6 Years and still going strong

Another year has passed and I am still here
With each passing year I give thanks to the 45yr old man that signed the donor register and who's family gave the go ahead for me to receive his lungs

I have looking after his gift and kept his lungs alive inside me and have been able to live a full life because of this I have met some lovely people as part of this journey and I am sad to say that some are not with us now
One of the things that happens on this journey that the people who start off the journey with you sometimes only stay for part of the road you travel. This has been particularly true this year with several of my fellow transplantees having passed on and many more having life changing and life threatening complications.I wont go into a in depth listing of the people concerned but it becomes quite hard to keep positive in the light of all the issues people are facing.

But this is the deal you sign up for 

Swap one life threatening condition  for a slightly easier to manage life changing condition  

People think that a transplant means you are cured of the issues you had. It is true that you dont need to use oxygen and may not need constant inhalers and I lost my life long asthma.
But there is a cost....

I have ended up on life long Bipap and daily nebulisers for an infection I had while waiting for my lungs.The drugs have taken their toll on my body and my kidneys are getting damaged by meds.
I have had a skin infection this year which took ages to diagnose and will take 6 months of pills to clear.
I could have been worse as I am also prone to skin cancer because of the medication I take and need to use high factor sun cream (50-60 factor) whenever I am out in the sun.I an in danger of broken bones and  mood swings due to the steroids I take. I am also diabetic now.

But I am doing better than many I know.

Other people who started this journey have suffered more One person I know has had to have a Kidney transplant another has had complications due to reflux and is now permanently on tube feeding to preserve her lungs.Another friend suffered complications with a preexisting condition and had major abdominal surgery.Finally another friend is now confined to a mobility scooter to get around due to problems with medication side effects.

        To all those people who are struggling with health issues I send my prayers and wishes that things will get better for you soon.Know I will do all I can to help you in any way I can!

Those who are waiting for transplants I hope your call comes soon.Finally to those who are no longer with us it was a privilege to have known you and been part of your lives rest in peace.  

On a positive note my health has been good  except for at the beginning of the year Christmas time I felt rough and my lung function had taken a hit I was worried due to my diagnosis of chronic rejection I was told by Harefield Hospital that they wanted to do a Bronch and get a CT scan this was postponed and when I did get the investigations they showed inflammation but no definite cause.  
I was able to slowly improve and I have been able to lose quite a bit of weight which has helped and my last visit saw my lung function improve allowing me the magical six months off clinic

What is the main point to this post apart from celebration you may ask?

I think the thing I want to share is 

LIFE GOES ON

Not for all - Too quickly at times - it doesn't stop 

A New Life is not new it is a precious extension

Transplantation does not change your life but it can change you

It is important that you live that life to the full 

Do the things that are important to you.

You are the only one on this journey 

You may walk the road with others 

But at the end it is a road we walk alone.

Try to make this walk a happy one but be true to yourself

Help those you meet along the way if you can 

Share wisdom and happy experiences

Have no regrets you are playing with extra time

Seek joy and love in the world there is plenty if you look

Have fun wherever you can find it :)     

   This next year I hope to be able to do some traveling visit people I know on this journey with me. 

I hope to go abroad and travel England and Scotland and Wales 

We never know what is around the next corner in our lives but I intend to go and take a look!!! 

    

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  :-)

Harefields for Test Results of Impedance Study

Tomorrow I am back at Harefields for the the results of a quite important test that I had done the last time I was at Clinic.This could result in me needing another operation if the results are not good,I am worried and have not been the best company the last couple of days as I have been preoccupied with the outcome.
Those of you who follow me on Twitter or Facebook  may have heard about the test I had done but for those who don't I will explain about what I had done and why.
During my last stay in hospital I had several tests done including biopsy,CT and bronchcoscopy there were no abnormality found regarding infection or results from biopsy.The CT scan had indicated there may be a problem with my oesophagus closing off completely, and  there was a positive result for a test called oil red stain. This I was told could indicate that I was having gastric reflux and  the way to find out was a impedance study.

This sounded interesting what did it involve?
 I was asked to attend the respiratory function and I was fitted with a nasal gastric tube containing several sensors along its length, this was then fed into my nose down my throat and into the oesophagus  stopping short of the stomach this was then attached to a monitor box which I wore over my shoulder for the next 24hours I was told that I had to push buttons to indicate when I ate and when I slept and other buttons if I experienced any pain or discomfort lucky for me I didn't.
The whole process was irritating to say the least and I was aware of the tube for the whole 24 hours and I  tried  a sandwich just after it had been fitted  and after had a soft diet for the rest of the evening.Liquids were okay but taking my medication proved to be easier than I thought it would be.
By the end of 24 hours I was wanting to pull the tube out myself and I do admit that when it was finally time to removed it was bliss!
The League of Friends did good business as I stocked up on bacon and sausage rolls and cheese and ham toasted sandwiches that day before I went home.
  
Why would I have this done?
 It seems that sometimes people can suffer from reflux from the stomach and this can get into the lungs and cause damage, encourage rejection and infection.This has happened to another lung transplantee I know this problem has caused him a great deal of heartache including a need for radiation therapy to eliminated his immune system to deal with rejection problems. So I was aware of the issues that could occur if it was left, and I was happy to find out earlier rather than later.
I am hoping for a positive outcome  but if it turns out I have a problem it can be treated using a operation to wrap the stomach around the top of the oesophagus this is done using keyhole surgery and stops the reflux getting into the lungs.
I must admitted that the whole process is wearing me down and I long for the day when I will be able to take full advantage of my new lungs and see my lung function improve and continue to improve.
I have improved, but in the back of my mind I worry that things might go downhill again, I need to get better than this and hope that a solution can be found as to why I have not.

Fingers crossed for tomorrow watch this space for the next instalment!
 

Goodbye to Hospital, free and clear, for now

I have escaped the confines of hospital for the present.
During the morning I recieved a visit from Richard Burbedge @AwoogaBurbs
who had been called back to clinic that day with similar problems of lowering of respiratory function and ended up being admitted to the downstairs ward as I was getting  the chance to leave.I felt for him and tweeted him all the best and hoped it would not be a long stay
 
It took till the later part of the day before the results of my Bronchoscopy biopsy  was returned and was found to be clear of anything abnormal. I was sent to the lung function room and had my FVC1 and FVC checked again. There was a bit of a increase in both values this was enough for a discharge summary to be prepared.
I rang my wife and let her know, packed up my stuff and had some food while I waited for her and my son to arrive.It had only been a short stay but the whole process had taken it out of both my wife and me
 I noted the new set of bruising on both of my arms from the IV steroids that had been started  over the weekend  and the failed blood tests that I had done.My arm have still not recovered from the previous stay in hospital and finding a place to site a cannula is becoming increasingly hard for the doctors.

The one thing I was not happy about was the large amount of steroids I will be on for the present I started a reducing dose starting at 70mg and dropping by 5mg daily until I get back to the normal dose of 10mg that I use, in several days time. This has left my feeling unwell and has upset my digestion, and has encouraged hamster look to my face and  bloating of my waist.
It took no time at all to get home and I enjoyed the drive as the motorway was clear. We dropped off at the local Mac burgers to get some food for my son on the way home. We got back late evening. The plan was to return to clinic in two weeks and I had a appointment to attend the Churchill Hospital the next morning as a follow up to my stay at the end of January

This is not how things worked out as when I got up today I was totally unable to get up. The combination of steroids causing my upset digestion, pain and general tiredness caused me to cancel the appointment and make a new one for next week. I then spent the rest of the day resting in bed until the pain was better.
Never mind tomorrow is another day I hope that I will be more recovered then:)    

Hospital stay nothing yet?

Spent the last three days in Harefield Hospital came in on Thusday at 10am and had a CT scan which I found hard work as laying flat is still hard for me.
Then Friday I got up early and went for a bronchoscopy I was happy that I was one of the early ones and so was back on the ward for medication. I went for a X ray then the doctor informed me that all had looked okay and no infection or secretions were noticed.
Because the biopsy results would not be available till  Monday they would start me on IV steroids in one gram doses for three days then I would go onto a reducing dose till I get back till my normal dose of 10mg daily to prevent any rejection before it started,and to help my lung function improve.
On the whole the stay has been all right but quite painful due to the lack of usable veins for IVs and blood samples.My arms are covered in bruising from attempts made to site cannulas for the medicine.

It has been nice to see some of the nurses on the ward again though and today I went out to the village of Harefilds for a walk for a couple of hours so I thoght I would add some pictures taken on my phone as I walked to give a flavour of the day as it was a great day with nice weather

Harefield Hare

Lake on the hospital grounds

In Memory

  

I am hoping for good news tomorrow regarding the test results and with any luck I will be able to go home watch this space and keep your fingers crossed for me I have had enough of hospitals for the moment:) 

Recovery Investigated, Back to Harefield Hospital

It seems that I may have spoken too soon!
We attended the Transplant Clinic at Harefields on Monday 21.3.11 and was happy to meet up with two twitter friends at lunch time one was @LamLungArtist  (Justine Laymond) who had dropped in for a while. She was telling me about her latest venture.
She is training for the Clipper round the world race.She is going to do the last leg (8) which sails from USA, Canada, Europe, Ireland and back to the UK. This involves,4,000 miles, 22 days at sea, with 4 races in total. If you want to know more check out her blog http://www.justinedoublelungs.blogspot.com/ I noticed that she also had a piece in the Harefields Transplant club news letter.

I also met up with another lung transplantee @AwoogaBurbs (Richard Burbedge) he was transplanted back in June and under went a new procedure. The new minimally invasive lung transplantation differs from established lung transplantation because it doesn’t require surgeons to cut through the sternum to open the entire chest. Rather, the organs are replaced through incisions at the side of the rib cage, vastly reducing scarring and dramatically improving patients’ recovery times. You can read more here

He has had a good recovery and has been able to start to go swimming again recently, something that I hope I will be able to do soon.It was great to talk about how they were doing and I was encouraged listening to how long it had taken to reach their improvements as I felt that I should have been doing better by now, but with my CO2 problems I have been slowed down in my recovery.

It seems that I was to have a few more investigations before I would be sure things were better for me.I was seen by the Doctor in the afternoon who dropped a bit of a bombshell.  He was concerned that my lung function was less and that I had gained weight since my last appointment.He wanted to admit me for tests!

I had noticed the weight increase but felt that my lung function was generally good but hadn't improved since my last clinic appointment. I didn't feel unwell and was quite fed up with the thought of admission.

I resigned  myself that it would be useful to find out how things were in my lungs and that a Bronchoscopy ,Biopsy and CT scan would give the doctors a chance to investigate properly.

So I will be getting admitted to Harefields Hospital tomorrow and hope that the tests that I have done will be able to show that things are progressing well with my transplant recovery I hope that I will be able to go home on Friday if the test show no problems:)