Organ Donation and KC!

[Sweet]

(((Friends)))

Hey there! Today I went to an Organ Donation Study Day in London which was run by the North and South Thames Transplant Coordinators. It was aimed at 'A & E' staff who would be in a position to start discussions with the transplant team for patients who could donate organs or tissue. It was an excellent day with great speakers and presentations.

There has been a lot of discussion here about us being able to donate organs or blood post corneal graft along with professional answers differing, so I asked the panel a few questions relating to this.

We are NOT allowed to donate blood or organs, which every transplant patient is unable to do as well. I was told this when I phoned the Organ Donation number after my graft, although some have had a different answer here. This is due to a risk of CJD which they cannot rule out at present, though maybe this could change in the near future.

We can however donate tissues. This means that we could still give a lot and help many people. Skin can be taken for life saving treatment for patients with major burns. They lose a lot of fluid through the burned skin and so need an emergency temporary replacement from a donor. We can also give bones or tendons which is equally very much needed. There is nothing bad about this, they remove cells from the bones, they do not damage anything in the process. Everything is very dignified.

I do not understand how the Organ Donation list is run or complied and need to contact the authorities on this. I have been registered since the age of 16 so am not aware if they have access to my hospital records so would know that I had a graft at 28? I do carry a donor card but need to know if they are sure on what they could take! It would help if we as a group contacted them and asked this.

Corneal transplants are the most common type of transplant in the UK with 417 having taken place in Moorfields between 2005 - 2006. They can be kept in storage for 7 - 10 days and a DNA match is not required. I know that a lot of people who have had a graft are happy with the idea of donating organs as they have gladly received a transplant. Many of us might want to give something back when the worst happens.

I also spoke to Frank Larkin who was presenting about corneal grafts, he is from Moorfields Hospital and I have met him once before. I have given him my details and said that I am happy to talk about a patients perspective on corneal grafts and how successful it can be when he next does a talk! I am hoping to make organ donation a more positive thing as every year the number of people who donate is falling.

With KC numbers rising we need more donors to be able to have grafts in the future! As both an 'A & E' nurse who is able to contact the Organ Transplant Team to having had a corneal graft myself I am in a good position to be proactive about this.

Please can I ask for you all to think about donations and how many of us here have had our sight restored or greatly improved from the sad events of another. It only takes a few minutes to register but it could save many peoples lives or improve their quality or life.

As a group of patients with a medical condition which could benefit from a transplant, we need to spread the word to others. It is very easy to carry a donor card, but even if you don't we can check on the register and respect your wishes.

It is just something to think about, though I am sorry if I have upset anyone.

Thanks and take care all, love Sweet X x X