you haven't, please sign up as a donor.
If you have then please talk to your family and friends about it so they know your wishes as consent must still be sought from relatives

Please remember those still waiting!

Discarged! First day home

After a lot of sorting out on Friday and a last minute rush for medication I was able to go home with my wife I had a shower before I left which tired me out and packing up all the stuff took a while but eventually we were on the road back along the journey I had done so often before my transplant.
I was surprised that riding in the car was quite so bumpy and by the end of the journey I was suffering with a few aches and pains requiring pain killers.we left some chocolate fancy biscuits and a card for the staff who were really helpful and kind.
Liz was able to park the car near the ward and despite the fact that my feet were still quite swollen I was able to get in and we left with my mum in the back helping us with the bags.the weather was wet and cold and by the time we got home I was quite worn out.
It had been five weeks and five days when I woke up in my bed today. I had some apprehension about being at home and after so long and after coming in last night had stayed upstairs but it was great to be at home. I woke up a bit late and did all the relevant medication and had some breakfast and spent the day getting used to this new way of life.
I spent some time on twitter and managed to talk to another patients husband @russwillis that I had met while I was in hospital. He had seen my picture in ITU and realised it had been taken in Harefields he contacted me and congratulated me about the transplant His wife had been a patient on the ward for heart transplant.Then about a week later he tweeted to say that his wife Dora had been admitted for a short admission and we were able to get together and share info about the transplant community and he gave me his blog address TruefallNess and a couple of other sites such as  Twitter times as luck would have his wife was discharged the same day as I was, which was nice as she was ready to go too and also hoping to get home.

I was also able to meet someone else who I had talked to on another site that i am a member Transplant Cafe her husband had his lung transplant at Harefields and early on on my time waiting she had been very supportive about  my missed calls now it was time for me to be supportive as her husband had been having some problems I offered my support and will continue to offer a ear to her worries in the future and hope that things improve for her and her husband in the near future.It was so kind of her to pop in and offer congratulation.
I will be back at Harefields on Monday for the transplant clinic and will be spending a lot of time going though checks for the near future  gradually I am understanding what a change this will be in my life but also what a precious gift I have been given and would like to say to anyone who has yet to register as a donor please click on the flashing heart link on the left column to go to the form and offer a gift of life. Remember that if you do sign up please let your relatives know your wishes as they will still have to give consent and that will help them if they know your views.
  

The Golden tweets Award please vote and get your friends to!!!

As you have have been following this blog you will be aware of the progress of my lung transplant recovery what you may not be aware of is that while I was waiting I had entered a awards scheme called the Golden Tweets.
this is a user led award that allows people to be voted for by their followers in several categories.
I had put myself forward In a couple of categories that I felt were appropriate one was Writing for the blog and the other was Private individual I had forgotten about the award because of the transplant becoming available and then realised it was coming to the end of voting so I got on twitter and asked some of my followers to vote before the end of voting.

When the voting finished it seems I had been successful in coming in the top 3 out of 183 people so now I am a finalist :)

Not only that but another person that is also waiting for a double lung transplant has also got into the finalist category for writing this is my fellow blogger who writes "Past the point of no return"  Victoria Tremlett  She suffers from Cystic fibrosis and has been waiting a long time for her transplant.

What can you do now????


Vote and vote again - Help us both get a voice for people  waiting for transplants:


Cystitis Fibrosis people


COPD people


Heart transplant People


Kidney disease People


Liver transplant People

People sitting at home waiting for the phone to ring willing it to ring because it may mean a new life for them
scared that it may not ring and they will die waiting -Three people die each day Waiting for a organ that never comes!!  

This link Golden Tweets tell you what happens now

You have till the 25^th November to vote again and make sure that the voice of those waiting for organs is heard and give me the chance to raise awareness for donors and registration

UKCybernaught -Private Individual 

Tor87 -Writing 

There are other people in the voting and I will leave it to your judgement as to whether their reasons are as valid as organ donation awareness allowing others the gift of life I have been given and Victoria so desperately needs.

Please help and I will try my hardest to get fit in time for the award in November so I can add my voice.

I am presently in Harefields Hospital  recovering. On Ward E  

 I ask this not for me but for all others waiting now somewhere in the UK tonight waiting for a phone to ring!!! 

You can also sign the register HERE