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New to this group, but looking for a living kidney donor ASAP!

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  • New to this group, but looking for a living kidney donor ASAP!

    Hello,
    OK, I'm 36, and have PKD, so my kidneys are huge and are only functioning at about 10%. Until recently, I worked as a receptionist but am too tired to do even that since April 1!! Truly, I'm too tired and worn out to do anything anymore, and I'm not looking forward to being a slave to a PD schedule or anything.
    I just started PD and am supposed to try doing the treatments at home pretty soon...except this house isn't any place to be doing dialysis treatments at this point.
    I'd almost as soon skip PD, and if I die, oh well....
    Yesterday I found out my blood type, and I wonder if this is the right place to look for a living donor now that I know my blood type is A+, and by the way, I'm in San Diego, CA.
    Is this the right place to be looking for a living kidney donor? I hope so!
    Otherwise, like I was saying, oh well....

  • #2
    Most of the people on this board have the same problems you do. We need kidneys rather than having them to give. Your nephrologist can get you started on the process of qualifying for transplantation and tell you how to go about finding a living donor if one is available. But before you can be transplanted, you need to be compliant with your recommended dialysis program and other medical requirements. It takes time -- lots of it in most cases -- and dialysis keeps you alive while you are waiting. Hang in there!
    To the stars through difficulty!

    Comment


    • #3
      Kidney

      You sound awfully depressed and rightfully so.
      My husband has PKD and yes, it bites to need dialysis.
      Since I am the caregiver I only know it from this side.
      I would be broken hearted if he just gave up and left me.
      I bet there are people who love you who feel the same.

      I have found sites that have message boards with people both looking for kidneys and those willing to donate. I cannot remember which ones, but if you go to Kidneyoogle.com you will find a lot of sites to check out.
      Talk to your doctor and the social worker.

      Please post here, there are a lot of people who understand exactly what you are going through and they will support you.

      Comment


      • #4
        Well, it can take years to find a kidney.

        I know in Canada people can only donate if they are related to you.

        Also to have all the tests done can take 2 or 5 years even as thesedays some of the tests there is a waiting list of 1 year or more.

        hopefully the US has shorter waiting times.

        Comment


        • #5
          Sorry not true in Canada

          I'm also from Canada, Montreal to be exact and non relatives are definately allowed here. I know this because two of my friends were tested. Unfortunately they did not match. My husband is probably going to be the donor and tho' not related is a match. Check with your docs agin.

          Marilyn

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          • #6
            I know when I posted on LivingDonorsOnline I got many emails from living donors wanting to donate to me. It seemed relevant to this thread so I thought I would give the link.

            I ended up getting a transplant from a cadaver but the kidney never "woke up" .. it has now been 5 weeks and my Nephrologists have given up on it and put me back on traditional dialysis full time

            Also I found out that Canada DOES allow live donors that are not related in any way .. as long as you know them and did not just meet them as a stranger for the sole purpose of getting a kidney from them. They really question ones intentions on why they want to give up a kidney.
            Angie
            Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
            I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
            • Peritoneal Dialysis = 4 yrs
            • Hemo Dialysis (in center) = 2 yrs
            • 2 kidney transplants = 1990 - 2001 & 2007 to present

            Comment


            • #7
              Angie,
              I'm so sorry your transplant did not work but I.m sure they will try again. I just had mine cancelled for the third time.. two days before this time...all because of the c-difficile I've been battling. Keep hoping because there are a LOT of success stories out there.
              Happy Holiday and lets hope 2008 is better for all of us.
              Marilyn

              Comment


              • #8
                Actually, Marilyn, he kidney has finally started working after 7 weeks. It was just a "sleepy" kidney. It happens occasionally. It is starting to work now though, and she was finally able to stop dialysis again. It's still not fully working though, so she still has to get epo and take phos binders, but at least she doesn't have to do dialysis anymore!
                Shannon
                KidneyFun // Kidney Korner // Organ donation awareness products!
                If the world didn't suck...........We'd all fall off!

                Comment


                • #9
                  Originally posted by shay_pcb View Post
                  Actually, Marilyn, he kidney has finally started working after 7 weeks. It was just a "sleepy" kidney. It happens occasionally. It is starting to work now though, and she was finally able to stop dialysis again. It's still not fully working though, so she still has to get epo and take phos binders, but at least she doesn't have to do dialysis anymore!
                  Thanks! I forgot to update here as so many forums seem interested in my story for some reason (I didn't think that many people cared and has surprised me actually). I didn't know if it would start working and I had gotten very depressed but it turns out that the lacking oxygen carrying blood caused acute tubular necrosis which it turns out can recover and the kidney can start working again. It was getting iffy after 6 weeks but on the 7th week it started to work enough for me to stop hemo! I have now been off hemo for almost 4 weeks now! So it looks like I will have a great Christmas this year! Things have really picked up!!
                  Angie
                  Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
                  I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
                  • Peritoneal Dialysis = 4 yrs
                  • Hemo Dialysis (in center) = 2 yrs
                  • 2 kidney transplants = 1990 - 2001 & 2007 to present

                  Comment


                  • #10
                    Angie
                    FABULOUS!! I'm so excited for you. Have a wonderful holiday with your new kdney and your family.
                    Marilyn

                    Comment


                    • #11
                      New at this!

                      Hi, I am new at this Davita thing. I am not sure how to post in the forums. Is there someone out there that can help me?? I am looking for someone to talk to that is going thru some of the same things I am. I hate dalysis. I get very anxious on the machine. Sitting there for 3 1/2 hours is so hard for me. I am a young, vibrant woman with a 15 year old son who keeps me busy. I am also single and looking. I feel that why should I look for someone to spend my time with when I have this terrible disease. Who wants to be with someone that is sick. I get really depressed about it. Everyone keeps telling me that someone will come along soon. I hope so. Does anyone have any suggestions of where I might find love?

                      Comment


                      • #12
                        No one can tell you where to meet the love of your life, but he will come along one day when you least expect it, and he will love you despite your medical problems.

                        It is normal to get depressed about having to have dialysis. I was depressed too. Coming to all these dialysis forums and trying to help other people cope has really helped me a lot. I was 18 when I started dialysis, and I am 20 now, but I have never done hemo. I've been on PD the whole time, and I love it! (As much as a person can love dialysis.)

                        What do you do with your time on the machine? This is good time to read, sleep, do crossword puzzles, crochet, knit, or whatever else you might enjoy. Consider it "you time," away from your teenager. lol.

                        Anyway, coming here is a great first step to helping you cope with everything going on in your life. I hope you continue to come back and keep us updated on your progress!
                        Shannon
                        KidneyFun // Kidney Korner // Organ donation awareness products!
                        If the world didn't suck...........We'd all fall off!

                        Comment


                        • #13
                          It sounds as if you are having trouble accepting that you are a valuable and beautiful person. If you can do that, your disease will just be a footnote, and you won't be depressed any longer. I agree that the time in the chair can be boring, but you can use it for a number of purposes. As Shay suggested, it can be "you" time for reading, playing games, doing a craft, or sleeping. You can also put the time to good use by volunteering to do something for others such as knitting hats and mittens for poor children, sewing stuffed animals for hospitalized children, writing letters to congresspeople in support of your favorite cause, etc. Prayer, meditation, and reading devotional or inspirational writings could also help you spend your time.
                          To the stars through difficulty!

                          Comment


                          • #14
                            Originally posted by VickyLou View Post
                            Hello,
                            OK, I'm 36, and have PKD, so my kidneys are huge and are only functioning at about 10%. Until recently, I worked as a receptionist but am too tired to do even that since April 1!! Truly, I'm too tired and worn out to do anything anymore, and I'm not looking forward to being a slave to a PD schedule or anything.
                            I just started PD and am supposed to try doing the treatments at home pretty soon...except this house isn't any place to be doing dialysis treatments at this point.
                            I'd almost as soon skip PD, and if I die, oh well....
                            Yesterday I found out my blood type, and I wonder if this is the right place to look for a living donor now that I know my blood type is A+, and by the way, I'm in San Diego, CA.
                            Is this the right place to be looking for a living kidney donor? I hope so!
                            Otherwise, like I was saying, oh well....

                            Hello and welcome! C'mon now don't feel down! I have been doing dialysis since 1978!! All it takes is acceptance and a little training to care for yourself. Its not the end of everything, its a new mission and challenge facing you. If you drive a car you can drive PD/Dialysis......
                            My Blog Site
                            Http://www.dailyhemo.org
                            sigpic

                            Comment


                            • #15
                              new to the site

                              Hello how are all of you I just found this site and have really enjoyed reading everybody 's post. I just got the word that I'am active as of March 19 th on the list for transplant how does everybody do waiting for the phone call. Iam on pd dialysis and have been for 2 yeas I did hemo for 6 weeks after I had my kidneys remove and then went back to pd as soon as I could. i really like pd better but it was easier to lose weight on hemo I need to take off 15 lbs and pd doesn't help any advice on how to lose weight Thanks tammy46

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