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  • Kidney Transplant

    Does anyone know if your possible kidney donor has had shingles, whether that would remove them as a donor? Also, what are the possiblities of the "horror stories" I have heard regarding kidney transplants - losing your hair, skin growth over your gums, facial hair, etc.? I am petrified to go into this.

    My mother is my only choice for a kidney transplant and was wondering if anyone knew if shingles would reduce her chances of becoming a donor. I am not on dialysis yet and my numbers are only at a 3.6. I am still feeling fine, have a healthy appetite with no swelling. Do I go into this transplant thing right away or wait until I really start to feel bad?

    My nephrologist meeting is Nov. 19th. at Johns Hopkins in Baltimore.

  • #2
    Hi!

    I was transplanted 2 years ago and also heard the horor stories AFTER the transplant. Though I haven't had a problem with my gums, etc, I have had to have a biopsy for skin cancer, Still waiting on the results. I believe that when it comes to deciding whether you will have a transplant or continue on dialysis, your decision must be based on knowledge and gut instinct. In many ways you trade one set of problems for another. I will say that since my transplant, I've done extremely well except for the skin cancer scare and that is one of my biggest horrors. My diet though unrestricted, I continue to watch fairly carefully. I do enjoy a few of the no-nos that were forbidden on dialysis and dark colas are a really bad fault of mine. I never have had to deal with the "moon face" caused by prednisone and my weight has remained stable. It is seemingly impossible to lose it. Would I do it again knowing all that I know now? Truthfully, I'm not sure. I certainly highly recommend it but not necessarily for me. I had no problems on dialysis and will do home hemo should a rejection occur. That is not something I choose to dwell on but we all know it is certainly a possiblity. Arm yourself with education about the transplant and when the time comes you'll make the right decision for you. I placed my life in God's hands many years ago and together we will make the right decision for me.
    "Within every adversity lies a slumbering possibility"
    Linda
    Tx: 7/28/2005
    St. Louis University Hospital

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    • #3
      I have not had a transplant, but I agree with Linda. Get as much information as you can. Most of the transplantees I meet on these sites are glad they were transplanted. I don't know if shingles will disqualify your mother, but a simple phone call to the transplant center you plan to usse would answer that. Certainly let your nephrologist know of your interest in transplantation. He/she will be the key to your getting approved to do it whether or not you have a living donor lined up. The nephrologist will also be a key source of information regarding the pros and cons of transplantation.
      To the stars through difficulty!

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      • #4
        Hi there --

        I am two weeks post transplant, and as of this moment, I am doing very well. I haven't had too many side effects from the medication, and my creatinine dropped from 13 to .9 after the transplant. After being on dialysis for a year, I do feel better and I do feel like I have been given a second chance. I don't know about your shingles question, but I can tell you that there are a lot of resources available. I am also on this message board... http://www.transplantbuddies.org/tbx...tml?1190075302 .

        This is mainly a transplant board and everyone there is very knowledgeable. They might be able to answer your shingles question. Remember, not everyone experiences those side effects, and there are many people who have had successful transplants with little or no complications. Talk to as many people as you can and start the process now. It took me a year to complete the testing and meetings with the transplant team.

        Good luck!

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        • #5
          Transplant Possibilities

          Thank you all for your support and sharing of your experiences. I simply don't know what I will do if my mother is ruled out as a donor. I have no one other than her. I am going through depression just thinking about all this and putting my mind, body and soul into the hands of God isn't an easy task for me. I am scared of what I face and my parents have not been very supportive. They simply clam up when I talk about my disease. They think I have a common cold that will eventually go away. I'm simply frustrated that I'm facing a brick wall. Thanks again for your support. Scotty beam me up!!!

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          • #6
            Maybe your folks would be receptive to an educational seminar about kidney disease. This month there is a push for kidney health education and there are lots of seminars being given. Check with your dr. and the local dialysis center to see if there is going to be one in your area. If they are computer able, you might have them go to www.kidneyschool.org and go through a few of the modules to educate themselves about kidney disease. Good Luck.
            To the stars through difficulty!

            Comment


            • #7
              Originally posted by LindaE View Post
              Hi!

              I was transplanted 2 years ago and also heard the horor stories AFTER the transplant. Though I haven't had a problem with my gums, etc, I have had to have a biopsy for skin cancer, Still waiting on the results. I believe that when it comes to deciding whether you will have a transplant or continue on dialysis, your decision must be based on knowledge and gut instinct. In many ways you trade one set of problems for another. I will say that since my transplant, I've done extremely well except for the skin cancer scare and that is one of my biggest horrors. My diet though unrestricted, I continue to watch fairly carefully. I do enjoy a few of the no-nos that were forbidden on dialysis and dark colas are a really bad fault of mine. I never have had to deal with the "moon face" caused by prednisone and my weight has remained stable. It is seemingly impossible to lose it. Would I do it again knowing all that I know now? Truthfully, I'm not sure. I certainly highly recommend it but not necessarily for me. I had no problems on dialysis and will do home hemo should a rejection occur. That is not something I choose to dwell on but we all know it is certainly a possiblity. Arm yourself with education about the transplant and when the time comes you'll make the right decision for you. I placed my life in God's hands many years ago and together we will make the right decision for me.
              Linda, I would be very interested in hearing why you would not necessarily choose transplant if you had the choice again. I am in the process of transplant evaluation. Tomorrow we test potential donors and I am trying to find out as much as possible from those who have been through it, both good and bad. I have never been on dialysis, so I can't compare that myself, although I was my mother's caregiver for a year while she was on PD and that was a horrible experience for her. Of course, she other health issues and didn't live to see the year out, but it really colored my opinion of dialysis. It's certainly something I would hope to avoid. So, that being said, I need to know also the negatives of transplant. Thanks!
              It's not about waiting for the storm to pass, but learning to dance in the rain.

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              • #8
                Bad Drawbacks to Transplant

                MissedTheBoat - from what I have heard, most bad drawbacks to the transplant are the drugs they put you on, especially the steroids which gives you weight gain, growth of facial hair and Moon Face. From what I have also heard, the effects of the medication does not affect everybody the same way. I myself am trying to decide if it is better to wait this thing out or go head first into the transplant - the problem is the fact that I'm not on any restrictions now and so question if being on drugs and steroids the rest of my life is worth it. I'm 42 now and feel fine - creatinine is at 3.4. What is your creatinine level?

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                • #9
                  Hi again, Bikerchick. Yes, I have been reading about the side effects of the medications and have to admit, they give me pause... I asked at my center about the prednisone. They don't like to use it and will only use if my blood has been sensitized by transfusions. I was on presnisone years ago for Crohn's disease and have to say, I really don't look forward to those side effects. The moon face was annoying, but having light hair, the additional facial hair was barely noticeable. The worst part was the increased appetite and surge of energy that kept me from sleeping at night. I would be up at 2am cleaning, or snacking. I gained 20 lbs on prednisone. It also can cause bone loss.

                  It is hard to trade feeling ok with CKD for the other side effects of the medications, especially when I don't feel badly, but I keep thinking about what it would be like when I really do need dialysis.

                  My creatinine right now is 4.0, which based on all the other results is giving me a GFR of 11.5. The guidelines my dr uses is GFR of 15 with diabetes = dialysis. GFR of 10 without diabetes =dialysis. GFR of 20 or less qualifies you for a transplant.

                  When I start to doubt whether or not I should go for the transplant, I just think of that big bowl of macaroni and cheese with a chaser of New England Clam Chowder that I'm dying to have! Maybe I'll follow it with a hot fudge sundae...
                  It's not about waiting for the storm to pass, but learning to dance in the rain.

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                  • #10
                    shingles

                    i had my tranplant in august. i develop what you call cmv. it is a virus that is like the chicken pox virus which some people get shingles. about 60 to 80 pecent of the poplulation have the cmv virus already have the virus which generally stay dormit in a healthy person. when you have a tranplant it sometime will become active in my case it did. i found out my donor was also positive for the virus. i had a cadvier donor. i was sick for three month before they finally got it back in remission. because of the virus i had a bad rejection episode and had to be hopitalized for a week. there is medicine they now give you to possablly help prevent the virus from becoming active. i wasnt so lucky i still went active. i now have to see a infectous diease doctor to montior me closes because the virus can come out of remission. don/'t let that stop you from going froward with your tranplant im now full of energy and don/'t regret getting my new kidney. good luck

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                    • #11
                      Deciding Which is Best

                      MissedTheBoat - yeah, I'm in the same situation you are. I'm at a 3.4, I feel fine, but the diet sometimes depresses me. Which do I choose - transplant with medications and side effects or trying to delay the disease with diet and exercise only to lose my one and only donor because of age? I'm not on dialysis and hope to delay it for a long time, but one never knows the path we are heading into. I cheat occasionally, but would really like a slice of pizza with a cold beer - a baked potato with sour cream and a bag of potato chips with some onion dip! Well, now that we are all drooling, it's back to reality.

                      I have one more week before I head down to Johns Hopkins in Baltimore. If my mother doesn't make the donor list because of the testing, then I will refuse dialysis as long as possible. I can't afford to lose my job at any rate!

                      Good luck with your path. Thanks for your support. Best regards,,,,

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                      • #12
                        You don't necessarily have to quit working because you are on dialysis. And you don't necessarily have just one donor. You can get on the transplant list. Be aware that a transplant doesn't mean you'll never need dialysis. They can fail after a number of years.

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                        • #13
                          I understand that a transplant isn't a cure but a treatment. So I know what you mean about the fact that it can fail from the point of surgery onward. I'm not planning on "quitting" work, but where I work only allows two months of disability - after that, my boss said he probably would find a replacement - he can't afford me being out any longer than two months. So, I have no other option but to delay dialysis as long as I can - otherwise, I'm out of a job if I don't return to work after the two month disability.

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                          • #14
                            Start researching types of dialysis as well. I was on PD before my transplant and it allowed my days free and I did dialysis at night. There are also home hemo programs where you do your treatments at night, allowing you to work during the day.

                            And if you start the transplant process now, you can start accruing time on the list now, so by the time you need dialysis, you might be up for a cadaver kidney. It's a very long process, but know that as a kidney patient there are a lot of options out there.

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                            • #15
                              Working While On Dialysis

                              When I Started Dialysis I Took Less Than A Month And Was Back To Work Full Time For two years And Did Well Up Till March of 2007 When I Got Really sick. I Now Have My Tranpant And Hoping To Return To Work In The Near Future. Maybe You Won't Need To Much Time Off And Will Just Take to Dialysis Fast. Good Luck. Sheila

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