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My transplant journey....

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  • My transplant journey....

    I'll start at the beginning. I found out when I was 11 years old that I was born with only one kidney and that it was slowly failing and that I would eventually need dialysis. I never thought much of it. Lived my life normally...as normally as I could, anyway. I have a lot of other medical problems to deal with that I won't get into here right now.

    When I was 17, my kidney function was low enough to go for a transplant evaluation, so I did. I was turned down bc of my age. They had bad luck with people my age not taking their meds.

    When I was 18, my nephrologist said that it's time to get an access for dialysis. I tried 3 times to get a fistula/graft, but never succeeded. I ended up getting a PD cath inserted. I started PD in the hospital a few months later, a month before I turned 19. This was April 2006. I went the weekend without dialysis, then was trained at my new dialysis center for 4 days, then did it at home myself, but I started doing it at home after 2 days. I guess they just needed to watch me more. They said I was a quick learner; that's why I was able to do it at home after 2 days.

    I went for another transplant evaluation November 2006 and was turned down yet again. This time, it was for my other medical problems. They said doing surgery on me was too risky, and they didn't want to take the risk.

    October 2007 I went for my third evaluation and was ACCEPTED! I was able to tell my grandfather about a week before he died that I was accepted on the list. Though he was really sick and out of it most of the time, he was really happy that I was finally accepted. I thought he was going to cry.

    Anyway, my fiance called to be tested, got a kit, we got it drawn at my dialysis center, sent it in, and he is a MATCH! Everything is just working out so great now. It's weird how it all falls together sometimes. The date for him to get the rest of his testing done is set for January 11. That's the reason I'm writing this thread. I'm going to continue in this thread updating everyone on how everything goes.
    Shannon
    KidneyFun // Kidney Korner // Organ donation awareness products!
    If the world didn't suck...........We'd all fall off!

  • #2
    Shay, I'm so happy for you. I look forward to your updates.

    Comment


    • #3
      good luck

      Shay, I am so happy that you are starting this thread. Keep us informed about how things are going and know that you are in our thoughts and prayers.

      Comment


      • #4
        Thanks guys. My fiance's evaluation date is getting really close! It's in 4 more days! I'm getting nervous. I really hope he doesn't have any hidden illnesses that will prevent him from giving me a kidney, bc no one else in my family was tested, and I don't think most of them can donate anyway for one reason or another.
        Shannon
        KidneyFun // Kidney Korner // Organ donation awareness products!
        If the world didn't suck...........We'd all fall off!

        Comment


        • #5
          I will be thinking of you and William on Friday. I also hope that he sails through the evaluation with flying colors. Good luck!!
          To the stars through difficulty!

          Comment


          • #6
            Shannon,

            Will be keeping you both in my thoughts and prayers! I have a good feeling----
            "Within every adversity lies a slumbering possibility"
            Linda
            Tx: 7/28/2005
            St. Louis University Hospital

            Comment


            • #7
              Well, the evaluation went ok, but not great. His creatinine was 1.4 (supposed to be .8 to 1.3 according to UAB), and his fasting blood sugar was 113 (supposed to be 60 to 100 according to UAB). So he has to get more testing: a glucose tolerance test and maybe another 24 hour urine test. They are going to discuss it and call us back sometime next week, I believe. They said that it could be normal bc of his size and muscles. That's why they have to do the other tests just to make sure that it is just his size. They said that losing a few pounds may help, so he is determined to lose weight now. lol. He doesn't really need to lose weight; he's not overweight or anything. Here is a pic of him and our dalmatian, Dixie, and you can see our weenie dog in the back too. lol. That's Pnut.


              Anyway, so we are just waiting to see what the next step is. When I find out, I will post it here.
              Shannon
              KidneyFun // Kidney Korner // Organ donation awareness products!
              If the world didn't suck...........We'd all fall off!

              Comment


              • #8
                news?

                Hi Shannon,
                Do you have any news? Did all of your fiance's tests get resolved? It seems like such a long process. Thanks for the picture. Your fiance is very handsome - and Dixie is cute, too!
                Joanne

                Comment


                • #9
                  Things change

                  Shay,
                  Don't be discouraged.. My husbands first tests were not great either... all borderline Then he lost 20 pounds and started excercising and two months later.. he's my donor. Now if I can just get my health back we are on our way. So keep hope!!!

                  Comment


                  • #10
                    Thanks guys. No, we haven't heard anything else yet. I told him to start calling the living donor coordinator this week, since she was supposed to call us this last week and didn't. I told him that he has to stay on top of them. So we are still just waiting to see what the next step is...What tests to do, where, and when. lol. He has already lost a few pounds from changing a few little things in his diet. We are monitoring his BP also. We are supposed to take it 3 times a week for 2 weeks, then fax it to the living donor coordinator. So far his BP has stayed around 130/70, pulse 65-70.
                    Shannon
                    KidneyFun // Kidney Korner // Organ donation awareness products!
                    If the world didn't suck...........We'd all fall off!

                    Comment


                    • #11
                      journey

                      sounds like you are hanging in there. It's amazing how long everything takes! His BP looks fine to me. You are right about having him contact the living donor coordinator - you have to be your own advocate.

                      Comment


                      • #12
                        Testin



                        Hi I am still waiting to see if my daughter can donate to me? Her blood pressure is high and she has to get it down before continuing to test. In the meantime my creatine is 3.3 and my GFR is 17. I can only think about having to go on dialysis, I am not looking forward to that. I have to see the nerp on the 14th of February. Any replies are certainly welcome.

                        Comment


                        • #13
                          I finally called the living donor coordinator myself, since William didn't want to do it. She wouldn't talk to me anyway, she said she needed to talk to him and had been meaning to call him. She said she was sick and that's why she didn't call. So he talked to her. She said to get the phone and fax numbers from whoever it is at our local hospital that deals with setting up the tests that William needs. So we did that and called to give them to her, but she didn't answer. We had to leave a message. Hopefully she got it and will let us know when his appts are to get the rest of his testing done. So...more waiting.

                          JohnieB, I'm sorry your daughter can't be your donor. I'm sure you have other family though, right? It's my fiance that is trying to be my donor. The donor doesn't have to be blood related to you.
                          Shannon
                          KidneyFun // Kidney Korner // Organ donation awareness products!
                          If the world didn't suck...........We'd all fall off!

                          Comment


                          • #14
                            Shay's right. They've come so far with transplant medications, that they can adjust them. All you really need is a matching blood type and a willing donor.

                            We just heard from our transplant center. My husband has been accepted as my donor. Our surgery has been scheduled for Feb. 26. I think he's more excited than I am My center was really good about scheduling our meetings and testings. The entire process has taken only 4 months from start to finish and they've been right on top of things.

                            Hope things work out soon for you Shay. Keep on 'em.
                            It's not about waiting for the storm to pass, but learning to dance in the rain.

                            Comment


                            • #15
                              Wow! Congrats MTB! Our process started in October, so we've been going for almost 4 months now too. We're still in the testing stage though. Did your hubby had to have any extra tests done after the initial testing?
                              Shannon
                              KidneyFun // Kidney Korner // Organ donation awareness products!
                              If the world didn't suck...........We'd all fall off!

                              Comment

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