Wednesday, 15 May 2013

Wonderful News

Feeling bright!

Since I published my blog last week, we had the wonderful news that my friend Anne got her phone call on Thursday to say they had got a match for her new heart and lungs. She went into the operating theatre very early on Friday morning and we had what felt like a very long wait during Friday day time to hear any news. Again, like when Sita had her transplant, it really brought it home to me what the family has to go through while they wait for news. Anne's brother kindly updated us all that her operation had gone as well as it could and by Sunday morning Anne was sitting up in bed asking for Jelly Babies. By Monday evening she had even managed to find the WiFi and was posting on facebook and having a chat with me and a joke with Rob. I found this rather amazing given that she only had her transplant on Friday and am so pleased to hear that things are progressing well. She is still really tired and has a long recovery to face now and Rob and I, together with many others are wishing her all the very best of luck for her recovery. We are hoping to go and see her soon if she feels up to it.

Swirling emotions
Rob and I have found it really encouraging to see that 'yes that phone call does eventually come' and probably when you are least expecting it, although you are expecting it all the time. When I first went on the transplant list, I felt very isolated and on my own, as I didn't know anybody else with my condition who was on the transplant list, let alone anyone even on the Transplant List, but soon I was joined by Stacie, then Sita and Anne and we all became quite close because we all had Pulmonary Hypertension and we were all able to help one another through the traumas of various medications we had to deal with, dealing with the illness itself and living on the Transplant List. I find it really encouraging now, since we all met up last October, two of us have now had our transplants. I don't think that is bad going in just six months.

Since we met up in October we have all managed and I think I can say thanks to each other, to have more contact with lots of other transplant patients and we have become part of the 'Transplant Community', who give each other much support and along with the support we get from the PH community, this is invaluable.

As some of my friends with PH have come off the Transplant List, more have gone on it too, like Hazel, who has also been waiting for a new heart and double lungs for quite a few months now and there are some of my friends going through the frightening process of Transplant Assessment, like Lynsey and Karen and we are fully aware of the all the angst they will be going through at this time. So we desperately need to keep fighting to get the numbers on the organ donor register increased, they don't go down just because a transplant has happened. The statistics still stand that over 1000 people a year die while waiting on the Transplant List and three people a day are dying because there are not enough people on the Organ Donor Register.  
Ebbing and flowing just like the numbers
There were 16 people in the UK waiting for a heart and lung transplant when I first went on the register in 2011 and there is currently still 16 of us waiting. Waiting to get heart and lungs is becoming increasingly difficult as the numbers waiting for hearts are increasing and the numbers waiting for lungs are too. Currently they stand at 196 waiting for a heart and 227 waiting for lungs, so you can see the difficulty in needing both heart and lungs and the miracle of it when a set of heart and both lungs become available.

Just waiting, waiting, waiting
There are many others waiting for Transplant whom we don't know and they are waiting for different organs for all sorts of terminal conditions that they are suffering from. Over six thousand people are waiting for a kidney transplant and over two hundred waiting for kidney and pancreas transplants. There are also over four hundred people waiting for livers. The latest figure of all those on the transplant list is 7336, which is a lot of people and if you add in all those affected such as family, friends then this can multiplied ten fold. This suffering can be reduced if more people would sign up to be organ donors.

Currently over 90% of the population say they would be happy to receive the gift of life and take an organ if they found out they were dying, yet only 31% have actually signed the organ donor register.
Although many more people have now signed up, this figure has only increased by 1% in the last year. There is much more likelihood that you may need an organ, rather than have to donate. So a very sobering thought for those people who just can't be bothered to sign up.

If you were in the eye of the storm you would take one gratefully
Remember to tell your family your wishes if you are an organ donor, as family refusal rates are still high when a family doesn't know whether or not you would want to donate. Over 40% of families refuse to donate organs when they do not know their relatives wishes. Around 90% consented when their relative was signed up to the organ donor register and their wishes were known.

Just in the lap of the gods
I have been waiting for my new heart and lungs for over 600 days now, 605 to be precise. There is no queue or bottom or top of the list, it is just a simple case of waiting for a match which is best for you, matching your weight, size, blood group and antibodies. So it is somewhat of a lottery and you sometimes feel like you are just in the lap of the gods, but when you are ill enough to be on the Transplant List, there is no alternative than to keep hoping and believing that your day will come and I never think anything other than it will one day when the time is right. Meanwhile I just keep trying to live life to the full and enjoy all things I love in life.  

One of the first things my friend Anne said was to remember her donor. There wouldn't be a Transplant List or a remote chance of Transplant if it were not for the people who were prepared to give the ultimate gift of all, the gift of life, and for their families, who in their most distraught and darkest moments gave their consent to go ahead with that most precious gift.   

New life just waiting to emerge! 
And now they're beautiful swans

There are several facebook forums where you can get support for both PH and Transplant, they are private groups, just look them up and request to be added:

If you want to sign up to the organ donor register click on:

You can help us get the Government looking at organ donation by signing the epetition: 

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