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

Moving on towards Spring

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

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

My local pool where I am swimming a mile every session 

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

The venue

Justine 

There was singing and dancing

and even an impromptu band appeared

they had a nice bar 

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

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

Justine Laymond Just giving

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

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

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

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

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

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 Results At Tx Clinic

Despite my negative view about the cause of my pain in my last post it seems that the doctor was right about the cause. It was a case of muscular pain which can be worse after you have had shingles he informed me.
Therefore I have decided that I will restrict myself to just I mile (64 lengths) per session of swimming and a max of three times a week for the present. I aim to build up my stamina by adding more crawl in each session.This allows me to do my sessions in about 1.5 hours.

This last week I attended Harefield Hospital for a check up and was seen by Dr Carby. 

I had the usual blood tests,lung function, X-Ray and an additional ECG done. I am now over two years transplanted this was to check my heart was functioning well.

He was very happy to hear about my progress with the swimming and I asked him about holidays, his advise about long haul flying and destinations that I might need to avoid should I travel.He was very supportive and said as I was doing well he had no problems with most places.Food poisoning would be the biggest risk I might face due to my immunity being reduced. He advised me that good travel insurance that would fly me home quickly if things went wrong would be a must.In Europe most people had no problems and some don't bother with insurance. But my thoughts are for far distant lands, America, Japan and Australia so I will have to plan well.The staff at clinic provided me with advice about vaccination and provided a list of travel insurance firms that others had use in the past which was great :) 


How did I do?
My Blood pressure was normal which is good as it had been high.
My Weight had gone down by another 2 kg
My Blood tests showed normal levels and were stable.
My Tracrolimus levels were 5.0  ng/mL  an ideal range.
My ECG was normal
My Lung function was up (due to the swimming I'm sure)
My Xray was normal



I was given four months off clinic and am due to return in March:) The only thing that didn't go well was the weather which was lousy there and back raining constantly, the whole process left me worn out but happy!!

After the Storm

Talking about that we had another competition at the camera club this month. 

The subject was "Weather"

 I put a couple of pictures in as digital entries, but they failed to gain many marks due to the high level of some of the entries. The highest score was 14 for the  picture above taken from Glyne Gap looking toward Beachy Head Eastbourne . This was taken during the summer when we had our holiday in Sussex.

This is a picture that represents for me the end of a storm in my life that was my illness and then my transplant.

I am finally now feeling like life is settled again. 

I am looking forward to a great new year and what it may bring

Finally things have been sorted out with my mother's estate and my brother is in the process of sorting out her house to rent. The financial issues have completed and I will be moving into the new year with less money worries. It will be so hard to spend my first Christmas without her this year and we are both feeling the loss now that everything is over with.
I just know that she will be with us watching over us and our families this festive season and although financially things will be easier now we will still be missing her a lot and I will be attending church to light a candle in her memory over Christmas.

I will also  light a candle for my donor without whom this festive season would not have been possible for me or my family.  

Stuck, don't know what present to give this year  

Give the gift of life 

Sign up as a organ donor 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 :)

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

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

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

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

Kirstie

Kirstie & Stu her husband in blue LLTGL vests

The whole team who competed the ride

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

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

Kirstie's Big Breath Bike Ride

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

Seaside Memories and New Beginnings

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

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

Richard Burbedge  

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

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

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

Just shows how a transplant can transform lives 

Other good things have been happening... 

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

I went with my son and did it.

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

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

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

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

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

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

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

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

  Sign the donor register 

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

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

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

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

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

March on To Spring

Went to my clinic appointment this week and despite my cold leaving me gasping for breath , I have succeed, with my reduced immune system in overcoming it. My lung function has returned to a stable level and I am feeling more confident that I will not have any more problems now.
I saw Dr Carby who was happy with my progress I had lost a small amount of weight since my last visit and although my lung function was a bit reduced he was happy for me to leave Three months till the end of June until my next clinic visit!!
The only slight issue that arose was my kidney function once again was a concern.
I am back on the 26th for some advice from the dietitian, so he requested that I do another blood sample then to check my Creatinine levels then decide what must be done. He suggested that medication change might be on the cards, but I am hoping that things will have settled by then with any luck.
When I questioned him about the cold he said it could take up to six weeks to get over completely and I should carry on with the Ventolin till I was sure I was better.     
This was the first bad cold that I have had since having my transplant and I must admit it scared me,it brought back memories of what it felt like when I was breathless before transplant and having nebulisers of ventolin reminded me of my asthma attacks in the past.

The statistics that you are quoted before transplant are not encouraging 80% 1 year survival 50% 5 year survival and my consultant said something that stuck in my mind "If you get seven years from a lung transplant we would consider that a success." People think that a transplant is a cure, it is not you are swapping one condition for a new one one that needs constant vigilance, monitoring, medication and positive attitude to manage.Add a large dose of humour and faith in your God and your transplant hospital and you can help the stats in your favour. You can never beat the odds completely but I hope to have a good go!!!

I read a story this week about a woman who has become the longest surviving single lung transplant patient. She celebrates the 20th anniversary of what was the first ever operation of its kind. On May 18th, 1988, With only days to live, Vera Dwyer, Carrowcrory, Keash, had the history-making surgery in Harefield Hospital, London.
You can read the article here   
 Transplant can be such a tightrope to walk at times and some of my friends have slipped and fallen! This illness reminded me of this, how grateful I am to still be doing well.

Even though I was not feeling well I have enrolled in a gym. One of the trainers is a physiotherapist trained in cardiac rehab and I had my first meeting just before my Harefields appointment. I will start my attendance when my cold is completely gone.
The other thing that I have done is to get a new appointment with the Churchill to find out about my Bi Pap and if I still need to use it.That will be coming up in April and I am hopeful that I may stop using the mask each night if my CO2 levels are stable now.

While I was in clinic I was lucky to bump into Kerry Maletroit who was  looking good and still recovering well after her trip back to Jersey for a family reunion recently. She had a successful day at clinic and her lung function continues to improve.
One of my other friends was also in clinic, Dawn Bostock she was hoping for a bed to sort out some problems she had been having. She is now getting sorted out in Harefield, but due to the amout of people with  colds and bugs she had to wait for a while for a bed. I am sending out all my best wishes to her for a quick resolution of her problems and a swift return home :-)

Finally I had another competition at the camera club and although the picture didn't score well I thought I would include for your veiws it it is a local landmark and one my contributions to the "Industrial landscapes" competition,please let me know what you think of it. 

Sunset over Didcot B

  You can also see another of my winning pictures at the website for the club now that has been posted, it scored 20/20.

It is a typical Oxford picture looking out on Magdalen College bridge where the Oxford May Morning Celebrations happen. The view is taken from the Oxford University Botanic garden.
If you what to see the photo it is Here