March on To Spring

Went to my clinic appointment this week and despite my cold leaving me gasping for breath , I have succeed, with my reduced immune system in overcoming it. My lung function has returned to a stable level and I am feeling more confident that I will not have any more problems now.
I saw Dr Carby who was happy with my progress I had lost a small amount of weight since my last visit and although my lung function was a bit reduced he was happy for me to leave Three months till the end of June until my next clinic visit!!
The only slight issue that arose was my kidney function once again was a concern.
I am back on the 26th for some advice from the dietitian, so he requested that I do another blood sample then to check my Creatinine levels then decide what must be done. He suggested that medication change might be on the cards, but I am hoping that things will have settled by then with any luck.
When I questioned him about the cold he said it could take up to six weeks to get over completely and I should carry on with the Ventolin till I was sure I was better.     
This was the first bad cold that I have had since having my transplant and I must admit it scared me,it brought back memories of what it felt like when I was breathless before transplant and having nebulisers of ventolin reminded me of my asthma attacks in the past.

The statistics that you are quoted before transplant are not encouraging 80% 1 year survival 50% 5 year survival and my consultant said something that stuck in my mind "If you get seven years from a lung transplant we would consider that a success." People think that a transplant is a cure, it is not you are swapping one condition for a new one one that needs constant vigilance, monitoring, medication and positive attitude to manage.Add a large dose of humour and faith in your God and your transplant hospital and you can help the stats in your favour. You can never beat the odds completely but I hope to have a good go!!!

I read a story this week about a woman who has become the longest surviving single lung transplant patient. She celebrates the 20th anniversary of what was the first ever operation of its kind. On May 18th, 1988, With only days to live, Vera Dwyer, Carrowcrory, Keash, had the history-making surgery in Harefield Hospital, London.
You can read the article here   
 Transplant can be such a tightrope to walk at times and some of my friends have slipped and fallen! This illness reminded me of this, how grateful I am to still be doing well.

Even though I was not feeling well I have enrolled in a gym. One of the trainers is a physiotherapist trained in cardiac rehab and I had my first meeting just before my Harefields appointment. I will start my attendance when my cold is completely gone.
The other thing that I have done is to get a new appointment with the Churchill to find out about my Bi Pap and if I still need to use it.That will be coming up in April and I am hopeful that I may stop using the mask each night if my CO2 levels are stable now.

While I was in clinic I was lucky to bump into Kerry Maletroit who was  looking good and still recovering well after her trip back to Jersey for a family reunion recently. She had a successful day at clinic and her lung function continues to improve.
One of my other friends was also in clinic, Dawn Bostock she was hoping for a bed to sort out some problems she had been having. She is now getting sorted out in Harefield, but due to the amout of people with  colds and bugs she had to wait for a while for a bed. I am sending out all my best wishes to her for a quick resolution of her problems and a swift return home :-)

Finally I had another competition at the camera club and although the picture didn't score well I thought I would include for your veiws it it is a local landmark and one my contributions to the "Industrial landscapes" competition,please let me know what you think of it. 

Sunset over Didcot B

  You can also see another of my winning pictures at the website for the club now that has been posted, it scored 20/20.

It is a typical Oxford picture looking out on Magdalen College bridge where the Oxford May Morning Celebrations happen. The view is taken from the Oxford University Botanic garden.
If you what to see the photo it is Here

Happy New Year to All

After my last post I was able to sort out my medication by Christmas day I had started to feel a bit better.

My stomach had settled and I was able to have a great Christmas dinner that I was able to cook all by myself and it turned out great:-)
I was reminded about how things were last Christmas and how I was still recovering and only able to help with the cooking. I was also to suffer a setback in January that nearly lead to my death due to CO2 problems this all seemed like a distant memory but I was still concerned about how long I had low levels of anti rejection medication in my blood and was that going to be a problem?
I was very happy that after a repeat blood test was sent yesterday I received confirmation today that the levels in my blood were back to a acceptable concentration to prevent organ rejection developing.

I thanked God.Then thanked the clinic staff for the information.

This Christmas was the first time that I had let alcohol pass my lips since the transplant.I had a beer with my Christmas dinner and although it nearly put me to sleep I loved it!

I will now be repeating the experience for New Year and while doing the weekly shop, I stocked up with a few cans for a celebration over the New Year weekend!

The other thing that happened today is that I had my last session of pulmonary rehab at the gym and because of the last six weeks I am starting to see muscles on my arms again! I am keen to continue into the new year now I have got a start on my fitness.
I hope to get back into swimming as one of my sessions each week as this was a particular favourite of mine in the past before I got unwell and I miss the freedom it gave me.
I hope that it will help me condition my legs as I am still finding it hard standing for any length of time without cramps and pain developing. My long term hope is that I will be able to loose the weight I have put on and walk much further than I can at present.

I mentioned last year that I didn't know what I would do with my health improvements and what I would do with my life.This last year was a long one and it has taken me a lot of the year to get settled and start feeling like my self again.

I am confident about my health again but for a long while I was not.

I felt that my body wasn't my own any more, and a large part of me is not my own but someone else's that I am doing my best to look after and nurture. 

This gift that I carry in me makes me so humble. 

 I was offered this second chance at life I want to do the best I can with it.

I have decided to look into voluntary work that I can do and see how my skills can be put to good use within some sort of charitable organisation. I hope that I can continue to work with the support group at Harefield Hospital. I will continue to support others still waiting for a transplant through social media like Twitter and Facebook and continue to develop Transplant News on G+ .
I will be attending a speakers training session in the early part of January organised by LLTGL I hope that this will enable me to share my story and so promote Organ donation registration.

Future is looking bright :-)

 

 

Finally I would like to wish all the readers of this blog

A Great New Year in 2012

  Health, Happiness, Dreams & Hopes fulfilled

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.