1 hurdle down 1 massive 1 to go!!

Hey 🙂

Well I saw the surgeon last Week. All set to go for op in next couple of weeks or so, decided on HD 😊

But the question I have today is... I have had my appointment for the 28th of this month to have my first visit at Sheffield to see the transplant team. I have read the 3 little brochures I got with it.. wish I hadn't!

But was just wondering on what people first experienced on their first transplant visit.

All very daunting and making things a little hard. Like to sleep at night... just seems to be all I think about. It has really put the creepers up me.

Thank you in advance xx

7 Replies

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  • Hi Lauralou,

    I went for an information evening re transplants at Nottingham, was very informative . I met with other patients waiting for transplant and others who have had a transplant, some multiple time. Everyone was so positive and were so happy they have their lives back again.

    For me I cannot wait for a transplant, been for 1 but was a no go after 10 hours.

    The scariest bit for me was getting a call a 1am to say to come into the unit as we have a potential donee, once there the staff are so kind and empathetic no time to worry.

    Hope you get one soon.

    Philip

  • Hi laura lou

    Transplant work-up has changed since I went on the list. I met the surgeon, he said at 17 , being so young, I might only wait 6 months .. I waited for 16 years!

    Treat it as routine. You may have bloods taken and a brief examination. You can ask questions. The truth is, the majority of people wait quite a long time before they get 'the call'. Even then, you may not get the kidney. You will probably go to the transplant clinic yearly whist you are on the list to check your overall health and suitability for the op.

    My advice is to carry on as normal. Don't put your life on hold.

    Good luck with HD x

  • Hi Laura, Excellent news. Although the Xplant news can bring anxiety, be positive and like our Xplant units through out, the team would want a successful Xplant and for that the tests shall be thorough but all shall work out for the better. Start looking forward to spending time with loved ones and once the Xplant is successful think about all the wonderful things/trips you could not do before and stay positive. Best of luck. Madhu

  • Hi Laura

    Strangely enough I got the same letter to meet and have tests with the transplant team on the 10th April. I to read the leaflets, try not to worry about all the info in them as it is all very over whelming. Just look at them again and write down all your concerns and questions for your appointment.

    I'm looking at this appointment as a good thing it means were one step closer to getting our lives back.

    The night's are definitely the worst as your brain works over time. I know this all to well. I've been trying the mindful apps which help to distract you.

    I hope your appointment goes well on the 28th and they can help reassure you. Maybe tell them about not sleeping as when your tired everything seems so much more daunting

    Take care Laura

    Charlene xx

  • My first transplant visit I met 2 surgeons and had routine tests, blood, height and weight and then they 'felt' to see if there would be enough room for an additional kidney. I had Pkd so my kidneys were both enlarged. I asked some questions and then left. What I will say is that when your on the list live your life as before. You can receive a call at anytime.

  • Thank you so much for your reply.... fingers crossed my mum and sister at a push are both compatible matches. Just hope everything goes to plan. I have had my first AV fistula done and unfortunately failed. Just waiting for another date. Hope you are well. Thank you again.

    Lou x

  • Hi Lou,

    Sorry to hear about your fistula. Great that you have 2 possible donors who have a good chance of being a match. Also have a search for Paired/Pooled Donation.

    Rob

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