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

You can read her blog here

  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

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.