A Successful National Transplant Week

I think this year's National Transplant Week has been a great success. There have been stories and news about organ donation and transplant in the papers, on the radio and on the television all week long. Hopefully they will help to raise awareness of all the issues regarding transplant and organ donation and get people thinking about it and discussing it with their families.

I think the the theme of 'spellitout' has been a really good one and believe campaigns like this are so important so people can make their own informed decisions on whether organ donation is for them or not. It is probably unlikely for families to find themselves in a position where they will need to decide whether or not to donate a loved one's organs. At least if they have had a discussion about it, then they will feel more able to make a decision on what they feel is the right thing to do for their loved one and for them as a family should they ever find themselves facing this agonising dilemma. 

It was great to take part in such an important campaign and fantastic to see how the whole 'transplant' community rallied together including donor families, transplant recipients, NHSBT and transplant hospitals. We also have to thank the press, radio and TV for so actively supporting us and my special thanks go to BBC 3 Counties Radio and the 'Weekly News' newspaper for giving me the chance to play my part. 

We finished off the week by celebrating at a special event at Papworth Hospital held especially for National Transplant Week. For me it was a celebration of having been lucky enough to receive my transplant and getting the most precious gift of my new heart and lungs. For the last two years I've attended the event as a patient on the transplant list. Last year I said to one of the nurses, who had organised the event, that I would really like it if I could come back next year having had my transplant. Well I got my wish and my dream come true thanks to my wonderful selfless donor and her generous family. 

My donor is forever part of me on my journey through life now. I've listened to several 'donor' families speak about their decision to donate this week and it has felt both heart warming and humbling to hear them talk of the comfort it has given them. I listened to one mother who really moved me when she said on the radio that she wakes up every morning and thinks of the recipients and them making the most of their new lives. This is where 'donor' families and 'recipient' families have an intangible link even though we do not know each other. Every morning when I wake up I do a very similar thing, I think of my donor and the new and transformed life they have given me. Not only have I been given the gift of a second chance at life, but they have given me the gift of knowing how delicate and precious life is. The gift of knowing I need to make every second count. 

National Transplant Week 2014 #Spellitout

Today is the start of this year's National Transplant Week. Currently there are around 7000 seriously and terminally ill people waiting in hope for a life saving transplant. While they have to wait their condition needs to remain relatively stable or else it is likely they will become too sick to cope with a major transplant operation. 

Because there is a shortage of organ donors, the waiting time can be too long and some patients don't survive. Currently 3 people a day die while waiting for a transplant. I was one of the lucky ones and although I waited exactly 2 years, 1 week and 1 day, I got my life saving transplant. That means while I waited 2214 other patients lost their lives. Yes, absolutely shocking isn't it? 

One reason for the shortage of donors is that less than 30% of the population have actually signed up to be on the organ donor register, although over 90% of the population agree they would accept an organ if they needed a life saving operation. 

Family refusal for an organ donation to go ahead because families do not know their loved one's wishes is also a huge barrier too. When families have had the discussion and know their loved one's wishes then they are much more likely to consent to organ donation. Only 31% of families give consent in these conditions, whereas if families know their loved one's wishes this is raised to 90%. It is so important to let your families know your thoughts on organ donation and so important to get familes talking about organ donation, so the aim of this year's National Transplant Week is to 'Spell it Out' and get families having that 'discussion'.

We volunteered to help NHSBT with their campaign as they were looking for volunteers who have been 
deeply affected by organ donation and we had an interview with the Weekly News, which is a weekly national newspaper and our story was published in Saturday's edition, together with a piece from NHSBT and hopefully it will have reached a lot of readers and got them having that all important discussion. 

 

Last Friday we were invited to take part in a radio show about transplant at BBC 3 Counties Radio in Luton and tell our story about my illness and transplant. The show was broadcast on Sunday and featured others speaking about organ donation from NHSBT, University of Beds and also another transplant patient, who had received a kidney from her husband. It made an interesting programme highlighting many aspects about organ donation and transplant. Again, I hope it reached many listeners, who might now have that discussion with their families. 

http://www.bbc.co.uk/programmes/p021ggcd

If you want to see my story, other real life transplant stories, find out more about National Transplant Week or register to be an organ donor click on the link below: 

http://www.transplantweek.co.uk/personal_stories/case_studies/kath.asp

Don't forget if you want to be an organ donor then tell your family! Spell it Out! 

Nine Months On ...

It's July now and nine months on - I cannot believe how quickly the time has flown. I've been really lucky and made lots of excellent progress with my health over this last few months and I've managed to achieve so many things I had wanted to do much earlier than I ever dreamed. As a family we have really tried to enjoy ourselves and make the most of things while the going has been good. 

 

During this last week or two I seem to have hit some difficulties, but I've been ready for this to happen at some point, as the effects of being highly immunsuppressed have begun to take their toll. With one problem or infection or another I've have been to and from the pharmacists, the GP, phoning the transplant team, to the 'out of hours' doctors at the local hospital and back round the houses again. 

It happens  - having to go to emergency doctors and A&E sometimes and is part and parcel of being terminally ill or transplanted. I've been here before several times and it is quite a stressful situation to be in. You have a major medical background that is only properly understood by the experts in that field, none of the usual services are available for at least 48 hours and as soon as you mention your condition, the poor person who has to deal with you is frightened to death! 

Somehow you have to play 'doctor' yourself and try and guide them on the dos and don'ts, but you aren't a qualified doctor and you could really do with someone who knows what to do. I know many of us who have been in these situations and we keep ending up in them time and time again. I really don't know what the answer is other than to get what help you can and hope it works at least until you can get the proper help. I think we all dread it happening, I know I do. 

I ended up having to go back to Papworth on Monday and my medication has now been altered temporarily to see if that will help. My white blood cell count is low and one of my immunsuppressants has been stopped just for a week so that my levels may increase again and I can fight off the problems. I've also been put back on some medication that has recently been stopped in case it is CMV virus and I'm waiting to see a specialist at the Lister Hospital too as a precaution if all this doesn't work or suddenly worsens. 

So after a frought week and weekend we now have a Plan A and a Plan B and I'm hoping all this will do the trick and get me back in tip top condition. I have been warned it may take time and I'm having lots of regular blood tests to make sure everything is on track. Today has felt easier just knowing that everything is being monitored closely. I have just been resting, reading and enjoying the lovely weather in the garden after all that. 

Some really positive things have also been happening too. I had a phone call from Woman and Home Magazine following winning the 'Seize the Day' competition and they have asked me to be on their panel at one of their reader open evenings in October, so I can speak about my PH, transplant and trying to make the most of life. It will be a fabulous opportunity to promote awareness. 

We are also building up to National Transplant Week, which starts on Saturday. I've been working with NHSBT on some things for this. Last week I did an interview for the Weekly News magazine and this will be published this Saturday in their health section, so look out for this. On Friday I've been invited to BBC 3 Counties Radio studio to do an interview for their Sunday show 'Shrink Wrap'. I'm hoping National Transplant Week will really help to get more people to think of being organ donors and have the discussion with their families. 

A real highlight earlier last week was going with Sarah to order her wedding dress, she finally decided on 'the one' and for me it was another of those milestone moments and all thanks to one very special person, my donor. These moments are so precious. 

More on National Transplant Week July 2013

Afternoon tea in the marquee

We are now at the end of National Transplant Week 2013 and I think it has been a very successful week for raising awareness of the need for more organ donors. Rob and I managed to feature in the local Hertfordshire Mercury, which has coverage throughout a large area of Hertfordshire and hopefully the feature may have encouraged people to have the discussion with their families and sign up to be organ donors. Here is the link for the article:

http://www.hertfordshiremercury.co.uk/Health/Mercury-1000-campaign/Families-backing-organ-donation-campaign-20130709151429.htm

Rob also tried to encourage his work colleagues to sign up too through sending a simple email; he's got at least about twenty more people signed up to be organ donors. Quite a few said that they had thought about doing so, but just hadn't got round to it, which just goes to show one little prompt and many people will sign up.  

National Transplant Week got much TV, radio and press coverage again, both local and national and it was good to see Papworth on the local Anglia news again promoting National Transplant Week, the link is below:

http://itv.com/news/anglia/2013-07-10/appeal-to-east-of-england-during-national-transplant-week/

We were lucky to be invited to a National Transplant Week event, which was on Thursday, a gorgeous sunny day and held in a marquee in the field area that leads down to the duck pond at Papworth Hospital, where they gave us an update on what is being done nationally and what they are doing to promote organ donation and get more organ donors. It was very helpful as we got to to ask questions to the consultants and team about all aspects of transplant.

One of the main questions from our table, where three of us are waiting for heart and double lung transplants, was why there were so few heart and double lung transplants taking place - only two were done at Papworth in the last financial year -  and was anything being done to help this particular situation. The answer was that the main reason for this was the big shortage of organs and the fact that two lives could be saved instead of just one if the heart and lungs were split and even three lives could be saved if the lungs were split. So the answer is to keep on trying both nationally, locally and personally to find effective ways to increase the amount of people on the organ donor register. The more donor organs that are available, the more chance there is to get a transplant requiring three organs or a transplant of any kind.

Beautiful grounds at Papworth

There has been a lot of work to increase the number of specialist trained transplant co- ordinators in hospitals throughout the country so opportunities for the transplant process can be maximised and we are only just beginning to see the benefits from this. A major hurdle now is the lack of A & E beds, which is a big issue that needs addressing in this country and mainly not for the transplant issue. Many people are not able to be treated properly in A & E in the first place as there are not enough beds for hospital admission compared to demand and lives are being lost. This in turn impacts on the transplant process too, but needs addressing primarily to save the lives of sick people who needlessly die waiting for treatment. Not a good thing to be hearing about when you are ill with a condition that requires you to go to A & E at times.  

The Transplant Team

There are several controversial initiatives being discussed at the moment, firstly last week, the opt out system in Wales was passed and is to come into place in 2015, which has aroused much interest, because there will be presumed consent if someone doesn't agree with donating their organs, but hasn't been bothered to actually opt out. Then, this week the NHSBT, very aptly during National Transplant Week, announced their five year plan, which included considering giving people who are already registered as organ donors priority on the list and having the ability to override the families' wishes should they refuse to donate a loved one's organs when they are a registered organ donor. All pretty controversial stuff, but it has got a lot of people discussing organ donation both personally and in the media, which is a good thing for the moment whatever happens in the future. As they say all publicity good or bad is publicity and gets people talking.

If you want to sign up to the organ donor register or find out more about NHSBT's new strategy click on: www.organdonation.nhs.uk/

Three ladies in waiting

We had a good time at Papworth, it is always nice to be there for something other than hospital appointments or hospital stays and all the prodding and poking that goes with it! We got chance to meet up with Stacie and her twin sister Megan and Bernice joined us too and we got to chat with quite a few of the transplant staff.  We had a lovely afternoon tea and for some, a glass of champagne and the event finished with a band, where two members had had double lung transplants, which was really encouraging.

Early evening entertainment

Ever wondered what to do with a spare sharps bucket? Champagne on ice anyone?