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

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 :)

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

Late Birthday Present- Pain in the Arm

As I mentioned in my last post I had my birthday at the end of August a quiet affair with the family to mark my final year of my first half century.I had not long got back from my holiday in Sussex so made do with a nice meal rather than going out and getting blind drunk and painting the town red (just joking many years since I have done that!)One thing I had not mentioned in my last post was that during my holiday I had been suffering pain in my arm. This was I thought the result, of the exercises I had been doing in the gym as part of a pulmonary rehab course I had joined just before I had left for my holiday.The pain lasted till well after the holiday and so I found myself attending the GP's on my Birthday for some pain medication. Because the pain was not improving this should have been a clue. My GP suggested it was a trapped nerve and prescribed  DF118 they did help but the pain was still apparent.

We went shopping at the end of the week and when I got back my mother commented that I had rash on my shoulder I put some antiseptic cream on it and thought no more of it. Over the weekend though the rash developed and got very red and tender and the pain I was having got worse then it dawned on me why. I had developed a case of Shingles (Herpes Zoster).
This condition is something that is a risk for immune suppressed transplant patients and older people are more prone to it, guilty on both counts! Then as eating a  was packet of Bombay Mix and considering my next move I felt my front tooth fall out what Joy!!! The tooth was a crown and would be able to be refitted the next day I hoped, but as the next day would involve a trip to Harefiends Hospital for treatment with anti viral drugs I was really fed up.The only positive was that my temperature, blood pressure &  lung function were not being affected. I rang the hospital and spoke to the on call doctor who advised me to attend the hospital early the next day as the condition can become very serious when the immune system is suppressed and responds best to early treatment.

The next day was rushed and stressful for both my wife and I.First thing I rang the dentist's surgery and found that the earliest appointment was for 10.30 I rushed down to town to have the crown fixed back in my jaw curing the lisping voice that had developed as a result.
Then I went back home and packed up a bag , my Bi-pap machine and  medication with a vague hope that I might not need them but I realised admission would be a high possibility.I rang an cancelled the appointment that I had to review my Bi Pap at Churchill Hospital that day and finally I rang a friend who would be visiting on the Tuesday and suggested we meet up when things were sorted out.

I got to Harefield hospital and was asked to wait in a treatment room as I could present risks to other transplant patents attending the clinic. When the doctor saw the rash, which had by then developed into a mass of blisters, he told me that admission was inevitable and by the end of the day I was back on F ward.
I have been on the ward for a couple of days and the pain has become quite bad and I am glad to be here and receiving treatment with IV drugs which will continue for at least 10 days happily I have managed to get my laptop into hospital so I will keep everyone updated during my stay

Back Again

Holiday - Let the Games Commence

It all systems go for my holiday:) I hope to spend two weeks on the south-east coast in Hastings this will be my first holiday since my Transplant and I am looking forward to meeting up with my wife's family and hear the news.
I must be truthful when I say that I did not expect to make it to see another holiday by the sea last year before my transplant. The organisation that was required to get an oxygen supply and equipment I had to use such as the wheelchair and oxygen bottles made the whole process very stressful for me and the whole family. this year it will be better as now I am able to tolerate the hot weather and the inclines that I will encounter I will still have to carry a bit of stuff like my Bi pad machine and nebuliser and the various pills that I consume each day but I will be able to do many things that I  avoided last year.I hope that we will be able to attend the Eastbourne Airbourne Airshow and I will try to post pictures that and of my other adventures if I can.

The other thing that has happened is I have started my pulmonary rehabilitation course at the local gym unfortunately due to me being away I will miss some of it but this will continue till September when I get back.I must be honest when I say I was worn out when I had done the first two days. I found it great to be able to push myself and was able to do much more than I thought I would, so I was glad.
My wife has also been referred  for fitness training though our GP surgery so when I have finished on the rehab I will start to go for supervised fitness sessions with my wife if she wants to so we can both get fit again.

I have also been inspired by another transplntee who I know, who is presently at the UK transplant games and has managed to achieve 
Silver Medal in Archery with a score of 278, and a Bronze Medal in the 5k run.

he said  on his Facebook page today "So proud to run as part of the Harefield CF 4 x 100 metre relay team today. Running for everyone with CF, everywhere." 

Congratulation to  Richard Burbedge @AwoogaBurbs who had several problems on his way to the games including a serious sprain to his ankle and a visit to hospital that nearly put his plans on hold so I am glad that he achieved his aim to represent his country  But most of all his win  represents the gift of life his donor gave him and me that allow us to live better and more full lives

 

This year at the transplant games 15 transplant  patients from Harefields Hospital are taking part in the  British Transplant Games 15 people who lives have been saved by donors who signed the donor register HERE

There is a facebook page you can visit to find out more Westfield health British Transplant Games 

If you would like to know more Transplant Sport in the UK may interest you @TransplantSport

Great Britain Transplant Cricket Club will also be of interest @gbtcc   

There is also the Northern Ireland Transplant Association  at their twitter account @nitransplant

 So I will say happy holidays to you and go to bed as I  have a drive to do tomorrow, hope to post more and some pictures of the seaside soon :-)

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." 

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.