Hi everyone, I have just joined and thought I would introduce myself. I'm Brian, I've had CKD since I was 2 1/2 months old. I'm currently on Home Haemo 5 days a week for 3 hours on a NX Stage machine after losing my 3rd Transplant 4 1/2 years ago. I have a Live Donor ready to go that is a perfect match, even with my 100% Antibodies but there is a delay in it going ahead as I had Sepsis in January and they don't know where it came from. They think it could be my enlarged Bilary Duct due to Chronic Pancreatitis. I'm 45 next month so I've been doing this a long time.

8 Replies

  • Hello Brian and welcome. This is a great forum and you will get lots of support and advice and hopefully will be able to provide the same back. I have late stage 4 CKD with 16% egfr. The docs don’t know what caused it as I don't have any of the things that normally trigger it. I suspect it was due to a bad chest infection that I had two and a half years ago as I got ill after that. I am convinced it was the antibiotics they gave me but that is another story. I am still working. I work with computers mainly so I can do 4 days a week from home and one in the office. My company have been great. I am coming up 51 this year. When I go to see the nephrologist I am by far the youngest in the waiting room although I know from this forum that CKD can happen at any age.

  • Alright Brian sounds like you have been through it mate but still going strong I have ckd 3 but that's it n I had a liver transplant nearly 2 years ago , this is a great forum to be on there's so many knowledgable people to talk to , all the best n keep smiling ))

  • You too mate

  • Wow what a story you have! How fortunate you are to have so many people who care about you. Will be praying for you so you can get on with your transplant. God can do anything!!

  • Thank you, I'm like any Renal patient, you lose so called friends so easily. I get them saying, oh I'll call and see you, but that was five years ago and I'm still waiting. Even though I have seen them walk past my front doorknob the way home. Then they are all over you asking how you are when you see them in the pub, not true friends.

  • I totally agree. I have found that there is no one I can count on but my husband. Not even family. I have had people send messages that they would be tested but never did. I have had friends offer but they just fell by the wayside. I even had a gofundme account to help with expenses of being put on transplant list. I have a HUGE family. Know how many gave to the account? One! I did not want to broadcast that I had this disease to friends and family but doctors encouraged me to so I might get a donor. Now I wish I hadn't shared it because all I got was disillusioned. However, it has strengthened my faith in God because when it gets down to it, I know he is control no matter what. Hope this helps you!

  • Admiration from me for your positive attitude. I am convinced that a positive attitude - to all events - is a contributory factor to quality of life.

    Please keep us posted. My best wishes are with you. Moi

    Am retired SRN in Rochester, Kent, England.

  • Thanks Moi

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