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Getting ready to start the transplant process

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  • Getting ready to start the transplant process

    Hi,
    In March I found out I have IGA Nephropathy. Unfortunately, I have the aggressive form of the disease. My estimated GFR is 22. My Neph wants me to start thinking about potential kidney donors. He said that transplant coordinators won't work with me until my GFR is under 20. At the rate it has been going, probably about 6 months or so. I would like to know more about the transplant process from someone who has been through it.
    Thanks!

  • #2
    Hi,
    The first thing I would do is go to a couple of classes..the first one I went to just blew my mind not knowing anything.The second time was better and I ask Questions. I started going to the transplant Drs.When I was down to gfr 13.
    .But I was VERY loope,falling asleep anywhere,blabbing, My family and friends said I was bad metally
    .I talk to the transplant team and they will bend over backwards to help you.I had my tube(PD Catheter) put in stomach and had to go to the Center everyday so you can get trained.Not I do it at home every night.I'm waiting for my Sister who is a match to get down to her body mass index b/f surgery.I hope this help .

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    • #3
      Mental Problems

      Originally posted by chrismk View Post
      Hi,
      The first thing I would do is go to a couple of classes..the first one I went to just blew my mind not knowing anything.The second time was better and I ask Questions. I started going to the transplant Drs.When I was down to gfr 13.
      .But I was VERY loope,falling asleep anywhere,blabbing, My family and friends said I was bad metally
      .I talk to the transplant team and they will bend over backwards to help you.I had my tube(PD Catheter) put in stomach and had to go to the Center everyday so you can get trained.Not I do it at home every night.I'm waiting for my Sister who is a match to get down to her body mass index b/f surgery.I hope this help .

      Hi, my name is Kim. I read your post and if you already had your transplant, I hope it was a success . I am in stage 5 renal failure. I am not on dialysis, but close to it. Currently I am on the transplant list. My doctor would like for me to be on dialysis soon since my kidney function is 11%. But she is more concerned about how I'm feeling, you know with the pains, nausea, vomiting etc. I have none of those symptoms. But, I think I am having some mental issues. In your post you mentioned that you had some mental problems as well. I was wondering if this is part of the CKD. I am very forgetful. My memory is not so great these days either and my spelling has really taken a beating. I have to get help from the dictionary for words that I should now how to spell. I haven't told my doctor because I did not think it was CKD related and she did not mention it as being one of the symptoms that I would experience as my kidney function declines. I have done some internet research about the connection, but I was not able to find anything until I came across your post. Any information you can share with me would be really be appreciated. Thank you very much and God bless.

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      • #4
        I don't know if you want to call them "MENTALLY" it's just way way off .If my family and friends didn't know what was going on ,they would have admitted It is cause by the kidneys.I Was At stage 4 1/2 when it started little by little,i would fall asleep at work say the same Q over when I knew the answer,
        The best it (I laugh now) was sitting on the couch and all of a sudden start talking what who knows what ,then I come out of it my husband didn't know what to do ,I also would do a lot of turn beds down. in my Sleep..But it does say you get disoriented in one of my booklets.
        I'm have not done that in about a month..Started home PD 2 weeks,
        I know some don't make sense but thats what I went though
        Takecare.

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        • #5
          Hi Seal. OK. Your question is a very big one and nobody in this room has actually answered you. My husband and I are 9 weeks out from kidney transplant surgery. I was the donor. Here is a synopsis of the transplant process which is what your question is about. Once you are a candidate for transplant surgery, you will need to choose a transplant center. We had ours done at the University of Wisconsin in Madison. They are ranked 5th in the nation for this type of surgical procedure. Our experience there has been fantastic. Once you choose your hospital, you will be required to go thru a variety of tests including; EKG, Stress Test, Chest X-Ray, a multitude of Blood Tests, Colonoscopy, Dental Exam to ensure you have no gum disease, and a Cat Scan of your Kidneys. These are the basic tests. Depending on which hospital you choose, and your physical condition there may be additional tests and this can vary from place to place and you may be required to take more. While you are having these tests performed, you can simultaneously begin the process of screening for donors. Your donors will go through similar tests and, depending upon the results of those tests, could also be asked to take additional tests. This process for donors can take up to 6 months. It took us about that long for me. Once you and your donor are approved, you can schedule surgery. We are both doing fantastically. All my husband's blood numbers have returned to normal. He can eat a normal healthy diet again, and our lives have returned to a new normal. I cannot recommend the surgery enough. A live donor is always preferable to a cadaver kidney. Once you are ready, have everybody who is willing to get tested get tested as possible donors. Include your siblings, cousins, anybody. If you have no matches, there is a program where you can share kidneys. That means if you have a donor who does not match you, but may match somebody else, then they give a kidney and you get one from somebody else who matches you. There is alot to learn about this whole process. Make sure you take the time to educate yourself, get on the internet, do research and read. Being informed is your best weapon in beating this disease and coming out living a normal life. I hope this helps you. If you want to know more, send a friend request and I will be happy to tell you more about our experience.

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          • #6
            Kim,
            5th stage renal failure is defined as anything under 15% for GFR. If you are under 15% as you state in your post here, and are not on dialysis, you are risking serious vascular problems, bone density losses which cannot be regained and other assorted health issues related to lungs and other body systems...dialysis will at least keep you stable so you need to revisit with your Doctor to get dialysis started immediately. If your body systems become too compromised you may be putting your ability to get a kidney transplant in jeopardy once you do begin dialysis.

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            • #7
              Hello Kim,

              I did not start hemodialysis (HHD training) until my creatinine was in the 6's and a GFR of 9. My nephrologist and I had been monitoring monthly renal panel results for at least 6 months, to be able to establish a trend. As a PKD sufferer, my loss of kidney function was/is the result of cyst growth, and with that the displacement of healthy kidney tissue. I reached those levels in May 2012, but did not start HHD training and hemodialysis until mid July 2012. At the time I started HHD training and dialysis, I was not experiencing any of the physical symptoms of kidney failure and probably could have delayed dialysis for several more months. In spite of being quite anemic, hemoglobin of 9.0, I had no lack of energy.

              My only mental symptoms were daytime somnolence, or the tendency to "nod off" during periods of inactivity - boring meetings, night time television, effectively any situation in which I was not actively engaged in some physical or mental activity. My memory was fine along with writing skills and so on. Your mental symptoms are consistent with a degree of uremic poisoning, e.g. urea build up in the blood stream owed to the kidneys failure to remove this by product of digestion. Presuming that your kidneys will continue their trend of function decline, you can expect the physical symptoms you have cited to follow.

              If dialysis is inevitable, you need to begin planning for it and determining what you will need to do to be ready to start prior to the point of medical necessity and possible hospitalization. Several modalities of dialysis are available and each will have different requirements for access as well as effect on your daily/weekly life. I was able to plan and prepare for HHD and as a result never missed any work - used partial vacation days for 7 weeks of HHD training (including two weeks off for infiltration recovery), and most importantly, I never got sick and was never hospitalized. That has remained the case today, some 2 years after starting HHD at home.
              Last edited by stumpr54; 09-28-2014, 06:06 PM.

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              • #8
                We are just now starting our transplant journey. My husband has PKD and is currently stage 4 with a GFR of 16.....we had no idea it was that low until yesterday. He is in excellent health and we have had him on a low potassium diet for years. I am being evaluated as an exchange donor. Needless to say my anxiety level is quite high. I just finished the blood work phase and am moving to the next stage of tests next week. He has one more test (stress test) before they give him the thumbs up for transplant. I am confident he is a good candidate and our hope is he gets a kidney before he needs dialysis.
                For any of you who have gone through this as a pair - how did recovery go? I have concerns about both of us being limited at the same time. I realize his recuperation time will be much longer than mine, but any tips or hints greatly appreciated!

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