How does it feel to be on the waiting list for organ transplantation? Either yourself or a loved one? Please share your stories?

I am a journalist in Nottingham working on a documentary surrounding Organ donation. I want to hear and speak to as many real people as I can to get a feel for what its like and for research purposes.

Organ donation is so important, and something I think the media do not report on enough. I hope my documentary will raise some awareness.

15 Replies

oldestnewest
  • Hi my names Michelle and Im 35, I had a liver transplant on 8th august and went on the waiting list on May 13th, although had agreed to go on it about a month before was just a case of filling in paperwork etc. if you have any particular questions you want answering I'm happy to answer them as best I can. Kind regards Michelle

  • Hi Michelle thanks so much for the reply. Can I ask what those three months of waiting was like? I assume you were extremely ill at the time? Were you back and forth to the hospital?

    My documentary is focused around the anonymity aspect of organ donation. The idea that a donor family knowing their recipient can help with the grieving process. Can i ask if you had the opportunity to write to yours. And if you didn't, would you have liked to? Or not?

    Thanks again Michelle

  • Hi, yes I was poorly leading up to getting the call and inparticular the last week before I had it done I went down hill very fast. The time on the list was hard, always checking the phone and if it rang unexpectedly panic set in. My life had to be put on hold which was hard considering I had a 6 and 7 year at the time. Of course the call came when I least expected it, and to be honest it wasn't until I left hospital that I really thought about the donor. I have been given the opportunity to find out the sex and age of the donor but am not ready for that yet. I have written half my letter but am finding it difficult to finish it off, but it is something I want to do and will hopefully complete it soon. If you want to chat more perhaps emailing me at mattshellandjack@yahoo.co.uk would be better. Hope this helps Michelle

  • Hi. I had a liver transplant 10 years ago. I went on the list on 18th December 2003 and had my transplant on 31st January 2004. As Michelle says. I would also be pleased to answer any questions you need.

  • Hi there, thanks so much for the reply. Can I ask what it was like waiting for the call? I assume you were extremely ill at the time? Were you back and forth to the hospital?

    My documentary is focused around the anonymity aspect of organ donation. The idea that a donor family knowing their recipient can help with the grieving process. Can i ask if you had the opportunity to write to yours. And if you didn't, would you have liked to? Or not?

    Best wishes,

    Harriet

  • Yes I was also very Ill before my transplant. I slept a lot. I received the first call on 7th January and travelled to the hospital only to find that the liver was not suitable. The wait for the second call was even worse I jumped every time the phone rang yet when it finally did I felt very calm, it was my daughter who was running around like a headless chicken. I was told the gender, age and cause of death of my diner and I wrote to the relatives while I was still in hospital but did not receive a reply.

  • I had a transplant 13 months ago - happy to talk to you if you want? Feel free to

    E mail me deanopandy@gmail.com

  • Hi Angie. I am so pleased to see you respond. I was hoping you are feeling well and that your year post transplant has gone as smoothly as possible. I really enjoyed following your blogs and thought you and your husband were truly inspirational in the way you tackled your journey and allowed others such as me all the way down in Australia a window into your world. I hope you were able to make decisions regarding work in your favour and I wish you all the very best for continued good health.

    Karaliz

  • Hi there Karaliz, hope you are doing ok? I am very well thanks, back at work ( 3days a week) do Pilates 2x a week, have learnt ballroom dancing, my life has improved SO much

    Thanks for the comments about the blog, much appreciated :) xxxxx

  • You sound as though you are progressing wonderfully Angie! I'm so happy for you. How are you finding the 3 days work? Is it manageable as far as fatigue goes? Wishing you all good things and I look forward to further episodes from your blog.( I'm assuming you are continuing it which of course may/may not be the case! ) Best wishes. Karen.

  • I was top of the ?list? 4 years ago but very ill in the hospital I did my workup and my liver decided to give it one more go. I am now deteriorating again but in a different way I have too much Ammonia and encephalopathy. Good luck with getting our story out.

    I feel you need to push for all countries to be like Spain they have an opt out policy on transplants. This means if your organs are viable they use them unless a family member says no. They have NO waiting lists, why are people so precious about being intact when they leave the world what difference will it make?

    You make a huge difference if you donate your organs and save someone else from dying and their families from the grief your family are going through.

    Please please raise the roof on this one for all those suffering

  • Hi,

    It's the first time I am actually writing about it since I had my transplant in November last year. I cannot put my finger on it exactly, but I feel so overwhelmed with feelings of joy and elation at the chance of being alive and seeing my little ones grow up and at the other extreme have deep sadness that someone somewhere lost their life for me to live mine. I want to write a letter but like Shellbear, I am lost with what to write and how to write it, I will be eternally grateful and thankful that god made it happen.

    Btw, I was in perfect health before I had the transplant and could do everything. I was always hungry but my weightloss was rapid, I was in total denial. June 2014 went on transplant list, had one call up whereby the liver was not suitable for me so was given to another patient on the waiting list, I was so sad but it wasn't for long. few days later I got another call up and luckily it was a perfect match.

    Now 4 months post transplant, I am struggling with the recovery but it is happening slowly.

    I am happy to help with your work in any way.

    You can txt me on:-

    eazyfreezynyourz@yahoo.co.uk

    xxx

  • Hi Hattie. I've just been put on the waiting list (dec 2013) and was told the average waiting time for my blood group is 2yrs now and apparently the situation is getting worse. Ironically the more common your blood group the longer the wait. The thought of waiting for 2yrs is pretty daunting as it's already starting to impact my way of life I'm in hospital typing this as we speak! I'm a 32 yo man with a 1yo daughter and would be happy to help out with your documentary as I want to use my experience to raise awareness of this issue. Something needs to be done on this either by increasing supply or by restricting the chronic waiting list (ie by recalibrating the criteria) unfortunately I think they're probably looking at the latter as the former would require some political balls (which appear to be in short supply amongst uk politicians). Unfortunately liver cirrhosis and liver transplantation gets a bad press due to the links with substance abuse and most people don't know the full picture. Rant over

  • Hello there,

    are you still looking for info or have you got enough? I waited for my gift for nearly 3 years. My family and I went down the live donor route after 2 years we were that desperate but for one good reason or another, none were suitable so back to the desperation of the lonely national list. It was horrendous and probably more so for my family. I'm very grateful to my surgeon and consultant but still feel resentment to the transplant team for making me wait for so long.

    Anyway, please get in touch if you want any info from me. Will be happy to give my honest experiences. Gill

  • By the way I agree with waxxy 99, there is very little coverage of need for livers which fuels peoples misconception that livers are just needed for alcoholics. Gill

You may also like...