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February 7 2014 6 07 /02 /February /2014 19:30

Hello Everyone..

So I said I would start 2014 as  positive as possible and this is definitely the way forward so much as happened in such a short space of time already.

 

Last year I decided to start a project about making a mini movie about patients on dialysis who had either had a transplant, needed a transplant or unfortunately passed away before they had a chance.

After all the misleading publicity in the media lately about dialysis patients and transplants I wanted to put the record straight about what we as patients actually go through.

Then disaster struck I lost the work I did and felt very disheartened and gave up on it.

When 2014 began along with my new positive attitude I decided to give it another go and would link it to World kidney day in March.

I posted it on you tube and I am so overwhelmed by the feedback it has gotten already.

Due to this I have become a World Kidney day Champion. This means I have promised by making this video and sharing it on social media sites and also I plan to run a stall at a health information day I am involved in to promote organ donation, more people will be made aware of kidney awareness.

 

On the 17th Jan I was officially accepted onto the transplant waiting list -YIPPEEE after all these years of waiting it finally happened.

So that nervous feeling now waiting for the phone to ring. Then I was on dialysis on the 23rd Jan, (just 6 days later) and the phone rings, Yes you guessed it , it was Birmingham hospital to say I had matched to an altruistic donor.

Now for those who are not aware of waiting times this is incredibly quick. Average waiting time is 3-4 years but can be 1 day to 20 years.  They had obviously taken into account my "waiting time" of 8 years which is how long I should of been on the list had I not had a rare genetic disease.

I was speechless and so emotional but excited as well.

 

I have had an up to date heart echo and this has come back as good and today I went to QE in Birmingham to see a physician to talk about a plan for going in.

As I have a rare disease I needed to discuss when to start taking the drug I need for the kidney not to be attacked again like last time.

The meeting went well and we are hoping for a date in mid- end of March.

We agreed we would like to have a look around the ward next time we went and also to speak to a psychologist as with transplantation comes a lot of mixed emotions.

 

So in  just over a month so much has happened already.

I will keep you all informed of the progress and I will attach a link of the World kidney day video I made as well.

 

Thanks for catching up

 

http://www.youtube.com/watch?v=gAED7_rfOng

 

TTFN

 

Lisa

 

xxxx

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Hi love your story very touching when I got onto the transplant list I always jumped when My phone rang I have been on dialysis for a year and so many people on our unit got transplant recently so<br /> it got My hopes high any thanks for sharing your story and please keep us up to date<br /> U
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<br /> <br /> Thanks for the lovely comment. I know many friends who have waited from 1 week to many years, the waiting game is hard. Although i know I am very lucky that i got the call so quick, i have been<br /> dialysing for nearly ten years so im defiantly ready. Your call will come when the time is right, if you just dialyse well and try to maintain your health the best you can you will be all the<br /> more ready when it comes. I hope it is soon and wish you all the best. Let me know how you get on. Regards Lisa x<br /> <br /> <br /> <br />

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  • : livelifelisa
  • : I decided to write a blog about my life on dialysis. Originally there was no option of a transplant due to a rare genetic disease but all this changed. I want people to try and understand what myself and my family go through, not just the bad times but the good as well. Hope you enjoy my story!!
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