The wait

Hi, I have finally completed all my tests and should be on the waiting list within the next couple of weeks, can anyone tell me whats it like waiting for that call from the transplant team? How do you cope with the wait? My fare is the 'wait' will take over my life, I'm managing to stay off dialysis for the time being, im hoping to get a transplant before then, but as we all know there is no guarantee that will happen, so some advice please?

13 Replies

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  • Hi

    Your question is also very prevelant to myself.

    Im actually a little further back than yourself in the process ☺ im at this point awaiting an mdt decision to place me on the transplant waiting list for a kidney and pancreas transplant . Like yourself I am also pre dialysis and hoping to avoid this if possible. Im not sure how many people are in or have been in this position as everyone I speak to has been or is on dialysis .

    I feel the wait is a state of mind that has to be accepted and managed by the individual but in turn positive support from others will definitely help. Positivity will be the key overcoming any setbacks or difficulties on the way. To me the list is nothing more than a raffle ticket so put it in a safe place and carry on as normal ☺

    Good luck

    Mark

  • Hi Mark thank you for your reply, its kind of comforting to hear from someone who is going through the same thing. I will take your advise and pop that ticket in the draw, thank you Gee x

  • You have a very good attitude and understanding about 'the wait' once you are on the transplant list. I wish you good luck for all success.

  • Thankyou

    Im guessing its easier for me to have a positive attitude at this early stage holding onto it will be the key as time passes ☺

  • Hi

    I too am pre dialysis on the transplant list. It took three months in total from my consultant to say it's time to put you on the list until I was finally on the list. I have been waiting for a transplant for three months now. I have asked the question" has anyone on the list who is not yet on dialysis had a transplant" to my consultant and the answer was "no". I have also phoned up the transplant centre and asked the same question. They said it does happen but not very often. I think the criteria has also changed on the transplant list recently and how long you have been on the waiting list is taken into account as well as the match. I must admit, after three months on the list I am just trying to carry on as normal and I hardly think about it now, I just make sure I have my mobile on me and charged up! I am also concentrating on keeping myself well and off dialysis for as long as possible by sticking to the diet, drinking alkaline water, cutting out achohol and trying to keep a positive attitude! Wishing you good luck and I hope you don't have to wait too long.

  • Hi my doctors/surgeons seem very happy that I'm pre dialysis. I'm nearly 40 and they are think I have a good chance, but having said that I haven't asked the question how offen does it happen to people in our situation. I will now ask that question, knowledge is power and a little bit of control haha good luck to you hopefully none of us will have to wait too long, Gee x

  • Hi fashiongee

    I can honestly say that it is no picnic waiting for that phone call, most nights I would wish for the phone to ring but it never did not for 16 months and I thought that I would never get a kidney especially at my age [63] so I gave up and resigned myself to being on dialysis for the rest of my life [ a daunting prospect] then on the 8th of September at 2 am the phone call came and I had my transplant and I am over the moon and cannot thank the donor enough for giving me this gift of life, so chin up your turn will come and I hope it will be soon

  • Congratulations on your new kidney! Thank you for your reply, I will take comfort in it, good luck stay healthy, Gee x

  • My suggestion would be to just get on with life and don't worry about the wait. It took me four years to get mine, so you can see where I'm coming from. Good luck, and all will be ok.

  • It's good news you are on the wait list for a kidney transplant but please don't kid yourself you will get a call soon. In my experience the average wait is at least 2.5 - 3 years and that is if you are lucky, so forget about the wait list and get on with your life.

    The decision is made by a computer that has everybodies details and, when a cadaveric kidney becomes available it works out who the most suitable recipient will be and they are notified to come to their hospital for testing, which takes 4 hours to provide the result. If you have a cold or any illness which makes you unable to have the kidney, the hospital may reject you and give it to someone else.

    Your hospital should provide some kind of pre-transplant information meetings for you to attend where you can meet people who've had a transplant and ask questions. Check it out as well as your Kidney Patients' Association, if you have one.

    GOOD LUCK!

  • Thank you for your reply, I do have all the information you suggested, I'm a glass is half full person, so its in my DNA to think that I won't be waiting too long for a new kidney, I will take each day as it comes, wake up every morning and in the back of my mind think today could be the day, good luck to you Gee x

  • HI there,

    Oct. 26, 2015

    I am new to this web site and happy to find a knowledgable and supportive community with other who have these same challenges. A little background...I have had 3 kidney transplants in my life, the first one from my mother, and the 2nd and 3rd ones from cadavar donors. It looks like this one, which has served me well, is on the decline which is pretty upsetting, but I accept it. As of today, I will be making arrangements for meeting the requirements to go back on the waiting list. I may not be eligible, it being a 4th attempt, so I am preparing myself for that too......

    About "the wait". I've thought a lot about what to say in my response to you as I am quite experienced in this same situation. Thorough the years with having to deal with this disease, I finally came to the conclusion that either way, dialysis or transplant (both of which are treatments), both allowed me to live, to participate in life to the best of my ability and to treasure what I love and who I love. I waited 13 years for this last transplant and did hemodialysis during that time. It's easy to tell someone not to give in to that fear of the anxiety of waiting and let it take over your life. And no, I can't tell you to "just let it go and it will all unfold in its right time" since it can be awfully waring not to know when something is going to happen. And when it does, will it go smoothly? My official advice: Compartmentalize. This unrest is always going to be there, so try to focus on the good things in your life. What else do you have to think about in your life that is positive? Who else is in your life that you're involved with, that matters, that is supportive, loves you and makes you laugh? My guess is that you're not waiting alone and there are many who are just as invested in your life as you are. Sometimes, you just have to put the effort in to put all this on the back burner for yourself, minding however, your continual preparedness for when that time comes, transplant or dialysis - mentally, emotionally and as physically as possible so that you know ahead of time that you're up for the challenge. Nobody, battling any disease of any kind has an easy time of it. I will admit however, that renal issues are tough - for all of us here.

    I truly hope this has helped ease your worries in some way. Easier said than done, I know. Just keep your hope and your gratitude. You've made it this far - why wouldn't you continue on that path?

  • Thank you so much for taking the time to reply to my question, you really given me food for thought. You are right, yesterday I turned 40, it was made very much clear to me how many people love and care for me, its a difficult path with no easy route, but you reminded me I'm not on my own, let me explain, i have a truck load of siblings we all have our separate lives and familys but when the chips are down we all come runing, or so i thought... they are too frightened to be tested to even see if they are a match let along donate a kidney, this has been hard for me and my partner to deal with. ( they don't to want risk not being there for their family to help me, if it all goes wrong) But we take each day as it comes trying not to judge others decisions. My partner isn't a match so, My partners Mum is my best hope yet but she has long road to go down that testing route. I will continue to focus on the many wonderful people in my ife, and not forget i am very much loved, and try not to let the cloud of kidney disease take over my life, its a disease I have, not who I am.

    Good luck with your meetings at the hospital, I don't have my details of your age etc but by what you written I can tell you have such courage and strength, don't give up now whatever the result of your meetings, grab life by the horns and don't let go, good luck to you Gee xx

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