Saturday, October 4, 2014

Four year Anniversary

This time four years ago I was recovering from the biggest change to my life since my birth
Thanks to my donor I was able to breath again after five years deteriorating to the state of a respiratory cripple on oxygen constantly to breath.      
It seems like a lifetime ago and in a sense it is!

It has been a year since my last entry in this blog why is this I here you ask? truth is I have been getting on with daily life. There have been ups and downs in my health but mostly I have been trying to live a normal life and not let my medical conditions rule my life. 
It took a long while to get over the process of transplantation and the changes it brings with it,
I was told by my doctor that transplantation is not a cure it is swapping one serious condition for a new one.At the time I didn't fully accept what that might mean, I think now I understand!  
How have you been?
 a question many people ask when they met you after a long time. For people with a long term medical condition this becomes a very awkward one to answer! This year I have tried to answer in the expected way
"I am fine how about you"
 On the whole people don't want all the details, if you tell them they get scared for you and worry what to say to you. Truth is the only people who know what you are talking about are fellow transplantees.But for the purposes of the blog I shall briefly fill in some details.

I have had to deal with a few health issues this year not least the issue of chronic rejection! It has not cause me any overt problems as such but the thought of it being present has been hard to deal with. 
It is strange that when I was really unwell I dealt with many more problems and was somehow able to ignore them and get on with life better than the unseen issue of a worsening of the rejection!
Another issue that has taken some getting used to has been my Diabetes I have struggled with the effect that it has had on my life and the restrictions, but it seems that a the moment it is not causing any of the health issues that come long term my eyesight is okay and peripheral nerves seem good checks through my GP seem to be in the range that is expected.
I did have a issue with some sore skin areas on my right leg that was worrying me. But after a skin biopsy in the summer it turned out to be Porokeratosis. This a skin condition that can occur due to the medication I take for the transplant. I was happy to find out that it wasn't skin cancer, a risk factor for all transplants, but there doesn't seem to be much that can be done for it, and it does need to be monitored as it can develop into skin cancer in a small amount of cases therefore I will be attending Dermatology dept from now on.
The most major issue this year was being admitted to hospital with RSV!
It started as a cold just before Liz went to Manchester with our daughter to look at accommodation for University then it got rapidly worse over that day to the point were I became breathless a call to Harefield confirmed that a hospital admission would be on the cards and when my son got back from college that night a ambulance was taking me to the local hospital.
That night I was back on 4 litres of oxygen and quite worried two days later I was back in Harefield on IV antibiotics after a bronchoscopy and a diagnosis of RSV a common respiratory illness in children for a immunosuppressed person it can lead to pneumonia and death so i was glad that I got treatment when I did even though  I had to spend the whole of the stay isolated as I was a risk to the all the other transplant patients.
Finally a couple of months ago just after my holiday I managed to brake my ankle walking down a hill after spending the night waiting for the demolition of the cooling towers of a local landmark didcot power station and spent some time on crutches :(

It has not all been bad although I hoped to get away a few times this year I was able to go on holiday with the family to Sussex for what would be the last time although we had done most things before we did manage to ride on the new Brighton Big wheel
and saw some of the sights before having a nice meal 
Brighton Street art
 I also managed to get to Hasting on Mayday to see the largest amount of motorbikes in one place I have ever seen. 41000 attended and filled the town with bikes I was there on my bike with my son Mine is the bike with red luggage on the right of the photo
Another interesting event happening on the same day was the local may day celebration "The Jack of the green" where you can find many unusual characters!

 "I am fine it is all the others" 
This is another stock response to the how are you question. 
In this last year this has been particularly  poignant as some of the people I follow on this blog are no longer with us now or are having a bad time of it 
Firstly Kerry who wrote Come walk in my shoes... did not make it to receive new lungs and passed away peacefully on the 21st March 2014 for those who want to support the new charity set up in her name please see The Kerry Alex Thorpe Trust  you can read more about Kerry on her 
Another person no longer with us is Hazel who wrote  Hazel's Blog - The road to transplant she was called to transplant and received new lungs but unfortunately died from blood loss on 25th September as you can imagine it has shocked me and all the people who were following her progress:(
The final person I have found out is having a very bad time is Jodie who writes Jodiecf Blog she is suffering with very bad chronic rejection of her heart and lungs and is waiting to be put on the transplant list again please if you could offer some support to her and comment on her blog I am sure she would appreciate it.
On a positive note the people I mentioned in my last blog entry last year are dong well Kirstie  is doing well since her second transplant Kimberly is getting better after her problems last year. Kath has recovered really well and is living life to the full since receiving her new heart and lungs
Katie is doing well since her transplant and is now involved with LLTGL as a advocate
If you want to help this very worthwhile charity please think about buying one of the new
It contains several people that I follow on this Blog and will help with educating people about transplant and organ donation

Other things that have happened in our household this year is my son Alex is now a man having reached 18 this summer. I was able to join him and buy him his first pint of beer in the local pub, something I thought I would never be able to do when I was ill.
My daughter Ellie has left home to go to Manchester Metropolitan University and my wife Liz and I will be celebrating our 5th wedding anniversary on 23 October after 27 years together.
Our family 12th September 2014
All these things would not have happened if it wasn't for my donor leaving me his lungs for that I will be eternally grateful to him and his loved ones who allowed the donation to go ahead 
Please if you haven't signed the donor register please consider doing it now 
and if you do or even if you don't 
please let your loved ones know so they can honor your wishes

   Click Here        

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