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As of this Thursday I am on the transplant list!!!

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  • As of this Thursday I am on the transplant list!!!

    Just got the call today. I will officially be placed on the transplant list this Thursday. Three people already have said they will be tested.

  • #2
    Congrat and pray that all keeps going well for you. I had two and one is illuminated. The other is in the process of testing. Because of age this too may not happen. God is control and I pray the best for you. I relate to you because we started dialysis about the same time. Keep positive. It is the only way to survive staying healthy with this disease.

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    • #3
      Originally posted by kcramer View Post
      Congrat and pray that all keeps going well for you. I had two and one is illuminated. The other is in the process of testing. Because of age this too may not happen. God is control and I pray the best for you. I relate to you because we started dialysis about the same time. Keep positive. It is the only way to survive staying healthy with this disease.
      Thanks, I wish you best of luck as well! I have remained very positive (thanks to a great support system in place)!

      Comment


      • #4
        Hello rickster12,

        This is great news. Chances are your medical support team and the folks managing the transplant program have provided you with the information you'll need to properly manage your expectations about the live donor and cadaver donor transplantation processes. Here is some additional knowledge that I've picked up from posts on this website and other reading.

        Transplantation is a demanding course for both recipient and donor. The medical approval process for both is long and very expensive, with no guarantees of approval for either. The health requirements for donors is even more stringent as their longevity cannot be compromised by the loss of a kidney.

        Transplantation is major surgery, which typically requires three days of hospitalization. Recovery is more difficult for the donor than the recipient owed to the invasivness of the surgery. There is no assurance that the loss of a functioning kidney may not degrade overall kidney function, e.g. increase in creatinine, reduction in GFR, immediately or over time. The recipient medication requirements to prevent rejection are extensive and expensive. There is a constant threat of infection from even the common cold because of a repressed immune system (needed to prevent rejection of the transplanted kidney).

        There is only a general range provided on the useful life of the donated kidney - living or cadaver. The variables that go into determining how long the transplanted kidney will survive are myriad. I just read an article in my city's Sunday paper about a middle aged man who is looking for his second kidney transplant. He is currently on hemodialysis three days a week, and it is taking a toll on him. He was quite surprised when the kidney donated by his sister some 10 years ago recently failed. Even with excellent genetic matching, as in this fellow and his sister's case, the donated kidney failed to survive for more than 10 years. Under ideal circumstances, a live donor kidney can be expected to survive 15 to 20 years. A cadaver kidney can be expected to survive 7 to 12 years. Even these are gross estimates.

        There are many individual contributors to these forums who have been transplanted several times, generally starting at a fairly young age. Nearly all of them had to undergo dialysis at some point to remain healthy while waiting for a transplant.

        I had 10+ years to think about and plan future actions to respond to a PKD diagnosis that would lead to eventual kidney failure. I was accepted for a kidney transplant in January 2011. I had an AVF (fistula) placed in October 2011.

        I started home hemodialysis training, and with it hemodialysis, in July 2012. I was not sick and did not have any physical symptoms of kidney failure, though my creatinine (6+) and GFR (9) and BUN (60+) told a different story. I had the full support of my spouse/care partner and a competent HHD team, including my nephrologist of 10+ years to assist me in the effort. I was listed with a second kidney transplant program in November 2012.

        I've now been waiting for a cadaver kidney for over 3 years. When I was first listed I was told that with my Type O blood, it would take between 3 and 5 years before a cadaver kidney would be become available. In the mean time, I must submit PRA/HLA blood antibody samples monthly to each kidney transplant program and undergo periodic testing to remain active on their respective lists. The additional testing is at my expense. I must also visit with the respective transplant program's coordinator, transplant nephrologist and social worker every 6 to 9 months. The hoops I have to jump through just to remain on the transplant list are appreciable.

        If transplantation had been my only strategy to assure continued life, I would not be writing this today. HHD has given me the freedom and flexibility to continue an active work and play life and provide me with the good health needed to stay qualified for that elusive and eventual kidney transplant. I'd like to hold out for as long as I can, staying on my HHD regimen, knowing that there are plenty of unknowns with a kidney transplant not the least of which is the life of the graft (transplanted kidney), and the strong likelihood that I will be back on hemodialysis before I reach end of life.

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        • #5
          Wow, sounds like the HHD is working for you. I am also active with work (40 hour/week job) and am active socially (have two Godkids and nephews very active in sports so I go and often take them to the games) and as a fan of baseball I manage to go to about 25-30 games between major and minor leagues. In the winter, about 5-6 trips to the local minor league hockey team. I am 46 now so I realize even if I make the 20 years a live donor (the high end) would allow, I also likely would be in the same situation in my lifetime. Understanding the risks, someone called in on Friday and at that point was deemed a viable match, now she has to go through the actual medical testing. Also a cousin is about to do the same. If either is a match, and either then agree to actually donate I will go for it. While I am still able to be a part of a lot of what my Godkids do, there is still a lot I'm missing out on. Plus I love traveling. Disney, Myrtle Beach and this year, hopefully Italy for two weeks. Trying to travel and manage dialysis is, putting it simply, difficult.

          But good luck to you, I hope you have continued success with the HHD!

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          • #6
            Well I had a viable match, however due to the early portions of the testing, she has been ruled out as a donor at all. Health risk to her would have been too high. Disappointed, but if it would have jeapordized her health, I am glad they didn't let her.

            Comment


            • #7
              Hello rickster12,

              The "Astronaut Physical" that must be passed to be an eligible donor is quite demanding. The medical profession's Hippocratic Oath, "First, do no harm" plays a key role in donor selection. Any evidence that the donor's health could be worsened through the kidney removal surgery or facing life with one kidney, will generally disqualify them as a viable donor. Young donor's who have the clean health histories that older donors often do not, are the ones who have the best chance of qualification as older donors have a greated tendency to develop chronic medical conditions that require restrictions and medications for optimal health management.

              The first program that I listed with has a donor requirement of no blood pressure medication to manage high blood pressure. The second progam that listed me has a donor requirement of no more than two BP medications to manage blood pressure. These are just pre "Astronaut Physical" requirements.

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              • #8
                I had to jump through major hoops to be cleared as a donor. While I (A) am not a match for my husband (O) who has PKD, I want to do a paired exchange.And yes, the testing is extraordinary! Many visits to the hospital, doctors, labs... But I'm in this for the long haul. There have been some crazy test results that have necessitated even more testing for me. A false high blood pressure reading lead to a 24 hour pressure monitor. My pressure is fine, but I had "white coat" syndrome. They took my pressure after detailing all the things that can go wrong with donation! My mandatory colonoscopy resulted in a perforation in my throat. Not kidding. I coughed under anesthesia and they had to suction my throat. Oops. A perforation which lead to a hospital stay, stitches and IV antibiotics. Then I appeared to "fail" three 24 hr urine tests. That lead to a radioactive tracer test of my kidneys. Turns out as a petite, female vegetarian, my urine clearance results show up as less than desirable (56% kidney function...wrong!). Nope. My kidneys are excellent. The point is even though the testing is an "astronaut physical" and even my husband said "give up", I would not. Today I got the call that I am accepted as a possible donor! I just need a CT scan and a meeting with the surgeon. I am stubborn as all hell. After spending some time in the dialysis unit with my husband (keeping him company and watching the World Cup) I am more determined than ever to be a donor. Here's hoping we find another couple or group in the same straits as those we're facing. In any event, if he gets a kidney from a cadaver or altruistic donor, I still feel the need to donate.

                Comment


                • #9
                  Congrats!

                  Originally posted by rickster12 View Post
                  Just got the call today. I will officially be placed on the transplant list this Thursday. Three people already have said they will be tested.

                  If you have time, will you enlighten me and some other CKD patients about starting the process of getting on the Transplant List? I have been told I can be evaluated by a transplant hospital by making an appointment on my own. Now, Piedmont Hospital in Atlanta says the Nephrologist has to request the evaluation.

                  Can I be evaluated at any Transplant Hospital, or do I have to go to the Hospital that is the preferred hospital of the Nephrologist? The doctor has privileges at three hospitals -- two of which are closer to my home than Piedmont for the sake of my family and friends.

                  How do I find out each particular hospital's restrictions/regulations for being accepted for transplant (without having to first make an appointment and talk to them). Example: I was told by my Nephrologist that a live donor's BMI must be no more than 30. I heard a podcast yesterday that said Cedar Sinai Hospital will accept a live donor with a BMI of 40.

                  Again, if you have the time to help me and others, or if you have a link to a webpage that comprehensively explains the process, please let me know! Thanks.

                  Congrats on getting on the List!!

                  Marcia

                  Comment


                  • #10
                    Originally posted by mhusband27 View Post
                    If you have time, will you enlighten me and some other CKD patients about starting the process of getting on the Transplant List? I have been told I can be evaluated by a transplant hospital by making an appointment on my own. Now, Piedmont Hospital in Atlanta says the Nephrologist has to request the evaluation.

                    Can I be evaluated at any Transplant Hospital, or do I have to go to the Hospital that is the preferred hospital of the Nephrologist? The doctor has privileges at three hospitals -- two of which are closer to my home than Piedmont for the sake of my family and friends.

                    How do I find out each particular hospital's restrictions/regulations for being accepted for transplant (without having to first make an appointment and talk to them). Example: I was told by my Nephrologist that a live donor's BMI must be no more than 30. I heard a podcast yesterday that said Cedar Sinai Hospital will accept a live donor with a BMI of 40.

                    Again, if you have the time to help me and others, or if you have a link to a webpage that comprehensively explains the process, please let me know! Thanks.

                    Congrats on getting on the List!!

                    Marcia
                    Thanks.

                    First find out what centers in your area do transplants and then find out which ones are covered as in-plan with your insurance. That is very important as if you pick one not in plan, you will find yourself with a new kidney, and a humongous bill to go along with it. I was referred by my nephrologist. Then they set up an appointment for you to go through some testing and information (usually 6 hours or so) at that facility. You will meet with the surgeon, a nephrologist, social worker and nutritionist during that time and undergo testing (there will also be other testing that needed to be done, I had to do a nuclear stress test, echocrdiogram, EKGs, dental clearance, have my stool tested (because of findings I had to have a colonoscopy done). Then the doctors will put you in front of a panel and they will decide if you qualify. Once on they take monthly tissue testing samples and yearly you will have to repeat the tests. Good luck!

                    Comment


                    • #11
                      Hi Rickster,
                      My husband and I are 64 days out of live kidney transplant surgery. We are both doing fantastically. I am the donor and he is the donee. If none of your donors match you, they can go into what is called a kidney sharing program. That means that they will be matched to a stranger who will get their kidney, and you will be matched to a stranger who will give you their kidney.

                      Live kidney transplantation is the preferable medical solution and the preferable life solution for you. Do not listen to the negative feedback you may get from others. Kidney transplantation is the most successful organ transplant surgery of any type today. That is a fact. The donor testing process is thorough but not painful . That is also a fact - I know - I went through it. Whether you are insured or not, there are programs in place to help you with costs and that includes pharmaceutical companies who can and may help you with drugs.

                      Fear is a powerful emotion and it has a tendency to stir up negativity in people. Do not let fear drive you or stop you. Educate yourself so that you can tell the difference between inaccurate opinions and real information and stay positive. Those two weapons are the best ones you can have in your arsenal as you fight against this disease.

                      Comment


                      • #12
                        Hello lovingwife1,

                        I have been listed with two different kidney transplant programs for 3-1/2 years. While each program sings high praises for kidney transplantation, each also provides the less than encouraging statistics on transplanted kidney longevity, both cadaver and living donor. Regrettably, kidney transplantion is only a temporary solution for many sufferers of kidney failure, with the average transplanted kidney lives of 5 to 10 years for a cadaver kidney and 7 to 15 years for living donor.

                        The regimen of anti rejection and other meds to which a donor recipient must doggedly adhere, bring about an array of potential complications, and increased disease suceptibility, owed to a constantly suppressed immune system. The immunosuppressants are actually toxic to the kidneys and other organs, which is one reason why the transplanted kidney fails after years of exposure to these drugs. Transplant recipients are at an increased risk of many cancers, not the least of which is skin cancer.

                        The kidney donor is at increased risk of loss of kidney function. Donor testing cannot tell conclusively if the work being done by the two kidneys is balanced, e.g one kidney may be doing 70% of the work. If that kidney is removed, the remaining kidney may not be able to function sufficiently on it own, and that "loss of kidney" function could result in CKD. There are instances where donors have been rejected for medical insurance coverage (pre Affordable Care Act) owed to their loss of kidney function being treated as a pre-existing condition. Even with the Affordable Care Act, insurers cannot reject for a pre-existing condition and/or medical history, but they can charge questionably affordable increased premiums.

                        There is no question that kidney transplant recipients are capable of the best quality of life one can have after kidney failure. Unfortunately, that quality of life comes with the price of a lifetime (or for the life of the transplant) of a daily regimen of powerful medications, the constant risk of infection, illness and disease, and most important of all, an unknown expiration date for transplanted kidney that is only of real consequence for recipients well under retirement age.

                        There are contributors to these Forums who have had 3 or more transplants through their lives, usually receiving that first transplant in their teens or twenties. These folks are typically no strangers to dialysis, as it is dialysis that allows them to keep living until they receive the next transplant. That wait can be mere weeks or months for those fortunate to have acceptable living donors or years for those waiting for a cadaver kidney.
                        Last edited by stumpr54; 09-12-2014, 01:47 PM.

                        Comment


                        • #13
                          Originally posted by lovingwife1 View Post
                          Hi Rickster,
                          My husband and I are 64 days out of live kidney transplant surgery. We are both doing fantastically. I am the donor and he is the donee. If none of your donors match you, they can go into what is called a kidney sharing program. That means that they will be matched to a stranger who will get their kidney, and you will be matched to a stranger who will give you their kidney.

                          Live kidney transplantation is the preferable medical solution and the preferable life solution for you. Do not listen to the negative feedback you may get from others. Kidney transplantation is the most successful organ transplant surgery of any type today. That is a fact. The donor testing process is thorough but not painful . That is also a fact - I know - I went through it. Whether you are insured or not, there are programs in place to help you with costs and that includes pharmaceutical companies who can and may help you with drugs.

                          Fear is a powerful emotion and it has a tendency to stir up negativity in people. Do not let fear drive you or stop you. Educate yourself so that you can tell the difference between inaccurate opinions and real information and stay positive. Those two weapons are the best ones you can have in your arsenal as you fight against this disease.
                          Yup, my current potential donor is going to do that. She isn't a match for me. The first person was deemed not a viable donor due to health issues. Someone in my center was part of the paired exchange (a three way) back in December. I actually was the one that made her aware of the option. Thankfully she agreed!

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                          • #14
                            Despite the fact that I have someone doing the paired exchange, I still want to get listed in a second region. I have learned that nothing is guaranteed until the surgery is actually starting. I wanted to go to Westchester Medical Center in NY (which is actually closer to home than where I am listed here in CT) but the hospital is not contracted with my insurer (UnitedHealthcare) and I do not have out of network benefits for transplants. So I am looking at Mt. Sinai in Manhattan which I know is an excellent facility.

                            Comment


                            • #15
                              While I have been having a much better experience with dialysis than some (my biggest issue is too low BP during dialysis and some light-headedness the day after) I don't want this to be my life the rest of my life. I realize that I will have to be diligent with my medication and diet/water intatke the rest of my life, but I am looking forward to more ease of travel and being able to do things without first seeing what day of the week it is.

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