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  :-)