Saturday, December 31, 2011

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

Sunday, December 18, 2011

Bloody Christmas post

Christmas is approaching quickly and I am rushing to get things sorted before the day arrives.
As I mentioned in the last post I had concerns about my blood levels of anti rejection medication nothing that I could put my finger on, but I felt it needed checking since I stopped taking medication for the bout of shingles.

So I went to my GP surgery as I was advised by Harefields transplant clinic and provided a box and a form for them to use to send the sample.
The bloods were taken by the practice nurse who had experience of sending bloods in the past and they were sent to Harefields to be checked and reported or were they.......??
I rang the clinic on the Friday after the Thursday they were taken the blood had not arrived I was asked to ring on the Wednesday following,still no bloods.
I was most annoyed, I contacted the GP surgery to find out that the staff had no idea about what had happened and as the nurse who had taken the blood was away there was no way to find out I was informed.
I took issue with the head receptionist and asked who had sent it to the post office as it was an important sample and poor levels could compromise my transplant.I was informed that it had not been sent to the post office but it had gone in the Christmas post sent from the surgery! Mixed in with the Christmas cards and presents being sent around the country at this festive time of the year.
As you can imagine I didn't feel very festive about the prospect.

I made a appointment to have the bloods repeated the next day with the same nurse, and I made a complaint to the practice manager.I secured a reassurance from her that the blood sample would in future be sent by registered post for next day delivery. It seems that it costs extra to send, and because no one was authorised to pay it was just put in the normal post by the staff.
I was shocked and astounded!!

I just hope that some poor child doesn't come down an Christmas morning to find, instead of a present from Santa, a plain brown box addressed to Harefields immunology with a second class stamp on!!         

The blood arrived on the Friday and it was bad news.
As I suspected the levels were below the recommended minimum to prevent organ rejection!!
Thanks to the swift attention of the staff at the transplant clinic I was able to adjust the dose up to improve the levels in the blood to the therapeutic range with a daily 500mcg tablet addition. Then it was a mad rush to get a repeat prescription to order to get some more to cover the Christmas period.More bloods will be needed for levels before the year is done but I hope I can breath easy once more just in time for turkey!!

On a more positive note I had been contacted  on twitter by a lady wanting to interview someone with information about organ donation and experience of transplantation.I was happy to answer her questions about my experiences and pointed her in the direction of LLTGL and NHSBT for further information and other resources such as Donna's Dream a group campaigning for a opt-out system for organ donation as she was interested in this,due to the current debate on the subject.
She has now published her report on her blog and is encouraging people to sign the register.
This is being shared around The University of Central Lancashire in Preston and will form part of her work as a student of Journalism
I would encourage people to read it  
The lady is  Emily Childs and her blogs is "Someone had to Say It"
Please share it so that more people will become organ donors in the future!
So that many more people can enjoy a new life 
I would just like to say ✞ Happy Christmas✞ to all my readers
My prayers and respect go to my donor and his family 
who allowed me to celebrate this year in good health.

Friday, December 9, 2011

Good Times and Support

I have been very busy over the last few weeks
I have been out to the gym twice a week for my pulmonary rehab course and am finding it great to be able to push myself again. I am finding the leg exercises are the hardest on me but am slowly making friends with the treadmill and exercise bike although I think that it will take sometime to get fitter after the inactivity since having shingles. The people on the course are great and I am enjoying getting out.
I have also been successful with another picture in the most recent competition at the camera club the subject on this occasion was Doorways and Gateways and I scored 20/20 for a picture taken looking out of Oxford Botanical gardens towards one of the Oxford colleges while two bikes were passing a typical Oxford sight I was very happy with this result and I have included the picture for you to see.
Gateway to Oxford Life

I did put another picture in but it scored less well but got a good response from the audience the judge felt that the doorway itself was not interesting enough to warrant a high mark It was of a piece of local graffiti which has since been painted over but impressed me a lot with its Oxford connection.
Alice was here 
  Please let me know what you think?

The other thing that I did this last week week was to attend Harefield Hospital for the second meeting of the Harefield support group.I have been involved in. 
Nicola Langlands who runs Look beyond the Heart is the driving force behind the group has worked with Harefields management to organise a meeting room. With support from Harefields Nursing staff, patients who have been attending clinic appointments plus patients on the transplant wards have been able to share their experiences in a informal setting and also been able to give feedback about their transplant experiences this has allowed people at all stages of the transplant experience to ask questions of others, network and make new friends
To allow the communication to continues between meetings and as a place to share information and support online Nicola has set up a Facebook page 
I am one of the administrators and at present the group is a open group so people can join upon request.
It will be open to all people who have contact with or experience of the UK transplant services we hope that it will grow into a valuable resource for everyone to share information and offer support to one another so please join us soon :-)

While I was at the support meeting I was able to meet a several people. two whom I have mentioned in this blog in the past.
  The first one was Justine Laymond
She was up for a clinic appointment and will soon be sailing around the world on the Clipper Around the World Race as part of a crew of people raising awareness of transplantation.
She is the first double lung transplantee to ever attempt this gruelling race.But as a multi medal wining Transplant games participant she is looking forward to the challenge.
The second person I was able to meet after following her progress for so long was Victoria Tremlett
after a four year wait I was so very happy to hear that she had got the lungs that she had so desperately waited for. She had returned to clinic as part of her follow up care and I was able to to have few words with her and wish her well with her continued recovery.

I also took opportunity to get some bloods taken and sent of to check the levels in my blood with Christmas approaching I wanted reassurance that I would not need to attend until the new year.
I had a small amount of swelling in my legs but I was happy to find out that my blood work showed improvement since the last sample had been taken. I am presently waiting for a result from my anti rejection medication levels but feel much happier to breath easy for Christmas, can't wait!!