No Buts Going To Be Bronchoscopy

Clinic day arrived and I got there early hoping to get home early, but to no avail :(

Since my last attendance last month my lungs hadn't massively improved. I had still been able to managed 150 lengths of the pool in the previous week , but I had found it harder to do.
I had also been told that my tacro levels (Anti-rejection) were still high at the last blood test and I had been unable to arrange another test so had left this till clinic!

Got the bloods done without too much trouble and the X ray looked okay, but it was my lung function that let me down it had gone down again.I knew that  this was not good and worried what was causing it.
When I saw the Doctor she felt the same and asked me to come into Harefield Hospital for a admission. I was booked for CT scan and  a Bronchoscopy the next day  I was disappointed but realized that I should find out what was causing this and get some treatment

I arrived back at Harefield with my wife and son at 2100 and was admitted into Fir Tree ward where I had waited for my transplant to go ahead. We talked about the parallels while we traveled, as it was a similar time of night when we were driving there the night of my transplant.My wife and son then left me quite quickly so they could get home

I could see that the process was worrying for both of them because rejection was one of the possible reasons for these problems to arise!! It bought up memories in all of us about how it was when I was ill.
Left on my own I started to consider what rejection would mean should it be found, although very treatable with present mediation it holds a great fear for all transplant recipients I decided to put these thoughts away till I needed to worry about such things.

Throughout the week I had been posting my support for my friend Kimberley Liane Kneil who's blog I follow  and who had been having a really hard admission after having a bug. I had joked that if my lung function was still poor I would join her. Prophetic words that proved correct, except she was on Rowan ward downstairs.I posted a message to her on FB and we arranged to meet up during my time on the ward.
I grabbed a couple of bags of crisps  to eat before I went Nill by mouth from midnight and settled down to watch a DVD to pass the time till my Bronchoscopy with some trepidation.
The Bronch and CT scan went well and it was all over by 11am but it left me worn out and sore. I hoped that I might get some results that day, but the Hospital had been busy and nothing came back that day.
I was able to visit Kimberley and spend a bit of time chatting with her:) She is about to celebrate one year transplanted in July and I remember hearing about her call and successful transplant while we were on holiday in Sussex last year.She has been having some problems with her Kidneys since her admission and i really hope that things improve very soon! I would urge you to read her Blog if you want to know more.

I spent the next day Looking out of my window to a great view

finally I got fed up and went for a walk to pass the time waiting for the results of the tests, eventually results turned up there was no evidence of rejection but they did find some inflammation and suspect acid reflux or viral infection.So I have been put on a couple of tablets and need to come back to clinic next week if things don't improve they will bronch me again and they want to repeat the impedance test I had done before to check if acid is coming up from my stomach to my lungs on 1st may what joy!! 

Never mind I am going home for the present so I am happy  :-)

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

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!!!

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

Things Are Getting Better Now

I am feeling much better now and feel that the shingles has finally gone!! 

Good things have been happening with my photography and I have started a new page on my G+ account. You may have seen this on the widget on the right hand column of the blog.

Many people are starting a business page to promote their photography or company but I felt that I would like to share information from all over the world about transplantation, developments and up to date research.
The other function of the page is to offer somewhere for people to publicly state their support for transplantation and Join a group for transplant advocates at
Group As a listing of people on G+ who have signed the register.

You can visit my new page Transplant News and I would love it if you +1ed it share it and add the page to your circles so that you will be able to get the news that is shared.


Other things to report is that I am about to start my pulmonary rehabilitation  course again on Friday with a assessment of my fitness then I will start the six week course on the Wednesday and Friday the following weeks this is happening at the local gym and although I started the course once before I had to stop because of the case of shingles that I got :-(   I am looking forward to it and will be on it till early in January when I hope to continue with my fitness improvements with the extra impetus of new year resolutions to fire my enthusiasm.I have yet to brave a swimming pool although I have been told I could as the extra weight I have put on is a bit of an embarrassment.

I am also hoping to go fishing again after getting the okay from Harefields team at my last appointment might be that i try a bit of pike fishing first with spinners and plugs.I realised that the last time i when fishing was back in 2007 when I caught this pike with my son

  I am hoping now I can breath a bit better I will be able to catch a bigger one!   

My photography is coming along well and in the first competition of the season I scored two 17s with my first two entries I thought I would include them for your comments 

dragonfly

This was taken at the Oxford University arboretum local to us, when I was taking pictures of the fall

Steller's Sea Eagle

This massive eagle was flown at a local event near us in the town as part of the attractions and stood three feet tall it had talons the size a child's hand a very impressive bird can be seen flying at Warwick Castle which is were the hawk show is based

One final bit of good new is that one of the pictures that I took on my holiday before the transplant is being used in the local camera club regional competition "The Rose Bowl" run by

CHILTERNS ASSOCIATION of CAMERA CLUBS in the first round our club won the round!!!  

I have been told that my picture scored highly at 19/20 I have included a copy of the picture for you to see it was called "winging it "

  let me know what you think?

If you like these pictures I have been including these and others in my G+ photo blog along with other inspiring pictures that I have found around the internet. 

You can see them at  Marks Photo Blog

The last bit of nice news is that one of my photos is being published in a calender being arranged by a couple of the club for sale to members if you want to see the photo it is on the club website 

Wallingford Photographic Club