Di
x

I am so pleased that Hazel has told me about this web site – I met her at one of our clinics, as I too am due to give a kidney shortly.

I am giving it my younger sister. The date was supposed to happen on 26th Jan but it has been slightly postphoned which is a little unfortunate as I found that I had syked myself up for it – but hey ho! Just waiting patiently for a new date to be confirmed which will no doubt be soon as her GFR is really dipping…..

I think this site is so informative and really helpful, as even though I have a lovely partner, dear close friends and family, I do find the whole topic hard to talk about. I too have found that reactions have been difficult to cope with as I dont feel special or a “hero” for doing this – what I do feel is utter sadness that my poor sister has and is going through such an awful illness.

My mum gave her a kidney back in 1997 and she is a true inspiration – her op was prior to the introduction of key hole so mine will be quite a different experience I am sure. Mums kidney has been working very well for my sis up until last year, so its just really lucky I am a good match for her – its my turn now!

Last Oct 2011 mum and I walked the unrestored Great Wall of China for Kidney Research UK with 25 others – it was an amazing experience and for us we really wanted to highlight about Kidney disease and raise awareness and funds for vital research. It marked the charity’s 50th anniversary and was such a fanastic experience. We are having a reunion next month up in York and cant wait to see the other peple – we went away not knowing anyone and came back with 25 new friends!

I really hope that by educating and talking about kidney donation the huge numbers of people (Around 7000 in the UK presently) waiting on the transplant list will start to decrease….here’s hoping!

I wish Hazel and her friend all the very best for next week and to all those around the UK who are going through the same emotions and operations.

Natasha xxx

Once you have the op you will catch up on sleep. I know I felt very tired afterwards and slept like a babe for best part of a week, including daytime naps!

I expect you both have mixed emotions at the moment. Excitement that it is just around the corner but at the same time a touch of nerves as the day nears. But as you say, you both just want the day over and done with so you can get back to a happy and normal life.

Thank you for your kind words, it does mean a lot to know people benefit from this site.

I have marked the 8th in my diary and my thoughts and prayers will be with you both on that day. Please post again afterwards to let me know how you got on. You can always contact me direct if you wish to instead (via contact page).

All the best to you both
Di
xxx

I posted some comments on here a couple of moths ago when i started the testing process for being a kidney donor and just wanted to let you know that all went well. We now have a date for the op which is 8th March, which I have also been told is national kidney day!!! So brilliant timing.

I’ve been having difficulties sleeping recently and due the op being so close the doctor is unable to prescribe me anything. I’ve also had to stop taking other medication which is causing me a bit of disruption to my daily life. At the moment I just want the op to be over and done with, not because I’m fearful just because I want myself and my friend to get back to a normal life and be able to plan for the future.

I’m not expecting anyone to reply to this post but I do find it very therapeutic writing down how I feel for other people to read who have been through or are going to go through the same thing as me. It is a situation where people can try and understand how you feel but unless you have been through it I don’t think you can fully understand.

Thank you for setting up and marinating this site Di, I’m sure you have helped more people that you realise.

Thanks again,
Hazel xx

I have no idea why I want to do it but, I definitely do. It comes from within, a desire to help another.

Watch this space.

L x

It is shocking when you hear how some people on dialysis are so restricted by what they can eat/drink. One thing I did find out was that a lot of people I spoke to thought dialysis was instead of a transplant and that they lived quite happy lives on it and didnt really need a transplant. humpf !! I see their eyes opening wide as I tell them the facts and point them towards some dialysis accounts.

Take care there. Say Hi to your friend for me and you are both in my thoughts.

Please post again if you have any questions or you can contact me privately if you wish (contact page top right of here).

Di
xx

Thank you so much for your quick response. It’s so nice to hear that you felt uncomfortable with people’s reactions too, it’s always nice to know what you are feeling isn’t unique.

Turning people’s questions into an opportunity for education is a fantastic idea and one I wouldn’t have thought about. Also brushing it off as something else sounds a good way forward “I’ve had a face lift, can’t you tell!”.

When my friend became ill it was very sudden and she had a close call so I have mentioned it to some other friends as I was so distressed and since then I can’t help but tell them all the new things I find out. One of the most shocking things i learnt was that cheese was off the menu!!! It’s little things like that which she has found hardest to deal with, it’s a complete change of lifestyle.

We have just been away for a friends wedding and her dialysis machine was playing up and it was the first time I have seen her that frustrated and upset by her illness and all I could say is not long now

Thanks again for your reply and for helping so many others in my position. I’ll try and let you know how it goes.

Hazel xx

After I had my operation and people asked about me, I just said I had an operation without going into details. The few that went further and asked questions like “nothing serious I hope” or even more direct and asked “what for” personally I just brushed it off and said nope, nothing serious and went on to talk about something else or I just responded ” oh you know, this and that” lol .. i.e. none of your business.

Really it is totally up to how you feel. If you really don’t want anyone to know you are recovering from a donation operation, then make sure your boss knows it is totally confidential and really just don’t tell people. Just say it is personal and generally hints to people not to ask.

Alternatively you could ask the hospital for several leaflets on living organ donation or print some off the internet and keep them with you. You can always hand one out and start talking about what life is like for people with renal failure and how a transplant is really the only way forward and this is why you are doing it. explaining to people exactly what donating a kidney is all about, how you can live with one kidney and explain to them the process. Tell them about the low risks and educate them about living donation. You never know, one day one of them may themselves donate knowing all about it cos you told them.

Sometimes we cannot avoid people’s generous reactions to us and yes it is uncomfortable to receive them most of the time, but we can turn it into a good experience by educating people and making them see things in a different light.

Jan not too far away now, what a great start to the new year!!

Not sure if what I have said has been of help, just that is the way I dealt with things and still do. I try to educate people where I can on both sides i.e. why the recipient needs a transplant and how it is not such a biggie for the donor.

Take care, would love to hear how things work out
Di
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