Eight Years Extra Life Living With New Lungs Thanks To my Donor

Eight years have passed since my double lung transplant and I find it hard to believe that I have been so blessed 

When I was given my transplant the survival rate was 50% at 5 years it meant that half the people receiving a lung transplant would be dead within 5 years thank God I was not in that statistic but many people who I followed on this journey are no longer with me now. They are in my thoughts today and I am grateful for the support they gave me along the way.

It has not been plain sailing and my body is suffering from the medications I have to take my kidneys are suffering and on a few occasions my kidney function has declined enough for the Drs to be concerned
This lead me to having to go on insulin to control my Diabetes also a side effect from transplant.I has taken me a while to get used to this but now I am more relaxed about the whole process.one thing In hadn't thought about was the restrictions and regulations regarding driving I had to return my driving licence and was given a five year one and when driving I need to check my blood sugar levels every 2 hours

On a  more positive note thanks to my transplant I have been able to see my children grow into strong independent adults.
This year I am proud to say my daughter finished her studies at university and achieved a first class honours degree in English 
My son passed his Full bike test and is a confident mature motorcyclist now I was able to ride with him as he progressed from his first bike thanks to my transplant.
I will celebrate 9 years married to my wife later on this month we have been together 31 years but I will always remember that day we married with me sitting in the car using Oxygen so i was able to walk the few steps into the registrar office to say our vows.

Time has been kind me but unfortunately not all my friends this year In was intending to go traveling to visit people I know.
One of those was a very dear friend of 30 yrs who I had only recently got back in contact with after losing contact for many years But before I could visit her again I got the sad news that she had suffered a heart attack and died I attended her funeral which was held in Oxford and although I don't normally attend funerals it was a opportunity to connect with her children and offer what support I could and celebrate her life, I was glad I did but it reminded me how fragile life is and how quickly things can change.

Therefore I would like to say to all of you reading this tell those close to you you love them! and don't let opportunity pass by you dont know when if ever it will happen again.

I send out all my best wishes to all those struggling with health issues all those waiting for a call for a new life and all my friends who continue to support me on my journey

 

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 😊 😊 😊

                                                    

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/

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 :)

Onwards & Upwards To The New Season

I have been continuing with my healthy living and lifestyle and my swimming has been getting better all the time I am now doing 50 lengths per session and am now aiming at improving my stamina.
On my last swim I was able to swim 30 lengths without stopping and am hoping I will be able to get better with time. I am still not swimming the crawl much, the odd length or two during the course of a couple of hours but this is something for the future when I get more strength.I seem to be stuck with 50ish lengths at the moment as sessions last about 2 hours and it is hard to do more in the time. But as I have been told that a mile is approx 65 lengths I hope I will be able to get to this distance soon as my speed increases.

I am still doing well with my diet and it is apparent now that due to my weight loss I will be adding a hole in my belt as I am finding it hard to keep my jeans up now and I'm in danger of losing my modesty if I don't tighten my belt up soon.
The healthy eating (low fat ,low calorie and high fibre) combined with the use of a pedometer has allowed me to up my daily walking and monitor by how much it is increasing. I have yet to to embark on a gym regime at present because an old spinal injury that I found out had got worse again after a recent MRI is playing up. I am hoping that the swimming will help it improve it and then I shall  start to use a static bike and some weights to train with rather than the treadmill.

There is one outstanding issue that I an hoping will get sorted this month that is the persistent intermittent swelling of my right lower leg.This was a slight problem since before the transplant but has got worse since. My Doctor at Harefield feels this would benefit from a abdominal CT scan to see if there is any reason for it happening,therefore I will be going into hospital for a overnight stay to get this done at the end of September.  I will need some hydration and medication overnight before the scan to protect my Kidneys as they will be using contrast dye for the scan and this may affect my kidney function.Hopefully this will provide more info as to the cause and possible treatment for this annoying issue.

Finally it is next week when the new season of my my Camera Club starts on 20th September, and I have been getting some practice in with a photo-walk around the  Rutherford Appleton Laboratory 

STFC Rutherford Appleton laboratory

This is the second year that it has been run and it was a chance to walk around the facilities, learn about the work they do there and take photos there is a chance to enter the photos into a competition and have them published. If you are interested you can see last years winning entries at this page                                    STFC Photowalk competition

I will try to post some pictures that I took there on my next blog post

18 Months Of New Life With New Lungs

I have now been transplanted 18 months and time has rushed by!!

It doesn't seem that long ago that I was kissing my wife and children goodbye at the operating theatre doors not knowing if I would be saying goodbye for the last time.... and then waking up to a new life.

This last week I have been spending time with my children as they are on half term If it wasn't for my donor I would never have made it to this point. I have been able to see them through to the finish of their education at school and I am able to watch them move on to further education,  my daughter is now half way through her A levels and looking forward to university. While my son is has a offer to start a course in furniture making at the local further education college in September and is really looking forward to it.

I have also had the pleasure this week  of celebrating 25 years since my wife and I first met.

She was a general nurse student on her placement in my hospital, I was a third year student looking towards my final exams. It was her last night at the hospital before returning to Eastbourne where she was training when fate brought us together. We spent that evening  in the hospital social club getting to know each other, it was love at first sight.

 We have been seeing each other ever since and  I love her more with each day we are together

We married while I was waiting for my lung transplant and will celebrate our third anniversary in October, just after my second lung transplant anniversary       

I cant say that it has all been a easy ride I had some problems early on and then got shingles last year and it has taken a while for me to feel myself again and get my confidence back after a long period of chronic illness. I had a long list of things I would do,some of which I have done some are yet to come. 

 The most important have been the little things like; 

• Walking up stairs without worrying about breathlessness.

• Not needing inhalers for my asthma that I suffered from for most of my life.

• Being able to go to events and activities with my children,without them being embarrassed about my oxygen tanks and breathlessness,

• Cooking food on a barbecue or even being around a barbecue without choking and coughing.

• Having confidence in my abilities to look after myself again 

• Being able to have a bath without help

•  last but not least, being alive and not scared that I will die 

All these things are the result of a courageous man who thought about others and his love ones who consented to his wishes..A 45 year old man who I will always be eternally grateful to, signed the donor register and decided that that someone should  live after his death.

I am one of those people!!

Other good things that have happened this last week is that I entered the annual portfolio competition with the following pictures 

Fun at the Fair

It was judged the best digital entry and won first place!!! 

I was so happy this is the second time in four seasons that I have won first place in the digital portfolio:) 

First time I won was my first year in the camera club I have included the pictures that won "my village" in 16.4 2009 before my transplant 

The girl in yellow dancing around the maypole on the right of the picture is my daughter when she was much younger at a school fete at her primary school

I would also urge you to check out the "Transplant People Daily" available by scrolling to bottom of these blog posts now, where you will find an embedded widget.

If you like it please feel free to subscribe:)

Finally I would like you to consider Organ donation if you have not already.help someone like myself or one of the great people I follow on this blog to live a happier and more productive life

You can click the heart here and register now in the UK

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