Seven years of new life for which I am eternally grateful

Today marks the seventh year that I have been breathing with someone else's lungs 

I won't say that this year has gone entirely smoothly,but I am still here and still enjoying life

  

The problem with transplants is not the surgery but the medication that is required to keep the organs against the body's inclination to reject anything foreign including my new lungs   

 I had got a six month holiday from transplant clinic as at the beginning of the year all was well with my health, I had lost weight and my lung function was good.But other things in my body were not going as well as I would have liked

I attended my renal appointment and was informed that there were concerns about my Kidney function it was deteriorating and some of my medication could be causing it.

The medication that I take for immune repression is known to cause chronic kidney problems but this is a drug I cant stop taking due to organ rejection. But it seem that the drug that I take for my Diabetes and medication I had been taking for an infection on my leg may also been contributing.

The consultant was also keen to do a biopsy on my kidney which I was not happy about 

I was told to stop taking these tablets or risk kidney failure and need to go on dialysis.Ultimately I would need a kidney transplant!    

I stopped the antibiotic and went back to the lower dose that had been recommended by transplant hospital the diabetic medication presented more of a problem Without the tablets my diabetes would not be controlled, there was no other solution than for me to go onto twice daily Insulin injection!

I was fed up!! I knew that I might end up on insulin but I hoped it would not be so soon.

It took me a while to get used to and a while to adjust the dose to my diet.

I had to send my driving licence back and was issued with a five year one and have to adhere to strict guidelines about testing my blood glucose levels when driving 

These changes had some positive and negative effects

The postive effects on my kidney function was gradual but allowed the consultant to feel happier and stop talking about the biopsy  

The negative effects was weight increase I had put back on all the weight I had lost and was suffering with swollen legs again, a problem I had not had for quite a while    

I dont want to seem negative the problems I have had are small compared with other people I follow on my blog roll I would suggest you have a look

 Again this year I have said goodbye to more transplant fiends and personal friends I had known for many years 

I have also moved into the 55 - 65 demographic on forms I fill out, something I thought I would never have to do I am in the old age range now but it is something to celebrate! 

My son has passed his full bike licence this month and has got a new job starting soon.

My daughter is doing well in her University course. 

My wife & I celebrate our 8th wedding anniversary at the end of this month after 30 years together. 

LIFE IS GOOD 

Finally I heard some great news today the day of my 7 Year transplant anniversary  

The prime minister Theresa May announced in her tory party speech that the government will be changing the law to presumed consent for Organ Donation 

This would requiring people who dont want to have there organs used in transplants to opt out 

I hope that this will allow many more people to have the chance at a new life as I have I am so glad 😊 😊 😊

                                                    

6 Years and still going strong

Another year has passed and I am still here
With each passing year I give thanks to the 45yr old man that signed the donor register and who's family gave the go ahead for me to receive his lungs

I have looking after his gift and kept his lungs alive inside me and have been able to live a full life because of this I have met some lovely people as part of this journey and I am sad to say that some are not with us now
One of the things that happens on this journey that the people who start off the journey with you sometimes only stay for part of the road you travel. This has been particularly true this year with several of my fellow transplantees having passed on and many more having life changing and life threatening complications.I wont go into a in depth listing of the people concerned but it becomes quite hard to keep positive in the light of all the issues people are facing.

But this is the deal you sign up for 

Swap one life threatening condition  for a slightly easier to manage life changing condition  

People think that a transplant means you are cured of the issues you had. It is true that you dont need to use oxygen and may not need constant inhalers and I lost my life long asthma.
But there is a cost....

I have ended up on life long Bipap and daily nebulisers for an infection I had while waiting for my lungs.The drugs have taken their toll on my body and my kidneys are getting damaged by meds.
I have had a skin infection this year which took ages to diagnose and will take 6 months of pills to clear.
I could have been worse as I am also prone to skin cancer because of the medication I take and need to use high factor sun cream (50-60 factor) whenever I am out in the sun.I an in danger of broken bones and  mood swings due to the steroids I take. I am also diabetic now.

But I am doing better than many I know.

Other people who started this journey have suffered more One person I know has had to have a Kidney transplant another has had complications due to reflux and is now permanently on tube feeding to preserve her lungs.Another friend suffered complications with a preexisting condition and had major abdominal surgery.Finally another friend is now confined to a mobility scooter to get around due to problems with medication side effects.

        To all those people who are struggling with health issues I send my prayers and wishes that things will get better for you soon.Know I will do all I can to help you in any way I can!

Those who are waiting for transplants I hope your call comes soon.Finally to those who are no longer with us it was a privilege to have known you and been part of your lives rest in peace.  

On a positive note my health has been good  except for at the beginning of the year Christmas time I felt rough and my lung function had taken a hit I was worried due to my diagnosis of chronic rejection I was told by Harefield Hospital that they wanted to do a Bronch and get a CT scan this was postponed and when I did get the investigations they showed inflammation but no definite cause.  
I was able to slowly improve and I have been able to lose quite a bit of weight which has helped and my last visit saw my lung function improve allowing me the magical six months off clinic

What is the main point to this post apart from celebration you may ask?

I think the thing I want to share is 

LIFE GOES ON

Not for all - Too quickly at times - it doesn't stop 

A New Life is not new it is a precious extension

Transplantation does not change your life but it can change you

It is important that you live that life to the full 

Do the things that are important to you.

You are the only one on this journey 

You may walk the road with others 

But at the end it is a road we walk alone.

Try to make this walk a happy one but be true to yourself

Help those you meet along the way if you can 

Share wisdom and happy experiences

Have no regrets you are playing with extra time

Seek joy and love in the world there is plenty if you look

Have fun wherever you can find it :)     

   This next year I hope to be able to do some traveling visit people I know on this journey with me. 

I hope to go abroad and travel England and Scotland and Wales 

We never know what is around the next corner in our lives but I intend to go and take a look!!! 

    

5th year Tx Anniversary - A Few Months of Pain, Another Year of My Life

Sorry That it has been a while since I have Blogged.

Quite a few things have happened, not all good, but things have started to improve now :) 

So I thought I would fill in the gaps and update everyone with the details.....

First I would like to say there have been some changes in my blog list unfortunately Jodie Smith who I had followed since her heart and lung transplant. Went into rejection and despite being on the transplant list again, she didn't get her chance and passed away still waiting.I have added her blog to the right hand side column of the blog with others who are no longer with us.  

She is survived by her daughter shown in this lovely picture from her blog back in 2010 She suffered from CF and was in her mid 30s when she passed on! 

Jodie RIP

 Another person who may have been saved by a transplant that never came :(

I have added a new lady called Parris who is 17 years and just starting on her journey towards a possible transplant she is finding it hard to deal with the emotions that this change in her life is bringing  and would surely like to get some comments and encouragement to help her through!!

One thing I had hoped is that this blog would be an encouragement to others on the transplant journey Sometimes though it is a record of the fact that, although Transplant can give someone a new chance at life it is not a cure 

On a positive note George who writes My Journey the Beginning of the end  on my blog list has had a transplant and is two weeks out into her new journey please have a read

So what has been happening with me???

Back in March I went to visit a friend of mine in Oxford and was on my way home on my 800cc Honda Crossrunner motorbike when I was undercut by a car on a local roundabout. The lady in question had taken the wrong line around the roundabout despite the signs, then decided to cut across my path upon leaving the roundabout by the wrong exit I made a decision to overtake her to avoid a collision but I had not accounted for the pedestrian island just after the  roundabout.I was unable to continue the overtake without hitting the island I made a choice to get off the bike and slid down the road on my right side the bike luckily missed me an slid down the road to my left.

I came to a stop painfully and thought I have really done it now!!! 

I tried to breath but couldn't I was really scared 

The thought came to me -  You have damaged yourself so much that you are just going to sit here and suffocate to death now!!!

I tried to inspire again this time success....

Thank you God!

I managed to tell a driver who had stopped to dial 999 and tell the services That I have had a double lung transplant.Then gave her my phone and asked her to phone Liz my Wife and tell her where I was, only two mile from home at the time.The ambulance arrived within a very short time and then so did Liz and my son.I was in agony with 8 broken ribs and a bone exposed where I had lost all the skin from my left knee.

I spent a month in Hospital on oxygen and loads of pain killers and have been recovering every since even now my knee has not fully healed but I am looking forward and getting better all the time. Another year of my life passed with my birthday in August and I was able to get a holiday to Hastings to visit Liz's family before that, after getting discharged from wound care appointments at the plastic surgery outpatients

what happened to my Bike? It got sold to the repair firm who made me an offer that I could not turn down £1000 less than I paid for it two years earlier.The money is sitting in my bank now waiting till I can get a new bike.My son has passed his bike test now and is able to get a bigger bike so we hope to be on new machines for the spring! 

Five years ago I was sitting in Harefield Hospital waiting to hear if I would receive a new set of Lungs!

I am feeling so grateful to the 45yr old man who had signed to Donor register and allowed my dream of a second chance at life to come true.

It has been a great five yrs but not all plain sailing,I am so grateful to my Donor and to my family Alex Ellie and my Lovely wife Liz for supporting me through all the ups & downs 

At 5am I went into the operation and received a gift I can never repay I came out of theatre at about 11.30am and my life started again:) It is a sobering thought that statistics for survival rates mean that I am one of the 50% that are alive after 5 years 

I am so grateful !!!

This month I will celebrate my Wedding Anniversary. Six years since Liz and myself have been married and 28 yrs together 

My daughter turns 21 at the end of the month while studying English degree at Manchester

My son has started two jobs and is presently in college and working part time for ALDI

me?

 Thanks to my donor and the Will of God

I am able to have a life I never dreamed would happen

I an truly blessed 

I would like to wish all my Tx friends a happy and healthy time and what every the next years bring lets us all celebrate this great life we have to live

Please become a organ donor

https://www.organdonation.nhs.uk/reg…/register-your-details/

Goodbye Emily :(

I am writing a post say goodbye to 2014 

To say goodbye to a inspirational woman in this final part of this year.

and share good news about another of my Tx friends

Lots of change has also happened in our family.  

 We have spent a enjoyable time over Christmas as a family as my daughter Ellie has been back at home from university for the holiday. It was quite a change for all of us when she left to move to Manchester in September, It took a while for us all to adjust to Ellie not being around.
I got a cold not long afterwards which I thought might lead to a hospital admission, and for a couple of days it was touch and go. I was lucky But it bought home to me how quickly things can take a downturn and it left me feeling vulnerable.

My car went in for its MOT and is due to be returned at the end of january I shall be getting the same car again I hope and I have made a pact with myself to use the new car to do some traveling around in 2015 as this is my fourth year transplanted and I want to visit places from my past while I am able. 

 Lets face it no one knows what the future holds but as a lung transplant recipient this is particularly true. On my next anniversary in October I will be one of the 50%  who survive 5 years. 

Half the people who have a double lung transplant don't last over five years!

I am so blessed to be living this life and still well despite my diagnosis of chronic rejection that i dont want to waste any more time not doing the things I promised myself.           

This was brought home to me when I heard the very sad news that a inspirational Tx friend has lost her battle with serious complications following a second lung transplant

Emily Thackery

I have included 15 facts about Emily that she posted in 2011 as part of a 30 day photo challenge with this photo.

1. I am a natural blonde, in both hair colour and brain.

2. I have a strong belief in the power of positive thinking; even when you can't change your situation, you can change your perspective.

3. I have 2 sisters, who I love very much and who are currently too far away for my liking.

4. Family and friends are the most important things to me.

5. I've been "officially" written off twice. And I'm still here. Take that, Grim Reaper.

6. My favourite colour is still pink, although now I'm older and more mature (HA) it's a little more discrete.

7. I have a very vivid imagination. This can be a good thing, but it can definitely be a bad thing as well.

8. I love reading and attribute that to my parents and their house, which is full to the brim with books.

9. I adore pretty shoes but cannot walk in heels to save my life.

10. I collect little quotes and sayings which put things far more succinctly than I ever could.

11. I love learning and believe I can learn from everyone I meet. At some point in the future, I'd quite like to take up study of some sort again.

12. I used to be quite the little grunger - black makeup, baggy jeans, heavy metal music, the works.

13. In many ways I feel quite mature for my age, but in many others I feel hugely out of my depth and think I belong back at school with some of the kids I teach.

14. I've always been a poser; I was in a dettol advert as a toddler and modelled knitting patterns for a magazine.

15. I'm quite petite, and I rather like being small. Until my year 7 pupils tower above me that is.

I meet Emily in January 2012 when I attended the speakers project run by LLTGL a charity Emily started with her friend and won award for in 2011

She was a great support to me and many many others and will be missed by so many people.
I last saw Emily in clinic before she was admitted to Harefield with a serious deterioration in her lung function that turned out to be something that couldn't be fixed and although she got another transplant it was not successful

Emily had got her transplant in January 2007 and had many great years of extra life and had a daughter Sophia.

She passed peacefully on 28 December.2014  

You can read more about Emily at her blog PinkandSmiley and please visit and support LLTGL

Finally Emily's sister Abigal set up a page for donating to Harefield Hospital who looked after Emily at 

Just Giving - Sending Love to Emily

I will miss you Emily and you will be missed by so many in the transplant community

Rest in Gods embrace xxx

❤
Emily's favourite quotes on her facebook 

 seems very relevant at the moment

"I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn't arrived yet. I have just one day, today, and I'm going to be happy in it." - Groucho Marx

"Attack life, it's going to kill you anyway."

The other piece of news I have to share is good I also received news from another friend on facebook and someone I follow on this blog Claire who writes  My World has been lucky enough to receive her best christmas present ever of a new Kidney

She posted 

As most of your know. Operation went well and kidney is working. Just had a scan and everything is looking great! Still very sleepy and in pain but apart from im doing well.

I wish her all the best with her new life and hope her recovery will be quick and uneventful

As I look forward to the new year what do i want? 

All the best things for All my friends may their wishes all come true 

Continued Good Health for my transplant Friends and myself

and time to live my life to the fullest 

to all my readers and friends

Have a very happy 2015  

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

First Clinic of 2013 - Happy Easter

Went for my first transplant clinic visit this year on 11th March.
This was going to be a quick check up and a early return home I thought, but fate was conspiring against me and the day took longer that I had anticipated!
The day started poorly with the bloods, my veins were giving the clinic staff some problems and it took a few attempts to get sufficient blood out of me to test,so I left the room with a few holes more than I thought I would!
On a  more positive note my blood pressure was good as was my Oxygen saturation, but my weight had gone up slightly despite my efforts.I did have a chance to pass the time with a couple of the people in clinic while waiting and was glad to here about one man who was celebrating 10 years since his Tx he was telling me about how things had changed since he had been coming to Harefield with the new clinic building, the Anzac centre, being the centre for transplant outpatients now.One of the great things I find about going to Tx clinic is the chance to meet and talk with others who have gone though the transplant experience.
I had my X-ray done and  was booked to see the kidney consultant in the afternoon I just had to complete the dreaded Lung function test. I had very little worries about this as I had got back to swimming regularly and had just completed 60 lengths of the pool on the Sunday before clinic.But when I went to blow it was apparent that my FEV 1 (The amount of air expired in 1 second) had dropped quite a lot from my last reading before Christmas, I tried not worry too much but was disappointed as this could be a indicator of infection or a early sign of rejection.

When I got to see the kidney consultant I was glad to hear that he was happy with my progress and told me that my kidney function was good at about 66% and that I shouldn't worry about problems with my kidneys he said he was happy to see me in another years time, good result!
The Transplant doctor was less happy she was concerned about the drop in Lung function as there were no infection markers in my blood to indicate why.She also told me that my Tacrolimus level (Anti rejection drug) was high and would require a dose reduction, this was good as these tablets upset my body a bit and lead to problems with the kidney, but I was a bit worried why the levels were up after so long stable.I was told to get a repeat blood test in a week for levels at the GP, and come back to clinic in a month.
On the way out I sorted out some 0.5 mg tablets for the reduction in the dose levels through the pharmacy and got on the road home. Little did I know that the day had a little more in store for me before I would pull up outside my house that evening.

The journey home was going well and I was quite tried so I wasn't hanging around I was nearly at High Wycombe when the car started to loose power then loose speed I moved from the fast lane across to the first lane and found that I couldn't get anymore than 40mph out of the car!! I was just approaching a junction so I decided to exit the motorway and just as I pulled off I saw a large Tesco store and managed to pull in
and park. I rang the RAC to attend and luckily they turned out quite quickly, the guy was great, the car was running so he decided to take it for a drive to see what the problem was.while I was waiting I went for a Costa in the Tesco  as I was parked outside.When he returned he said the car was okay and that the diagnostic computer had shown up no faults. He suggested that a sensor in the car engine had put the car into" Limp Home Mode" and had most likely reset its self while I had been parked, the cause was uncertain but he felt that it was better again and shouldn't give me anymore problems.

I took him at his word and set off again and had nearly go to my turn off when it happened again!!! I decided that this time I would just head for home and keep going but my luck was not good and as I left the motorway I found that my route home was blocked, the road was closed by the police for a accident !!! so right at the end of my reason I returned to the motorway and went to the next turn off at 40 mph :( Drivers on the motorway were not impressed, after another extra 15 miles travelling at similar speed  blocking all the traffic on the way I made it home.
When I turned on the engine again it ran fine but as I was pulling out my hair about the break down on the way home.So I called out the RAC who took it to the garage where it has stayed for the last two weeks. It had some work doing that was left form when it was serviced, but try as they might they were unable to find the fault so it has now been returned to me with the hope that it will not go wrong again!!

Finally home and with my car returned I have felt a bit under the weather and a bit breathless at times but I have continued to go swimming to maintain my lung function my  Tacrolimus level (Anti rejection drug) results  came back still at the same level as it was at clinic so I have had another does reduction to 2 mg daily and I will get a blood taken after Easter with the hope that thing will have settled down by then.Then I will be returning in mid April to clinic

To all you waiting for organs I hope you get the  new life you wish for:) 

To those who have had a transplant wish you all the best of health! 

To those of you who have yet to sign up to the Donor register click HERE

Hope everyone has a Great Easter

Enjoy your  Easter eggs

    

2013 Here I Come

The new year has started.

I thought I would do a review of the year that just passed,and some of the plans for the new one

It has been a interesting one, and for some people life changing, but for me quite sad.The loss of my mother mid summer has been a shock to me and has reminded me how fragile life is.

I am finally on my own now, both of my parents have gone, just me and my younger brother.

It has been a time of change that has seen my children move from secondary education on to college, my daughter studying A levels and my son learning furniture making.This change will continue in 2013 with my daughter moving on to University and leaving home and I feel that life has been on hold for the last two years and that this year is the year for me to get on with living again.

As you know if you have been reading my blog for a while I have been able to start swimming again and getting fit and trying to loose weight.I hope that I will continue to loose more and will be able to do more fitness activities to help me.
I also hope to do some travelling during 2013 and hope to get a motorbike.If the weather is good I will be getting out and about on my own more.  I have found the start to this year has not gone as well as I hoped I had a minor crash in the car when leaving a parking space outside the doctors and ended up damaging the wing and bumper on my car this has annoyed me as I had to make a claim on my insurance to get it repaired which will impact on bike insurance in the future but it can't be helped :(  The car still needs some work doing so in the near future I will have to return it to the garage to get this done but for the moment I am just happy to have it back after a couple of weeks of courtesy cars, an experience I am not willing to repeat just yet.
The main reason I have been remiss about updating my blog is I have been having some problems with my vision for about a month.I have been having great problems with blurring and lack of focus with my vision deteriorating as the day progresses. I attended the doctors as I was having problems with seeing the photos on the screen at camera club and she referred me to the local eye hospital. I was very worried that I may have developed some condition due to the medication I have been taking.I was reassured when I attended as the problem I suspected - glaucoma was checked and found to be unlikely.I had to wait to attend again with Liz so she could drive so that they could conduct a full eye exam using atropine drops to enable them to see the retina and the back of my eye this all proved that nothing untoward was evident.But it seems that my suspicions were correct, I have developed dry eyes due to my use of Bi pad overnight  and long term steroids I have been given eye drops I will need to use from now on. Although they are better than they were I still have problems and need to rest my eyes much more often now and add another medication to my daily regime!
One of the good things that has happened since the new year started is I have bought myself an new tablet a Nexus 7 from Asus :) It has been fun and has encouraged me to learn more about Android operating system with the thought about learning more about creating apps in the future.
To this end you may have noticed that I now have a Android app for this blog so people can read my blog on their android phone or tablet you can download it or use the QR code on the blog.I  hope that people find this useful.
I have also removed the message board widget that was on the blog as it had collected a lot of spam messages.I am hoping to have a revamp of the blog in the near future and have some ideas about making some changes.I would love to know what people think about this and what they would like to see in the future. Personally I would like to make more information about transplantation available. A more comprehensive list of some of the blogs people are writing about transplantation and more places to seek help and advice across the internet. 
The other thing I have bought myself is a new camera it is smaller than my DSLR and made by Olympus and has image stabilization in the camera body to help with the shaking that I suffer from with my meds. If you are interested it is OMD EM5 Olympus and it came with a extra 45mm portrait lens. As it is splashproof I will be able to use it when weather is poor so keep an eyes out for new pictures from it in the near future. 

Finally I thought I would include some pictures from the most recent competition we had a  the camera club the subject was quite hard "The letter Y " so I included the following two pictures

Yellow Sky over Didcot

Yellow Aqualegia

  The first picture taken with a small compact on the way back from Harefield scored 15/20. The yellow Aqualegia taken with my Canon DSLR did a more respectable 17/20. I am hoping that my new camera will be scoring well in competition in the next few months watch this space!
I am now able to go swimming again and am going to be attending a fund raiser for my good friend Justine Laymond in february as she will be attending the World Transplant games in South Africa to represent UK again if you wish to help her you can find out more  here - Justine Laymond just giving
I hope for my next blog I will have some pictures of the event to share:) till next time stay well and if you still haven't signed the donor register you can here

Good News and Bad?

As promised 

I thought I would update people about how the first competition went at the camera club

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

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

We have been quit busy as the kids have been off college for half term this week. 

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

Both of the children have been occupied over the half term 

Alex went off to the Excel center with his mates to MCM London Comic Con and had a great time. 

While Ellie who reached her 18th birthday at the end of  October went off to Berlin! 

She organised the trip for the Student Union and did a great job:) The only hiccup was a delay with her passport application. Due to new rules being applied by the government  she was required to attend a interview which nearly stopped her going as we weren't sure she would get her passport in time!

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

Finally I have some good news to share regarding the camera club

 we have a new president of the camera club it is 

 Brain Tufano BSC

Trainspotting, Shallow Grave, Billy Elliot and  Quadrophenia

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

Life of Brian

Brian Tufano IMDb 

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

Also this week we had a excellent presentation  by one of the top Audio Visual photographer 

Ian Bateman LLB,FRPS,MPAGB 

who showed this slideshow presentation which I have posted here

Three Year Wedding Anniversary

Time is moving on quickly of late with lots happening in a the space of a short time. Today was my third wedding anniversary, remembering the day I married is hard. 

I had to use my oxygen before I was able to get out of my car and walk the short distance in to the Oxford registry office from the disabled spot outside. Our simple ceremony with just our our two witnesses was over quickly and there was no party.I needed to use my Oxygen all the way home afterwards.

It marked a turning point in my life. 

I had just gone on the list and had received two calls within one month of being listed  

First call   Second call 

I had realized that I might not survive the process of transplant or the wait and wanted to put my affairs in order and on those first couple of calls I was very worried about outstanding issues with my pension, tenancy and provision for Liz and my children.

Three years on and life is totally different 

I am so much better and looking forward with hope, thanks to the donor who has given me this chance to live a new life and honor his memory.I am now able to do things with my wife and children and support them like a husband should.
Liz and I met 25 years ago and always said that we would get married, but just didn't get round to it.Life moved on, we had kids and still ,despite me going down on bended knee years ago in the middle of the staff social club at my old hospital,it hadn't happened.
I was staring death in the face when we finally said "I Do" and it all became clear, Love , friendship and happy experiences are the things that matter.
I really hope that I will be able to give my beautiful wife many more years of all of these things

I love you so much Liz and I'm so glad that you have been there with me though all these 25 years. 

You are my rock and I hope that the years yet to come will be even happier

Since my transplant lots has changed and just last week we finally placed my mums ashes in her final resting place in the local church garden of remembrance in St Mary the Virgin, Kidlington. It overlooks the open countryside and I finally felt a sense of peace for her since her passing. I draw comfort in the fact that there will be a space for my ashes with my mums should I wish it when the time comes.

      

I was forced to think again about my mortality as transplant is extra time not a total cure.Because of the medication I take and risks with immusupression my time will shorter that it may have been.

I hope that I have many more years ahead, but I have resolved that the next few years I will going forward firing on all cylinders and making the most of the health I have got now.

I will be looking at holidays for next year and some travelling that I have put of for a while.I missed out on Glastonbury tickets this year:( But I am looking into more transport and Christmas will be a big one this year as Liz will be off. New year I am going to try to  have a proper night out if I can, Liz will be working on 1st.But before that my daughter will be turning 18 (this month) and Liz has a birthday in November so I will be looking forward to spoiling them both.

finally I have entered my first competition at the camera club this month and so I thought I would include the two pictures that I have entered

Hang On A Minute Lads, I've Got A Great Idea....

Red Arrows over Hastings seafront 

They were both taken in Hastings in the summer fingers crossed they do well, I will tell you how they do in my next post.    

Two Year Lung Transplant Anniversary!!!

Two Year Ago a Stranger Saved My Life

I am humbled and very grateful that 24 months ago a stranger gave me a precious gift. 

Now that gift lives within me and has given me a new life. 

5am on Monday 4 October 2010 I was given a new set of lungs from a 45yr old man a heart beating donor and  my life changed forever.

I remember the day vividly, the long day waiting to see if it was a yes or no, the tearful goodbye to my family outside the operating theater, but it also feels like a lifetime ago at the same time - in a sense it is!

I was dying, my old life was coming to a end and I wasn't sure if I would see Christmas that year. My lungs were down to the volume of a coke can and oxygen was my constant companion. If you want to read how bad things had got have a look at Waiting One Year On

How are things now?

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

Walk in the countryside

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

Swimming  

I am able to swim again and am doing quite well. 

After 7 weeks since I started swimming again after nearly ten years, I have improved from not being able to  swim a length of the 25m pool without stopping because I was out of breath to my present level.

I am now able to swim three miles each week. 

I do at least a mile each session and it now takes me about a hour and half to do 64 lengths. I am able to swim the whole mile without stopping now. I was told by the one of the lifeguard I am swimming further weekly than any of their lifeguards do.

I have gained so much confidence from doing this and feel much fitter now.

This is something I had found this hard since I found out after a MRI, that a previous back injury has deteriorated since my transplant and is now leading to a bit of sciatic discomfort upon walking and running is a non starter

This last week I managed to do 70 lengths but as long as I manage a mile each time I am happy I am only able to do breast stroke at present but I am aiming to improve my use of the crawl and increase the distance I can swim using it, then maybe I will be able to do more lengths as I can swim faster using the crawl.  

Fishing

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

Glastonbury Tor

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

I would still like to go to Glastonbury town and walk up the tor and will hopefully do this soon. 

Motorbike

those of you who have read the blog for a while will know that my mother recently passed away suddenly in June at the age of 80 yrs thanks to my donor i was able to celebrate her birthday with her and the family but sadly she was unable to celebrate my birthday with me in August. 

But her legacy has allowed me to consider a personal goal that I set myself before my transplant to ride a motorbike again before I die. I hope that I will be able to realize this goal in the near future maybe even go to the TT on the Isle of man.

Day to Day 

Things are good I recently went to Harefield Hospital  for a overnight stay to get my abdominal CT scan done. This was to check the reason for intermittent swelling in my right leg. 

They put me on a drip to protect my kidneys from the contrast dye they use in the scan.

Made a few holes in my arms and found nothing to indicate why my leg has been swelling.

The positive is they also found nothing untoward that would cause concern so I was pleased about that.

I have continued to lose weight and have been using the pedometer to encourage me to walk more. 

I will now be going onto monthly meetings for the next nine months at my weight loss group and will be meeting up with the group on Friday to arrange some meetings for weekly support.

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

St Mary the Virgin in Kidlington

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

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

Model of telescope in visitors center at RAL

I have also done a few night pictures and am hoping to learn more about my most recent purchase, a new 430 Canon Flash gun.

With the new committee in place and the new website up and running Wallingford photographic Club 

It all feels very positive, there are still some of my pictures on the site if you look in the competition galleries. I hope that I will be able to have my own gallery in the near future in the members area watch this space....    

  

Hope you have enjoyed reading this blog and if you haven't signed the donor register yet you can by clicking 

HERE 

Help someone else have new life after you are gone  

But please let your loved ones know your wishes so they will know what you wanted to happen :)