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  • How many transplants can you get?

    Hi,
    I'm just wondering how many transplants can you get?

    Is there a limit in the US?

    would it be 2 or 3 or 5?
    I have not read or managed to find out about this and have not had my questions answered by the "medical professionals", lol here.
    I was told "it varies" (meaning they did not like my question).

    Also anyone know at what strenghth your heart has to be for that surgery or others?
    I was told my heart function right now is 20%? if that sounds right.

    Also are they supposed to do some heart tests on you, because they didn't the last time for me.

  • #2
    The reason that you get the answer "it varies" is because it really does vary. First of all, each transplant group has slightly different qualifications for transplant. Second, the number of transplants in a lifetime would partly depend upon the age at first transplant. A person who received a first transplant as a child or young adult might need more transplants than someone who got a first transplant at an older age. Third, eligibility for a second transplant might depend in part on how well the person took care of the first one -- were all protocols followed?? Fourth, each time a person needs a transplant a new evaluation procedure is performed and it is possible that the general health status of a person could decline to a point that a transplant would not be approved a second or third time around. I don't know about the answer to your heart function question, but that level sounds pretty low to me.
    To the stars through difficulty!

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    • #3
      Hi,
      well thanks for the info and comments.
      I know it is different for everyone but I was just wondering of people's general experiences also.

      For the heard rate I was told that most people their function in tests is usually 50% or so , the doctor was trying to explain that to me and I forget what the name or the test was for that but it was kind of complicated.

      The other thing was for my transplant, I did not do anything "wrong" or take bad care.
      It was actually the staff and doctors that screwed up my orders and were negligent.
      I'm not going to get into every single small detail, but I do have all the proofs ect...

      Hopefully I can qualify to get surgery somewhere else I really hope.
      I really do not think I can trust the medical people where I am. The US sounds like they are more responsible anyways.

      But I have to wait almost 1 year to do all the tests as there are waiting lists of 6+ months for the tests here and your name goes in with all the "regular" other patients.
      So doing all the tests can take 1-2 years.

      Comment


      • #4
        Personally, I just take what life gives me. I'm 59 years old and will probably never get a transplant. Life on dialysis isn't that bad so I look at every day as a gift. I still do most of the things I did before and I prefer not to think about what will happen several years from now. Who knows, with all the medical research, we may have a cure for CKD soon.
        Whatever does not kill me makes me stronger...Neitzsche
        Flip

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        • #5
          I've heard of someone getting 5 transplants, but I don't know if there is a limit or not. I also don't know about the hear thing...Sorry
          Shannon
          KidneyFun // Kidney Korner // Organ donation awareness products!
          If the world didn't suck...........We'd all fall off!

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          • #6
            Number of transplants

            I had my 1st transplant at the age of 19 and my 2nd last year at 34 (just before 35). The first time around my body took to the transplant and immunosuppression really well. I had several units of blood before my 1st transplant and several while in the hospital numerous times before and during my 2nd transplant. I am hopeful that this transplant will last a long time (first one was almost 12 years). As flipw said, perhaps there will be a cure for CKD in the future. If not, I will be prepared for dialysis again (hopefully a LONG way off) and I hope they will tell me I would be eligible for another transplant. Of course, I would be in another whole group as far as risk factors. I was told for my transplant last year I was still young and healthy and had a good chance for another successful transplant.

            I have met others at kidney walks for the NKF that have had 3 or 4 transplants... wow.
            I think it differs for everyone considering their medical history, risk level, number of blood transfusions, etc. Each blood transfusion alters your antigen level and makes it harder to find a match. There is that plasmaphresis treatment that can be done prior to receiving a transplant.... but you should research that more.

            If anyone here has had multiple transplants in the course of their life, they should put their 2¢ in... it might shed some light.

            Blessings and Be Well....
            PurpleGirl
            Knowledge is Power!

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            • #7
              number of transplants

              My transplant surgeon says he has patients with 6 kidneys. That means 4 transplants. That is the head of kidney transplants at Cedars Sinai in L.A.

              LuckyMe

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              • #8
                I am a five-time kidney transplant patient. I had my fifth kidney transplant in 2012. I have been an End-Stage Renal Disease Patient since 1960. I had my first kidney transplant Jul 16, 1968, at the age of eleven. My research on this topic has revealed the following: Three transplants are usually the maximum; fou transplants are extremely rare; and, five kidney transplants are very rarely performed. I have been receiving dialysis intermittently for over forty-six years. I have have over ninety (90) major surgeries, including the five kidney transplants. I am told by my surgeon that I am the only five-time successful kidney transplant. Understand that each patient is different. This is why an evaluation is performed before each transplant to determine the patient's physical and psychological status as to whether or not the patient would fair well with a transplant. A heart-stress test is usually performed before a transplant to determine if the patient will be able to withstand the surgical procedure. The heart mus be strong enough, as determined by the transplant surgical team.

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                • #9
                  Originally posted by Fivetimer View Post
                  I am a five-time kidney transplant patient. I had my fifth kidney transplant in 2012. I have been an End-Stage Renal Disease Patient since 1960. I had my first kidney transplant Jul 16, 1968, at the age of eleven. My research on this topic has revealed the following: Three transplants are usually the maximum; fou transplants are extremely rare; and, five kidney transplants are very rarely performed. I have been receiving dialysis intermittently for over forty-six years. I have have over ninety (90) major surgeries, including the five kidney transplants. I am told by my surgeon that I am the only five-time successful kidney transplant. Understand that each patient is different. This is why an evaluation is performed before each transplant to determine the patient's physical and psychological status as to whether or not the patient would fair well with a transplant. A heart-stress test is usually performed before a transplant to determine if the patient will be able to withstand the surgical procedure. The heart mus be strong enough, as determined by the transplant surgical team.
                  Fivetimer,

                  Do you know what your antibody level is? Congrats on the 5. I have had 3, my first at the age of 11 as yours was. I have now been on dialysis for over 20 years... waiting for technology to catch up to my immune system....

                  As long as you meet the qualifications and medically able, there is no set limit of the number of transplants...
                  ______________________________
                  PD - 13 Years
                  3 Transplants
                  In-Center Hemo - 6 Months
                  NxStage - Since April - 06
                  Facebook: Dialysis Discussion Uncensored

                  ________________________________

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                  • #10
                    Hello, I just receivd my 5th. kidney transplant on April 16, 2013. Getting 5 are very rare, as fivetimer mentioned. I had my first 1979, just turned 15. Second was 1981. Third was 1987, Fourth was 1996 ( had it 11yrs. ) The first 3 were not seccessful. Since I am still very health, I was able to try for number 5. Was not very hopeful though, my PRA levels ( antibodies ) were in the high 90's. Due to blood transfussions in the past and prior transplants. I had such a good experience with number 4, I wanted to try again. I figured if I wasn't on a transplant list, I had no chance, a very low percent chance was still better than no chance. I stayed hopeful for almost 5yrs. on the waiting list. Then April 16, 2013, I got the call. they said I was primary. The transplant team was as shocked as I was. Now I praying that I can keep this kidney for a very long, long time. Since there isn't a crystal ball, you never know when your transplant will go bad. It can happen so fast. No promises on who long it will last. Good Luck to everyone who is waiting, that they will get their needed transplant soon and for those who already have one. Hugs!

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                    • #11
                      I've had four transplants and I am being evaluated for a fifth, but it's likely a long shot because three of my transplants have been open abdominal surgeries, which is just really hard on the body. But we'll see. I still - amazingly - have a zero PRA, so I look like a good candidate on paper anyway. That and a couple of my transplants lasted quite some time - I had my first transplant in 1974 at the age of 8, but I caught an infection about two months after and just could not keep it and fight the infection, so it lasted only a year; second was 1975 and lasted 14 years ; third transplant was in 1989 and lasted 15 years; fourth was in 2004. I'm currently down to about a 19 GFR with a 3.4 creatinine, but I'm only on a modest renal diet and no dialysis yet. Things could be worse.

                      Of interest, I do know of one person who had seven transplants, but I suspect that was a very unusual case.

                      Comment


                      • #12
                        Hello Criminy,

                        I just did the math on your transplant wait time - less than 1 year per, and the only way you could be getting donor kidneys at that rate would be having a veritible team of live donors who are at your beck and call. This is certainly an envious situation and not one that is representative of the the population of kidney failure patients at large.

                        While the requirements for receipients are stringent, the requirements for donors are even moreso, as the medical profession's Hippocratic Oath, requires, "First Do No Harm". The donor must be in nearly excellent health so as not to face some diminishment of quality of life or health as the result of the loss of a kidney.

                        I have read of instances where donors end up with increases in creatinine as the result of their dontation and are declined health insurance and/or experience increased premiums because of the decline in kidney function and/or the diagnosis of kidney disease.

                        Each successive transplant typically results in the development of more antibodies, whose presence makes donor matching all the more difficult for successive transplants and donors.

                        Your situation is certainly an unusual one, but one that is reflective of the varation that is present in individuals and medicine.

                        Comment


                        • #13
                          Hi Stumpr54,

                          Yes, admittedly I have had a number of readily available kidney donors. The first two organs came from my mom and dad respectively. Now, my third transplant organ came from cadaver, but it was done back in 1989 and the UNOS list was run a little differently back then. There was a significantly greater problem with kidney stabilization and rejection than there is now, particular for patients with higher PRAs. So, the UNOS selection team put list patients in two groups: group A were those consider high rejection risks and group B were low rejection risks. When an organ came up, the UNOS team would match it first to someone from group A, but would also pull someone from group B as a backup because the group B people could pretty much automatically take any organ that was available. Group A then ended up being the "main patient list", as it were, and contained the majority of patients. I, for some unknown reason, have a very unusual immune system - my body does not make memory cells - reactive antigens. Consequently, after two transplants I still had a 0 PRA, so I was put into the low rejection risk category. And back then, the group B list was very short, so I ended up being called as a backup after seven months and then ended up with that kidney. With improvements in immunosuppression therapy and drug balancing, patients are no longer selected that way.

                          And yes, you are correct about the donor health requirements, among much else. My teams have all been quite stringent about the health of the donors. My last donor - a friend from high school - now has a slightly elevated creatinine level and it shows up as such when she goes in for her physicals and other checkups. Outside of that, she's doing fine though and insists she'd do all again knowing what she knows now (for instance, her recuperation was pretty rough).

                          So we'll see. I'm not sure what's going to happen down the road - whether I'll be approved for a 5th transplant and, if I am, whether I'll go through with it. While the energy level, independence and lack of diet is fantastic, the surgeries and recuperation are not easy. And even getting back into the routine of clinic visits takes adjustment. And then there's the inevitable decline, which really is psychologically trying. But, we have to do something I suppose...

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                          • #14
                            Hello Criminy,

                            Thanks for the information rich reply. I've been listed for just over three years for a cadaver kidney and am on two different kidney transplant program lists. My wife is the same blood type as I and could very well be a live donor, though having both of us recuperating from the surgery is not something I relish.

                            Before I started HHD training and with it hemodialysis, I had already be listed for a kidney transplant and was leaning in that direction. After nearly 20 months of HHD, I find myself quite a bit more reluctant to consider a transplant than I would have expected. This is because I have assimilated HHD into my daily life in such a way that it imposes only minimally on my active work and play life style. This would not be possible without the daily assistance of my spouse/care partner and the support of my expert HHD medical team.

                            I have viewed the HHD process as one that can be continuously improved through the reduction/elimination of waste and variation. Any activity that engages you several hours a day, 5 days a week, provides all manner of opportunity for improvement. It has been a challenge at times. but a challenge that my team has faced with enthusiasm and has prevailed. I enjoy many aspects of the routine and the repetitive tasks that must be performed correctly and consistently to assure a successful treatment.

                            Along the way, I have developed an extensive assortment of enhancements and process improvements that assure repeatability and minimize variation. Having control over my health through the treatments I conduct is remarkably empowering. Seeing excellent lab results every month is rewarding. Being able to do all that I did before HHD greatly diminishes the impact of the nearly 20 hours per week that I must "schedule" to fulfill the requirements of the modality.

                            Because HHD has turned out to be a good gig for me, the unknowns associated with transplantation, in spite of the freedoms that would come from that transplantation, make me hesitant. If and when I get that call, I very well may say, "give the kidney to the next person on the list, I'm doing fine with my OE parts."

                            Comment


                            • #15
                              Stumpr,

                              Thanks for the info! I confess, I don't know much about HHD. It wasn't an option when I have done dialysis. I must say, dialysis was a bit of nightmare back when I did it in the 70s and 80s. It was all manual back then, so getting fluid levels right was a function of accurate eyeball estimation. Cramping, nausea, headaches, and blood pressure crashes were all really common. Needless to say, I have a bit of a phobia of dialysis even knowing how much it has improved.

                              I am curious though - I see where you say you are on it 5 days a week, but how long is each session? Where's your port and how does connecting to the system work? That is, do you have a AV fistula or have ports changed? And if you do have a fistula, do you connect to the machine yourself or does your wife stick the needles in? I ask because while I'm ok giving myself something like sub q Aranesp, after 40 years of immunsuppression therapy, my hands are not steady and I don't think my wife could put the needles in that I remember from my dialysis days.

                              I must say, I am really happy to see that its a minor inconvenience and a routine part of your life at this point. That's really cool. I can definitely understand your hesitancy with regard to unknowns of transplantation given your fulfilling life. Transplant certainly has it's share of issues. Problems that are a concern for most folks can be major issues for those of us with a transplant. As an example, I was in the hospital for a week with the flu and managed to get C diff on top of it due to my immunosuppression. And while the freedom is great, the thought of rejection or infection is ever present. So yeah, I would imagine that if you've got a good life, why fix what isn't broken?

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