Friday, October 4, 2013

Three years Anniversary - Rejecting My Rejection

Hello again,
It has been a while since I posted in this blog six months to be exact!
lots has been happening to me and to others I know and I have done a few things that I have been putting of since my transplant.
Firstly I want to bring you up to speed on my health I know that I said in my last post that there was no evidence of any rejection just inflammation this was an area of focal pneumonia that was treated with six weeks of increased steroids 30mg instead of my normal 10 mg but something else was found
 Bronchiolitis Obliterans
Transplanted lungs are susceptible to different types of rejection.
Acute cellular rejection – Acute cellular rejection is the predominant type of acute lung allograft rejection and is mediated by T lymphocyte recognition of foreign major histocompatibility complexes (MHC), also known as human leukocyte antigens (HLA) in humans.
Humoral rejection – Humoral rejection, which is less common than acute cellular rejection, is mediated by antibodies directed against donor HLA epitopes. These antibodies may have been present in the recipient at a low level prior to transplant or may develop afterwards. Generally, if HLA antibodies are identified in the potential recipient, the corresponding HLA antigens are avoided in a donor (so-called virtual cross-match). Hyperacute rejection is a rare form of humoral rejection that occurs in the first 24 hours following lung transplantation in recipients who have preformed anti-HLA antibodies.
Bronchiolitis obliterans – Bronchiolitis obliterans (BO) is the predominant feature of chronic lung transplant rejection and is manifest pathologically as dense fibrous scar tissue affecting the small airways. Clinically, BO is associated with a progressive decline in forced expiratory volume in one second (FEV1). While BO is felt to be largely a manifestation of chronic lung transplant rejection, several other risk factors have been identified. Less commonly, chronic vascular rejection is also present and manifests pathologically as atherosclerosis in the pulmonary vasculature
 The doctors have also done a impedance test on me as i mentioned in last post, that proved negative, so the reason for my BO is not gastric reflux leading to damage to my lungs. I was relieved about that but obviously concerned about what had caused the rejection.I went into a bit of a decline in my mood and the high levels of prednisone were helping me physically, but mentally I was a mess.It was really hard for my wife and children to be around me due to my moods and irritation.
Gradually my breathing became easier due the steroid treatment and when I returned to my next clinic appointment my FEV 1 had improved to a level near to what it was before the rejection episode. The doctor was happy with this, but when I asked him about the long term prospects for my lung function he was not able to give any guarantees,he just said we will have to wait and see over the next few months. He also told me that the blood test they had done had indicated higher than normal blood sugars and that I would need to get a fasting blood sugar test done when I had reduced my steroids back to a my normal dose as this could be the cause.
Just my luck when I did get my fasting bloods done I was called and admitted into hospital with a blood glucose level of 55mmols/l,  not good and requiring urgent treatment.So I have increased my tablets by a few more as I have now been diagnosed as Type 2 Diabetes.
I have now got my blood levels under control again but not before experiencing my first Hypo while I was out on my Birthday drink this resulted in me passing out and cutting my head open in a packed pub in front of the band that was playing how embarrassing was that !!
The one positive effect that has happened is that I was able to lose a bit of weight and it has given my Diet a boost not having any sugar :) As I was leaving hospital I managed to take this picture to post out for Transplant week reminding me how lucky I am !!

what else has happened ? well quite a lot. I decided to deal with the issue of rejection in a positive way by getting on with life and doing things that I had put on hold.
I went out and bought a motorbike
Honda Crossrunner (VFR 800)
At the same time I bought my son a bike too
Honda CBF 125

I was able to get on holiday and had a great time in Hastings with my wife's family although I haven't been able to do all the traveling I was hoping for it was great.I was able to take a picture that I have been waiting to take for a few years while there

It is a view looking towards beachy head and shows the Seven Sisters cliffs from the Coastguard cottages It was at the bottom of a steep incline and was quite a walk. One I would have been unable to  manage before my transplant

I had a birthday at the end of August and moved into my second half century on this earth. Although much of that night is a loss to me due to Woods Navy rum and an encounter with a PA system ( see above ) I have now got a permanent reminder on my forehead of the nights escapades.    
When we got back from our holiday we started to sort out the house and managed to clear a skips worth out rubbish out of the house and we hope that we will be able to clear a lot more in the near future. Much of which had been left from before I got my transplant and we hope that now we will be able to get a new bed and furniture now we have space and I will also be able to move my mothers furniture I was left in her will from my brothers house.

I have been pondering my life a lot and realized that I am so lucky. 
My life has been limited by my illness but I have also have  been given two gifts, the gift of life from a 45 year old man  who gave me his lungs, for which I will be forever grateful.
My second gift is I know my life will not be as long as many others I know, due to the issues of transplantation. This is such a good thing, so many people go though their life thinking they will live forever, I know that is not going to happen!!  Therefore I try to make use of this precious time in the best way I can.People in the transplant community know this, although we don't speak much about it. we don't want to temp fate. this has been brought home to me recently.
A fellow transplantee Kirstie Tancock  whom I have wrote about in my blog before has suffered major rejection and needed to be put back on the transplant list after just two years with new lungs. Kirstie is a very healthy fitness pole instructor who had been suffering problems about the same time as I had problems and was admitted for my bronch from them on she had deteriorated we were all worried that she would die. God intervened and with the help of the Harefield Hospital team and a Donor she was able to receive a second set of lungs and is a present doing very well.
My other friend Kimberly Liane Kneil who received her transplant last year has continued to have problems since we met. She is waiting to here about a operation to help with reflux that has been damaging her lungs.I really hope she will be able to get her operation soon so she can get better again.

Why should this have happened to these young newly transplanted women why not me I had a long life before transplant? They both have their lives yet to live!! These are questions I have asked myself and there is no easy answer as to why, things can change very quickly for any one who has been through a transplant.
Only one thing is sure  we need more people to sign up as donors.

Finally some Great News
One of the people I follow on my blog got her call for a new set of heart and lungs her name is Kath and she got the call after two years on the waiting list

  And I have included another blog from a 15 year old girl called kate

You can read her blog here
She got her new lungs around the same time as Kirstie Tancock got retransplanted

As I write this It is three years today since I had my lungs transplanted and I was able to live again!
There are no words to adequately explain how grateful I am to my donor!!! He has allowed me to see my children grow up and go to college.I was able to celebrate my mothers 80th birthday with her before she passed.I have been able swim again achieving more distance that when I was younger, see my son ride his first motorbike and will be celebrating my fourth wedding anniversary on 23rd Oct after 26 years together with my lovely wife Liz.
I am hoping for many more transplant anniversaries, but am so happy with what I have had so far, everything after this is a bonus and I will be living it to the full :)
 If you would like to help someone else live
 We need more donors please if you haven't signed up as a donor and want to Click here
Then tell your loved ones your wishes so they will know what you want done

Wednesday, April 17, 2013

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  :-)

Friday, April 5, 2013

Sad News - Sam Yates has lost her fight for a new life

Just a brief post to tell my readers that unfortunately one of the people who's blog I have been following on my Blog list has lost her fight for a new life
Sammie (Sam Yates) who wrote the Blog "The End of my Tether?" about her wait for new lungs and her struggles with Cystic Fibrosis
she wrote
The aim of this blog is to perhaps raise awareness of CF and also of life living on ‘the list’. I am a primary school teacher and taught for 2 and a half (ish) years before I had to be dragged away kicking and screaming to concentrate on keeping myself as healthy as possible, so that should a pair of lungs become available, I will be fit enough to undergo the transplant. 

She was just 28 years old when God called her to join him
(I will keep a link to sammie's blog on my site in memory of her)

All the more reason for people to sign the Organ donor register 

If you have not signed up yet please consider doing so you can do so online  HERE
or if you prefer you can ring 0300 123 23 23 and register 
Finally Text the word SAVE to 84118

Please help someone like sam to get a new chance at life 

Thursday, March 28, 2013

First Clinic of 2013 - Happy Easter

Went for my first transplant clinic visit this year on 11th March.
This was going to be a quick check up and a early return home I thought, but fate was conspiring against me and the day took longer that I had anticipated!
The day started poorly with the bloods, my veins were giving the clinic staff some problems and it took a few attempts to get sufficient blood out of me to test,so I left the room with a few holes more than I thought I would!
On a  more positive note my blood pressure was good as was my Oxygen saturation, but my weight had gone up slightly despite my efforts.I did have a chance to pass the time with a couple of the people in clinic while waiting and was glad to here about one man who was celebrating 10 years since his Tx he was telling me about how things had changed since he had been coming to Harefield with the new clinic building, the Anzac centre, being the centre for transplant outpatients now.One of the great things I find about going to Tx clinic is the chance to meet and talk with others who have gone though the transplant experience.
I had my X-ray done and  was booked to see the kidney consultant in the afternoon I just had to complete the dreaded Lung function test. I had very little worries about this as I had got back to swimming regularly and had just completed 60 lengths of the pool on the Sunday before clinic.But when I went to blow it was apparent that my FEV 1 (The amount of air expired in 1 second) had dropped quite a lot from my last reading before Christmas, I tried not worry too much but was disappointed as this could be a indicator of infection or a early sign of rejection.

When I got to see the kidney consultant I was glad to hear that he was happy with my progress and told me that my kidney function was good at about 66% and that I shouldn't worry about problems with my kidneys he said he was happy to see me in another years time, good result!
The Transplant doctor was less happy she was concerned about the drop in Lung function as there were no infection markers in my blood to indicate why.She also told me that my Tacrolimus level (Anti rejection drug) was high and would require a dose reduction, this was good as these tablets upset my body a bit and lead to problems with the kidney, but I was a bit worried why the levels were up after so long stable.I was told to get a repeat blood test in a week for levels at the GP, and come back to clinic in a month.
On the way out I sorted out some 0.5 mg tablets for the reduction in the dose levels through the pharmacy and got on the road home. Little did I know that the day had a little more in store for me before I would pull up outside my house that evening.

The journey home was going well and I was quite tried so I wasn't hanging around I was nearly at High Wycombe when the car started to loose power then loose speed I moved from the fast lane across to the first lane and found that I couldn't get anymore than 40mph out of the car!! I was just approaching a junction so I decided to exit the motorway and just as I pulled off I saw a large Tesco store and managed to pull in
and park. I rang the RAC to attend and luckily they turned out quite quickly, the guy was great, the car was running so he decided to take it for a drive to see what the problem was.while I was waiting I went for a Costa in the Tesco  as I was parked outside.When he returned he said the car was okay and that the diagnostic computer had shown up no faults. He suggested that a sensor in the car engine had put the car into" Limp Home Mode" and had most likely reset its self while I had been parked, the cause was uncertain but he felt that it was better again and shouldn't give me anymore problems.

I took him at his word and set off again and had nearly go to my turn off when it happened again!!! I decided that this time I would just head for home and keep going but my luck was not good and as I left the motorway I found that my route home was blocked, the road was closed by the police for a accident !!! so right at the end of my reason I returned to the motorway and went to the next turn off at 40 mph :( Drivers on the motorway were not impressed, after another extra 15 miles travelling at similar speed  blocking all the traffic on the way I made it home.
When I turned on the engine again it ran fine but as I was pulling out my hair about the break down on the way home.So I called out the RAC who took it to the garage where it has stayed for the last two weeks. It had some work doing that was left form when it was serviced, but try as they might they were unable to find the fault so it has now been returned to me with the hope that it will not go wrong again!!

Finally home and with my car returned I have felt a bit under the weather and a bit breathless at times but I have continued to go swimming to maintain my lung function my  Tacrolimus level (Anti rejection drug) results  came back still at the same level as it was at clinic so I have had another does reduction to 2 mg daily and I will get a blood taken after Easter with the hope that thing will have settled down by then.Then I will be returning in mid April to clinic

To all you waiting for organs I hope you get the  new life you wish for:) 
To those who have had a transplant wish you all the best of health! 
To those of you who have yet to sign up to the Donor register click HERE

Hope everyone has a Great Easter
Enjoy your  Easter eggs


Thursday, February 28, 2013

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

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 

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)

Monday, February 4, 2013

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