Good Results At Tx Clinic

Despite my negative view about the cause of my pain in my last post it seems that the doctor was right about the cause. It was a case of muscular pain which can be worse after you have had shingles he informed me.
Therefore I have decided that I will restrict myself to just I mile (64 lengths) per session of swimming and a max of three times a week for the present. I aim to build up my stamina by adding more crawl in each session.This allows me to do my sessions in about 1.5 hours.

This last week I attended Harefield Hospital for a check up and was seen by Dr Carby. 

I had the usual blood tests,lung function, X-Ray and an additional ECG done. I am now over two years transplanted this was to check my heart was functioning well.

He was very happy to hear about my progress with the swimming and I asked him about holidays, his advise about long haul flying and destinations that I might need to avoid should I travel.He was very supportive and said as I was doing well he had no problems with most places.Food poisoning would be the biggest risk I might face due to my immunity being reduced. He advised me that good travel insurance that would fly me home quickly if things went wrong would be a must.In Europe most people had no problems and some don't bother with insurance. But my thoughts are for far distant lands, America, Japan and Australia so I will have to plan well.The staff at clinic provided me with advice about vaccination and provided a list of travel insurance firms that others had use in the past which was great :) 


How did I do?
My Blood pressure was normal which is good as it had been high.
My Weight had gone down by another 2 kg
My Blood tests showed normal levels and were stable.
My Tracrolimus levels were 5.0  ng/mL  an ideal range.
My ECG was normal
My Lung function was up (due to the swimming I'm sure)
My Xray was normal



I was given four months off clinic and am due to return in March:) The only thing that didn't go well was the weather which was lousy there and back raining constantly, the whole process left me worn out but happy!!

After the Storm

Talking about that we had another competition at the camera club this month. 

The subject was "Weather"

 I put a couple of pictures in as digital entries, but they failed to gain many marks due to the high level of some of the entries. The highest score was 14 for the  picture above taken from Glyne Gap looking toward Beachy Head Eastbourne . This was taken during the summer when we had our holiday in Sussex.

This is a picture that represents for me the end of a storm in my life that was my illness and then my transplant.

I am finally now feeling like life is settled again. 

I am looking forward to a great new year and what it may bring

Finally things have been sorted out with my mother's estate and my brother is in the process of sorting out her house to rent. The financial issues have completed and I will be moving into the new year with less money worries. It will be so hard to spend my first Christmas without her this year and we are both feeling the loss now that everything is over with.
I just know that she will be with us watching over us and our families this festive season and although financially things will be easier now we will still be missing her a lot and I will be attending church to light a candle in her memory over Christmas.

I will also  light a candle for my donor without whom this festive season would not have been possible for me or my family.  

Stuck, don't know what present to give this year  

Give the gift of life 

Sign up as a organ donor Here

Three Year Wedding Anniversary

Time is moving on quickly of late with lots happening in a the space of a short time. Today was my third wedding anniversary, remembering the day I married is hard. 

I had to use my oxygen before I was able to get out of my car and walk the short distance in to the Oxford registry office from the disabled spot outside. Our simple ceremony with just our our two witnesses was over quickly and there was no party.I needed to use my Oxygen all the way home afterwards.

It marked a turning point in my life. 

I had just gone on the list and had received two calls within one month of being listed  

First call   Second call 

I had realized that I might not survive the process of transplant or the wait and wanted to put my affairs in order and on those first couple of calls I was very worried about outstanding issues with my pension, tenancy and provision for Liz and my children.

Three years on and life is totally different 

I am so much better and looking forward with hope, thanks to the donor who has given me this chance to live a new life and honor his memory.I am now able to do things with my wife and children and support them like a husband should.
Liz and I met 25 years ago and always said that we would get married, but just didn't get round to it.Life moved on, we had kids and still ,despite me going down on bended knee years ago in the middle of the staff social club at my old hospital,it hadn't happened.
I was staring death in the face when we finally said "I Do" and it all became clear, Love , friendship and happy experiences are the things that matter.
I really hope that I will be able to give my beautiful wife many more years of all of these things

I love you so much Liz and I'm so glad that you have been there with me though all these 25 years. 

You are my rock and I hope that the years yet to come will be even happier

Since my transplant lots has changed and just last week we finally placed my mums ashes in her final resting place in the local church garden of remembrance in St Mary the Virgin, Kidlington. It overlooks the open countryside and I finally felt a sense of peace for her since her passing. I draw comfort in the fact that there will be a space for my ashes with my mums should I wish it when the time comes.

      

I was forced to think again about my mortality as transplant is extra time not a total cure.Because of the medication I take and risks with immusupression my time will shorter that it may have been.

I hope that I have many more years ahead, but I have resolved that the next few years I will going forward firing on all cylinders and making the most of the health I have got now.

I will be looking at holidays for next year and some travelling that I have put of for a while.I missed out on Glastonbury tickets this year:( But I am looking into more transport and Christmas will be a big one this year as Liz will be off. New year I am going to try to  have a proper night out if I can, Liz will be working on 1st.But before that my daughter will be turning 18 (this month) and Liz has a birthday in November so I will be looking forward to spoiling them both.

finally I have entered my first competition at the camera club this month and so I thought I would include the two pictures that I have entered

Hang On A Minute Lads, I've Got A Great Idea....

Red Arrows over Hastings seafront 

They were both taken in Hastings in the summer fingers crossed they do well, I will tell you how they do in my next post.    

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.

♥

Things Are Getting Better Now

I am feeling much better now and feel that the shingles has finally gone!! 

Good things have been happening with my photography and I have started a new page on my G+ account. You may have seen this on the widget on the right hand column of the blog.

Many people are starting a business page to promote their photography or company but I felt that I would like to share information from all over the world about transplantation, developments and up to date research.
The other function of the page is to offer somewhere for people to publicly state their support for transplantation and Join a group for transplant advocates at
Group As a listing of people on G+ who have signed the register.

You can visit my new page Transplant News and I would love it if you +1ed it share it and add the page to your circles so that you will be able to get the news that is shared.


Other things to report is that I am about to start my pulmonary rehabilitation  course again on Friday with a assessment of my fitness then I will start the six week course on the Wednesday and Friday the following weeks this is happening at the local gym and although I started the course once before I had to stop because of the case of shingles that I got :-(   I am looking forward to it and will be on it till early in January when I hope to continue with my fitness improvements with the extra impetus of new year resolutions to fire my enthusiasm.I have yet to brave a swimming pool although I have been told I could as the extra weight I have put on is a bit of an embarrassment.

I am also hoping to go fishing again after getting the okay from Harefields team at my last appointment might be that i try a bit of pike fishing first with spinners and plugs.I realised that the last time i when fishing was back in 2007 when I caught this pike with my son

  I am hoping now I can breath a bit better I will be able to catch a bigger one!   

My photography is coming along well and in the first competition of the season I scored two 17s with my first two entries I thought I would include them for your comments 

dragonfly

This was taken at the Oxford University arboretum local to us, when I was taking pictures of the fall

Steller's Sea Eagle

This massive eagle was flown at a local event near us in the town as part of the attractions and stood three feet tall it had talons the size a child's hand a very impressive bird can be seen flying at Warwick Castle which is were the hawk show is based

One final bit of good new is that one of the pictures that I took on my holiday before the transplant is being used in the local camera club regional competition "The Rose Bowl" run by

CHILTERNS ASSOCIATION of CAMERA CLUBS in the first round our club won the round!!!  

I have been told that my picture scored highly at 19/20 I have included a copy of the picture for you to see it was called "winging it "

  let me know what you think?

If you like these pictures I have been including these and others in my G+ photo blog along with other inspiring pictures that I have found around the internet. 

You can see them at  Marks Photo Blog

The last bit of nice news is that one of my photos is being published in a calender being arranged by a couple of the club for sale to members if you want to see the photo it is on the club website 

Wallingford Photographic Club 

Last Clinic Before Christmas?

After my discharge on Wednesday I have been dreading attendance at clinic again in case the infection had reoccurred or other problem might have developed that might affect my chance to stay at home for Christmas. So I woke up today with some concerns. The weather did us no favours, the temperature was -11C snow on the ground and ice on the road and to put a lid on things no water in our taps frozen pipes? I rang the water company who told me there were no issues with leaks or interrupted supply local to us.I woke the kids to tell them asking them not to use the water till the pipes thawed and we prepared to leave.I rang the clinic to warn them I might not be able to get to them today, but would try anyway.
We were lucky with travelling and got to clinic just after 10am and was able to get things completed early due to the fact that a lot of people had not made it in.It took a while to get some blood done due to my damaged veins
that have been quite overused of late.
I was happy to find out that my lung function had been maintained since my last visit and the X-ray was okay doctor had encouraged my to exercise and said he hoped that my lungs would improve and the capacity would increase then I was told that I should attend in three weeks on the 10 January I was really quite happy but apprehensive we then had to get some medication from Pharmacy and I asked for some dressings for the small wound on my scar that is healing well.I can start to see a end to the process of urgency that has dominated our attendance since the transplant.
The journey home was less than fun with no water for the windscreen wipers and night approaching. When we did get back we went out to get some supplies from the supermarket and after taking back the DVDs I had to return we got a pizza for tea finally able to rest we both collapsed and realised how tired the day had made us. Luckily the cold water supply had come back on which was a great and well needed end to the day!
Roll on Christmas!!