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 :)

Schools out for the Summer

The school holiday season is now under way my daughter and son are now at home all day!
A few things have happened since I last posted a blog entry so I thought I would update you on what has been happening.

Firstly I have great news on Kirstie 2nd chance @ life?

who's blog I now follow on this site.
She has been making great progress since her transplant and has been well enough to move to a open ward and has even managed to get out into the sunshine in the grounds of the hospital.:)
Her family are thrilled by the progress she is making. I would like to add my best wishes to Kirstie, her husband and all her family for a speedy and uneventful recovery.

A recovery that would not be possible without the brave donor and their family who allowed this to happen  saving  kirstie's life!! Please if you haven't signed the donor register click on the flashing heart at the top of the left column of this blog and you could save someone's life when you die you may regret it if you don't :-(
 
What else has happen then I hear you ask?

I have been out with my camera to a couple of events in the local area. Firstly there was a model making event at the local school. My son and I attended ,we have been regularly and enjoy seeing all the models. I find it facinating to see the hard work and devotion that goes into some of the exhibits.I have posted a few pictures of the event for you to see.

Washday

Solider

Honda in a Hedge

Military Bike

 Although I found it hard with the side effects of my medicines to take steady pictures it was so much better than last year and the presence of smoke from the model steam engines was only a minor discomfort

The other event I was able to attend was a classic car meeting at a local hotel where two of the members were having a 30th anniversary celebration. I was also able to get some pictures of a piper who came for the celebration and played some lovely classic songs on the Bagpipes

This was a bonus as there were some lovely American and British cars on show

Studebaker

Morris Minor

Finally I have been active on the new Google trial of it new social media offering Google Plus (G+) and I am finding it a really good experiences. As you may see on the blog I have added a widget for my stream on the right hand column and a G+ icon a bit lower down please feel free to click on the icon to visit me

 If you want to get invited please send  me a email from a Gmail account contact me on toolbar under blog and I will send you an invite.

If you would be kind enough to add me that would be great, as I hope that I can use G+ to promote organ donation and will be sharing with all of my new friend more of my photography in the future.

This is a great way to share. I would urge you join soon:-)

Transplant Week Ends - New lives start

Transplant week is over for another year, but that doesn't mean that organ donation stops being needed.
just in case you didn't get to sign up I have included a link here or you can Text SAVE to 84118 

As part of Transplant week Victoria Tremlett who writes the blog "Past the Point of No Return" which you can find on my blog list in the right hand column of this blog prepared a impassioned plea about her time waiting for new lungs

She is still waiting and so are many more people...

I have good news about the end of transplant week while I was tweeting about organ donation last night I recieved a meesage on facebook to say that Kirstie Tancock, who I talked about in my last post, had recieved a call for possible lungs at Harefields Hospital. 

Thoughout the night her family waited for tests to be performed on her blood to check her antibody status, then the agonising wait to see if the lungs were good match and if there forfilled the strict criteria that must be met before they could be transplanted . 

Her husband Stu at 09.10 today wrote; 

 "Well it's been a long night and waiting for the result of each test seems like a nightmare but it has been all worth while when they say it's all going ahead, I know it's such great news to everyone on here and I'm still in shock I would just like to thank the donor and the family for allowing my beautiful wife to have this chance as i'm sure they are going through hell"

At  11.55 today Her sister posted news that her old lungs had been removed

At 14.12 her husband posted that the surgeon had said "it has all gone well" 

At 21.45 Her sister has posted that she is breathing on her own but still sedated 

At 23.08 Kirstie's dad posted this entry on her facebook group  

 Today has been the best day of my life,well thats not quite true getting married was if i didnt say that i would get beat up from the wife. but after hearing kirstie has a 2nd chance of life that means a new pair of lungs how great is that fantasticcccccccccccc. i popped in to see her for a few mins today and had a tear in my eye not of saddness but of joy.

What a great end to transplant week and proof of the good that organ donation can do for a family like kirstie's but let us also remember the donors family that allowed this donation to happen I have such respect for them.

As you may know form a prevoius post about my friend Bree Cordick 

she lost her life because of rare complications after her double lung transplant after having a great new life after transplant and she wrote the blog "The Blog Blog I would strongly advise you to read it. 

I have hosted  "The Blog Blog" on my blog roll for a long while,since before my transplant.She was a great advocate for organ donation and I would like to think that she would want to have Kirstie's blog replace it  and I will maintain a link to it on the links part of my blog to remember my friend:(  

I wish Kirstie all the best and hope she will have a  swift and uneventful recovery and hope that you will follow her progress with interest as she takes the first steps on her 2nd chance @ life

More good news 

 You will also see that another of the blogs I follow is posting good news.

  Jodie  who writes jodiecf.blog.co.uk/

  has had her Lung and Heart transplant on 14th June 2011 and as part of the procedure donated her heart to another recipient and received a new set of Lungs and a new heart.

She had some problems with bleeding and had to undergo more surgery to deal with these problem but has recovered and has just been allowed to return home 27 days after her operation

I would urge you to read her brother 's and father's account of how things happened and if you read back in her blog you will see how hard it has been for her waiting.

I am so glad that she has had her call and can continue to be a mother to her lovely daughter and continue with  her plans to marry John her boyfriend. Hope we will hear more about this soon!!

 I will leave the final words to her brother Kris;

I feel blessed to have witnessed a miracle happen at Papworth. My sister has received the gift of life and in doing so gave the gift of life. Jodie donated her heart during her operation.

Recovery confirmed

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

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

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

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

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

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

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

Visit to Clinic results in one month off !

I attended the transplant clinic and was given a clean bill of health by the doctor, he was happy with my lung function and X ray and stopped one of the meds that I had been on since the transplant, also cut the water tablet that I had been taking since my collapse.Then he said that he was happy for me to wait one month till the next visit!
This will be the longest that I have gone between clinic appointments since my transplant.It was great to leave knowing that I would have some time to make plans and make the most of my new lungs between visits.I drove home with a fresh sense of freedom but also a slight worry about how things would go.

I got back home and my worries proved groundless and things have been going well I have started to cook again and was able to cook roast dinner for the family on Sunday and clean up afterwards which to some may not be much, but before I was transplanted I was unable to deal with the cooking fumes without breathlessness, I am really enjoying helping out again.

I put some pictures in the latest competition in my camera club and scored 17/20 for one even though I entered  at the last minute with little preparation I was happy but will try to enter some prints in the next competition as well.

I also took advantage of a nice day and went to Oxford to the local Jessopes  camera shop to look at the latest 60D Canon.It was so good to be able to walk to the shop with my son that I never was able to get to pre-transplant. I was impressed by this new camera but another model is being released soon that I want to see before I make a decision about which to buy.

I was also able to get to Oxford with my wife and daughter and walked around for the afternoon getting to many stores I had not visited for ages and not having to worry about stairs and if there is a lift available.we finished the day by going to Blackwells bookshop and I took my daughter to the basement room which is vast so that she could look at law books she was amazed and surprised about the amount of books there.
So many time over the last couple of weeks I have done things I couldn't do before and I find myself  doing things that would have left me a heaving wreck before. I am so grateful to my donor and I hope I can honour the gift of life that he gave me!
Finally I got confrontation of my status as a healthy person when the oxygen company came to collect the oxygen machine and my portable cylinders. They have been part of my life for so long  that in some sense I was sorry to see them go! They had been my means to carry on with life but also like a ball and chain that I was forced to carry  they tied me to a status as a disabled person when I was forced to use them.
Now I get breathless, but I know that I will be able to catch my breath without a tube up my nose and have joy at the experience of breathless bought on by exertion without the panic that I was cursed by before my transplant.

Please remember those who are still waiting

Sign the register if you haven't done already. The donor I received my gift from was only a bit younger than me ,we never know what the future holds but you can leave a legacy that lasts a lifetime.