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  • Wanting to hear from recipients about post kidney transplant.....

    I've been on the transplant list almost 5 years....and am on the fence...."do I really want it?". I want to know, if people have had regrets, how many medications are you on now, how long have you had the transplant, would you do it again. I've known that I would need dialysis/transplant for over 5 1/2 years, but only have been on dialysis for 18 months. I'm 62, female, single,still working full time and get treatment at the center. I treat my time there as working a part time job. My indecision is that I know how I feel now, which is good, and if I got the transplant, I don't want to go back to dialysis. I have a good attitude about dialysis, but my opinion about the transplant was different at age 56 than now at 62. Wanting to hear your feedback. Thanks!

  • #2
    Dripper,
    I just had my transplant, and let me say, it was one heck of a experience. I'm at 90 days post transplant. I haven't felt this good since before end stage kidney failure. I also worked full time and went to Dialysis, and I thought I was doing ok, but the truth, I was starting to feel drained, run down, and just tired most of the time. Today, I have so much energy and strength it's unbelievable. I forgot how normal felt. I was on dialysis three years before getting my transplant. Yes, there's a lot of meds, and the anti rejection meds have some side effects, but it's not anything compared to dialysis. I would not hesitate to do it again. There's no comparison, it's like night and day. If you have a chance for a transplant, I would urge anyone to go ahead with it, god has given me a new beginning. My diet is back to a normal healthy diet. I can have dairy products, nuts, potassium, and all the normal foods I couldn't eat while on dialysis. I just eat smart, low sodium/fat diet.. Walk and ride my bike a lot. And work 40 hour a week, without feeling drained. Sleep soundly, life is good.

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    • #3
      chuyjess,
      Best response I've heard in a long time !

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      • #4
        Originally posted by chuyjess View Post
        Dripper,
        I just had my transplant, and let me say, it was one heck of a experience. I'm at 90 days post transplant. I haven't felt this good since before end stage kidney failure. I also worked full time and went to Dialysis, and I thought I was doing ok, but the truth, I was starting to feel drained, run down, and just tired most of the time. Today, I have so much energy and strength it's unbelievable. I forgot how normal felt. I was on dialysis three years before getting my transplant. Yes, there's a lot of meds, and the anti rejection meds have some side effects, but it's not anything compared to dialysis. I would not hesitate to do it again. There's no comparison, it's like night and day. If you have a chance for a transplant, I would urge anyone to go ahead with it, god has given me a new beginning. My diet is back to a normal healthy diet. I can have dairy products, nuts, potassium, and all the normal foods I couldn't eat while on dialysis. I just eat smart, low sodium/fat diet.. Walk and ride my bike a lot. And work 40 hour a week, without feeling drained. Sleep soundly, life is good.
        I needed that! My transplant is in 23 days and I must admit, I am very nervous! I pray i feel, half as good as you

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        • #5
          I am 70 plus. Fourth stage (22). When do you go om dialysis? I had a lung tx Nov 2011

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          • #6
            OK, I'm currently on the 'inactive list' for a transplant (due to work constraints), but my mother had 2 transplants. While it DID relieve her of the constant need for dialysis, she also had to take an inordinate amount of anti-rejection medications, one of which caused her facial features to balloon up. Then, after about 7-8 years, the transplant suffered a vascular failure, and she nearly died on the operating table.

            Then, after another 3-4 years of dialysis, she got a second transplant. This worked well, but after a few years, she developed cancer, and unfortunately, the drugs used to fight cancer were incompatible with those needed for suppressing rejection, and she died at age 76. After talking with my own nephrologist, he agrees that there is a chance she would've survived cancer if she had NOT been a transplant recipient.

            So, there it is. Every choice has it's downside. A transplant will NOT solve ALL your problems, and will likely bring you a few new ones, as well. Although my mom might still be alive today, I'm not sure she would've been happy being 86 and still on dialysis. At the same time, had she not smoked most of her adult life, she probably never would've developed lung cancer, and her transplant might've kept her alive to today.

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            • #7
              Thanks for all your feedback! Keep them coming!

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              • #8
                So great things are going good for you. I'm in the beginning stages of being evaluated and also had the same worries. I'm so glad I saw your post...I can't imagine having a normal energy level. Best of luck to you!! And thank you for sharing.

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                • #9
                  I had my transplant almost 60 days ago, I am 23 years old. I haven't felt this great in soo long! I couldn't be happier with this experience! I hope yours goes wonderfully like mine did/is! Good luck to you!

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                  • #10
                    Amazing! I couldn't agree with you more! I had my transplant almost 60 days ago and it's exactly like what you explained! So happy for you!

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                    • #11
                      To echo and add to dac0214's post remarks, kidney transplantation seems the preferred modality for the youth of the CKD population, and for good reason. They are generally healthier and more active and have a lot more living to do that would be markedly burdened by dialysis of any form. The unfortunate reality is that donated kidneys - live or cadaver have limited lives, which leads the recipient back to some form of dialysis and listing for another transplant.

                      Each transplanted kidney you receive brings the body's potential development of new antibodies, making futher matching and/or managment through anti-rejection drugs all the more challenging. Certainly all kidney transplant recipients are eternally greatful for the gift, and the personal freedom that it provides.

                      It has to be quite mentally challenging to face the failure of a transplanted kidney, and to then re-start dialysis and manage the challenges that it presents. To grow old and pass away from causes unrelated to a successfully transplanted kidney is a most desireable fate, but also one that is rather unlikely. As a result, becoming competent and comfortable with dialysis seems our only recourse until medical science can provide us with a drug to restore our normal kidney function or an artificial kidney or natural kidney that will not require anti-rejection drugs and will last the remainder of our natural lives.

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                      • #12
                        i also am due to go for my 1st consult next week.. i got the booklet yesterday and freaked about the immunosuppressant drug side effects.. i don't want to live an extra 5 yrs. if i'm going to be that sick..i was only diagnosed with esrd 5 months ago, doing dialysis 3 times a week.. i'm so uncertain.. help!!

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                        • #13
                          p.s. i am a 46 yr old female, healthy in every other way(cardiac, liver, mammogram, etc) have had and passed all of the tests with flying colors.. wonder if that will help with the side effects

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                          • #14
                            Hello, I am 52 years old and had a transplant 10 months ago. It was an experience but am doing well. I was wondering does anyone have sleeping problems

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                            • #15
                              I'm addressing this to "Dripper";
                              Your question(s) at the top of this forum can vary depending on your age, work, kids, grandkids, family, donor, faith, etc.
                              Let me start with myself, and why I responded to the this forum. I'm going on 10 years with a cadaver kidney. My mom was set up and on stand-by, when emotionally I could not take her kidney or do this to my mom. I had a kidney on the waiting list - so I accepted that. I drove 2 hrs into California, to tell my mom the news and share my heart. It was an emotional time for me. My wife also wanted to donate her kidney. I was told by my Nephrologist that our two young boys could have Alports Syndrome - so I told my wife she really needs to "save" her kidney in the event one of our boys should get this disease. (they are 18 and 20 with NO side effects!)

                              Yes - at times it gets old reloading the pill box every week, but nothing like going on dialysis every other day. I canít imagine living on dialysis, as I had (have) a family, and was also eager to get back to work (I'm now a Maintenance Supervisor with 6 people under me). I used to bump my transplanted kidney at work. This reminded me of the transplant on a daily basis. The UCSF Nephrologist did mention to me "you are not normal anymore"...that hurt for awhile, but soon realized I am not really normal. I now have Quarterly lab work and follow up visits. USFC calls this kidney "their kidney". (I go to USFC on a yearly follow up) All aside, this is still much better than Dialysis.

                              Back to the "Pill-Box". There was an abundance of meds initially (USFC used a fishing tackle box to store them.) During the first few weeks of the transplant, those meds started disappearing as time went on. I'm still on Cellcept, Prograf, and (small dosage of Prednisone). Along with Allopurinol, Cozaar and Uroxatral...plus a few others (for side effects). I'm asked to see a Dermatologist on a yearly basis due to side effects) But again; this keeps me more mobile in the world than Dialysis. By The Way; I was on Dialysis not more than 6 weeks. (I firmly believe it was a God thing!) I nearly got sent home after USFC found out I was only on dialysis for only 6 weeks.

                              My Energy level is beyond others. I like staying active. My wife and I built a Tri-level house (just before the transplant) We both (still at our age) wake-board and slalom ski. I also bare-foot water ski off the boom. (Yes I'm in the sun - but one also has to live and enjoy this short "vapor in the wind").
                              I plan on retiring soon and owning my own business afterwards.
                              I would never have the mobility I have now - doing dialysis.

                              Dripper there are NO regrets. Would I do it again (even at the age of 53) YES - YES and YES! I'm very confident about this transplant. So confident, that after our two Biological boys have moved out - my wife and I are in the process of adopting a sibling group of 3. If God can give me a second chance on life, why not have a chance to give back to others. We now have Steve (11) Sharon (13) and Will (17) living with us! Sometimes I'd rather go through another transplant then what Iím dealing with regarding these kids! But at the end of the day, there are Rewards that one see's, that makes BOTH experiences in my life well - worth my time!
                              Sincerely
                              "Dad"

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