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

Good News and Bad?

As promised 

I thought I would update people about how the first competition went at the camera club

As you will remember I had put in a couple of digital pictures. Despite my intention to do some prints for this time life has been hectic and therefore I was unable to get round to printing and mounting up some in time.
I am happy to report although one of my pictures did a moderate 16/20 the other picture I entered scored a respectable 19/20
The picture that did so well was  "Red Arrows at Hastings Seafront"

I was really happy as it reminded me of my holiday and encompassed the feel of summer and Pirate Day on Hastings seafront when it was taken 

We have been quit busy as the kids have been off college for half term this week. 

Due to the influx of children off school I have been finding it harder to swim lengths in the pool.There is a wave machine in the pool and during the holidays it is switched on regularly causing me to have to stop every half an hour.But as there are more public sessions there is some compensation.I went out and got a hair cut to cut down on time taken for my hair dry after swimming and I like to keep my hair short anyway.

Both of the children have been occupied over the half term 

Alex went off to the Excel center with his mates to MCM London Comic Con and had a great time. 

While Ellie who reached her 18th birthday at the end of  October went off to Berlin! 

She organised the trip for the Student Union and did a great job:) The only hiccup was a delay with her passport application. Due to new rules being applied by the government  she was required to attend a interview which nearly stopped her going as we weren't sure she would get her passport in time!

 The week has been a bit stressful for me and Liz sorting all this out and during this I started to get a pain develop in my right shoulder I had hoped that it was a muscle strain or that I had slept badly but now I suspect that it maybe the start of something else as this is how it felt when I had shingles in September last year. I have been to the doctors and he has given me some Tramadol to use and now it is just a matter of waiting to see if I develop the characteristic rash. That will doubtless lead to a stay in Harefield Hospital on IV anti viral drugs for a while.I am keeping all my fingers crossed that the doctor is correct that it is muscular but I won't hold my breath on that one!!

Finally I have some good news to share regarding the camera club

 we have a new president of the camera club it is 

 Brain Tufano BSC

Trainspotting, Shallow Grave, Billy Elliot and  Quadrophenia

If you want to know more about him see the following links

Life of Brian

Brian Tufano IMDb 

     It is so great that he will be part of the club and able to support and encourage us with his years of expert knowledge and experience

Also this week we had a excellent presentation  by one of the top Audio Visual photographer 

Ian Bateman LLB,FRPS,MPAGB 

who showed this slideshow presentation which I have posted here

18 Months Of New Life With New Lungs

I have now been transplanted 18 months and time has rushed by!!

It doesn't seem that long ago that I was kissing my wife and children goodbye at the operating theatre doors not knowing if I would be saying goodbye for the last time.... and then waking up to a new life.

This last week I have been spending time with my children as they are on half term If it wasn't for my donor I would never have made it to this point. I have been able to see them through to the finish of their education at school and I am able to watch them move on to further education,  my daughter is now half way through her A levels and looking forward to university. While my son is has a offer to start a course in furniture making at the local further education college in September and is really looking forward to it.

I have also had the pleasure this week  of celebrating 25 years since my wife and I first met.

She was a general nurse student on her placement in my hospital, I was a third year student looking towards my final exams. It was her last night at the hospital before returning to Eastbourne where she was training when fate brought us together. We spent that evening  in the hospital social club getting to know each other, it was love at first sight.

 We have been seeing each other ever since and  I love her more with each day we are together

We married while I was waiting for my lung transplant and will celebrate our third anniversary in October, just after my second lung transplant anniversary       

I cant say that it has all been a easy ride I had some problems early on and then got shingles last year and it has taken a while for me to feel myself again and get my confidence back after a long period of chronic illness. I had a long list of things I would do,some of which I have done some are yet to come. 

 The most important have been the little things like; 

• Walking up stairs without worrying about breathlessness.

• Not needing inhalers for my asthma that I suffered from for most of my life.

• Being able to go to events and activities with my children,without them being embarrassed about my oxygen tanks and breathlessness,

• Cooking food on a barbecue or even being around a barbecue without choking and coughing.

• Having confidence in my abilities to look after myself again 

• Being able to have a bath without help

•  last but not least, being alive and not scared that I will die 

All these things are the result of a courageous man who thought about others and his love ones who consented to his wishes..A 45 year old man who I will always be eternally grateful to, signed the donor register and decided that that someone should  live after his death.

I am one of those people!!

Other good things that have happened this last week is that I entered the annual portfolio competition with the following pictures 

Fun at the Fair

It was judged the best digital entry and won first place!!! 

I was so happy this is the second time in four seasons that I have won first place in the digital portfolio:) 

First time I won was my first year in the camera club I have included the pictures that won "my village" in 16.4 2009 before my transplant 

The girl in yellow dancing around the maypole on the right of the picture is my daughter when she was much younger at a school fete at her primary school

I would also urge you to check out the "Transplant People Daily" available by scrolling to bottom of these blog posts now, where you will find an embedded widget.

If you like it please feel free to subscribe:)

Finally I would like you to consider Organ donation if you have not already.help someone like myself or one of the great people I follow on this blog to live a happier and more productive life

You can click the heart here and register now in the UK

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.

♥

Late Birthday Present- Pain in the Arm

As I mentioned in my last post I had my birthday at the end of August a quiet affair with the family to mark my final year of my first half century.I had not long got back from my holiday in Sussex so made do with a nice meal rather than going out and getting blind drunk and painting the town red (just joking many years since I have done that!)One thing I had not mentioned in my last post was that during my holiday I had been suffering pain in my arm. This was I thought the result, of the exercises I had been doing in the gym as part of a pulmonary rehab course I had joined just before I had left for my holiday.The pain lasted till well after the holiday and so I found myself attending the GP's on my Birthday for some pain medication. Because the pain was not improving this should have been a clue. My GP suggested it was a trapped nerve and prescribed  DF118 they did help but the pain was still apparent.

We went shopping at the end of the week and when I got back my mother commented that I had rash on my shoulder I put some antiseptic cream on it and thought no more of it. Over the weekend though the rash developed and got very red and tender and the pain I was having got worse then it dawned on me why. I had developed a case of Shingles (Herpes Zoster).
This condition is something that is a risk for immune suppressed transplant patients and older people are more prone to it, guilty on both counts! Then as eating a  was packet of Bombay Mix and considering my next move I felt my front tooth fall out what Joy!!! The tooth was a crown and would be able to be refitted the next day I hoped, but as the next day would involve a trip to Harefiends Hospital for treatment with anti viral drugs I was really fed up.The only positive was that my temperature, blood pressure &  lung function were not being affected. I rang the hospital and spoke to the on call doctor who advised me to attend the hospital early the next day as the condition can become very serious when the immune system is suppressed and responds best to early treatment.

The next day was rushed and stressful for both my wife and I.First thing I rang the dentist's surgery and found that the earliest appointment was for 10.30 I rushed down to town to have the crown fixed back in my jaw curing the lisping voice that had developed as a result.
Then I went back home and packed up a bag , my Bi-pap machine and  medication with a vague hope that I might not need them but I realised admission would be a high possibility.I rang an cancelled the appointment that I had to review my Bi Pap at Churchill Hospital that day and finally I rang a friend who would be visiting on the Tuesday and suggested we meet up when things were sorted out.

I got to Harefield hospital and was asked to wait in a treatment room as I could present risks to other transplant patents attending the clinic. When the doctor saw the rash, which had by then developed into a mass of blisters, he told me that admission was inevitable and by the end of the day I was back on F ward.
I have been on the ward for a couple of days and the pain has become quite bad and I am glad to be here and receiving treatment with IV drugs which will continue for at least 10 days happily I have managed to get my laptop into hospital so I will keep everyone updated during my stay

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