Sam and Luke - A Love Worth Giving

I thought I would draw peoples attention to the following film promoting organ donation  

I was lucky to meet Luke in Oxford when he exhibited his paintings sadly I never met Sam.but had followed her blog while she waited for a transplant

you can read it Here

The End Of My Tether 

That day it lead to a opportunity to meet up with another friend from Scotland Victoria Glen who sadly is no longer with us she was also advocate for organ donation

Please take the time to watch the film and if you can share the link on social media so other understand the importance of Organ Donation 

You can watch the film by providing an Email and will be sent a link

To see the Trailer click 

   

A Love Worth Giving

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)

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

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!!!

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

Competition Results & A New NHS?

February is nearly over and next month I will be back to Harefield hospital again for a couple of visits.
I have now received my referral for the dietitian appointment ordered by my consultant, I am a bit worried about my weight and it will give me an opportunity to find out about things that might help me with weight loss and diets to avoid. I will also be back to clinic on the 12th March for a check up.I hope before then I will be able to find out about a follow up appointment to get a review of my Bi-pap that I am still using at night and finding a bit of a pain now!!
Since I have finished my pulmonary rehab, I have not been to the gym. Unfortunately the gym I was attending went into receivership just after I finished the course.I am presently looking into a recommended gym locally that I might join and have a meeting Monday next to find out more.
If that proves unsatisfactory there is a gym in Oxford that I have used in the past that offers cheap session rates, but will cost petrol to travel to.I am still intending to start swimming soon as a extra to help with the pains I get when walking.At present I have a bit of a cold so will wait till I am 100% as I don't want to undo the good work I have done so far.
The camera club competition went okay but my pictures didn't score very high but did relatively well

X wing fighter 16/20

X is where we cross 17/20

  I was happy that the judge thought the Red arrows picture showed good movement 

We had a session the week following the competition from Brian Tufano who showed us his tips for still life photography and showed us how lighting and hand cut reflectors could be used in product shots and advertising to enhance the object being photographed.I am always impressed by his talks I have attended three now and he is such a nice bloke and so interesting to listen to.If you dont know the name he is the cinematographer who was responsible for films like "Trainspotting", "Shallow grave", "Quadrophenia", "Billy Elliot",and most recently the biopic of the life of Ian Durry,"Sex and Drugs and Rock n Roll" He has even contributed extra photography to the film "Blade Runner". I learnt a great deal and I am encouaged to try some still life photos myself in the future. I have added some of my photos to the blog in the right hand column and will change these periodically

I have also added some more people who are waiting for transplants to my blog list. The first is a lovely lady called George 21yrs she says " Small happy cheeky person...I have Cystic Fibrosis and have been Waiting for a Double Lung Transplant as of 22nd December 2011" her blog is "My Journey- The Beginning Of The End!" The second person I am now following is the lovely Claire who is also 21yrs and is presently on the kidney transplant waiting list her blog is  "My world" Clare has also started a page on Facebook for others in similar position as herself "A Helping Hand"  she would love some more people to "like" this great page and share their experiences

They are both finding the process very hard and would love some support and encouragement

Finally I would like to include a request that you thinks about  the government's health reforms that are presently going though parliament. As a retired nurse and a transplant recipient I feel what is being proposed is  not good for the NHS and its staff (my wife) and patients (Me & You). 

Before I retired I had a experience of another scheme called PFI that was used to build the unit I worked in My experience of private firms in the NHS was very poor The unit was not built to accommodate the patients with the specialist equipment and conditions they required ,but built to a standard plan to maximise profit. The catering and cleaning supplied by the company was very poor and couldn't be changed and faults with the building were numerous.The price to fix faults was taken out of patient care funds and charged at well above market rates but was also fixed by contract so no one but the company with the contract could be used. The company was based in Scotland had contractors that were not local ,so many faults waited months to fix including those which compromised patients safety.

What the government is proposing is worse than PFI and it  intends to offer private firms access to the NHS  to run services I am suggesting this is a bad move for the NHS and all patients that rely on it if you feel the same as me please sign the following petition 

  
e-petition

“Drop the Health Bill”

Responsible department: Department of Health

“Calls on the Government to drop its Health and Social Care Bill.”

Let us all tell the government what we what 

NHS not Private Healthcare

New Year of 2012 Starts Busy

With January almost over I thought it was time for a new entry to my blog.
During the last month I had a meeting that I attended and I had a couple of visits to Harefield Hospital so it was quite busy.
The first visit to clinic was on the 9th and although I was okay I had some issues with my chest my lungs felt congested in the upper right side and this combined with the swelling of my legs was a cause for concern. I talked with the doctor and she suggested I use ventolin nebuliser a couple of times a day and a drug to thin any congestion on my lungs to help me clear them.
 I had been told is that after a lung transplant the body can't clear the natural secretions from the lungs and you need to cough to clear them regularly this is because the connections are severed by the operation.She also told me that I should bring forward my appointment with the consultant who has been monitoring my kidney function as some of the levels were elevated that indicated some problems with them,this was a bit of a concern to me. I was another appointment for clinic in a week.
All was not doom and gloom as I was able to catch up with a couple of people while I was in clinic I met up with Victoria Tremlett looking happy and healthy and Richard Burbedge who is one of two transplant people I know who are carrying the Olympic torch in July.

The following weekend on the 14th I was booked to attend with LLTGL for their speaker project, a session to help people who have had transplants use their experience and tell their story to encourage others to sign the organ donor register.
It was a great day and I would highly recommend it to anyone who wants to raise awareness about the issue of organ donation after having a experience of transplantation.It was quite emotional to here others stories and tell our own.It took my right back to the transplant again,but also gave me guidance as to how to bring out the emotional elements that people would be able to relate to and par down my story to the most essential elements we also practised our story within a set time to help when speaking in public.
I had a great day and met Emily Thackray who is a lung transplantee who suffers with Cystic Fibrosis and who set up the campaign with her friend and is now the chief executive of  Live Life then Give life. They are a great charity raising awareness of the issue of Organ Donation.
Two of the people I follow on the blog list are Ambassadors Victoria Tremlett and Kerry Thorpe.  
Another two of my blog list are also Advocates for the charity Victoria Glenn and Kirstie Tancock.
After my session I was luck enough to have a chance to meet with Kirstie Tancock who was also attending the afternoon session of the project and is looking great after her double lung transplant.
Please take a while to visit the charity's website and learn more if you fancy raising some cash for them have a valentines cake bake they  have some downloadable resources to help you just click on the link below

Great Valentine's Cake Bake 2012 

               The following week on the 16th I attended the clinic again and was seen by the consultant due to the medication I had been on my chest was less congested and my lung function test had shown some improvement from my last visit.the doctor was very pleased and suggested that I continue with the medication to help me clear my chest and use the ventolin if I needed it but told me that it would be important to maintain my other nebulisers as a preventative measure against any another bugs in my lungs then she told me that I could have two months off clinic as she was happy with my progress.

I will be back in February for my appointment with the kidney consultant and may get a heart echo done to check that the swelling in my legs was not caused by my heart, but I was very happy:-)  Since my appointment the swelling has now improved a lot and only happens in the evening after being on my feet all day, not unusual as the doctor reminded me.

Finally You may have noticed that I have added a chat gadget on the blog on the left column  if you would like to leave a message on it I would be very happy:-) If you have any questions about anything on the blog please feel free to use it and I will try to answer you.  It will allow me to have a two way conversation with some of my blog readers and hopefully learn more about what you want from the blog.

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

Doors Open For Some, Others Close

Sad and happy news to share ! isn't that always the way

First the sad news, as you may have seen if you have been following this blog for a while one of the people I follow on my blog list has been very unwell.
The woman I am talking about is Rachael Wakefield has been having a long fight to regain her health after having a lung transplant March 10th 2010. and on 26th October she was called to heaven. 

Her Blog was called "Anything But Ordinary " she was an extraordinary person who, although I never met her, inspired me while I was waiting for my transplant.She always had a positive attitude to her troubles and in a update in May 9th 2011 on another blog "fighting for life" from LLGL 

She said " I have suffered complications and unfortunately the lungs are now damaged and will not recover. I'm now back on oxygen and reliant on a lot of treatment to keep me alive but I do not regret having my transplant for a second. My time had run out the fact I'm still here now is thanks to the hard work of the transplant team, the bravery of one special family and the kindness of an amazing donor."

She was a very brave and inspirational woman.She did so much to raise awareness of organ donation and was responsible for many people signing the organ donor register. Please read her blog which I will move to my links list.

You can also see a BBC news report about her & please read a great tribute from  LLGL- Racheal Wakefield

Breath Easy Rachy <3

 I must talk about another person that I have now added to the blog roll this is a lady with Cystic Fibrosis who is starting on the road to a possible transplant in the future and is at present awaiting a assessment at Harefields Hospital in November and has just started bloging about her experiences

"Being Kimberly" please give her your support on what is a frightening time in her life and the biggest journey anyone can make 

Please remember that if you have not yet signed the register to become a organ donor please do Here

My other piece of great news is that my daughter turned 17 the other day.

She is now heading toward adulthood, although it reminds me that I am getting older ,I love her so much and am very and proud of the woman she is growing into :)

One of the first things she did on becoming 17 was to donate blood.

She had already placed her name on the Donor register when we discussed organ donation while I was on the transplant list but she had a strong feeling that she wanted to become a blood donor. So she went with my wife to the local hospital and donated just after her 17th birthday as soon as she was legally able.
I am so proud of her for this altruistic act. I just wish I could give blood myself!!
  but you can…….click the blue banner

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One year ago my life started again

One year ago today I was wheeled into a operating theatre in Harefield Hospital breathing oxygen to stay alive, and because of a selfless 45 year old man my life was saved, I woke up breathing though new lungs.
I was so ill I would not have been here to write this post, my lung function had dropped to 13% I had suffered four collapsed lungs and nearly died from swine flu.
Then I got a call and my whole life changed.
I cannot begin to explain how bad my life was back then how hard it was for my children and my wife watching my life ebb away.You can read the posts from my blog before 4th October 2010.

But if you want to hear from people still waiting please read the blog posts from

Past the Point of No Return  &  Come walk in My Shoes 

Both these women are living life waiting for a transplant. Because of the fact that only 30% of people in UK are signed up to the Donor register they will wait longer than they need to :-(

But there is hope, you can sign the register

         NHSBT Organ Donation Register      

I have been  recovering well from my case of shingles and the pain has all but gone.I am on a course of anti viral tablets for a couple more weeks but on the whole I am well and happy.
It is almost like I find it  hard to remember my life back a year ago before my transplant, as it feels like a new life I am living now.
Yesterday I attended Harefields transplant clinic for a check up it was all good news,my lung function is stable my blood results were not a cause for concern,my weight is stable (but more than it should be) and my kidney function is no worse than it was.
I was given a green light to go swimming and I asked about going fishing again and was told that with good hand hygiene and care it would not present any problems for me. With a year behind me now my risks of rejection are less now,and so given my results the transplant Doctors were happy to leave me to visit clinic in three months time and the kidney specialist suggested six months till my next visit to see him. finally I attended the GP surgery to get the final issue sorted in preparation for the cold weather that we are told is on its way.I joined the line of the over 6os and ill for my Flu jab.I am all set now and hope that my next visit to hospital will be next year:)

A sign I wont see till 2012 (I Hope)

         

Results Neutral,Blood will have to flow

Transplantation is a series of ups and downs, I have heard it compared to a rollacoaster!

Today I got some good news regarding my test for gastric reflux I was told that the sensor that I had to carry for 24hours had resulted in a normal reading of PH in my oesophagus and therefore there was no need for any intervention.I breathed a sigh of relief, but maybe a bit too soon as you will see later.

The intervention that was indicated was to lose some weight and become more active! 

This was something that I had realised was a problem as I have seen my weight going up steadily since my transplant, my stays in hospital have compounded the problem. Steroids have also lead to me eating more than I would have done in the past.Losing weight was a better alternative than a possible operation that I thought I might be needing, so I counted myself lucky.


The day was good and despite the fact that I was stuck at Harefield I had a chance to meet up with some people during the day.
The first people I met were @DaisyAngel52 and her husband Dave.He has been having problems with reflux himself ,but hopefully will be getting his operation in the near future.They have been so supportive since my transplant and I wish them all the best and hope that their problems will be in the past very soon.
The second person was @ ClareLauwerys who I have been tweeting with for a while.We managed to meet up with during lunch time at the League of Friends cafe and I had a good chat with her

I hoped to leave quite early after I was given a month till my next appointment by the consultant and which was great. I had seen a surgeon about my scar before I left as a small area of it had become red and so he had prescribed some antibiotics which I had to collect from the pharmacy.
After we got the pills I got on the road quickly as there had been indications that many people might be travelling today for the Easter weekend ,as it was these reports were groundless and we got home really quick.

As we arrived in our village my phone rang and I received a voice-mail from the clinic to tell me that the consultant had requested my next appointment be made a week earlier. Only three weeks till next visit. I was disappointed but reasoned that this would not be too bad.
Then my luck changed, and not for the better. I got another phone call from the Nurse in clinic who told me that one of my blood results had shown problems they needed a repeat blood test to check for CMV just what I needed. It seems that I will be visiting much sooner than I thought in five days time!!

It seems that this rollacoaster after going up for while, has  gone in to a dip again. Hold on to your hats!

Let us see were this ride takes me now?   

    

Six months Post Transplant Thank you

Six months ago I was in ITU recovering from my lung transplant and awaiting a move to the ward on Harefield Hospital where I spent time recovering.
Can it only be that long? It feels like a lifetime and it took a lifetime to get me here.
A lifetime that my donor gave me.
A man not much younger than myself, who's life ended.
He and his relatives were unselfish and had considered what may come after the end of his life.
They offered consent for  his organs to be used so someone like me could live a better life

I would like to say Thank You to this unknown man who saved my life

Your lungs expand inside me and I take joy in the experience of a deep breath.
I can walk and catch breath without panic.
I have left my oxygen behind, my wheelchair is gone.
I can walk in the sun.with my children
I can enjoy a bath or shower and wash my hair without breathlessness
Stairs are possible,lifts are optional.

Six month on I am starting to feel like my old self again but a self I had lost to illness a long time ago

I have had some problems along the way as anyone who has read this blog knows.I still have a long way to go and the journey is hard but thanks for the chance to try

I have met some great people who have been transplanted and helped me with the journey.

People who have been waiting and are still waiting who I hope I can support  as they wait.

Finally the great people who support all those people involved in the transplantation process the Nurses Doctors and relatives and the many selfless people who raise awareness for organ donation.

Thank you all

As I look forward to the next six months I would love to report that all the people I know have had a successful transplant and are doing well if you agree with this sentiment please sign the register for organ donation if you haven't already.If you have please talk with your friends about organ donation, show them this blog if you like, you could raise awareness on your facebook page or twitter.

Lets get the message out there

Organ donation

Give the Gift of life

Three people die each day waiting for a organ to be donated. 

Only 28% of people in UK are on the organ donor register

Oxford Outpatients and Risky Business

Spent a day today at  my local hospital where I attended a outpatients appointment to check the state of my blood gasses and recovery after my recent respiratory collapse. I had tried to attend when I left Harefields last weekend but due to the large dose of steroids that I was on I had really upset digestion and had to cancel.
I had a blood gas test done and this showed normal levels of CO2 and normal sats.
When I saw the consultant she told me that she was very surprised that my levels had returned to such a good levels so soon, this was a very positive outcome.She said that she felt my problems were a direct result of the build up of CO2 and not as a result of infection as has been suspected.
This combined with the fact that my bronch has not shown any abnormality was very reassuring. She also said that my lung function was okay and that she was very pleased with my progress.We discussed how well I was coping with using the Bi Pad mask I said I was happy at present, but long term I would like to stop using it.
An agreement was reached for a 6 week follow up appointment to see how things progress and then a discussion could be had about trying to come off the mask if things continue to improve.

This last couple of  weeks I have been finding it quite hard. With the weekend in Harefields for biopsy and the worry about rejection, then relief to find that there was no abnormality found. Then having to cope with the high level of steroids and reducing those.I have not been good company for my family.
One thing I had not realised  is how stressed and irritated I have become, and my tolerance is at a low ebb!
This is something that requires a ability to let things go, a skill that I am lacking at present. I find that my irritability builds up too quickly till I find myself moaning and losing it about stupid crap.I hope that when my Prednisolone level return to normal so will my moods,I hope so.
Somehow I feel that my life is no longer my own since my transplant. The constant checking of  levels, temperature, lung function and weight can be a pain, but I am so glad for the ability to use and support these new lungs and keep them working well.
I need to find a point where I work with the new feelings that living with these new lungs causes me, but also incorporates my individuality  into back into my life. I feel that I have been too worried about the risks involved in the transplant process and now that it has happened I need to take more risks with the new life that I have been given.
To quote one of my all time favourite movies
   

Risky Business (1983)

Miles:(Curtis Armstrong) gives Joel Goodsen (Tom Cruise) some advice 
" you wanna know something? Every now and then say, "What the fuck." "What the fuck" gives you freedom. Freedom brings opportunity. Opportunity makes your future.
"Say "what the fuck."... If you can't say it, you can't do it." 

So in the future I will try to remember another quote from Joel Goodsen (Tom Cruise)
"Sometimes you just gotta say, "What the fuck, make your move." 

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.

Where Did it all go wrong?

The year started off well and I was doing well.But things were destined to take a unusual turn after my visit to clinic after Christmas. I was still getting headaches in the morning, had mentioned this with the doctor who felt it would sort it self out or may be as a result of a side effect of one of the medications.I felt that it could have been due to CO2 and asked about Bi-Pap.The doctor said that it was rare for people to need it and he would adjust the medication if needed should the headaches continue.
The suggestion was made that regular 20 minutes of exercise would help increase my lung function as this had dropped if this did not improve it would mean a bronchoscopy  to clear the lungs and check for rejection.
I had been out and done some walking and exercise but evidently not enough. I was finding it very hard to find the energy, and at times I felt ill, but I was determined to try as I didn't want to go into hospital again.The next appointment was set for two weeks.I went home feeling like I was doing something wrong but I didnt know what,I kept hoping for improvement.Over the next couple of weeks the headaches didn't improve and I found my self taking paracetamol through the day with little effect
I felt better in the evening more than the morning and so I decided to go to my camera club meeting on the Thursday to let people how I was getting on after my long absence after the Transplant.It was a good evening and everyone was great and asked me about how things had been Paul the chairman mentioned what had happened and congratulated me on my recovery there were a lot of questions to answer but I didn't mind and I enjoyed being out and about.

Things were about to change though The problem was CO2, and during the weekend the effect of CO2 was building up to a critical levels due to my body's inability to adjust to my new lungs. On the Sunday night my wife found me unconsciousness and cyanosed.She called a ambulance and when they attended they found that I was critical and suffering respiratory failure with sats in the low 50s .I was admitted to ITU in the general hospital and spent 4 days unaware of events around me.I was then transferred to ITU in the local chest hospital but as the chest ward had no beds I was kept on ITU.
 I was aware of where I was but most of the first part of my stay I was sleepy and confused.looking back I realise that I wasn't fully well even then and realised that since I had been in ITU I was unable to read,write,use a knife and fork I couldn't shave or understand tasks and required help from nursing staff I was worried and frustrated.I found it was a strange place to be as all the other patients were unconscious so there was little conversation going on!
  I had been there for a few days I was happy to be told that they were transferring me to the chest ward. I had been on the ward before on a couple occasions and knew the staff.It was at this point that I started to recover and also become aware of the the problems and frustrations that my stay in ITU had left me.I was still unable to write my menus and I couldn't read any of my books or magazines worst of all I couldn't send text messages to my family or reply to any tweets from people offering me support I felt so isolated. I wondered what I would do if I didn't recover? despite reassurance from the doctors that this is something that can happen after a while in ITU.I realised how much I depended on the gadgets I use, particularly the phone which I was totally unable to operate for a while.The thought of using a computer was something I couldn't even consider at this point.
 After treatment on the chest ward using Bi-Pap which is a machine that helps clear carbon dioxide by blowing air into your lungs overnight through a mask I was feeling much better, it had taken a lot of time for me to recover.Towards the end of my stay on the chest ward I was fitted with my own Bi-Pap mask and machine, and then the subject of Harefields was raised. They had been kept informed of my progress and were keen on my admission when I left Oxford, I felt fine and wasn't keen.So as there was not a bed available I persuaded the consultant in Oxford to discharge me home. I made a promise that I would attend the clinic on the following Thursday , I was so glad to get home.