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        

Three years Anniversary - Rejecting My Rejection

Hello again,
It has been a while since I posted in this blog six months to be exact!
lots has been happening to me and to others I know and I have done a few things that I have been putting of since my transplant.
Firstly I want to bring you up to speed on my health I know that I said in my last post that there was no evidence of any rejection just inflammation this was an area of focal pneumonia that was treated with six weeks of increased steroids 30mg instead of my normal 10 mg but something else was found
 Bronchiolitis Obliterans
Transplanted lungs are susceptible to different types of rejection.
Acute cellular rejection – Acute cellular rejection is the predominant type of acute lung allograft rejection and is mediated by T lymphocyte recognition of foreign major histocompatibility complexes (MHC), also known as human leukocyte antigens (HLA) in humans.
Humoral rejection – Humoral rejection, which is less common than acute cellular rejection, is mediated by antibodies directed against donor HLA epitopes. These antibodies may have been present in the recipient at a low level prior to transplant or may develop afterwards. Generally, if HLA antibodies are identified in the potential recipient, the corresponding HLA antigens are avoided in a donor (so-called virtual cross-match). Hyperacute rejection is a rare form of humoral rejection that occurs in the first 24 hours following lung transplantation in recipients who have preformed anti-HLA antibodies.
Bronchiolitis obliterans – Bronchiolitis obliterans (BO) is the predominant feature of chronic lung transplant rejection and is manifest pathologically as dense fibrous scar tissue affecting the small airways. Clinically, BO is associated with a progressive decline in forced expiratory volume in one second (FEV1). While BO is felt to be largely a manifestation of chronic lung transplant rejection, several other risk factors have been identified. Less commonly, chronic vascular rejection is also present and manifests pathologically as atherosclerosis in the pulmonary vasculature

 The doctors have also done a impedance test on me as i mentioned in last post, that proved negative, so the reason for my BO is not gastric reflux leading to damage to my lungs. I was relieved about that but obviously concerned about what had caused the rejection.I went into a bit of a decline in my mood and the high levels of prednisone were helping me physically, but mentally I was a mess.It was really hard for my wife and children to be around me due to my moods and irritation.
Gradually my breathing became easier due the steroid treatment and when I returned to my next clinic appointment my FEV 1 had improved to a level near to what it was before the rejection episode. The doctor was happy with this, but when I asked him about the long term prospects for my lung function he was not able to give any guarantees,he just said we will have to wait and see over the next few months. He also told me that the blood test they had done had indicated higher than normal blood sugars and that I would need to get a fasting blood sugar test done when I had reduced my steroids back to a my normal dose as this could be the cause.
Just my luck when I did get my fasting bloods done I was called and admitted into hospital with a blood glucose level of 55mmols/l,  not good and requiring urgent treatment.So I have increased my tablets by a few more as I have now been diagnosed as Type 2 Diabetes.
I have now got my blood levels under control again but not before experiencing my first Hypo while I was out on my Birthday drink this resulted in me passing out and cutting my head open in a packed pub in front of the band that was playing how embarrassing was that !!
The one positive effect that has happened is that I was able to lose a bit of weight and it has given my Diet a boost not having any sugar :) As I was leaving hospital I managed to take this picture to post out for Transplant week reminding me how lucky I am !!

what else has happened ? well quite a lot. I decided to deal with the issue of rejection in a positive way by getting on with life and doing things that I had put on hold.
I went out and bought a motorbike

Honda Crossrunner (VFR 800)

At the same time I bought my son a bike too

Honda CBF 125

I was able to get on holiday and had a great time in Hastings with my wife's family although I haven't been able to do all the traveling I was hoping for it was great.I was able to take a picture that I have been waiting to take for a few years while there

It is a view looking towards beachy head and shows the Seven Sisters cliffs from the Coastguard cottages It was at the bottom of a steep incline and was quite a walk. One I would have been unable to  manage before my transplant

I had a birthday at the end of August and moved into my second half century on this earth. Although much of that night is a loss to me due to Woods Navy rum and an encounter with a PA system ( see above ) I have now got a permanent reminder on my forehead of the nights escapades.    

When we got back from our holiday we started to sort out the house and managed to clear a skips worth out rubbish out of the house and we hope that we will be able to clear a lot more in the near future. Much of which had been left from before I got my transplant and we hope that now we will be able to get a new bed and furniture now we have space and I will also be able to move my mothers furniture I was left in her will from my brothers house.

I have been pondering my life a lot and realized that I am so lucky. 

My life has been limited by my illness but I have also have  been given two gifts, the gift of life from a 45 year old man  who gave me his lungs, for which I will be forever grateful.

My second gift is I know my life will not be as long as many others I know, due to the issues of transplantation. This is such a good thing, so many people go though their life thinking they will live forever, I know that is not going to happen!!  Therefore I try to make use of this precious time in the best way I can.People in the transplant community know this, although we don't speak much about it. we don't want to temp fate. this has been brought home to me recently.
A fellow transplantee Kirstie Tancock  whom I have wrote about in my blog before has suffered major rejection and needed to be put back on the transplant list after just two years with new lungs. Kirstie is a very healthy fitness pole instructor who had been suffering problems about the same time as I had problems and was admitted for my bronch from them on she had deteriorated we were all worried that she would die. God intervened and with the help of the Harefield Hospital team and a Donor she was able to receive a second set of lungs and is a present doing very well.
My other friend Kimberly Liane Kneil who received her transplant last year has continued to have problems since we met. She is waiting to here about a operation to help with reflux that has been damaging her lungs.I really hope she will be able to get her operation soon so she can get better again.

Why should this have happened to these young newly transplanted women why not me I had a long life before transplant? They both have their lives yet to live!! These are questions I have asked myself and there is no easy answer as to why, things can change very quickly for any one who has been through a transplant.
Only one thing is sure  we need more people to sign up as donors.

Finally some Great News
One of the people I follow on my blog got her call for a new set of heart and lungs her name is Kath and she got the call after two years on the waiting list

You can read her blog here

  And I have included another blog from a 15 year old girl called kate

You can read her blog here
She got her new lungs around the same time as Kirstie Tancock got retransplanted

As I write this It is three years today since I had my lungs transplanted and I was able to live again!
There are no words to adequately explain how grateful I am to my donor!!! He has allowed me to see my children grow up and go to college.I was able to celebrate my mothers 80th birthday with her before she passed.I have been able swim again achieving more distance that when I was younger, see my son ride his first motorbike and will be celebrating my fourth wedding anniversary on 23rd Oct after 26 years together with my lovely wife Liz.
I am hoping for many more transplant anniversaries, but am so happy with what I have had so far, everything after this is a bonus and I will be living it to the full :)
 If you would like to help someone else live

 We need more donors please if you haven't signed up as a donor and want to Click here

Then tell your loved ones your wishes so they will know what you want done

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

I thought That I would share some of the photos that I managed to take while I was there. I will be sending some of these to the LLTGL website  and to Kirstie  Kirstie is a advocate for LLTGL.

The end of a very long road as Kirstie arrives at Harefield Hospital

Kirstie

Kirstie & Stu her husband in blue LLTGL vests

The whole team who competed the ride

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

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

Kirstie's Big Breath Bike Ride

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

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

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