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        

Moving on towards Spring

Hi I am glad to say the weather has been improving, and the snowdrops have started to bloom which can only mean one thing. Winter is nearly over and spring is just around the corner:)
I always dreaded winter when I was unwell.
It was the time when I had more of my chest infections than usual and also Flu time! It has taken a while to lose that dread but this winter I have been okay and am looking forward to my next visit to Harefield Hospital in March with minimal concern.
My eyes are better than they were but it seems that eye drops will be a constant companion in my life from now on.I had a recent visit to the local chest hospital to get my equipment checked and serviced I was provided with a new mask and tube and it seems that my Bi pap is working well.

Now my eyes are better I have returned to swimming regularly and provided ILIVE IGIVE a photo after they sent me a great T Shirt to wear to promote organ donation

My local pool where I am swimming a mile every session 

I was also able to go to a great fundraiser and birthday party for my friend and transplant superstar
Justine Laymond it was held at Chelmsford at a local hotel and because of the distance I stayed the night.
It was a chance to meet many lovely people including Justine's mum and dad and have a great meal with great company and help Justine raise the money she needs to attend the World Transplant Games in Durban South Africa, where she will again be representing United Kingdom  if you would like to know more click this link
World Transplant Games in Durban South Africa 28th July - 4th August
I was able to take my new camera and take some pictures but because of the lighting in the venue I found it a bit of a challenge to get many really good shots  but I have posted a few which I liked

The venue

Justine 

There was singing and dancing

and even an impromptu band appeared

they had a nice bar 

And so....... I got a bit drunk and had a great evening

 If you want to help Justine raise the money she needs to get to the world transplant games please click the following link 

Justine Laymond Just giving

the other thing that happened since I last posted ITV had a series of programs about Organ donation and some of the people who's blogs are on my blog roll appeared so I have included some links

Kathryn Graham - Waiting for heart and lungs ( Kath's Transplant blog)

Stacie Pridden - Waiting for heart and lungs (life is worth the fight)

Sophie Clarke who received a Double lung transplant  ( Friend on Facebook)

Sally Hart - Donated her sons organs after a tragic accident (Tobysgift's Blog)

Seaside Memories and New Beginnings

I have been away for a while but I am back now.

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

Richard Burbedge  

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

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

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

Just shows how a transplant can transform lives 

Other good things have been happening... 

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

I went with my son and did it.

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

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

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

My brother and I have been continuing to sort out the aftermath of my mothers death and one thing that brought it all back was my birthday on the 30th August. I wished that she had been there to celebrate it with us. But  I am sure that she was present and watching over us as I spent a quiet night in with the family. 

We had a Chinese take away and everyone enjoyed themselves.I will be going out at a future date with my wife for a hot Indian or Thai meal and a drink as the kids don't care for very spicy food.

One other person I thought about was my donor a 45 year old who changed my life and allowed me to celebrate my mother's 80th birthday with her before she died, see my children complete there secondary education and move onto college and start to live the next 50 years of my life healthy and happy.

I will always be eternally grateful to him and his loved ones for allowing the donation of his lungs to help me live a new life! 

If you would like to help someone live after your death and you haven't already done so, please

  Sign the donor register 

Then let your loved ones know what your wishes are so that they will know what to do. 

Spare them the uncertainty you may regret later it if you don't do it                

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

Watch this space because great things are coming I feel sure!!!

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

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

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:-)

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.  

Six months Post Transplant Thank you

Six months ago I was in ITU recovering from my lung transplant and awaiting a move to the ward on Harefield Hospital where I spent time recovering.
Can it only be that long? It feels like a lifetime and it took a lifetime to get me here.
A lifetime that my donor gave me.
A man not much younger than myself, who's life ended.
He and his relatives were unselfish and had considered what may come after the end of his life.
They offered consent for  his organs to be used so someone like me could live a better life

I would like to say Thank You to this unknown man who saved my life

Your lungs expand inside me and I take joy in the experience of a deep breath.
I can walk and catch breath without panic.
I have left my oxygen behind, my wheelchair is gone.
I can walk in the sun.with my children
I can enjoy a bath or shower and wash my hair without breathlessness
Stairs are possible,lifts are optional.

Six month on I am starting to feel like my old self again but a self I had lost to illness a long time ago

I have had some problems along the way as anyone who has read this blog knows.I still have a long way to go and the journey is hard but thanks for the chance to try

I have met some great people who have been transplanted and helped me with the journey.

People who have been waiting and are still waiting who I hope I can support  as they wait.

Finally the great people who support all those people involved in the transplantation process the Nurses Doctors and relatives and the many selfless people who raise awareness for organ donation.

Thank you all

As I look forward to the next six months I would love to report that all the people I know have had a successful transplant and are doing well if you agree with this sentiment please sign the register for organ donation if you haven't already.If you have please talk with your friends about organ donation, show them this blog if you like, you could raise awareness on your facebook page or twitter.

Lets get the message out there

Organ donation

Give the Gift of life

Three people die each day waiting for a organ to be donated. 

Only 28% of people in UK are on the organ donor register

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!

Getting On With It!

While I have been away things have carried on in the world at large and now I am home again, I don't know how and where I will fit in now?
I have potential for a new life I am still recovering and the doctors say that could take up to 6 months to finish all the healing my body needs to do.
My body is still fixing itself.

This was brought home to me today as during the night my wound sprang a small leak that required dressing in the Transplant Clinic today at Harefieds.This is my second visit back to clinic since I left and I shall be making many more visits to ensure that the lungs I have been given are looked after and monitored for any signs of trouble that could indicate a bout of infection or rejection.
People often think that when you get a transplant you are cured of the problems that you had truth is you swap one condition for a new condition.

You get a Blue book and you write all your drugs in it each day then you tick the book when you start to rattle after take all your medication.
You also weigh yourself daily a 1 kg increase may spell trouble.
Take a temperature each day If this rises over 37c it could indicate infection,
you write those readings in the blue book
You are given a  Spirometry machine and each day you blow into this to find out if you lung capacity is good this produces two readings, from this the doctors can assess you respiratory function.If these readings go down by 10% it could indicate rejection

For the rest of your life you wage war on your immune system with drugs that allows your body to tolerate the bit that isn't you! With time it becomes easier for the body to deal with this  but in the early stages it is hard on you and your body.I shake and suffer side effects and at times despair if things will get better.

But things already have.
I have new lungs I have seen them on the latest X-ray.
They fit snugly in my chest now healthy lung tissue extends from one side of the lung to the other.
There are no large holes or damage to the areas though which I exchange my breath with the world.
I am so grateful for the gift but I am impatient patient  

We met up with @russwillis  and Dora at Harefields today they were at clinic to and looked a bit fed up with being there but it wasn't long till we were all on our way blue books in hand. With the hope of a relaxing weekend to come.
It will be back to clinic for us on Monday and Thursday next week again, we were given a bag of dressings to sort out the wound care out and bid farewell to Harefields till next time.

Please remember if you haven't signed up on the donor register please do! or tell you friends why they should